Where did it go? seriously? I know everyone is probably asking the same thing, as they do when they get older the years go quicker. Oh to be a child again thinking the years are so long and dragged out. Doesn't seem like a week ago since we were at last Christmas, first one in the new house, with my friend from OZ over. Bam.. year has gone and its nearly 2016.
I keep trying to think what has happened this year, we spent out first full year here in Bournemouth! Any regrets? no apart from not having family around the corner or just a phone call away. The traveling can be hard, when it can range from 5 hours and up ( can be timed at less depending on length of service stops.. but we like a stretch ) Though haven't done as many trips up as i thought we might do this year, didn't help that on one trip up we actually broke down. .. ( we didn't get very far thank goodness!! )
I have made some lovely friends since living here, though i don't normally feel very confident with making friends, I feel I've made some really close friends, though my friend from round the corner who has allergies, and hypermobility is moving a bit further away ( only a bus ride!) our kiddies get along and we can talk and that makes all the difference. It will be an excuse to leave the house!
In November, it was me who needed a hospital visit in what turned out to be appendicitis! that was a first for me to be in hospital for something other than the children ie giving birth or them in general. It was a bit scary, and its taken a while to heal, longer to get over the tiredness which i didn't expect! Still currently not allowed to lift anything heavy but another week or so and i should be able to shift anything i want! But i found out what real genuine friends i had around me. And much needed for the star bucks coffee trip one of my friends did! and the school lifts, though school really did try to help, even offering free breakfast and after school club, but we couldn't work it round with hubby going to work.
We've had the usual hospital apps this year with the eldest! and all of her issues. We've even had a new one added with her hearing bless, due to frequent headaches i was talking to the dermatologist who suggested getting a hearing test done at school so sorted that round school, who found there was an issue with her left ear. ( never would have thought there was an issue) and we got sent to a local community pediatrician. more tests to find its not ear wax or glue ear and we are being sent to someone else to check the bones in her ear! ... well it explains why she sometimes can't hear me calling for her. But its another thing to the list! and the worry that goes with it, as there isn't apparently much that comes on to affect a childs hearing apart from ear wax glue ear, etc unless they were born with issues which madam wasn't! as her speech is above average for her age so its something thats come on. However least this is being investigated! where as her hypermobility is just being left and told we just have to get her exercising. Ok.. she has been doing football twice a week, once at school and then on a Sunday with a "this girl can" group. which she has really enjoyed. Doesn't sort out her flat feet.. or her swollen knees and ankles. But i'm just holding off now. They are sending me on a parenting course to deal with madams anxiety.. ( because apparently this is all it is?)
Little man is doing ok! though also being investigated for hypermobility, as his fingers are very HM and i want something in place before he starts school full time in September! We did have some physio back in April after i pestered the GP.. but instead of checking all of him, they literally just checked his legs and feet and told me not to let him W sit... yeah like i just let him. Even madam still does it and i have to tell her to move. Nursery are very good however and have been doing some exercises with the class which has helped improve mr's balance a bit. They also have a Occupational therapist in who suggested we get him checked out... yeah ok we are trying. Our original referral got lost! after waiting two months i decided to chase it to find it had been sat in someones tray undone for the time. Not happy. But should be getting an appointment for that at some point soon. Shall we place bets that it will clash with madams audiology appointment?
We haven't done a great deal this year apart from settle in as much as we can here, we went to Cornwall on Holiday, which was a lovely holiday, and we try and explore more round here, we visited the air show, which was a interesting experience but i won't be doing that every year!!
We are practically ready for christmas, we just need to wrap a few more things, as we keep finding some little things to add. We are then visiting family after and i can't wait, as it feels like forever since we saw anyone!
Fingers crossed we will have a good run up!
Next year , well what does it bring? we would like to go to France if we can, we probably have lots of appointments to deal with and we will just have to take everything one step at a time. I know we can get through anything because we have got this far!. I turn 30 this next year... no plans as of yet to do anything apart from maybe a meal out. It is also our 10th wedding anniversary!! (where has the time gone?! and also a big fat raspberry to anyone who thought we wouldn't last this long) That we want to go to a concert, we just need some willing baby sitters to come down for a couple days in half term! Pretty please lol We don't exactly go out on our own often ;)
All the best for the holidays and the new year! Lets hope it is better then the last one.
Tuesday, 22 December 2015
Monday, 23 November 2015
Mummies turn for a hospital visit
I'm pretty sure everyone has had enough of my tale already, however with how everything happened I want something written down so I can remember something and hopefully remember the symptoms for someone else next time if there ever is a next time on the same lines.
On Wed everything was fine, I hadn't been ill, we had a lovely time at my childrens parents evening, madam is practically gifted, teachers words not ours ( and I cried because we know how much she deals with and she just gets on with it! ) little man got seen by a Occupational therapist in school and yes definitely has hypermobility and we need to chase it up and make sure he gets help so was nice to get some other backing! And he's very nurturing and empathic with other children... just not his sister lol.
Thursday morning.. i woke up at 6, and got out of bed straight away.. I don't usually follow hubby straight down, but my tummy was bloated and sore, thought i'd just had a funny tum. Though i do recall some sort of pain in the night, again prob just put down to something else.
I didn't fancy eating and sat on the couch with my morning brew like I always do! had about half and just couldn't feel like any more. so left it, hubby left for work though suggested i had some milk of magnesia or something but i had already taken rennies to no effect. I felt a bit off when in the kitchen i think i was getting breakfasts and then suddenly my half a cup of coffee was up. That wasn't good. not something usually that happens. I messaged my friend to ask if she could take madam to school as i knew i just wouldn't manage it. all this by 7:30 am. I had to get daughter to get her lunch together as i was worried if it was a sick bug she would get it so wonderful love managed it we got her dressed as usual and off she went with a friend.
Poor little man was left with me, i felt terrible. I just couldn't get comfortable, at all, the pain across my stomach was odd, i tried lying in bed i tried sitting with cushions on the couch. nothing was helping. i was up and down i had a bath, i felt almost like it was labour but that just wasn't possible! I was having hot flushes, pain.. and i couldn't keep anything down at all not even water! i attempted some ice pops that just about stayed down and mr tried to steal. At 1:30 hubby calls as usual and i said i've been sick and still in alot of pain etc, so he insists ring the dr see if you can talk to dr. ok i do.. i wanted a home visit, but dr said come in now there is a emergency surgery at 3pm but if i got in they could see me. So.... taxi up with mr. I had a feeling then that i wasn't going to be going home.
At the drs she was so understanding, not like usual and said she knew there must be something as i never go in to the drs, never and i said no i don't, so talked through the morning got on the bed pressed around my tum then the right side and pow! hot sweat and pain! .. dr wasn't happy, i wasn't happy and she was immediately concerned. had another feel then let me get up. Mr was being so well behaved bless as he had been virtually ignored all day not even any lunch ( he got some crisps and some choc at some point) dr said she wanted me to ring hubby she thought it was appendicitis.. something i had been trying to deny! Hubby immediately left work, dr rung the hospital so they knew i was coming and gave me a letter to give then put me in another room to wait for hubby.
Whilst in the room mr was given a biscuit and some water that i wasn't allowed to touch and didn't want and we then waited. I needed an over night bag and was trying not to freak. i felt so ill and still not comfortable! before hubby arrived i had brought up bile and the dr was going to ring an ambulance ( she didn't want to because it wasn't a blue light event.. and could take 2-4 hours)
When hubby arrived he had been home to get a bag for me and we were off to the hosp! going over every bump hurt! but we just had to get there and then get to the ward. When there I spoke through what was going on, again.. though didn't want to lie down had to. Bloods were taken and options were discussed as well as speaking to a consultant. We weren't sure then if it was kidney stones or something gyny or appendicitis as they have to rule it out. Poor hubby and little man had to leave to get some tea and madam from a friends house. I was left to be taken to x-ray to check for kidney stones ( i did have some medicine during this time thank goodness! ) Down to x-ray and took forever to come back up where i was then back in pain, i could hear the staff chattering saying my bloods had come back with a high inflammation marker so it looked like appendicitis but they would do a scan in the morning just to rule out anything else and then go in and check my appendix! .. Off to the ward we went.
It was busy! very ... i was left... until about 9 pm when i asked for some pain meds as mine had definitely warn off. Though pretty sure remember now i threw the next lot of morphine up.. was given some liquid paracetamol and anti sickness stuff again and some anti biotics. .. couldn't get comfortable, i couldn't get any sleep, there was too much noise going on, lady opposite me had a oxygen mask that she kept taking off.. that made noise and staff had to come and sort out. some time after midnight and a check up it seemed i had gained a temp atleast 38.8 for one reading so was put on more anti biotics. one of the staff and thought i was flushed earlier and said he would check but never did and i had asked for the window open, i was not covered. At some point it was said my surgery would be at 6 sod any scans.
I then started to shake, like shivers when you are cold but so much worse the bed was shaking with me! I tried so hard not to shake, i really did, but i couldn't. I could hear staff in the room so called to them to come and help. One was trying and failing to get a blood pressure reading from me, and bloody oxygen level in. ( she was annoying, did it several times and tutting when she couldn't and told me to stop shaking.. as if i could! ) they put me on oxygen and eventually my body stopped shaking and they left to call the surgeon. when i was sleeping some one came to take me to x-ray.... found out they wanted to check i had done no chest damage with my shaking. that was 1 am. Surgeon came and said we need to get this surgery done tonight as i had two lots of different anti biotics and it just wasn't working. It was a odd conversation he stood with his arms crossed looking.. concerned. " it's not working this isn't good" so he left to make phone calls. by 3 am i was down in theatre.. Couldn't even ring hubby for fear of waking the children. everything had gone so fast.
