Here we are once again, wondering where the hell the year is going! To say it has been a little manic might be a bit of a understatement!
As we all know it is never ever quite in this house and if it isn't one thing it is another, even when people comment, when do you ever get a break? you really do have to stop and think, do we get a break? Short answer no. Do parents ever get a break though? can't answer that one! We are not in any way a normal house hold!
We have been here now in Dorset for 3 years! 3.. my son little monkey man ( or maybe not so little he is getting so tall!! really) has lived longer here then he did up north. That is a really scary scary thought. Will take a lot longer for us to say that!
Another scary scary thought is that my beautiful and very intelligent baby girl is the big 10 this Sunday. I have been a mummy for 10 years! This time 10 years ago I was stuck in hospital, having had bleeding for the previous two weeks I was on official bed rest and going slightly bonkers with it. Thinking back I was only 21.. and about to have my first major surgery as there was no other way we would get through it all without a c section. So much has changed since then.
I am so incredibly proud of the young lady she is becoming, she faces so much for her age and alot more then her counterparts and to be honest most adults I know! And you know she comes through it every day, and when she does break through a headache and she smiles and is happy and running with her friends or her brother it makes the world seem at ease to the chaos that is is normally in.
We added more to her list recently, she broke 3 bones in her hand just before the summer holidays but she did it in an unusual way! never ever straight forward our madam. she had micro fractures that could only be seen on an MRI and then fluid in her bones which was the oddity. So I do believe we are going to have to watch her in future, and be aware that it might not just be a one off.
She has officially added migraines to her list of issues, and for the time being we are going to have to take off extra things from her diet. (Chocolate, cheese, citrus, caffeine) oh the fun we've had with that the last few days. This is not hopefully a long term issue and that we will be able to add them back in just to see if there are any triggers for her. we know noise is a huge issue and being tired! .. tired we can try and sort noise is harder. The tiredness is difficult especially when she is struggling with getting to sleep due to the other issues. Honestly, huge circle all the time.
Personally it does take its toll, it has taken its toll on me and the house. I won't go into a pity party again!
Autumn is here and i love Autumn, the fallen leaves the frosty foggy mornings. Snuggling up under blankets, and hot chocolate coming out ( or for madam hot fruit tea!) I can only hope that things will continue to improve as we move onto Winter and into 2018!
Thursday, 5 October 2017
Monday, 12 June 2017
Lets see how we get on
Where have we been? seems like I've gone far recently but haven't. Ever felt like that? feel I've travelled hundreds of miles and not always a good journey and back again.
Why? Well those who read regularly will know that little man is looking like he is having the same issues as his sister, and has some things that she doesn't suffer with! Some people might be like bloody hell you have a lot to deal with, neighbours have even commented that I am normally out and about trying to sort stuff out but sometimes you just have to deal with these things, as a parent you don't have any other choice! you have to deal with the good and the bad.
It seemed that it was taking a long (loooooooong) time to get anywhere with little mans referrals, having chased up and chased up and been around in circles and I really do mean circles here. As after all the initial sighting of mr's tremor was back in Feb! And having not really noticed it before I notice it so often now! Anyway scroll back a few weeks ago when I was chasing the appointments up again! we finally got one! and very quickly then had blood tests and a very scary for a 5 yr old MRI scan! That as a parent was bloody daunting, because he is 5..and I wasn't sure if he would cope! he hates noise! but he managed with his faithful sidekicks ( bobby and squirrelly ) Everything in those senses have come back clear ( phew!!) But we still don't know whats going on.
So thoughts? possibly muscle weakness due to his hypermobility ( which I do think will get confirmed as the syndrome due to pain he is having) or the only other thing that comes up when you try and look up tremors, an Essential tremor! which really does seem to tick the boxes. We will have to wait till July to find out what his consultant thinks but have to praise her! she rang with both his blood and mri results when other people have just left us to wait and find out! As a parent it is very hard to sit and wait, whilst you see your child struggling, unfortunately I have many years experiences of this waiting lark!!
I know they say don't google things as the scary stuff comes up but in this day and age of technology apart from going and trawling through medical books, what are people going to do? or am i suppose to sit and wait and ponder? If I hadn't been doing research etc then i would never ever have pushed for madam to get looked at properly for her nut allergy or her hypermobility! as I wouldn't know any better and i would be fully trusting the drs around us which, is very hard when they shrug stuff off. ( yes they do!)
We have a busy few weeks ahead gastro appointment this week to talk about madam finally ( remember a few posts back about her having hospital visits and mr having chicken pox yeah finally going to discuss the tummy) which is "great" timing as she now is having issues with blasted peas -_- Can't wait to see whats made of that and everything else. Need some def plans cemented into place!
France holiday is coming! ... and I honestly can't wait we need a good break! ( with little to no issues please :) )
Why? Well those who read regularly will know that little man is looking like he is having the same issues as his sister, and has some things that she doesn't suffer with! Some people might be like bloody hell you have a lot to deal with, neighbours have even commented that I am normally out and about trying to sort stuff out but sometimes you just have to deal with these things, as a parent you don't have any other choice! you have to deal with the good and the bad.
