J'amour la France.

Well we have been back from our holiday now,  since Tuesday though only got back here on Wednesday lunch time as we made the decision before we went to book a hotel somewhere along the way back as originally our crossing was going to be later then when we actually crossed!

It was a wonderful experience having never personally been to France before ( ever) hubby had but i hadn't and the children certainly hadn't! It was so strange being on long open roads with nothing around literally put farm land! farm land and ,,,, more farm land with the odd little town/ village dusted in between!  it was surreal. It was only near the major towns that it was more built up and traffic slightly heavier haha when i say that it wasn't any more busy then a back street here, the motorways were  about as busy as our main roads... even then i don't think they were that busy! I would say however.... plan your journey! on the A roads there are different types of services, not all with the things you expect at a services like here. some are literally picnic areas but all seem to have toilets even if they don't seem to sign for them. Take your own toilet roll... and soap as these are not provided esp in the quieter areas!  I did learn however what to look out for on the maps which denoted what the services were, bolder the better!

We had 10 days in France, crossing over via Dover to Dunkirk! ... early on Sunday morning, wasn't a great idea!  we got into the centre of Dunkirk and of course everything was shut... whoops.  However when walking about, we noted buses full of people! .. ok.. so back in the car we followed and found the beach and all the people lol it seemed we landed on a sort of busy weekend were everywhere seemed to be doing a special with mussles .... which made it interesting to find somewhere to eat as we don't do mussles. We did eventually find somewhere and our first experience of eating out begun.  Dunkirk was nice enough but sure we could appreciate it more when things were open!  It made it more difficult when we realised all the supermarkets shut at midday.. which we missed. another whoops!

We found our first place and it was only 10 minutes away from the ferry terminal ( roughly) in a very quiet little place next to a canal  which had huge ( and i mean huge) boats crossing along it. but that was all that was making any noise! .. the odd car, farm equipment etc.  The children loved it and we did too! only two days there however until we moved to our main part of the holiday. in the Loire Valley! Vendome. It took 6 hours to get there ( including stops) which wasn't terrible but it is where we had most of our road experience.  (good and bad)  We managed to find a little quaint town when picking where to stay and I am not sure we could have been luckier!  it was beautiful!

This was a picture of the abbey which was in town. .. i could post pictures all day! But don't worry I won't.  This holiday was truely one of the first holiday's where we just chilled, we had planned to maybe go to Paris, and Angers however when we tried to book tickets it was ridiculously expensive for train tickets for places not far away :(  oh well it just means we have to plan more trips and plan better in the future! 

One of the big things for the children was my mum and step dad coming to visit whilst we were away! I will never forget how my daughter reacted. We were playing eye spy, as we knew hubby and i, that the grandparents were close, and suddenly hubby says i spy with the letter G... my parents car pulled up and madam shouted "Grandma, Grandad! " and was off like a shot!  never seen her move so fast and I am still not sure if the realisation hit how far they had come to join us on holiday. ( after all we don't see them often any more) 

It was lovely having my mum and step dad away, it meant the children and us had quality time with them and were able to explore together. We kept it simple, walks to down, buying fresh bread ( and cakes.. and cakes.. oh and more cakes lol) I got to have a real French coffee outside a pretty little cafe. one of the must do things I HAD to do.   We survived ordering food in French and really tried our best to order and ask for all we could in French, only problem was when they spoke really fast or their own English was non existent.. oh eck! 

How did we do health wise? well madams joints were alright. ( unless you count when she fell off a wall on the last night.. yes she is ok but gave us a scare!!) we did take it easy though for both their sakes so gentle walks, we didn't go up to the castle.. due to the million of steps.   i wish however her eczema could have given us a break. they say hot weather is good.. hahah. her eyes swelled up and i am not sure if it was due to her weed allergy, or another allergy ( mold spore... or something i am sure she reacts too) or sun cream etc. She had horrible heat rash and we just struggled esp towards the end of our stay as it got into the 30's and us blue skinned Brits were not coping! Esp as the floor was burning hot. 

However we coped and i felt we coped better then we had done for the last few holidays but perhaps it was because we did so little. We normally like exploring so much but.. we were just totally different this time! 