I remember waking up afterwards feeling the blood pressure cuffs on my legs.. and i felt so much better like tons better, it could have been the meds i had been given. but the sickness and pain were gone. I can't remember any conversations with the nurses and was taken back up by 6... as i found a fb message i sent to hubby.. at 6. I was told at some very early morning that it was definitely appendicitis and it had gone gangrene.. and there was pus in my pelvis! .. not good. But good job they caught it when they did and that i was brave... I didn't have much choice. I couldn't sit and cry i couldn't go home. It had to be done! One of the ladies on the ward just said, aww you said in a little quiet voice ok.. when told you were going to surgery. I think i was just fed up by then, i knew it needed to be done and i was resigned to the fact, and i didn't want to be in pain any more!
Felt ok throughout friday! lots of meds and i was able to get in and out of bed, but was allowed to drink and kept it down, and a cup of tea ! and we worked up to soup for lunch and something light for tea and ice cream.. which i managed a small portion.
Got home on sat afternoon after pressing them a bit. I didn't want to stay i wanted to be at home with the kids and hubby with my blankets and quilt and people i knew. been told to expect infections in my wound sites thanks to the nature of my infection but on a course of strong anti biotics and pain meds and have to visit the nurse at the gp!
Told not to over do it and i'm trying not to, its been hard trying to get sleep trying to get comfortable and honestly.. why don't they tell you about the bloating and wind? blurgh.. its annoying! 3 days since op and my appetite is not here, .. which for a foodie is disturbing. i've drank so much water and had enough meds to last a while but have to keep going. I know its going to take a while to be 100% and trying to do things bare minimum. though hard when i'm normally in and out or walking or something!
Least i won't get appendicitis again! but i will know what to look for if anyone else in the house or i know gets it!
On Wed everything was fine, I hadn't been ill, we had a lovely time at my childrens parents evening, madam is practically gifted, teachers words not ours ( and I cried because we know how much she deals with and she just gets on with it! ) little man got seen by a Occupational therapist in school and yes definitely has hypermobility and we need to chase it up and make sure he gets help so was nice to get some other backing! And he's very nurturing and empathic with other children... just not his sister lol.
Thursday morning.. i woke up at 6, and got out of bed straight away.. I don't usually follow hubby straight down, but my tummy was bloated and sore, thought i'd just had a funny tum. Though i do recall some sort of pain in the night, again prob just put down to something else.
I didn't fancy eating and sat on the couch with my morning brew like I always do! had about half and just couldn't feel like any more. so left it, hubby left for work though suggested i had some milk of magnesia or something but i had already taken rennies to no effect. I felt a bit off when in the kitchen i think i was getting breakfasts and then suddenly my half a cup of coffee was up. That wasn't good. not something usually that happens. I messaged my friend to ask if she could take madam to school as i knew i just wouldn't manage it. all this by 7:30 am. I had to get daughter to get her lunch together as i was worried if it was a sick bug she would get it so wonderful love managed it we got her dressed as usual and off she went with a friend.
Poor little man was left with me, i felt terrible. I just couldn't get comfortable, at all, the pain across my stomach was odd, i tried lying in bed i tried sitting with cushions on the couch. nothing was helping. i was up and down i had a bath, i felt almost like it was labour but that just wasn't possible! I was having hot flushes, pain.. and i couldn't keep anything down at all not even water! i attempted some ice pops that just about stayed down and mr tried to steal. At 1:30 hubby calls as usual and i said i've been sick and still in alot of pain etc, so he insists ring the dr see if you can talk to dr. ok i do.. i wanted a home visit, but dr said come in now there is a emergency surgery at 3pm but if i got in they could see me. So.... taxi up with mr. I had a feeling then that i wasn't going to be going home.
At the drs she was so understanding, not like usual and said she knew there must be something as i never go in to the drs, never and i said no i don't, so talked through the morning got on the bed pressed around my tum then the right side and pow! hot sweat and pain! .. dr wasn't happy, i wasn't happy and she was immediately concerned. had another feel then let me get up. Mr was being so well behaved bless as he had been virtually ignored all day not even any lunch ( he got some crisps and some choc at some point) dr said she wanted me to ring hubby she thought it was appendicitis.. something i had been trying to deny! Hubby immediately left work, dr rung the hospital so they knew i was coming and gave me a letter to give then put me in another room to wait for hubby.
Whilst in the room mr was given a biscuit and some water that i wasn't allowed to touch and didn't want and we then waited. I needed an over night bag and was trying not to freak. i felt so ill and still not comfortable! before hubby arrived i had brought up bile and the dr was going to ring an ambulance ( she didn't want to because it wasn't a blue light event.. and could take 2-4 hours)
When hubby arrived he had been home to get a bag for me and we were off to the hosp! going over every bump hurt! but we just had to get there and then get to the ward. When there I spoke through what was going on, again.. though didn't want to lie down had to. Bloods were taken and options were discussed as well as speaking to a consultant. We weren't sure then if it was kidney stones or something gyny or appendicitis as they have to rule it out. Poor hubby and little man had to leave to get some tea and madam from a friends house. I was left to be taken to x-ray to check for kidney stones ( i did have some medicine during this time thank goodness! ) Down to x-ray and took forever to come back up where i was then back in pain, i could hear the staff chattering saying my bloods had come back with a high inflammation marker so it looked like appendicitis but they would do a scan in the morning just to rule out anything else and then go in and check my appendix! .. Off to the ward we went.
It was busy! very ... i was left... until about 9 pm when i asked for some pain meds as mine had definitely warn off. Though pretty sure remember now i threw the next lot of morphine up.. was given some liquid paracetamol and anti sickness stuff again and some anti biotics. .. couldn't get comfortable, i couldn't get any sleep, there was too much noise going on, lady opposite me had a oxygen mask that she kept taking off.. that made noise and staff had to come and sort out. some time after midnight and a check up it seemed i had gained a temp atleast 38.8 for one reading so was put on more anti biotics. one of the staff and thought i was flushed earlier and said he would check but never did and i had asked for the window open, i was not covered. At some point it was said my surgery would be at 6 sod any scans.
I then started to shake, like shivers when you are cold but so much worse the bed was shaking with me! I tried so hard not to shake, i really did, but i couldn't. I could hear staff in the room so called to them to come and help. One was trying and failing to get a blood pressure reading from me, and bloody oxygen level in. ( she was annoying, did it several times and tutting when she couldn't and told me to stop shaking.. as if i could! ) they put me on oxygen and eventually my body stopped shaking and they left to call the surgeon. when i was sleeping some one came to take me to x-ray.... found out they wanted to check i had done no chest damage with my shaking. that was 1 am. Surgeon came and said we need to get this surgery done tonight as i had two lots of different anti biotics and it just wasn't working. It was a odd conversation he stood with his arms crossed looking.. concerned. " it's not working this isn't good" so he left to make phone calls. by 3 am i was down in theatre.. Couldn't even ring hubby for fear of waking the children. everything had gone so fast.
I remember waking up afterwards feeling the blood pressure cuffs on my legs.. and i felt so much better like tons better, it could have been the meds i had been given. but the sickness and pain were gone. I can't remember any conversations with the nurses and was taken back up by 6... as i found a fb message i sent to hubby.. at 6. I was told at some very early morning that it was definitely appendicitis and it had gone gangrene.. and there was pus in my pelvis! .. not good. But good job they caught it when they did and that i was brave... I didn't have much choice. I couldn't sit and cry i couldn't go home. It had to be done! One of the ladies on the ward just said, aww you said in a little quiet voice ok.. when told you were going to surgery. I think i was just fed up by then, i knew it needed to be done and i was resigned to the fact, and i didn't want to be in pain any more!
Felt ok throughout friday! lots of meds and i was able to get in and out of bed, but was allowed to drink and kept it down, and a cup of tea ! and we worked up to soup for lunch and something light for tea and ice cream.. which i managed a small portion.
Got home on sat afternoon after pressing them a bit. I didn't want to stay i wanted to be at home with the kids and hubby with my blankets and quilt and people i knew. been told to expect infections in my wound sites thanks to the nature of my infection but on a course of strong anti biotics and pain meds and have to visit the nurse at the gp!
Told not to over do it and i'm trying not to, its been hard trying to get sleep trying to get comfortable and honestly.. why don't they tell you about the bloating and wind? blurgh.. its annoying! 3 days since op and my appetite is not here, .. which for a foodie is disturbing. i've drank so much water and had enough meds to last a while but have to keep going. I know its going to take a while to be 100% and trying to do things bare minimum. though hard when i'm normally in and out or walking or something!
Least i won't get appendicitis again! but i will know what to look for if anyone else in the house or i know gets it!
Wednesday, 26 August 2015
The ups and downs of an Air show
This last weekend we went to the Bournemouth Air show! I haven't been to an Air show since I was rather little and even then I'm not sure, as my memory is rather shot due to my dyspraxia. ( Which is always fun when people are trying to tell you things and you forget and you've forgotten most of your child hood and it takes your older sister to remind you of alot of things! Sure I've blanked alot out for various reasons!)