It seemed that it was taking a long (loooooooong) time to get anywhere with little mans referrals, having chased up and chased up and been around in circles and I really do mean circles here. As after all the initial sighting of mr's tremor was back in Feb! And having not really noticed it before I notice it so often now! Anyway scroll back a few weeks ago when I was chasing the appointments up again! we finally got one! and very quickly then had blood tests and a very scary for a 5 yr old MRI scan! That as a parent was bloody daunting, because he is 5..and I wasn't sure if he would cope! he hates noise! but he managed with his faithful sidekicks ( bobby and squirrelly ) Everything in those senses have come back clear ( phew!!) But we still don't know whats going on.
So thoughts? possibly muscle weakness due to his hypermobility ( which I do think will get confirmed as the syndrome due to pain he is having) or the only other thing that comes up when you try and look up tremors, an Essential tremor! which really does seem to tick the boxes. We will have to wait till July to find out what his consultant thinks but have to praise her! she rang with both his blood and mri results when other people have just left us to wait and find out! As a parent it is very hard to sit and wait, whilst you see your child struggling, unfortunately I have many years experiences of this waiting lark!!
I know they say don't google things as the scary stuff comes up but in this day and age of technology apart from going and trawling through medical books, what are people going to do? or am i suppose to sit and wait and ponder? If I hadn't been doing research etc then i would never ever have pushed for madam to get looked at properly for her nut allergy or her hypermobility! as I wouldn't know any better and i would be fully trusting the drs around us which, is very hard when they shrug stuff off. ( yes they do!)
We have a busy few weeks ahead gastro appointment this week to talk about madam finally ( remember a few posts back about her having hospital visits and mr having chicken pox yeah finally going to discuss the tummy) which is "great" timing as she now is having issues with blasted peas -_- Can't wait to see whats made of that and everything else. Need some def plans cemented into place!
France holiday is coming! ... and I honestly can't wait we need a good break! ( with little to no issues please :) )
Saturday, 20 May 2017
The overall picture, as requested!
This is a entry with a bit of a difference today, as its not a vent/ recall of recent events and goings on at home. This is a special one. My close friend Emma is a counsellor and she has a Facebook page as well as a website ( will link at the end) where she focuses on Person centred/ existential counselling.
On her Facebook page she covers various topics, self development, boundaries, lots of things! I can honestly say she makes it easy to talk to and helps talk through issues and I know she is a very close friend but I feel this would be the case if I were a client instead. She wants to look at Motherhood and coping with various issues, including postnatal depression and seeing as I help admin on the page and have had the blog for years she has asked to share my blog so I offered to do a post!
The hard part I think is where to start. Or perhaps it's not so hard, my eldest is 10 this year! this time 10 years ago was a very stressful time, for reasons I won't get into on here but having already suffered a miscarriage earlier in that year being pregnant again I was wanting to keep everything as calm as possible, though it seemed fate had other ideas. I believe it is these events and more that led to my first dip into postnatal depression. I won't say depression in general as I do think I may have suffered alot with it in college and even high school and it would explain alot but won't go into that today.
Madam was born early October, 4 weeks early and a very tiny dot at 4lb 14 oz, I could pick her up with one hand! nothing I had fit her and my mum and mother in law had to rush out to buy their new granddaughter some clothes! no one warned us she would be small. She was born early due to myself having placenta previa ( the placenta completely blocked the way out) and I had already been stuck in hospital on bed rest for two weeks before she arrived via c section. So it was a very stressful time! baby blues hit two days after she was born, I was so upset, I wanted to go home, madam wasn't really drinking any milk, I was desperately trying to breast feed and struggling as she was so small and the hospital at that time were not very supportive, told me to go and ask another mum for the breast pump after having a section! and being socially anxious that was a no! Basically she was so small she was just sleeping but I've only really come that this conclusion later on the hospital didn't! but they were insistent she needed to drink so we could go home! It was during this time I noticed madam had very dry skin, not the baby soft skin everyone speaks of and it would be later that i realised this was the start of her Eczema.
I can't remember now how or when I was diagnosed with postnatal depression, I remember friends of the time wondering why I was depressed or how could I be when I had a lovely little baby about. It's hard! she was so small, and not feeding and being a new mum takes its toll you don't realise everything until you are going through the motions that this little creature is now completely reliant on you and you made it and its scary! Very! the smallest things made me worry, worry something was going to happen to her like when out walking near the canal that we would accidentally let go of the pram and it would go into the water, it was unlikely but I had these thoughts going through my head! I ended up going to counselling and we managed to work some things out before madam turned 1.
Now I don't personally think everything was resolved and I am very good at bottling things up, madams skin carried on getting worse and we eventually learned she had eczema and it wasn't just a bit of dry skin, it was the type of eczema that you really had to work with and try and sort out. I wish I could say 10 years down the line that things had greatly improved but alas they haven't.
Sometimes as a mum I believe you are made to feel like you have to have everything perfect, children behaved, that eat their fruit and veg, that go to bed on time, who can share and play nice, who can do everything before they can go to school. It is a lot of pressure on parents! I know this is not the case and any normal mum will say that there are going to be trouble their little darlings are not angels all the time! And I know mine are not. I suppose it does rely on how bothered you are on the social side, of other people's opinions. Which I'm afraid has affected me and always has done and I hate to say it is not something I can just switch off!
