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 :(  ) 

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?

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! 

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.) 

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! 

 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.

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.

 

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! 

Race for life

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!

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.

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!