Anyway decided we would go as one, it is a free event, two we have free bus travel and three it should be fun!! I took the children by myself on the Friday and ended up standing close to the Pier as I didn't want to wander to far down the Prom and it was busy as it was rather sunny ( I got rather sun burned! ouch )
I am very thankful that we still have the use of the British heart foundation Wheelchair as I'm sure madam wouldn't have lasted the full day with out it, esp as we had no where to sit after we had moved to go and get ice cream!
The children loved it! and so did I, Even though it was very crowded, I managed ( I don't like crowds)
Anyway decided we would go as one, it is a free event, two we have free bus travel and three it should be fun!! I took the children by myself on the Friday and ended up standing close to the Pier as I didn't want to wander to far down the Prom and it was busy as it was rather sunny ( I got rather sun burned! ouch )
I am very thankful that we still have the use of the British heart foundation Wheelchair as I'm sure madam wouldn't have lasted the full day with out it, esp as we had no where to sit after we had moved to go and get ice cream!
The children loved it! and so did I, Even though it was very crowded, I managed ( I don't like crowds)
Love how clear this one is!
The little man's favourite, a Nook nook! (Chinook)
The Red Arrows
Saturday display Red Arrows
On the Saturday after madam had been to a birthday party ( which was stressful enough as we wanted to go to the air show etc and she ended up leaving her allergy bag there!)
It was very busy and I was very stressed about it, however we managed to get a really good spot in the middle of all the action! Perfect place! and hubby loved it, as he couldn't come on the Friday. It was Epic! we got to see the Vulcan fly past on its way to another event, and I've never seen such a big air craft!
Really it was worth going just for that! Not long after we decided to go as it was getting close to closing for the air show and I wanted to get on a bus without the crowds ( and people round here need to learn how to move a couple inches across a pavement when in a que.. when we were trying to get on the bus! heaven forbid we are trying to get a wheelchair on.. claiming their was no room, no there was plenty you just couldn't be arsed moving!)
We managed to get home and even managed to get our own little fly over of a Typhoon and could see its display from home! ( not that was noisy!! )
Part of me can't wait to go again, I would get to the beach at the crack of dawn to get a good spot if possible or even hire a beach hut because it would be so worth it! However there is the down side, and after we came home on Saturday we heard about the Shoreham air disaster at their own air show.
This is what makes it so scary, a plane never pulled back up after doing a loop and it crashed onto a main road! It makes me sick thinking about it and my thoughts and prayers are with the families of the 11 that have lost their lives, people who weren't even at the air show. As fun as air shows are, the danger to the pilots and others ( especially when in built up areas like Shoreham. It's just not worth it! yes its exciting and daring and fun! but so so scary! People are saying they should be more like ours out to sea but at Bournemouth on Saturday there were apparently 1200 boats watching! so even then they would not be safe even if the planes out out to sea. The thing could be said about any dangerous thing, cars are dangerous, normal planes are, roller coasters air ( look at Alton Towers recently but i'd still go)
Thrill seekers are always going to want something and people are always going to want to give as well.
As much as I loved the Air show I feel bad for loving it with what happened at Shoreham. Not sure how I could get over this feeling I just hope some answers may be found so that future events could be made safer if possible!
Friday, 7 August 2015
Family holiday to Cornwall!
It's Friday evening and just putting the children down to sleep after a week away to Cornwall! Slightly strange planning holidays that don't involve coming to Dorset! ( after all two out of the last three holidays where to Sandford which is about 15 minutes down the road from where we live now!) Not sure why we picked Cornwall, I think because neither of us had been we thought we would go!
It was an interesting week and went to a lovely camping site on a working farm not that, that got in the way of the camping site. Court Farm Cornwall I would highly recommend, it was cheap (electric pitch for £200 for a week is good in our books) the management don't pester you, when we arrived there was just a sign on the reception door to where our pitch was and it was fairly quiet when we arrived. Ended up next to a older couple who although lived in Devon where originally from Bolton!! (small worlds and all that!) It was a well run site, with clean fields big pitches ( pity never took a pic to show how big the plot was) there was a big expanse where the children could all play and no one went there. There were also fridges and freezers to use which we've never had before! Everyone also seemed to stick to the rules and weren't up making a racket after 11pm something which has been a real issue in the past on holiday resort/ park sites!.
I think the high light of the trip for me would have been going to Eden Project! it was awesome there, and obviously very eco/ planet friendly. We got there early and so were one of the first ones there! ( booked in advance for cheaper tickets and got discount due to madam but can get voucher books in Cornwall for the same sort of discount as what we got!) They have a theme on at the moment of dinosaurs and so we spent most of our time hunting for dinos! ( we found a baby one and another ) and saw an exhibit of them as well as the children getting to play at being paleontologists! something which at the moment madam would love to do. It was a really good day even with the rain, we didn't eat there but the food smelled gorgeous ( and you could watch from above them cooking/ preparing it! ) Very user friendly and highly recommend it. We spent a good 3/4 hours there and only left as we were getting tired. ( gift shop was fairly reasonable price too)
This was the first camping trip where the children made some proper friends, ones where you get up and go play with each other first thing and are up with till late. madam got involved with another family playing cricket ( who were really good with her and understanding) and she got to burn off some energy! Was so nice esp when today they were waving good bye to us. ( I was good I didn't cry!!)
We did have to spend a day in the tent where it really did rain ( and we have some leaks in the tent :( ) we went out for some lunch and ended up in traffic for an hour! we explored some of the little towns and visited some more national trust places! ( why not we have the membership!) Overall it was a much better trip then last years, yes madam has been in pain and had some issues with her eczema and asthma but pain was more or less manageable we did try and keep things short though
It was lovely to get away and spend some quality family time, even if it was the same things we do at home it was just nice not to have school, work and nursery in the way. Already planning for our next trip... which is going to have to include good air beds or camp beds as sick of air beds this trip! ( .. sleeping on the floor most of the night is just a no. )
We threatened to put her in the bin when she was complaining of hurting etc.. this was the closest bin!
Studying a map over lunch at a National Trust Garden
The End of the Universe.... well as some might think! ( really over commercialised there though :( )
Tuesday, 23 June 2015
Finding it hard to talk
I know some people will probably find it funny, that I might find it hard to talk. Get me on the right subject and I can be off. Those who know me better will actually know I can be quite withdrawn and no want to talk. At the moment i feel this is the case, I don't have alot to talk about, unless you want the details of the 3 year old and what we did in the morning before nursery, which is normally watching cbeebies. That or talking about my eldest which is the main subject I have to talk about because of how much we have to do. So sorry if it is boring people but when it is such a huge part of our lives what she is going through i don't get to read up or find much other things to talk about.
I don't watch Game of Thrones, I'm not a sport person ( i only watch Wigan Rugby League) And i don't have many friends to talk to which then brings it full circle.
I find it hard to communicate, I don't send messages to people but then get upset when no one gets in touch, which i think alot of people do! I think facebook and other mediums along the same lines can be dangerous things, esp for people like me! I get addicted to looking at it, posting, seeing if people respond, seeing what people are up to but then it is the craving attention or some interaction! it is very odd! Winds me up something awful when people i know happily comment, like, interact with other people i know but yet wont do the same with what i post. Which then again brings it back to almost being depressive/ obsessive.
I have made friends now where we live and even go round for a brew/ chat which is great! and i feel very welcomed. I still worry that i have nothing to talk about though! There isn't much on the news and so i'm left with what i do. ... Hrrm back to basics then!
We are having quite a few issues with madam, she sprained her ankle quite badly over a week ago and still can't but any weight on her ankle, going to go to the hospital if she can't weight bare at the end of the week. Her knee is playing up, and so is her other ankle. Doesn't help the sprained ankle is opposite to her usual bad knee. She is currently sleeping on her mattress on the floor as her high bed is just to much trouble to get into! ( im hoping she doesn't broadcast that at school as it doesn't sound very good does it! ) She had a MRI scan done on her right knee last week too, and we should find out soon if it has shown anything, tbh i'm not sure it will but at the same time i'm hoping it does so that finally someone may take us seriously! Not that i'm going to start that rant again.
I think i'm going to try and message people more, and see if i can find something in common to talk about that doesn't involve ill children. Must be something out there for me to talk about?
I don't watch Game of Thrones, I'm not a sport person ( i only watch Wigan Rugby League) And i don't have many friends to talk to which then brings it full circle.
I find it hard to communicate, I don't send messages to people but then get upset when no one gets in touch, which i think alot of people do! I think facebook and other mediums along the same lines can be dangerous things, esp for people like me! I get addicted to looking at it, posting, seeing if people respond, seeing what people are up to but then it is the craving attention or some interaction! it is very odd! Winds me up something awful when people i know happily comment, like, interact with other people i know but yet wont do the same with what i post. Which then again brings it back to almost being depressive/ obsessive.
I have made friends now where we live and even go round for a brew/ chat which is great! and i feel very welcomed. I still worry that i have nothing to talk about though! There isn't much on the news and so i'm left with what i do. ... Hrrm back to basics then!