It is the expectations that are landed onto parents, and some breeze through it, or rather "seem" to and others don't after all we have no idea what is going on behind closed doors.
As a family we have had to cope with depression and other health issues and the toll it takes can be extremely hard. Both of my children have health issues, the youngest currently under investigation for things and tbh I don't know what! as well as madams issues with her eczema, her allergies, hypermobility etc etc. As a mum personally I find it extremely difficult to keep going some days, when everything is going wrong, like madam is struggling to walk to school but you've been told to get her in no matter how long it takes. That you are constantly on the look out for the foods which could essential kill her, the struggles of the fatigue hit 5 yr old. .. It is very emotionally draining!
I have had 2 bouts of postnatal depression, treated differently, and have since been through counselling again but that was due in person to all the health needs the children have at the moment and feeling I suppose inadequate as a parent to deal with it all. I know some think I handle things really well, that all the kids appointments etc are just water off a ducks back. Shock horror though, all the apps do get to me ! Some nights I am up and down stairs several times, seeing to crying upset, in pain children. Every night I am with either of the children, I never get a full nights sleep... ie more then a couple of hours without being disturbed. This is why some days I get home from the school run and i just sit.. and do nothing yes.. that's right nothing, I veg.. because when the kids are home I don't get a rest or a break. my break is during the day, though if anything is needed or any what not I do do things.
Not much can be done about this, We see drs, and we go along best we can. As it's said we will deal with what comes and know we can because we have already been through so much as a family.
Tips to dealing with it all? Not sure I have many, I like my coffee, need my coffee if I feel like I can handle being out I go for a walk, Talk to friends if they are there to listen, which I know with health issues sometimes it feels like you are going on about the same things all the time. ( and I think as a friend if you are on the receiving end of the rants just offer the coffee/ tea and it will be ok! ) You have to talk, don't bottle it up, don't keep it all in because thats when you start dwelling and start stewing on all the ideas and the bad thoughts. It won't get better that way!!
Find the things that take your interest, hobbies etc and make time for them. Talk to a health professional if you feel that dark thoughts, or disturbing thoughts or if something just isn't right. Seek out support groups, they are there trust me!
Talk. As hard as it is talk. As someone who bottles or has been known to bottle because I fear what people will say or that I bore people. Some.. I am certain I have lost because they have no idea how to respond or even chat to me any more as we have nothing in common any more. I am a mum of children, children who do have issues and need extra care . sometimes my "identity" has gone because I'm not Rachelle, I'm x's mum.
Sometimes you have to take your place back make sure you have some "you" time. It is important because if you are not in the right state of mind you are not going to be able to fully help your children.
Thank you for taking the time to read and put up with this entry today, It has helped me get some thoughts out.. things that can be quite close guarded. I am not afraid to say I suffer with depression or depressive bouts, it is understandable for someone in my shoes. But it is ok for anyone to suffer! don't be afraid. xx
( Links! as promised! Please take a look x )
https://www.facebook.com/emmascounsellinghaven/
https://plusguidance.com/emmashaven
On her Facebook page she covers various topics, self development, boundaries, lots of things! I can honestly say she makes it easy to talk to and helps talk through issues and I know she is a very close friend but I feel this would be the case if I were a client instead. She wants to look at Motherhood and coping with various issues, including postnatal depression and seeing as I help admin on the page and have had the blog for years she has asked to share my blog so I offered to do a post!
The hard part I think is where to start. Or perhaps it's not so hard, my eldest is 10 this year! this time 10 years ago was a very stressful time, for reasons I won't get into on here but having already suffered a miscarriage earlier in that year being pregnant again I was wanting to keep everything as calm as possible, though it seemed fate had other ideas. I believe it is these events and more that led to my first dip into postnatal depression. I won't say depression in general as I do think I may have suffered alot with it in college and even high school and it would explain alot but won't go into that today.
Madam was born early October, 4 weeks early and a very tiny dot at 4lb 14 oz, I could pick her up with one hand! nothing I had fit her and my mum and mother in law had to rush out to buy their new granddaughter some clothes! no one warned us she would be small. She was born early due to myself having placenta previa ( the placenta completely blocked the way out) and I had already been stuck in hospital on bed rest for two weeks before she arrived via c section. So it was a very stressful time! baby blues hit two days after she was born, I was so upset, I wanted to go home, madam wasn't really drinking any milk, I was desperately trying to breast feed and struggling as she was so small and the hospital at that time were not very supportive, told me to go and ask another mum for the breast pump after having a section! and being socially anxious that was a no! Basically she was so small she was just sleeping but I've only really come that this conclusion later on the hospital didn't! but they were insistent she needed to drink so we could go home! It was during this time I noticed madam had very dry skin, not the baby soft skin everyone speaks of and it would be later that i realised this was the start of her Eczema.
I can't remember now how or when I was diagnosed with postnatal depression, I remember friends of the time wondering why I was depressed or how could I be when I had a lovely little baby about. It's hard! she was so small, and not feeding and being a new mum takes its toll you don't realise everything until you are going through the motions that this little creature is now completely reliant on you and you made it and its scary! Very! the smallest things made me worry, worry something was going to happen to her like when out walking near the canal that we would accidentally let go of the pram and it would go into the water, it was unlikely but I had these thoughts going through my head! I ended up going to counselling and we managed to work some things out before madam turned 1.