It is a shame something we planned for so long is over and now.. we have two weeks left before school. (school..!! ) my sister is coming for the air show today.. though.. it is currently tipping down outside..  it will be nice to see them though!  and as for the rest of the holidays, well.. just slowly preparing for school and meeting with friends. 

September is going to be busy, school wise and we also have an allergy appointment booked for madam and also need to get her back in for a blood test for coeliac disease again due to her issues with her tummy. ( immediate bloating when eating wheat 9/10)  its never simple but we manage.  

Summer holidays 2016!!

Wow summer holidays are here! zooming through the year, though with all the things going on this year, from celebrity deaths to the .. horrible atrocious terrorism that is occurring around the world! (currently one a week it seems atm or more then one and I don't just mean In Europe! ) Some would be rather glad to see the back of it!

I'm in two minds, sometimes I want to see the back of it, and then at the same time i don't want to miss anything. I know things have been difficult. We are yes still coming to terms with things and it isn't always easy just to even talk about it.  I have been told that really the blog isn't always a good idea, because it seems i'm trying to get validation for madams issues. And I can see what has been said, I feel I have to justify what she is going through to prove she really does have issues. I do this, ( i think ) because it is an invisible condition and for years i've had to  watch and wait and try and find evidence that she was struggling that there really was something. Yes we had a diagnosis but we've still had issues with professionals dismissing it or putting down her pain.

So i'm trying to be good! trying not to bring it up often or as often, hard, because our day to day living has to cope, for example yesterday we were out and her ankles kept going over every few steps, she didn't always fall down, but stumbled and it was hurting her. What can we do?!   Feel i need to look for new trainers esq but.. there are non to my liking that are actually supportive enough or high enough to support her ankle. :( Going to be interesting! neither do i have immediate funds either to get some even if i did find anything as..... we go on holiday a week today!!! ( well a week today fingers crossed we will be waiting for our Ferry!!) so all funds are trying desperately to be saved  for that ( of course)

Makes it interesting for things to do however with the children whilst we wait for our holiday to get here!  times on the park and time inside watching dvds/ playing games have been the order of the days. Also Madam.. learned how to ride her bike!!!

 Now this might seem really late to some as she is 9 in October, but with her balance issues  etc I never thought we would get her on a bike! having tried so hard in the past. This is a huge achievement! She still needs to get steering down and how to set off a bit more on her own ( she can do it sometimes and sometimes she can't) Also needs to get used to the weight of the bike.. it is a rather sturdy one but really good. We will be doing more practice today! I think she is also looking forward to her cousins coming and potentially bringing there's so they can ride with her! They are coming a couple days after we come back from our holiday for the Air Show! So can't wait!

A few exciting weeks ahead! trying to keep a positive outlook as much as possible before we start the new school year, madam into year 4 ( omg where has the time gone?!!) and little man is going into Reception where he will have his own journey and learning how to cope with his Hypermobility but that is another tale!

Will update upon our return from France!

Two years on from Manchester

It is two years on since madam was finally diagnosed with benign joint hypermobility syndrome/ focal hypermobility syndrome.  Also two years since she was diagnosed with her tree nut allergy and pollen/ weed allergies.  We had a very busy year that year. 2014, alot happened and it was also the year we moved here but we are not quite two years yet!

It sounds dramatic sometimes, the how much madam, has gone through n two years, really it's more but  we have seemingly gone down hill in two years. We might have a diagnosis but does it actually get any help? no. It gets a lot of stigma attatched, one day or even one morning she can be fine, happy running around, the next she can be physically struggling to walk.  I've seen it, I experience it daily. We have found the limits and some days are worse then others. It makes it hard when we want to get out and about, we arn't ones to sit at home at the weekend!  We like to go out, yes normally just into Town, and more than likely to get a Mc d's for the children. ( as it is nut safe for madam, just shame we have to.. deal with the wheat side of things. Not allergy but ibs issues if eating too much. )  When madam is in pain it gets difficult to have to drop everything, especially if i've been stuck at home all week, hubby at work we want to get out.  That makes it difficult to adapt.   