We are having quite a few issues with madam, she sprained her ankle quite badly over a week ago and still can't but any weight on her ankle, going to go to the hospital if she can't weight bare at the end of the week. Her knee is playing up, and so is her other ankle. Doesn't help the sprained ankle is opposite to her usual bad knee. She is currently sleeping on her mattress on the floor as her high bed is just to much trouble to get into! ( im hoping she doesn't broadcast that at school as it doesn't sound very good does it! ) She had a MRI scan done on her right knee last week too, and we should find out soon if it has shown anything, tbh i'm not sure it will but at the same time i'm hoping it does so that finally someone may take us seriously! Not that i'm going to start that rant again.
I think i'm going to try and message people more, and see if i can find something in common to talk about that doesn't involve ill children. Must be something out there for me to talk about?
Monday, 27 April 2015
Time to myself
Well it was a very long week last week! i wanted to do so much, it was Allergy awareness week and i wanted to promote allergies more and do more for the cause so to speak. It never ended up happening apart from a post i did on Pollen allergies! Not exactly the full scale i wanted to do!
Why? well little man started nursery last week and even though i've been trying to gear him up for the big change for a while, pointing out nursery, we went to a little party there so he could see the teachers, getting him involved in getting his shoes etc. First day came and of course he was upset but went and that started off a full week of lunch time woes. So much so on Wednesday when dropping him off he was sick when he was there. It was just very busy as there were more children at drop off time. When he comes out he is crying and clinging on to me and has mixed responses when asked if he liked nursery. Freaked out at taking his bag, freaks out if his spare clothes are left on the peg... all very stressful for me when i then sit at home and think about whats happened and on Wednesday i actually cried. I felt so awful for doing this to him! But at the same time it is a step i want to take, need to take. I need the time to myself in the afternoon, to chill, to catch up on any jobs i can do without a 3 year old hanging off of my arm! Also the potential to take madam to any appointments in the afternoon if possible to get there and back in time to pick him up!
I'm hoping as well that him going to nursery will help bring on his speech and his ability to play with others as its not something he actively does ( not sure fighting with his sister counts!)
What shall i do with my time? well... not sure i should say catch up on the tv shows i've missed ! but i did do that last week, some of the more violent ones that i don't want the children to see! But i think the more i get use to this time the more i shall do with it as its about 2 whole hours ( plus more but i pick him up just after i pick madam up and the walk back can vary on time! )
Got a few appointments to chase up and other ones to change this week. We had a "interesting" physio appointment this last week. Although she doesn't see madams knee and ankles as being particularly bad she was rather fascinated with how much range her right leg/ hip had! so much so she wants her to have a hip x-ray to rule out hip displasia well that was a bit of a interesting turn. Though dr google doesn't help in this case as its mostly babies diagnosed, the possibility that it could be this means there will be rather invasive surgery needed to correct the issue if she does. scary! Though i try not to worry about that but it says something when the specialist physio was in awe of it! And was adament that something needed to be done to check. ( she went through a little speech saying she wouldn't just be asking for xray unless it was really needed and she needed to justify looking )
Also told me madam couldn't have jhms as she is only suffering in lower joints... surely you can have something even in the lower extremities. wish they would stop picking at the other specialists diagnosis! Because it still leaves me very lost! though the physio does want to get to the bottom of whatever madam has. it just makes me feel like a liar as i always say well madam has jhms.. so what now? more waiting!
Saturday, 18 April 2015
Joint Hypermobility Syndrome
Seeing as it is something I talk about alot due to madam and her diagnosis last year I thought it would be good to do a proper post on the subject and what JHMS is, what it means, how it differs person to person and how it affects us. Now I know alot of people in my life are more then likely fed up of talking about JHMS but if the information is out there perhaps it could help someone else? the back up with information the could take to the gp and suggest it is looked at. For us we had to struggle for 4 years for someone to properly look at madam and not just dismiss us saying it was growing pains. ( That is such a bug bear even now)
Okay so first things first, what is Joint hypermobility syndrome, some people may have heard of hypermobility, it used to be the coined phrase of "double jointed" it is generally those who have a wider range of movement in their joints. This can be a great advantage to dancers, footballers etc as they are able to move in a better way, more fluid, but they have control as well, some dancers even condition themselves with time and training to be as flexible so that they are more subtle with their dancing, fluid and well graceful. If anyone saw my daughter she is anything but graceful when walking!
This link takes you to the NHS description for JHMS
NHS Joint hypermobility
As it says on the NHS page, Joint hypermobility Syndrome, differs from just hypermobility, it can range quite alot from those who really suffer day to day to those who might just have a bad day now and then. It involves pain that can be chronic, fatigue, issues with bladder, bowels, issues with the skin being very soft, dislocations and much more. Though the more symptoms you find the more you start to cross over int Ehlers Danlos type 3 which is a whole new ball game. ( And is also said that those that do have JHMS have EDS type 3 because they are basically the same condition but not going there just now)
http://hypermobility.org/ Link to a Hypermobility page that is a foundation set up to help inform/ education and support people with the conditon.
Now with madam where do we start? didn't really notice anything when she was little after all we had her eczema etc to worry about she was a premie baby though not by alot but she was small when she was born. ( 4lb 14oz at 36 weeks) didn't figure anything was wrong, she was a little slow with walking but no one ever flagged up that there were any issues! she was 18 months, not terribly slow, but not exactly fast either. When she was 2/3 noticed that she use to fall over alot, basically over her own shadow, she would tire easily and she started to complain of pain in her legs. ( being quite verbal she was able to communicate very easily with us) I took her to the gp and told them. They said because the pain was in both legs then it was just growing pains and to come back when it was in one leg.... Ok so it continued, weeks, months, any amount of walking and she would be up crying in her bed needing her legs rubbing.
This went on for quite a while. There is only so much you want to go to the drs for them to knock you back. With all her allergy appointments etc with the pediatricans I brought it up with them, to have a dr at the hospital barely do anything with her to check and go its growing pains. Head against a brick wall moment. To put this in perspective this had taken years to get to this point, she was 5 when we had this doctor saying its growing pains. So i requested a transfer to another hospital because I was sick of the pain she was getting which was getting worse and the fact she could do freaky things with her legs was coming to light. ( not often you catch your daughter with her toes on her nose.... going the wrong way to do it.).jpg)
When we got our new referral which was last year everything changed. we were not in with the doctor 10 minutes when she said madam had jhms. All these years all the asking and the dr manages to tell us in such a short time. bam! She showed me why and looking at madams knee she told me where the ligaments should be.. and where hers where. lets just say they are not in the right place! It felt so refreshing for someone to listen, Someone to take a proper look and not just dismiss us. How i didn't cry I don't know.
I wish I could say things have gotten better since that diagnosis but they haven't, madam has actually gotten alot worse, to the point sometimes she can't get out the door. she locks her knees in place so she can literally walk. Her ankles are very strange. she bruises easily ( currently have a bruise that going on for two weeks not fading) It is affecting us, going out shopping ,days out, school, us as a family. It is very draining. Unless she is doing her funky tricks no one can see what the condition is like.
(going to show a few pictures)
Please excuse the mucky shoes, but here are her school shoes, suppose to be the best out there for her ankles for support, ( she does have a insole for her shoes as well) this wear and tear has happened since September, they are both wearing down on the outside of the shoe! Not very good and show the insoles arn't doing alot of good atm.
And now the ankles in question, above is the left ankle the one below is the right, I was watching how she was walking in our hall way and you could see the ankles sliding from one side to the other, creeeeeepy. now these are not as bad as some I have seen, but you can clearly see that her ankles are not what they are suppose to be and they are forcing themselves out the other side. Is it any wonder why she suddenly goes over on her ankles they don't know which way they are going.
Now there are those at there who are worse then madam with the condition, and there are some who are better and don't have as much pain. As mentioned in other posts we are having issues with people down here believing what is going on with madam and that she is getting her own way. However it is not like the above things can be faked, you can't fake these ankles as much as you want to try, and no child ever would refuse to go into a toy shop, for a toy if they were putting it on.
Madams Symptoms:
Knees, ankles, hips flexible also slight elbows.
Pain in knees, ankles, legs, sometimes hips back and neck.
Frequent headaches
Fatigue
Bruises easily, slow healing.
Issues with bladder control ( more so suddenly not needing it to be extremely urgent need to go!)
Trouble getting to sleep ( not just her being a pain in the bum)
Ankles, knees giving way
Flat footed when weight bearing.
Soft skin
Over pronation evidence from shoes.
Poor Core muscles ( what helps you balance)
Also tight hamstrings, leg muscles a consequence of her other muscles compensating for her lax joints.
We are having physio again and I'm hoping they will listen and be supportive because we really could do with some supportive medical professionals at the moment. Instead of the negative. I'm hoping to find more people near us that have the same issues and that we can go and talk, because its very hard to talk to people who just do no understand what we have to do or think that madam is putting it on.
Okay so first things first, what is Joint hypermobility syndrome, some people may have heard of hypermobility, it used to be the coined phrase of "double jointed" it is generally those who have a wider range of movement in their joints. This can be a great advantage to dancers, footballers etc as they are able to move in a better way, more fluid, but they have control as well, some dancers even condition themselves with time and training to be as flexible so that they are more subtle with their dancing, fluid and well graceful. If anyone saw my daughter she is anything but graceful when walking!