Now I don't personally think everything was resolved and I am very good at bottling things up, madams skin carried on getting worse and we eventually learned she had eczema and it wasn't just a bit of dry skin, it was the type of eczema that you really had to work with and try and sort out. I wish I could say 10 years down the line that things had greatly improved but alas they haven't.
Sometimes as a mum I believe you are made to feel like you have to have everything perfect, children behaved, that eat their fruit and veg, that go to bed on time, who can share and play nice, who can do everything before they can go to school. It is a lot of pressure on parents! I know this is not the case and any normal mum will say that there are going to be trouble their little darlings are not angels all the time! And I know mine are not. I suppose it does rely on how bothered you are on the social side, of other people's opinions. Which I'm afraid has affected me and always has done and I hate to say it is not something I can just switch off!
It is the expectations that are landed onto parents, and some breeze through it, or rather "seem" to and others don't after all we have no idea what is going on behind closed doors.
As a family we have had to cope with depression and other health issues and the toll it takes can be extremely hard. Both of my children have health issues, the youngest currently under investigation for things and tbh I don't know what! as well as madams issues with her eczema, her allergies, hypermobility etc etc. As a mum personally I find it extremely difficult to keep going some days, when everything is going wrong, like madam is struggling to walk to school but you've been told to get her in no matter how long it takes. That you are constantly on the look out for the foods which could essential kill her, the struggles of the fatigue hit 5 yr old. .. It is very emotionally draining!
I have had 2 bouts of postnatal depression, treated differently, and have since been through counselling again but that was due in person to all the health needs the children have at the moment and feeling I suppose inadequate as a parent to deal with it all. I know some think I handle things really well, that all the kids appointments etc are just water off a ducks back. Shock horror though, all the apps do get to me ! Some nights I am up and down stairs several times, seeing to crying upset, in pain children. Every night I am with either of the children, I never get a full nights sleep... ie more then a couple of hours without being disturbed. This is why some days I get home from the school run and i just sit.. and do nothing yes.. that's right nothing, I veg.. because when the kids are home I don't get a rest or a break. my break is during the day, though if anything is needed or any what not I do do things.
Not much can be done about this, We see drs, and we go along best we can. As it's said we will deal with what comes and know we can because we have already been through so much as a family.
Tips to dealing with it all? Not sure I have many, I like my coffee, need my coffee if I feel like I can handle being out I go for a walk, Talk to friends if they are there to listen, which I know with health issues sometimes it feels like you are going on about the same things all the time. ( and I think as a friend if you are on the receiving end of the rants just offer the coffee/ tea and it will be ok! ) You have to talk, don't bottle it up, don't keep it all in because thats when you start dwelling and start stewing on all the ideas and the bad thoughts. It won't get better that way!!
Find the things that take your interest, hobbies etc and make time for them. Talk to a health professional if you feel that dark thoughts, or disturbing thoughts or if something just isn't right. Seek out support groups, they are there trust me!
Talk. As hard as it is talk. As someone who bottles or has been known to bottle because I fear what people will say or that I bore people. Some.. I am certain I have lost because they have no idea how to respond or even chat to me any more as we have nothing in common any more. I am a mum of children, children who do have issues and need extra care . sometimes my "identity" has gone because I'm not Rachelle, I'm x's mum.
Sometimes you have to take your place back make sure you have some "you" time. It is important because if you are not in the right state of mind you are not going to be able to fully help your children.
Thank you for taking the time to read and put up with this entry today, It has helped me get some thoughts out.. things that can be quite close guarded. I am not afraid to say I suffer with depression or depressive bouts, it is understandable for someone in my shoes. But it is ok for anyone to suffer! don't be afraid. xx
( Links! as promised! Please take a look x )
https://www.facebook.com/emmascounsellinghaven/
https://plusguidance.com/emmashaven
Wednesday, 19 April 2017
Refreshing change
It has been a while since I can honestly say that we have had a good mostly stress free break away from home! Going back to family is stressful, not really the seeing family part, though trying to make equal time for all is really very hard and sure we haven't quite got it right yet! But everything else that it involves,
I hate the stress of leaving home, the is the house going to be ok, ( ie will someone break in), have we got everything we need? like medication? enough clothes, enough money! the right toys, have we got things incase mr throws up in the car, and after he's done that a few times we now have a bowl, towel bag and change of clothes to hand! purse, wallet, phone, chargers! things for the kids to do on the long trip. I know its prob the stresses most people have to be fair just add in a few extra meds and complications for good measure!
The car trip itself can be daunting, why? well its a bloody long trip, 5 hours in the car with a stop and without traffic is considered a good run! Though this time it was a good trip both ways! minimum congestion and which considering we travelled the Thursday before Easter was really good and two stops was a 6 hour drive, stress free! Our way back started in Yorkshire but was a similar time frame if not better, two stops was less then 6 hours! Never thought a 6 hour car journey would be good lol
However the kids are very used to these long trips now which makes going for slightly longer short trips more enjoyable, and our trip to France doable! it gives me and hubby chance to just chat about anything which sometimes isn't possible at the end of the day when we are tired.We get to have family sing alongs in the car to Bon Jovi and other songs, talk about the topics on the radio or just things in general and so it is worth it.