Not only do we have the jhms, allergies, eczema, hay fever to deal with, we are monitoring headaches which last days, (looking like exercise induced ) ibs, and going to go to the drs this week to discuss the findings so to speak.  We had hearing tests this year to try and tackle the hearing/headache issue, her eyes tested. She has sprained and hurt things and she is physically exhausted coming home from school. Other parents tell me their children are still bundles of energy after school, mine arn't! far from it.    I am not sure I can get across how difficult it has been, me complaining just looks like complaining. I know normal is over rated but everything we do has to be thought over, discussed, planned. It is so .. exhausting, let alone exhausting, frustraiting for the 8 yr old dealing with it all.  

Small things are huge atm and no one seems to understand how big these things are.  my daughters class rooms have changed this year, and she has been separated from her close friends, who have managed to stay together, ( mostly)  This lead madam to be devastated, heart broken, we had real real tears, something we have not had for years, ( yes we've had upset and sadness but not full on tears! even when hurting)  no one seems to care!  oh she'll cope, oh she'll manage and make new friends. Thats not the point for a child that feels isolated at the best of times.  She has a new set of people to have to explain her joints, her allergies, her water on the desk, her bloated tum.  How would you feel if this was your child, your child who already deals with a bucket load of crap? Devastated and heart broken for her. I get emotional at the best of times when i see other people crying, I can't help it,  I am empathic that way. The negative emotions are so easy to rub off.  Emotions are top of ther surface at the moment and this.. is hard to try and navigate. I've been told she is in the new class to try and challenge her abilities, she is a clever cookie after all. ( no not just smug parent, she really is) and she is being put with children that might be able to challenge her. How.. how can i argue with that?  I just wish she had atleast one close friend going with her. 

These two years haven't been easy, far from it, especially when things are gradually worse, we have no physio now, having been told we just have to get on, plod on and come back when madam is going through the next big growth spurt, only person we have is an allergist! .. who were trying to not see us till some time next year! ( put a stop on that however and being seen this September). I know we will get through whatever is being thrown at us, we normally do. It is just very hard when  your child is struggling.  ( yesterday alone her body/ brain didn't want to function together, she missed her chair at school, fell off the couch for no reason whilst trying to get up and seemed to launch herself off a kitchen chair when just trying to get up!  very scary to see it was very odd!!) Put on top hay fever, exhaustion.. and then mummy getting stressed out O_O lunch ideas failing miserably, ( due to having to substitute wheat and she hates gluten free bread) 

French holiday... 32 days and counting down! ... oh fingers crossed it goes smoothly! (please) Lottery win would be nice to ;) 

3 year anniversary and reflections

Wow, I've had my blog for three years!   when i first started out it was every day I was writing something, which I realise now was a silly thing to do as it became repetative and dangerously boring and tedious.

Time as always has flown as it always does.  I was just thinking  there wasn't terribly much in change since the last entry but yet everything has changed! The UK voted out of the EU last week and I think less said about that the better, why? because ... I'm not sure how to take it. There is so much uncertainty, someone said are you afraid of change, a little but when waking up with the news that the pound had already dropped in strength and the markets were dropping. Are we not allowed to be afraid and upset?  Half of our country decided to leave, sorry only slightly more then half. So yes the people decided but not by a huge margin.    I am just very glad that we got quite a lot of our euros exchanged before the result as its dropped by quite a bit since! ( sometimes it works being a pessimist! )

We are getting excited now for our holiday to France, for a much needed break,  though I am anxious how madam will cope, as the last few holidays we have had difficulties all generally because of madams pain issues.  We have come to the end of the road, where we can get help for now, we have new insoles, which.. don't seem to have changed anything.  Which is a bugger as I was hoping the new insoles would have started to help ease her knee and ankle issues.

I feel like I get up in the morning and it is the same thing time and again.  Madam pain, pain sluggish to go,  get ready for school take them come back, do whatever go get them, have madam complaining, hurting, do tea, put kids to bed,  do whatever for an hour or two which normally means dealing with madam in the middle of it all again and then bed. .. I don't have a work life balance but mummy, hubby. children balance.  Not easy to do. This is where some trouble lies, as i was discussing with who can only be said like a school counsellor, that I feel I've lost me along the way, the line between parent and carer is very blurred but sometimes i wonder if I ever knew the real me anyway.  If I let myself come out,  discussing friendships and I don't feel that I truly knew what a good friend was.  Looking back for high school, primary..  I could say I had.. friends but  I was the quiet silent one, If I ever let the "real" me come out the geek I felt shunned, stupid so it was better to be quiet.  My online friends know the real me more because I can open up more, and found people who sorta understand more.