This link takes you to the NHS description for JHMS
NHS Joint hypermobility
As it says on the NHS page, Joint hypermobility Syndrome, differs from just hypermobility, it can range quite alot from those who really suffer day to day to those who might just have a bad day now and then. It involves pain that can be chronic, fatigue, issues with bladder, bowels, issues with the skin being very soft, dislocations and much more. Though the more symptoms you find the more you start to cross over int Ehlers Danlos type 3 which is a whole new ball game. ( And is also said that those that do have JHMS have EDS type 3 because they are basically the same condition but not going there just now)
http://hypermobility.org/ Link to a Hypermobility page that is a foundation set up to help inform/ education and support people with the conditon.
Now with madam where do we start? didn't really notice anything when she was little after all we had her eczema etc to worry about she was a premie baby though not by alot but she was small when she was born. ( 4lb 14oz at 36 weeks) didn't figure anything was wrong, she was a little slow with walking but no one ever flagged up that there were any issues! she was 18 months, not terribly slow, but not exactly fast either. When she was 2/3 noticed that she use to fall over alot, basically over her own shadow, she would tire easily and she started to complain of pain in her legs. ( being quite verbal she was able to communicate very easily with us) I took her to the gp and told them. They said because the pain was in both legs then it was just growing pains and to come back when it was in one leg.... Ok so it continued, weeks, months, any amount of walking and she would be up crying in her bed needing her legs rubbing.
This went on for quite a while. There is only so much you want to go to the drs for them to knock you back. With all her allergy appointments etc with the pediatricans I brought it up with them, to have a dr at the hospital barely do anything with her to check and go its growing pains. Head against a brick wall moment. To put this in perspective this had taken years to get to this point, she was 5 when we had this doctor saying its growing pains. So i requested a transfer to another hospital because I was sick of the pain she was getting which was getting worse and the fact she could do freaky things with her legs was coming to light. ( not often you catch your daughter with her toes on her nose.... going the wrong way to do it.)
When we got our new referral which was last year everything changed. we were not in with the doctor 10 minutes when she said madam had jhms. All these years all the asking and the dr manages to tell us in such a short time. bam! She showed me why and looking at madams knee she told me where the ligaments should be.. and where hers where. lets just say they are not in the right place! It felt so refreshing for someone to listen, Someone to take a proper look and not just dismiss us. How i didn't cry I don't know.
I wish I could say things have gotten better since that diagnosis but they haven't, madam has actually gotten alot worse, to the point sometimes she can't get out the door. she locks her knees in place so she can literally walk. Her ankles are very strange. she bruises easily ( currently have a bruise that going on for two weeks not fading) It is affecting us, going out shopping ,days out, school, us as a family. It is very draining. Unless she is doing her funky tricks no one can see what the condition is like.
(going to show a few pictures)
There is a start of a bruise along her wrist, possibly hard to see for those who don't know what they are looking for but there is a dark line that looks like a grubby mark on her wrist, also her thumb is rather swollen, this is from her first session of tennis at school... so nothing extensive for the 7 year olds and yet she came home like this! I wouldn't have said it was normal.
This was taken a few weeks ago, she'd had a interesting day and bad mummy i thought she was trying to gain some extra time before bed when she was saying she was hurting( yes i ate my words after) the red patch on her knee suddenly came up when i was sat with her. her knee was swollen and the next day i took her to the rhumatologist on a emergency app who found that she had a low grade inflammation, the only cure? a steroid injection which she had two weeks later, Those two weeks were hell she could hardly walk! the injection went well and so far she has been better, not great but better!
Now there are those at there who are worse then madam with the condition, and there are some who are better and don't have as much pain. As mentioned in other posts we are having issues with people down here believing what is going on with madam and that she is getting her own way. However it is not like the above things can be faked, you can't fake these ankles as much as you want to try, and no child ever would refuse to go into a toy shop, for a toy if they were putting it on.
Madams Symptoms:
Knees, ankles, hips flexible also slight elbows.
Pain in knees, ankles, legs, sometimes hips back and neck.
Frequent headaches
Fatigue
Bruises easily, slow healing.
Issues with bladder control ( more so suddenly not needing it to be extremely urgent need to go!)
Trouble getting to sleep ( not just her being a pain in the bum)
Ankles, knees giving way
Flat footed when weight bearing.
Soft skin
Over pronation evidence from shoes.
Poor Core muscles ( what helps you balance)
Also tight hamstrings, leg muscles a consequence of her other muscles compensating for her lax joints.
We are having physio again and I'm hoping they will listen and be supportive because we really could do with some supportive medical professionals at the moment. Instead of the negative. I'm hoping to find more people near us that have the same issues and that we can go and talk, because its very hard to talk to people who just do no understand what we have to do or think that madam is putting it on.
Friday, 17 April 2015
Who needs to go abroad?!
On Wednesday we went and spent some time at the beach, it is not something we did a lot as children as we weren't close to the beach ( at least an hour away) and obviously when it was nice enough to go well everyone else had the same idea and we weren't exactly a family for crowds! So it is nice for us to be somewhere so close to the beach, its about 20 minutes on the bus possibly more but that does go round here and there and isn't a direct route! Anyway it's a bus route and its not far at all and the best part is for us? it's FREE basically it was a free day We have a bus pass thanks to hubby's job and i made a pack lunch to take with us and let the kids roam on the beach within reason of course.
The Easter holidays are nearly over, two weeks with the kiddies, we've spent time with family back at home and we've had time to chill out! Back to school next week means once again hectic! Mr goes to Nursery on Monday afternoon ( and i'm hoping he likes it! ) it will give me time to take madam to appointments hopefully without much disruption! He will be in all afternoons and fingers crossed if he enjoys it, i will be sending him in September for the 2 1/2 days. So that i have specific days to take madam to appointments and also him to appointments as Gp finally listened and has referred him to peadiatrics over his clicky, flexi joints and the wear and tear on his shoes that are too much like Madams!! Also we have his speech therapy apps when they come in ( which could be three months... lets not go there seeing as it took 6 months to get seen in the first place) Then all of madams apps! Next week we have physio seeing a specialist and the boss of the last physio we had ( who we really liked and really seemed to get her condition) and we also have a meeting with the welfare officers at school to see if we can come up with some compromise when madam just can't walk. ( work to do at home etc. ) Lets see what is said. Im hoping it will be a productive appointment and not a " how dare you keep madam off school". Lets just see what it brings, to say i'm fed up of appointments and people looking down at me is a understatement!
You would think this picture is something from the Mediterranean, Balearic's etc but no it was Bournemouth! We were lucky however as the south coast got the nice sunny weather and the rest of the country either had cloud and some rain! To be honest though temps of 22 degrees and higher is not exactly spring weather! and the temps are going to fall back down again this weekend but myself and the children have enjoyed it(poor hubby been at work), I also enjoy being able to put the washing out on the line. Nothing smells better then washing on the line.
Now the link below is to Just giving, for my friends and sister in law ( who is only 9) who are running in the Race for life, for someone very important, my mother in law. She was recently diagnosed with breast cancer through a routine mammogram and from diagnosis it was very quick to having it out ( scary fast considering how long it takes NHS to do other thngs!) and we are pleased to say that things are going ok but we want to try and help them raise money for Cancer Research so those going through this cancer and many others can get the help support and care that is very much needed so please if you can, donate doesn't matter if it is only a £1 they all add up!
The Easter holidays are nearly over, two weeks with the kiddies, we've spent time with family back at home and we've had time to chill out! Back to school next week means once again hectic! Mr goes to Nursery on Monday afternoon ( and i'm hoping he likes it! ) it will give me time to take madam to appointments hopefully without much disruption! He will be in all afternoons and fingers crossed if he enjoys it, i will be sending him in September for the 2 1/2 days. So that i have specific days to take madam to appointments and also him to appointments as Gp finally listened and has referred him to peadiatrics over his clicky, flexi joints and the wear and tear on his shoes that are too much like Madams!! Also we have his speech therapy apps when they come in ( which could be three months... lets not go there seeing as it took 6 months to get seen in the first place) Then all of madams apps! Next week we have physio seeing a specialist and the boss of the last physio we had ( who we really liked and really seemed to get her condition) and we also have a meeting with the welfare officers at school to see if we can come up with some compromise when madam just can't walk. ( work to do at home etc. ) Lets see what is said. Im hoping it will be a productive appointment and not a " how dare you keep madam off school". Lets just see what it brings, to say i'm fed up of appointments and people looking down at me is a understatement!
Friday, 10 April 2015
Escape
Sometimes I think it is easier to just escape into a book then to try and realise and think though issues. I realise that this is not the best way to solve anything but at this moment in time i don't care. i feel like a lead weight atm and even the lovely sunshine isn't helping ( doesn't help we can't go outside due to high pollution and i'm not over my chest infection and eldests asthma is a no)
As most know we don't get a great deal of help or support with eldest and her issues every time we do find someone that listens they are taken away or we have to move ( though the moving should be a one time only thing i hope!) Took madam to see a counsellor yesterday as not just myself the school nurse where concerned with how she was coping with things considering she has alot on her plate. Instead of finding someone supportive i really felt that i was put on the spot, asked why the school nurse had been really adamant about an appointment , that all my daughters emotional outbursts are normal for her age and issues and that really i need to have some parental courses to try and cope with her emotional behaviour and her pushing boundaries. That apparently i'm letting her swing the lead.