Our time away with family was lovely, its hard with shift patterns but we did get to spend some time with all, doing our own little things and letting the kids have time with family is so important though just as upsetting when the day is over. ( nearly 3 years on and its just as hard as the day we left! )
Would like that lottery win now, please ;)
We took ourselves off for two days after seeing family and went to say in Doncaster, ( well near) so we could take little man to the Train museum at York. who they loved it, They really got involved with everything and all the trains.
The day before we went to Eureka in Halifax, which was a bit daunting in itself, as Halifax is where my father lives, and I didn't want to run into him, for alot of reasons! but glad he wouldn't be anywhere near Eureka that day! ( and thank goodness it was Easter Sunday so it was quiet in town not like we went in!!)
We went to Eureka very last minute like 10 minutes before the turn off we decided to go, as we wanted to go to a National trust sight but it was raining and icky and we thought well hubby thought of it, it is a child museum one aimed for them in mind. It was fantastic! they loved it and got stuck into everything, again never seen them so happy in a museum playing! <3 Yes both days were long and sore but we got to do things they liked and wanted to do so we could cope with the pain at the end of the day.
I hate the stress of leaving home, the is the house going to be ok, ( ie will someone break in), have we got everything we need? like medication? enough clothes, enough money! the right toys, have we got things incase mr throws up in the car, and after he's done that a few times we now have a bowl, towel bag and change of clothes to hand! purse, wallet, phone, chargers! things for the kids to do on the long trip. I know its prob the stresses most people have to be fair just add in a few extra meds and complications for good measure!
The car trip itself can be daunting, why? well its a bloody long trip, 5 hours in the car with a stop and without traffic is considered a good run! Though this time it was a good trip both ways! minimum congestion and which considering we travelled the Thursday before Easter was really good and two stops was a 6 hour drive, stress free! Our way back started in Yorkshire but was a similar time frame if not better, two stops was less then 6 hours! Never thought a 6 hour car journey would be good lol
However the kids are very used to these long trips now which makes going for slightly longer short trips more enjoyable, and our trip to France doable! it gives me and hubby chance to just chat about anything which sometimes isn't possible at the end of the day when we are tired.We get to have family sing alongs in the car to Bon Jovi and other songs, talk about the topics on the radio or just things in general and so it is worth it.
Our time away with family was lovely, its hard with shift patterns but we did get to spend some time with all, doing our own little things and letting the kids have time with family is so important though just as upsetting when the day is over. ( nearly 3 years on and its just as hard as the day we left! )
Would like that lottery win now, please ;)
We took ourselves off for two days after seeing family and went to say in Doncaster, ( well near) so we could take little man to the Train museum at York. who they loved it, They really got involved with everything and all the trains.
Happy boy with the Mallard aka blue Spencer lol
Looking under a train!
It's the Rocket!!
Some shady looking characters ( and omg look how tall they are!)
The day before we went to Eureka in Halifax, which was a bit daunting in itself, as Halifax is where my father lives, and I didn't want to run into him, for alot of reasons! but glad he wouldn't be anywhere near Eureka that day! ( and thank goodness it was Easter Sunday so it was quiet in town not like we went in!!)
We went to Eureka very last minute like 10 minutes before the turn off we decided to go, as we wanted to go to a National trust sight but it was raining and icky and we thought well hubby thought of it, it is a child museum one aimed for them in mind. It was fantastic! they loved it and got stuck into everything, again never seen them so happy in a museum playing! <3 Yes both days were long and sore but we got to do things they liked and wanted to do so we could cope with the pain at the end of the day.
Bobby went for a check up at the Dentist!
Dentist Madam!
Mr having a checkup (and check out my's elbow!! )
It's been a great few days and we have some of the Easter holidays left to do some things at home, madam has a friend coming to stay which she is excited over. Whats in store coming up? well its not long before May half term! Madam has a brownie day camp coming up ( and a stay over camp in June!!) We have a gastro app coming up to discuss madam, and hopefully any day soon we will have a paediatrician app for mr coming through. I am taking bets it will be on the same day as madams like last time with the hearing app and the pead app then! There has been alot of aggravation with mr's app like taking 5 weeks to decide what to do with it to then tell us that he needed to see a gp but thank goodness two weeks before we actually did see a gp and he referred so will now be getting an app to discuss mr and all his quirks. ( Tremor, heat intolerance and hypermobilty!)
Busy times ahead! but i am hoping with a more positive attitude i can take it as it comes! ( she says till she stresses out ;) )
Just a little note as it has been said about doing a sort of book i have firstly made a facebook page for health trials and the blog to try and keep my own page a little more health free! Link underneath!
Saturday, 8 April 2017
Ah Easter holidays at last
Finally we are here! Two weeks off for easter and all I can say is thank goodness for that!! It has been a very long 7 weeks this half term with chicken pox with a urgent dr trip due to mr having an eye issue, severe constipation requiring several hospital visits adding on lots of meds for madam to take. we have had two referrals put in for mr due to well... everything and tbh I need a break.
The stress I feel has taken its toll these last few weeks my patience is short my mind is absent. I have been worried about losing friends and everything has felt like chaos. Chaos all the time. I feel on edge and wish I didn't. We have had sprained ankles sore knees and this last week a badly sprained little finger (don't laugh it seems quite sore and swollen) mr has been very hot every night to the point he has been incoherent and gibberish but he remembers so not night terrors. So stripped down and no pjs which he is not too impressed over but needs must as i've had window open and everything!
Worst thing... is the waiting. Waiting to get seen by the professionals i know his referral that was done via school is at the community paediatrics and has been there for about 4 weeks now and it has been waiting along with apparently several others to decided whats going to be done with it. As he can be seen at the community or it can be sent to the hospital, which for all the combined issues could be the case. So should we take bets on how long it will be to get seen? All the while my anxiety is threatening to take over. I am really trying to not let it, but it is hard when dealing with these things every day. We did go to the gp but he just wanted to add some umph to the referral that is already in! We have been dealing with end of termitis for a little while now so it is great we have now finished.
We have a busy two weeks in store though ! ( well ish ) We are going to see family this week <3!! can't wait it has been too long for most of the family but alas thats what we get for living here!
We also have optician apps for both the kids whilst we are up there! ( madam as optician was explicit that he wanted to see her next time we were up! and mr as he has a midline tracking problem and just seeing if they can actually check/ do anything or unless it is defiantly specialist and have to wait for the paed referral )
After we have been to see family we are going to go and stay near Doncaster, as we want to take little man to York train museum! and a good excuse to just explore where we don't normally get to go! So looking forward to a few days away to see family and have quality time with the kids and hubby as sometimes all we seem to do is go to school, work etc go shopping for food at weekend and repeat!
Hoping to have some nice days at the park, not over doing it of course as want to make sure the kids actually have some chilled out time! next break from school isn't a million miles away though and then.. dun dun dun!!! the one after that is summer hols and we go away!! <3 ( well fingers crossed we do eeeeek! )
Whatever you do have a lovely holiday/ time off. Stay safe!
Tuesday, 14 March 2017
Always Carry Two
As you must know by now reading this that my eldest has allergies, being atopic does give that away doesn't it? She is classed as at risk from Anapylaxis not because she has had serious allergic reactions in the past but because she also has asthma on top of her food allergies.
Allergies are a tricky business, you cannot predict what sort of reaction someone might have from one day to the next, it really is a minefield. As well as trying to avoid normal food, places to eat, you have to dodge around the ever growing field of may contains and, produced in a factory, or we cannot guarantee the ingredients that come in though nothing we make contains nuts.
Now we have been dealing with her nut allergy for 3 years, her first reaction ( that we know for sure) was 3 years ago this week! She is allergic to tree nuts, specifically, walnuts, pecans and cashews. Not a great deal but we are told to avoid all including peanuts. As well as that she is currently intolerant to wheat and maize and has environmental allergies to weeds, trees, cats, dogs and all types of mould!
Its not horrific once you get used to it all, yes it is very daunting, and it is difficult some days, especially when we need to play around with food and do a food shop is incredibly stress full, Eating out is a nightmare! good job we don't normally do it!
What is frustrating and the reason I am writing the blog today, the carry two campaign. Madam carries two epi pens, she has this medicine for the very real possibility that she could have a severe allergic reaction and these pens are there to try and save her, and to make sure we are able to get to a hospital. Recently there have been medical professionals saying that people only need to carry one pen... one life saving, potentially, medicine.
What they fail to see however is the other factors that could be involved, epi pens do not magically cure what is going on, nor do they know the situation you are in currently. Ambulances need to get to you quickly.. (aslong as they think you are in urgent need of one!!) and can take anywhere from a few minutes and up to get to you. If they can. epi pens are there to keep you going but what if the first pen doesn't work? misfires? or simply just isn't enough for a very severe reaction. I am not just speculating, there have been very real cases of this happening, where ambulances haven't been sent as urgent, where a pen has been fired into a finger instead of a leg! etc.
As allergy parents/ advocates we are always fighting, sometimes you have to fight for people to simple listen, to see that xyz is causing reactions, that there is a real need to go for allergy tests, to get checked on now and then. you feel sometimes it is you against the world, you are your child's and your own biggest advocate. After all you know exactly what the normal is every day.
I will always support the carry two campaign. Why? because it is my babies life we are talking about! why at 9 with all the crap she deals with should she have to worry or think of the what if's of her medicine not working, if she can get to safety in time, she should have a normal as possible life as her friends. Her life is just as important. Isn't it?
Allergies are a tricky business, you cannot predict what sort of reaction someone might have from one day to the next, it really is a minefield. As well as trying to avoid normal food, places to eat, you have to dodge around the ever growing field of may contains and, produced in a factory, or we cannot guarantee the ingredients that come in though nothing we make contains nuts.
Now we have been dealing with her nut allergy for 3 years, her first reaction ( that we know for sure) was 3 years ago this week! She is allergic to tree nuts, specifically, walnuts, pecans and cashews. Not a great deal but we are told to avoid all including peanuts. As well as that she is currently intolerant to wheat and maize and has environmental allergies to weeds, trees, cats, dogs and all types of mould!