I'm hurt. I wish people could see how she is when she is trying to come home from school or when i'm trying to get her to school on a morning. This child loves school ( she was in floods of tears because of how long they had off at christmas!) I go through the are you having issues with people at school as we have had one or two and its a no, i don't like her being off hell she drives me up the wall if she is and its rare that she is poorly ill. I wouldn't want to keep her off for the sake of it or to make my life easier because simply... it doesn't. But if she can't physically move her leg or put her foot down on the floor without visable pain then what am i suppose to do when no one is offering help? If she can't walk to school she can't walk around either.
The invisible ness of all this hurts, i wish she had something to see with her knees and ankles etc that people could go oh yes that's wrong and poor you and we'll do this and this to help. No instead we get accused of her getting her own way and needing to drag her to school. WTH? where is the compassion for the child that can't walk to the bus stop without her knee giving way or her ankle and that is something incredibly hard to fake especially when stood right next to child at the time. Being told i need a parenting class is like a kick in the teeth physically and mentally. The you are not coping to raise your own child. Someone else come and walk in our shoes for a bit because atm I don't think i can handle more people looking at me like i have three heads or seeing me as a failure. All we want is help and support not accusations and people talking about us behind our backs about things they don't understand.
Now where did i put that book.
As most know we don't get a great deal of help or support with eldest and her issues every time we do find someone that listens they are taken away or we have to move ( though the moving should be a one time only thing i hope!) Took madam to see a counsellor yesterday as not just myself the school nurse where concerned with how she was coping with things considering she has alot on her plate. Instead of finding someone supportive i really felt that i was put on the spot, asked why the school nurse had been really adamant about an appointment , that all my daughters emotional outbursts are normal for her age and issues and that really i need to have some parental courses to try and cope with her emotional behaviour and her pushing boundaries. That apparently i'm letting her swing the lead.
I'm hurt. I wish people could see how she is when she is trying to come home from school or when i'm trying to get her to school on a morning. This child loves school ( she was in floods of tears because of how long they had off at christmas!) I go through the are you having issues with people at school as we have had one or two and its a no, i don't like her being off hell she drives me up the wall if she is and its rare that she is poorly ill. I wouldn't want to keep her off for the sake of it or to make my life easier because simply... it doesn't. But if she can't physically move her leg or put her foot down on the floor without visable pain then what am i suppose to do when no one is offering help? If she can't walk to school she can't walk around either.
The invisible ness of all this hurts, i wish she had something to see with her knees and ankles etc that people could go oh yes that's wrong and poor you and we'll do this and this to help. No instead we get accused of her getting her own way and needing to drag her to school. WTH? where is the compassion for the child that can't walk to the bus stop without her knee giving way or her ankle and that is something incredibly hard to fake especially when stood right next to child at the time. Being told i need a parenting class is like a kick in the teeth physically and mentally. The you are not coping to raise your own child. Someone else come and walk in our shoes for a bit because atm I don't think i can handle more people looking at me like i have three heads or seeing me as a failure. All we want is help and support not accusations and people talking about us behind our backs about things they don't understand.
Now where did i put that book.
Friday, 20 March 2015
Walking a fine line
As a mum I am my daughters biggest advocate as well as her biggest critic. I have to remember at the end of the say she is 7 years old, and very intelligent. With that she knows when to best get the best reaction from us and by now has learned the best ways to pull the heart strings and get attention. With her issues it is very hard to know what is causing the problems and thus as a parent to know if she may be putting it on a bit for attention or genuinely in pain.
Recently I have been getting it wrong, rather wrong, where we have pushed her a bit too much tried to get her to walk more and thus ended up with rather swollen knees and me feeling guilty!! But the last two weeks have been trying, i've been watching her walking to see if we can "catch" her out but she has got so use to locking her leg in place because her knee hurts it's almost becoming her normal way to walk and nothing i can say is going to change that. I'm torn between letting her do things and trying to keep her from doing more damage before we can get seen by the doctors next week.
I am not denying she is not in pain, her knee is genuinely puffy and her knee cap doesn't seem to be moving as it should but i am finding it increasingly hard to tell what is what! How are we suppose to know? she has a rather low pain tolerance when it comes to her joints ( and scratches, yet her eczema can be bleeding and she doesn't complain) I try not to give over attention when she is in pain and go a while before having to give the pain killers. but when her teacher is saying what i am saying... I am worried we are doing something wrong.
Example being that they went on a trip on Wednesday and had alot of walking, but she did fine, she did crash when she got home and needed medicine at home but at the same time i had dosed her up first thing so that she could enjoy her day! so was that the reason she could enjoy herself ( and had the best trip ever apparently?)
Hubby would probably say I am being to harsh esp at bed time but then i know she has issues, its because she has nothing else to focus on so the pain takes over, ( and the fact she never calls for her dad its always me! )
We can't be the only parents in this position? I hate the invisibleness of it all, that i can't see whats the problem unless its swollen, I do however see the pain when she suddenly tumbles to the side due to her ankle giving way for no reason or the anguish of walking home and we are walking the fine line or what is real and what is not and at the same time feeling crap about it!
Recently I have been getting it wrong, rather wrong, where we have pushed her a bit too much tried to get her to walk more and thus ended up with rather swollen knees and me feeling guilty!! But the last two weeks have been trying, i've been watching her walking to see if we can "catch" her out but she has got so use to locking her leg in place because her knee hurts it's almost becoming her normal way to walk and nothing i can say is going to change that. I'm torn between letting her do things and trying to keep her from doing more damage before we can get seen by the doctors next week.
I am not denying she is not in pain, her knee is genuinely puffy and her knee cap doesn't seem to be moving as it should but i am finding it increasingly hard to tell what is what! How are we suppose to know? she has a rather low pain tolerance when it comes to her joints ( and scratches, yet her eczema can be bleeding and she doesn't complain) I try not to give over attention when she is in pain and go a while before having to give the pain killers. but when her teacher is saying what i am saying... I am worried we are doing something wrong.
Example being that they went on a trip on Wednesday and had alot of walking, but she did fine, she did crash when she got home and needed medicine at home but at the same time i had dosed her up first thing so that she could enjoy her day! so was that the reason she could enjoy herself ( and had the best trip ever apparently?)
Hubby would probably say I am being to harsh esp at bed time but then i know she has issues, its because she has nothing else to focus on so the pain takes over, ( and the fact she never calls for her dad its always me! )
We can't be the only parents in this position? I hate the invisibleness of it all, that i can't see whats the problem unless its swollen, I do however see the pain when she suddenly tumbles to the side due to her ankle giving way for no reason or the anguish of walking home and we are walking the fine line or what is real and what is not and at the same time feeling crap about it!
Thursday, 26 February 2015
I have an allergy... to stupid people!
Normally I wouldn't like to use the term allergy to something more light hearted or joking like the title of this post but this last week people in the non allergy world if you could call it that, have been taking the biscuit to the extreme!!
Came across a group on facebook called "Allergies are bulls***" I'm not one that likes swearing, as I just wasn't brought up like that and it took friends in highschool to "teach" me to swear, I was quite naive I suppose so firstly ugh swearing, secondly this page claims that parents and people are just using the term allergies to garner some attention. Firstly allergies are very serious, being it milk, egg, gluten, nuts etc etc. So someone thinking we are just after attention really strikes at the heart of not just myself but a full group of people who have to handle allergies on a daily basis, which can range from checking the food whilst shopping, putting cream on, taking medicine. It can be a huge part of our lives. So... ouch :(
Also this week we had the findings in research regarding peanuts, a great study which has shown that children who may develop a peanut allergy ( ie those with eczema and a egg allergy) are tested to see if firstly they react to a skin prick test to peanuts and then they slowly build up a tolerance and in 86% of the children they didn't develop a peanut allergy at this stage which is fantastic! ( here is the link about the study http://www.theguardian.com/society/2015/feb/23/feed-babies-peanuts-reverse-allergy-rise)
Since this was broadcast in the news some people perhaps thinking they had good intentions have messaged people i know telling them its ok now just give the little darlings some nuts.. erm. Sorry this isn't going to help those who already have a nut allergy. Someone was also told to give their poor child a snickers, they would only "puff" up a few times. seriously? do people not realise how serious allergies can get?
(Taken from the NHS website)
Came across a group on facebook called "Allergies are bulls***" I'm not one that likes swearing, as I just wasn't brought up like that and it took friends in highschool to "teach" me to swear, I was quite naive I suppose so firstly ugh swearing, secondly this page claims that parents and people are just using the term allergies to garner some attention. Firstly allergies are very serious, being it milk, egg, gluten, nuts etc etc. So someone thinking we are just after attention really strikes at the heart of not just myself but a full group of people who have to handle allergies on a daily basis, which can range from checking the food whilst shopping, putting cream on, taking medicine. It can be a huge part of our lives. So... ouch :(
Also this week we had the findings in research regarding peanuts, a great study which has shown that children who may develop a peanut allergy ( ie those with eczema and a egg allergy) are tested to see if firstly they react to a skin prick test to peanuts and then they slowly build up a tolerance and in 86% of the children they didn't develop a peanut allergy at this stage which is fantastic! ( here is the link about the study http://www.theguardian.com/society/2015/feb/23/feed-babies-peanuts-reverse-allergy-rise)
Since this was broadcast in the news some people perhaps thinking they had good intentions have messaged people i know telling them its ok now just give the little darlings some nuts.. erm. Sorry this isn't going to help those who already have a nut allergy. Someone was also told to give their poor child a snickers, they would only "puff" up a few times. seriously? do people not realise how serious allergies can get?