Its not horrific once you get used to it all, yes it is very daunting, and it is difficult some days, especially when we need to play around with food and do a food shop is incredibly stress full, Eating out is a nightmare! good job we don't normally do it!
What is frustrating and the reason I am writing the blog today, the carry two campaign. Madam carries two epi pens, she has this medicine for the very real possibility that she could have a severe allergic reaction and these pens are there to try and save her, and to make sure we are able to get to a hospital. Recently there have been medical professionals saying that people only need to carry one pen... one life saving, potentially, medicine.
What they fail to see however is the other factors that could be involved, epi pens do not magically cure what is going on, nor do they know the situation you are in currently. Ambulances need to get to you quickly.. (aslong as they think you are in urgent need of one!!) and can take anywhere from a few minutes and up to get to you. If they can. epi pens are there to keep you going but what if the first pen doesn't work? misfires? or simply just isn't enough for a very severe reaction. I am not just speculating, there have been very real cases of this happening, where ambulances haven't been sent as urgent, where a pen has been fired into a finger instead of a leg! etc.
As allergy parents/ advocates we are always fighting, sometimes you have to fight for people to simple listen, to see that xyz is causing reactions, that there is a real need to go for allergy tests, to get checked on now and then. you feel sometimes it is you against the world, you are your child's and your own biggest advocate. After all you know exactly what the normal is every day.
I will always support the carry two campaign. Why? because it is my babies life we are talking about! why at 9 with all the crap she deals with should she have to worry or think of the what if's of her medicine not working, if she can get to safety in time, she should have a normal as possible life as her friends. Her life is just as important. Isn't it?
Thursday, 9 March 2017
Where is that magic wand?
Over the last week I have started to write this blog post 3 times, all under different names, why have I not finished one yet? (until hopefully this one lol) I just don't know how to get the words out of my head without sounding too strange. Alright we know I am strange strange is good right?
the last few weeks have been manic, to the point I feel like crawling into a hole and possibly staying there till things blow over. I wish that was completely possible but alas with two children hubby and house to run it makes it impossible!
It has been hell. One thing after another and I know they say these things come in 3's ( and i do believe that for the most part 3's or 7's ) but seriously... it needs to go away NOW!! there is coming to a breaking point with me, I am not sure i can handle much more and I am being brutally honest there. I am feeling very strained in alot of levels and finding it hard to communicate some of these reasons. I just feel so out of sorts!
Madam beautiful determined madam, has had one thing thrown at her after another and I really wish I had that magic wand so I could take stuff away even just for a few days. It breaks my heart to see how she is struggling. From those that know us and know the blog, will know she has been suffering from IBS issues for over a year, treatment has been on and off and I largely put down her issues to her diet so hence we took out wheat completely and now maize out completely. However the damage had already been done from little man's birthday where i made a gluten free cake etc but it was not maize free and caused reflux issues cramps etc. During half term she had gluten free fish fingers.. and i can pin point then when she was hurting and cramping.. since then she has been severely constipated. ( yes yes we British don't usually talk about something like this but sod that! people need to talk more!! )
We had an appointment booked with a GP so we could discuss getting madam a referral to a gastro specialist and or dietician. I can say now we have one.. but they way we went about it.. wasn't the route I was expecting! when we had the gp app booked it had been 11 days ( we think as not fully sure I don't follow the 9 yr old to the toilet any more) since she had, had a movement. Yes eww if you don't want to read close the blog page. GP immediately phoned the hospital as she had already been on meds to help ( things we had at home! ) and nothing was helping. We had one complication though, little man was getting over chicken pox!!! which is a tale in itself since he had them everywhere! (literally) but alas.. we had to drag him to the hospital too.. thankfully he was mostly scabby.. but it added on extra precautions and measures at the hospital. ( side room, no tv.. bored children anyone!!)
We were told then madam should really have been on long term meds since last year, something I am not impressed with! all those incidents could have been avoided and possibly this bad one. Over the next week it was very hard going, having to go back when she started throwing up. The things we have to do as parents, like trying to decipher what on earth she was throwing up. (turned out it was her lunch from 8 ours previous) Ended up seeing the gastro specialist who put her on a range of meds and one strong one.. something coloscopy patients get... even then it took a long time to work!
I wish I could say things were getting better but atm they seem to be slowing down again. Yes we are now under a gastro and will be under his clinic in a few weeks but I have no one to ask for help unless you include the gp? haha. To top it off shes hurt her knee at PE in school, usually happens when she has over done something though she is active sometimes things are too much and last night due to hobbling home, her ankle couldn't cope and she has now sprained that!! Honestly, I am not sure if I could make it up or not. Her teacher was in disbelief that she has done something else on top of the rest of the crap shes dealing with! Hell I am sure she didn't plan any of this I promise..
I don't like saying sometimes I have children with special needs as some wont see it as that, though the joy of invisible illnesses is that you don't see the issues madam does have, the pain the struggle she faces. Why? most of the time she gets on with it. at 9 years old she copes better then a hell of alot of adults. She takes it in her stride and she is bloody intelligent to boot. (no not just proud mum saying it) It is shocking how much she is still achieving. I am so so proud of my baby, my heart breaks as she is struggling with pain and discomfort and things she shouldn't have to deal with. I am not sure how many people realise the strain it has on the parents, when the meds are not working, when you are sat just wanting a minute hearing your child crying with nothing, nothing you can do. it is soul destroying.
I like to say I am strong, determined, we get on with it here. We plod on. but weeks like these just really show you who you are. What kind of parent you are and how you face the world. I want to liken myself to some Warrior Britain of old I am certain this is now how I come across unless in a mood heh.
I knew this year was going to be interesting, I was hoping in better ways, not just more issues for the children. If i knew what was up with little man as well i would talk about that too. (referal to a pead done via the school who had a occupational therapist in!) and if you start looking up what they said it brings up scary things so as my friend says i really need to stay away from Dr Google! ( I am trying honest!!)
Roll on July... could really do with this family holiday now!! (Or that wand ;) )
the last few weeks have been manic, to the point I feel like crawling into a hole and possibly staying there till things blow over. I wish that was completely possible but alas with two children hubby and house to run it makes it impossible!
It has been hell. One thing after another and I know they say these things come in 3's ( and i do believe that for the most part 3's or 7's ) but seriously... it needs to go away NOW!! there is coming to a breaking point with me, I am not sure i can handle much more and I am being brutally honest there. I am feeling very strained in alot of levels and finding it hard to communicate some of these reasons. I just feel so out of sorts!
Madam beautiful determined madam, has had one thing thrown at her after another and I really wish I had that magic wand so I could take stuff away even just for a few days. It breaks my heart to see how she is struggling. From those that know us and know the blog, will know she has been suffering from IBS issues for over a year, treatment has been on and off and I largely put down her issues to her diet so hence we took out wheat completely and now maize out completely. However the damage had already been done from little man's birthday where i made a gluten free cake etc but it was not maize free and caused reflux issues cramps etc. During half term she had gluten free fish fingers.. and i can pin point then when she was hurting and cramping.. since then she has been severely constipated. ( yes yes we British don't usually talk about something like this but sod that! people need to talk more!! )
We had an appointment booked with a GP so we could discuss getting madam a referral to a gastro specialist and or dietician. I can say now we have one.. but they way we went about it.. wasn't the route I was expecting! when we had the gp app booked it had been 11 days ( we think as not fully sure I don't follow the 9 yr old to the toilet any more) since she had, had a movement. Yes eww if you don't want to read close the blog page. GP immediately phoned the hospital as she had already been on meds to help ( things we had at home! ) and nothing was helping. We had one complication though, little man was getting over chicken pox!!! which is a tale in itself since he had them everywhere! (literally) but alas.. we had to drag him to the hospital too.. thankfully he was mostly scabby.. but it added on extra precautions and measures at the hospital. ( side room, no tv.. bored children anyone!!)
We were told then madam should really have been on long term meds since last year, something I am not impressed with! all those incidents could have been avoided and possibly this bad one. Over the next week it was very hard going, having to go back when she started throwing up. The things we have to do as parents, like trying to decipher what on earth she was throwing up. (turned out it was her lunch from 8 ours previous) Ended up seeing the gastro specialist who put her on a range of meds and one strong one.. something coloscopy patients get... even then it took a long time to work!
I wish I could say things were getting better but atm they seem to be slowing down again. Yes we are now under a gastro and will be under his clinic in a few weeks but I have no one to ask for help unless you include the gp? haha. To top it off shes hurt her knee at PE in school, usually happens when she has over done something though she is active sometimes things are too much and last night due to hobbling home, her ankle couldn't cope and she has now sprained that!! Honestly, I am not sure if I could make it up or not. Her teacher was in disbelief that she has done something else on top of the rest of the crap shes dealing with! Hell I am sure she didn't plan any of this I promise..
I don't like saying sometimes I have children with special needs as some wont see it as that, though the joy of invisible illnesses is that you don't see the issues madam does have, the pain the struggle she faces. Why? most of the time she gets on with it. at 9 years old she copes better then a hell of alot of adults. She takes it in her stride and she is bloody intelligent to boot. (no not just proud mum saying it) It is shocking how much she is still achieving. I am so so proud of my baby, my heart breaks as she is struggling with pain and discomfort and things she shouldn't have to deal with. I am not sure how many people realise the strain it has on the parents, when the meds are not working, when you are sat just wanting a minute hearing your child crying with nothing, nothing you can do. it is soul destroying.
I like to say I am strong, determined, we get on with it here. We plod on. but weeks like these just really show you who you are. What kind of parent you are and how you face the world. I want to liken myself to some Warrior Britain of old I am certain this is now how I come across unless in a mood heh.
I knew this year was going to be interesting, I was hoping in better ways, not just more issues for the children. If i knew what was up with little man as well i would talk about that too. (referal to a pead done via the school who had a occupational therapist in!) and if you start looking up what they said it brings up scary things so as my friend says i really need to stay away from Dr Google! ( I am trying honest!!)
Roll on July... could really do with this family holiday now!! (Or that wand ;) )
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