(Taken from the NHS website)
Symptoms of allergies
The symptoms of an allergic reaction can vary, depending on which substance (allergen) you are allergic to.
If you are allergic to substances in the air – such as pollen, animal dander and dust mites – the symptoms usually include:
- rhinitis – sneezing and a blocked, itchy or runny nose
- conjunctivitis – itchy, red, streaming eyes
- asthma – wheezing, breathlessness and a cough
If you are allergic to a certain food or medication, symptoms can include:
- urticaria (hives) – a raised, itchy, red rash
- swelling – usually affecting the lips, tongue, eyes and face
- abdominal pain, vomiting and diarrhoea
- atopic eczema – the skin becomes dry, red and cracked
You can also be allergic to substances coming into direct contact with the skin, such as perfumes, soaps, hair dyes and metal jewellery. This causes a type of eczema known as contact dermatitis.
It is important to remember that these symptoms can also be caused by other conditions, so see your GP for advice if you're not sure what's causing your symptoms.
Sensitisation
The symptoms of an allergic reaction do not happen the first time you come into contact with an allergen, but at a later point of contact.
This is because the body’s immune system has to develop sensitivity to the allergen before you can become allergic to it. In other words, your immune system needs to recognise and memorise the allergen (for example, pet hair or pollen) and then make antibodies against it. This process is known as sensitisation.
The time taken to become sensitised to an allergen varies from days to years. Some people stop in the sensitisation phase, as they experience symptoms, but never fully develop an allergy.
Anaphylaxis
In very rare cases, an allergy can lead to a severe allergic reaction, called anaphylactic shock, which can be fatal.
Most allergic reactions occur locally in a particular part of the body, such as the nose, eyes or skin. In anaphylaxis, the allergic reaction involves the whole body and usually happens within minutes of coming into contact with a particular allergen.
The symptoms of anaphylactic shock can include any or all of the following:
- swelling of the throat and mouth
- difficulty swallowing or speaking
- difficulty breathing
- a rash anywhere on the body
- flushing and itching of the skin
- stomach cramps, nausea and vomiting
- a sudden feeling of weakness, due to a fall in blood pressure
- collapsing and becoming unconscious
However it is obvious in other circles that people really don't know how serious allergies can get. I have a friend who has let me discuss an incident that has occurred this week. my friends child has several food allergies, most of which lead to Anaphylactic reactions. A child at my friends child's school decided to take it upon themselves to see if they were really allergic to the foods they have said they are. This child has managed to take the other child's lunch box and contaminate it with yoghurt, taking great care to put it in the wrap for lunch and in the bottom of fruit compartments. Thankfully the child was seen messing with the lunch and the right people were alerted before anything serious where to happen! My friend had to come and collect the lunch and provide a new one which obviously is a cost if people are like us and like to plan and have a certain amount in! This could cause issues, or rather it would if it were us! The parents of the child in the wrong were informed of the incident and their response to my friend " Are X's allergies real? " and proceeded to say the school had been a bit harsh to their child.
If i had found out that one of my children had taken someone's lunch and decided to do their own experiments to see if a child was really allergic to an item of food I would go balistic. This could have had the real potential to kill a child and the parents are very blaise about it all? HOW? Why are they not up in arms that their child could have caused the death of another!!! I would be also very apologetic to the allergy child's parents. But this is not the case. I am so angry on behalf of my friend and really want to urge people to take a moment and think.
Allergies have the potential to kill, no ifs and buts there really are children out there and people as we have seen in the news recently that are dying due to a lack of understanding on allergies. We don't do this for attention.
Personally I would rather not have to check menus every time we want to eat, or labels, not have to carry a bag full of life saving medicine everywhere for just incase.
I would rather have a easy life, no, eczema, asthma, allergies, hayfever.(On top of her joints being in agony every day.. ) But we are just not so lucky as everyone else so its something we have to man up with and its taken a year but we are manning up!
Now there is a "cure" for the stupid people, its called reading and gaining some knowledge. I hope that they never have to face what us in the allergy community do.
Friday, 13 February 2015
February half term already!
This year is going by so fast already, we are at February half term, so the kids have been at school 5 weeks since new year! scary! we celebrated the little boys 3rd birthday last Saturday! with a trip to London to go and see some dinosaurs and under ground trains that he loves so much!
This is how apparently Chelle is spelled in Starbucks outside Enbankment station.... I'm going to pick a new name for myself for these places!!
It was a good day, we managed to have lunch somewhere in peace ( imagine that!) though the museums where very busy and we had to que to see the dinosaurs in the natural history museum for a good 40 minutes! which was not good for our eldest who was struggling even when topped up with paracetamol and ibuprofen. As we were not running around London trying to show our friend around the tourist stuff we thought we would try and see if she could manage without us hiring a wheelchair... that was a huge mistake!! just because we put her through so much pain.
Went to the doctors as our latest pram broke due to sometimes needing her to go in so we could get home and or to drs appointments when unable to walk and asked for a wheel chair referral. Right i know what most of you are probably thinking, like what the hell sometimes we see this child running around being "normal" but there are days when she just can't walk, she more or less gets down stairs and collapses on the couch. like this morning ( thank goodness its an inset day at school!) because her knee is red hot and sore. We can't do simple shopping trips! We can't have family days out without screaming pain. It's not just stuff she doesn't want to do its everything! she ends up locking her knee and walking very very strangely.
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| Birthday boy! |
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| Eldest and her beloved stuffed dog Georgie |
It was a good day, we managed to have lunch somewhere in peace ( imagine that!) though the museums where very busy and we had to que to see the dinosaurs in the natural history museum for a good 40 minutes! which was not good for our eldest who was struggling even when topped up with paracetamol and ibuprofen. As we were not running around London trying to show our friend around the tourist stuff we thought we would try and see if she could manage without us hiring a wheelchair... that was a huge mistake!! just because we put her through so much pain.
Went to the doctors as our latest pram broke due to sometimes needing her to go in so we could get home and or to drs appointments when unable to walk and asked for a wheel chair referral. Right i know what most of you are probably thinking, like what the hell sometimes we see this child running around being "normal" but there are days when she just can't walk, she more or less gets down stairs and collapses on the couch. like this morning ( thank goodness its an inset day at school!) because her knee is red hot and sore. We can't do simple shopping trips! We can't have family days out without screaming pain. It's not just stuff she doesn't want to do its everything! she ends up locking her knee and walking very very strangely.
As shown in the video which she didn't know was being filmed, is from over the Christmas break when we spent some time up north with family. We had already had a 20/ 30 minute break because of pain there and she didn't want to go into the toy shop... a sure sign that all isn't right!!
Since showing the physio that video she refused to do anything more to help our daughter as she didn't want to cause any more damage to her and tbh ever since we started physio her issues have been getting worse not better not sure if that is a coincidence or not! Finally got a referral to a rhumatologist! though i have been telling them since we moved that we needed one, it shouldn't be such a farce! That is what i feels like all the time, a farce, a fight to just get someone to listen and not think i'm a over reactive parent. It is so hard to stand and watch as you daughter struggles to walk home from school and its not terribly far. We have no referral to wheel chair services and have to wait for the rhumatolgist appointment in March which isnt terribly far away thankfully ( and i'm dragging hubby to it for back up! )
We can only hope that like last year that we will get more answers and more support because it feels sometimes that we are floundering in all this mess!
Hopefully we have family visiting this week and we can't wait! just wish we could see everyone else too! but we can't always be the ones traveling up even if we are the ones that moved! Scary how much it costs to come up for a visit! £80 ish in fuel but prob less with the price of fuel atm( that is inclusive of both ways). You then have food at service station unless you take your own so both ways possible £20 each way, normally buy a magazine for the children to do in the car on the way up so thats at least £2 each. Then anything whilst we are up there, food days out O_O scary!!! Also i know our family can't keep paying that either so makes it one of the harder reasons for our move. Because i do miss how close everyone was really compared to now!
Not sure when our next trip up is, thought possibly at Easter but not sure! will have to discuss with hubby for best time and when he can have time off work and madam off school etc. so many factors, you don't think of these things when you move, we once said we would try and be up once a month but that is just not fully feasable with how quick a visit goes and how long it takes to travel up. A weekend just doesn't seem long enough :( esp when you have several lots of family to see. ( as we couldn't go up and not see people!! Hopefully this year we will learn to cope with the traveling and quick visits.
Don't take for granted the family you see every week because you soon miss everything. Even if we didn't see everyone every week it was the opportunity too that is now missing.
Sunday, 4 January 2015
To find and give support
I've had my Eczema support group for the last 5 years! yes the group had to change beginning of last year due to it getting to big and too out of hand and far to many arguments on topical steroid addiction that i changed the setting to be solely UK instead of world wide and that all discussions on TSA would be pointed towards the right groups but not really allowed in my group. I do enjoy having the group though, i like being able to give advice and support to people who are in the same shoes as my eldest! It is a lovely little group fingers crossed we haven't had any arguments in this new one at all! and barely any issues and it is such a huge relief when not having to delete people or have stern words as I am not great with confrontation! https://www.facebook.com/groups/1409148029366627/ is the link to the group for anyone reading that may be interesting but you must be in the UK.
I did set up a in person group but unfortunatly due to moving had to stop this and we only had two constant members myself and my friend! it was just a shame that we were starting to get the word out there more before we had to move but alas it just wasn't meant to be! However now that we are down in Bournemouth I am hoping to set up a group down here as there isn't a group in either Bournemouth or Poole! so an opening at least! I do intend to get things under way and see what can be done as i do really want to set a group going again and feel like I am doing something useful.
On this note i would like to have a look into groups for Hypermobility. I do believe there is one in Poole every so often but would have to try and work it round school and to take a look into it more. Or even see if i could set up a support group for that too! though don't want to overwhelm myself or the kids as after all i'll be dragging the youngest to all these!
In doing these things I am hoping to make new friends but to also get some support, advice and to give it out as well as finding people who understand what we go through which can be hard as not everyone can understand why the 7 year old can run around one minute and then the next be in complete agony and not able to walk. ( it is something to be seen really) We can't do normal trips out without some sort of pain and keeping her topped up with her meds which is great... when they work. ( also who wants to keep having to give their child pain killers just to get through the day!)
I suppose in a way i should be greatful for the likes of Facebook because i have been able to make my own group and also help admin a group on Developmental coordination disorder (Dyslexia, Dyspraxia etc etc) i have found a group on Hypermobility as well as one for parents of children with nut allergies ! If it wasn't for some of these groups i would have lost my marbles ages ago! As well as gaining wonderful online friends and knowledge we get support from each other which is so so vital. Now if i can do this in person and find someone to go for a coffee with to have a little whinge with each other about our problems i won't have to vent so much on here!!
Got Physio appointment tomorrow for eldest should be very interesting considering the terrible few weeks we have had with instances of not being able to walk at all! and painkillers not working. I'm not holding out for a miracle but i do think we need some aids to help when she is having considerably bad days. Fingers crossed! It's going to be a hell of a long day.
Thursday, 1 January 2015
The end of 2014 and the start of 2015
Well it is the 1st of January 2015.. I know everyone will be doing what I'm doing, going over the last year and looking forward to this one! however there is only so much you can post on Facebook with what you would like to say!
I think that 2014 was a year of learning and growing ( even if hubby says how much more can we grow up we are adults!) But personally i think we have had to grow up and learn how to cope with alot of things and to take huge steps.
In March our eldest was diagnosed with a nut allergy, really rather scary! especially when you start seeing how much it is in everything yes even just may contains but not all companies are covering their back there, they have to have a proven risk to put on a may contain. I know people think I am paranoid and over protective but if it was your child would you let them play Russian Roulette with something that could potentially kill them? no you wouldn't so don't judge me when I am trying to protect my daughter from having a possible serious reaction. Epi pens after all should be used in an emergency not an excuse to eat your allergen. Being on this particularly journey has opened up my eyes in what we have in our foods and wondering why, and asking companies why there are these things and why is there a risk? and having big arguments along with other nutty mums with the giants like Tesco! (not good if you get annoyed easily!!)
In July we finally found out what was causing our eldest the pain in her joints, and that she has joint hypermobility syndrome. Now most people might know of hypermobility with people who are/ where termed as being double jointed! Now alot of people being hypermobile doesn't cause any issues and some actually find it useful, alot of footballers and dancers are actually hypermobile and it makes them more supple! Then you get people like our eldest, who gets the pain with it, only 10-15% of those with hypermobility actually suffer with the syndrome. (My source being Arthritis UK) Knowing what is wrong is just one part of the journey. Yes great we know she has JHMS ( joint hypermobility syndrome) but trying to get the help after that seems like hitting your head against a brick wall! We are trying to keep her active, but a general walk around the supermarket is enough to cause widespread pain and wipe her out. Don't get me wrong some days shes ok, she can run around with her brother, walk to school and be ok. Then you have instances where she literally can't get out of the house. ( This is not for the lack of love for school as she was upset she was going to be off school for the winter break!) It is very very draining and not alot of people understand or i think can deal with my moaning about it. I have cried over it, more then i should perhaps and i know there are people worse off then us. But this is a huge thing for us to deal with. Especially having no one close by to lean on. We have physio and a couple exercises and need her to get her back to swimming but we needed to get settled in to the new area and house first!
Which leads us to the big thing! our move to Bournemouth!! We moved in September and have been here now for just over 3 months. Silly, crazy hectic! it is hard being away from our family and friends, family the most and on our trips back that does hit home rather hard esp when we are trying to split our time when seeing everyone. I hope the kids understand our decision when they are older, that we wanted something better for them, better environment. Eldest adores her school and they are so understanding of her issues ( all of them!) when the teacher wants to take you to hospital and rings up to see how everything is as she knows we have no one down here.. that is a sign of a good school ( or perhaps just a good teacher! ) We are however finding the car trips up and down easier and not so much of a slog we are getting use to the long trip so it doesn't feel so draining.. unless children are being sick!
I am not sure what 2015 is going to bring for us now that we are here, I am hoping that we will get some help with our eldest, someone to give us good points to do instead of a blaise well do this this and this and she will be fine. No.. shes not. Our youngest will go to nurser this year after Easter as his birthday is in February he starts the term after then... Fingers crossed he will be willing to go! but i will cross that bridge when we get there! we will also see if he starts to talk more! Not that he doesn't make himself known but we rarely get much more then a few words out of him! Nothing else is planned, no holidays thought of as most of our holiday time will be spent coming back to see family, however we do want to go to Cornwall whilst we are down here!
No big birthdays this year as that is next year! So we will just have to see what the future brings for us! It will never be a smooth ride but I am hoping that there arn't as many bumps in the road. Looking ahead! Here is hoping it is smooth for everyone i know and love xx
I think that 2014 was a year of learning and growing ( even if hubby says how much more can we grow up we are adults!) But personally i think we have had to grow up and learn how to cope with alot of things and to take huge steps.
In March our eldest was diagnosed with a nut allergy, really rather scary! especially when you start seeing how much it is in everything yes even just may contains but not all companies are covering their back there, they have to have a proven risk to put on a may contain. I know people think I am paranoid and over protective but if it was your child would you let them play Russian Roulette with something that could potentially kill them? no you wouldn't so don't judge me when I am trying to protect my daughter from having a possible serious reaction. Epi pens after all should be used in an emergency not an excuse to eat your allergen. Being on this particularly journey has opened up my eyes in what we have in our foods and wondering why, and asking companies why there are these things and why is there a risk? and having big arguments along with other nutty mums with the giants like Tesco! (not good if you get annoyed easily!!)
In July we finally found out what was causing our eldest the pain in her joints, and that she has joint hypermobility syndrome. Now most people might know of hypermobility with people who are/ where termed as being double jointed! Now alot of people being hypermobile doesn't cause any issues and some actually find it useful, alot of footballers and dancers are actually hypermobile and it makes them more supple! Then you get people like our eldest, who gets the pain with it, only 10-15% of those with hypermobility actually suffer with the syndrome. (My source being Arthritis UK) Knowing what is wrong is just one part of the journey. Yes great we know she has JHMS ( joint hypermobility syndrome) but trying to get the help after that seems like hitting your head against a brick wall! We are trying to keep her active, but a general walk around the supermarket is enough to cause widespread pain and wipe her out. Don't get me wrong some days shes ok, she can run around with her brother, walk to school and be ok. Then you have instances where she literally can't get out of the house. ( This is not for the lack of love for school as she was upset she was going to be off school for the winter break!) It is very very draining and not alot of people understand or i think can deal with my moaning about it. I have cried over it, more then i should perhaps and i know there are people worse off then us. But this is a huge thing for us to deal with. Especially having no one close by to lean on. We have physio and a couple exercises and need her to get her back to swimming but we needed to get settled in to the new area and house first!
Which leads us to the big thing! our move to Bournemouth!! We moved in September and have been here now for just over 3 months. Silly, crazy hectic! it is hard being away from our family and friends, family the most and on our trips back that does hit home rather hard esp when we are trying to split our time when seeing everyone. I hope the kids understand our decision when they are older, that we wanted something better for them, better environment. Eldest adores her school and they are so understanding of her issues ( all of them!) when the teacher wants to take you to hospital and rings up to see how everything is as she knows we have no one down here.. that is a sign of a good school ( or perhaps just a good teacher! ) We are however finding the car trips up and down easier and not so much of a slog we are getting use to the long trip so it doesn't feel so draining.. unless children are being sick!
I am not sure what 2015 is going to bring for us now that we are here, I am hoping that we will get some help with our eldest, someone to give us good points to do instead of a blaise well do this this and this and she will be fine. No.. shes not. Our youngest will go to nurser this year after Easter as his birthday is in February he starts the term after then... Fingers crossed he will be willing to go! but i will cross that bridge when we get there! we will also see if he starts to talk more! Not that he doesn't make himself known but we rarely get much more then a few words out of him! Nothing else is planned, no holidays thought of as most of our holiday time will be spent coming back to see family, however we do want to go to Cornwall whilst we are down here!
No big birthdays this year as that is next year! So we will just have to see what the future brings for us! It will never be a smooth ride but I am hoping that there arn't as many bumps in the road. Looking ahead! Here is hoping it is smooth for everyone i know and love xx
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