Always the grown up and now being grown up with children,  I do have friends that understand more,  maybe not always what we are going through but more those that can be there.  Being down here I think has helped, I am a bit more of me. The geek and nerd and the one who talks about stuff I suppose it was a new leaf aspect.  I don't mean to upset those that I have been friends with but only so many times i'll offer to chat, or go for a coffee.  communication works both ways, always and i'm sick of chasing like a puppy.  I have a million things I could talk about, politics  (hahah) history,  environment, books, music... ( erm.. well not modern) writing! something, anything. I am more then just my children and their health issues and yes this does seem to take alot of my life but, having children with extra health needs does kind of take over! It's something we have to live with every day, every single day. Being told to get on with it, seeing a child, your own flesh and blood, which you might not understand if you don't have any, crying in pain, being so exhausted they can't do anything but slump on the couch after school, ( sometimes before) is hard, we can't always do the normal things, when we can we do!   Madams issue take up a huge part of our lives,  from her eczema to her joints and food allergies,  we have to be careful. I might seem ott. And maybe I am. But i need to be. If i don't have her best interests at heart then who does?
Little man may not be quite in the same league but I am having to deal with a very tired 4 yr old after school and then a grumpy 8 year old on top. Is mentally and physically draining!

The complaining on the blog hasn't changed in three years, and the fun activities that it started with .. have change,d all depending on who is dealing with what at the time. Madam has been having football session out of school and athletics but last week or two have been too much. Which i understand for her. She isn't lazy though if she could she would be able to do something anything.  Its hard to read this i know,  its not in  normal conversation but it is hard being a parent sometimes. incredibly. I want to scream and shout, I also want a cuddle and a good cry but we'll leave that for another time?

Schools break up in 3 weeks.. ( well 3 tomorrow) and not long after holiday, for much needed family down time.

Moving on

Well over the last week some growing up is needed. Fully aware that I am now 30 and that growing up should have happened already and others could probably argue I was old for my age anyway.

Last week I went to see the hospital counsellor regarding madam. And came to the realisation as much as things are hard to cope with we are coping alot more then when we first went to see her.  I am not sure if this is due to the parenting course I had to go on or just myself I general.

We had a good chat which is shocking as I am not her biggest fan to be quite honest as before now I was made to feel it was all on me or that it was made behaviour. Yes sh can be difficult but I can see why and I was completely honest with her that I do have some learning issues myself. I need specific info. As I felt so confused conflicted by what everyone is saying and like magic people understood.

We saw the physio yesterday who didn't dismiss madams pain.... She had done before and we managed to have a really good chat. We agreed madam is madam she will get pain she can't over do it we have to let her rest too. Yes sports good we need to keep her strong because if she stops she will deteriorate quickly. Okay I understand that they were not saying it was a cure though that was the impression I was getting especially from the gp too.  Madams hips are severely hypermobile esp her right hip which has a knock on affect. Her calf muscles are extemely tight because everything is trying to compensate for her loose knees hips etc just to keep her upright.  It's any wonder why she has pain and tired Her body is full out just to keep her mobile. 

The hard thing is knowing this is it where we are there is nothing more we can do. Use ice and heat tubi grips and medicine. Just to keep her going. When she has her next big growth spurt /puberty she is going to be hit hard and probably going to cause issues and with her already tall she won't be longer before she starts (physio said this) I dread it my baby is 8...

Being an adult is hard sometimes. ..but if I am not strong who will be? How can I tell her it will be all ok if I'm upset.   

Mixed parental feelings

Sometimes, I know, we are discussing the same things over and over again. The same issues and troubles. It seems to be the same thing all the time the same trouble, the same problem. I wish I had some magic way to fix things. Fix the way of life that we have at the moment.

I feel like a traitor as a mother, let me explain.  Ever since we moved the professionals here are very dismissive of madams issues, they just say she has lax joints and that sports will help she will get better.  Nothing more. No exercises to do, no specifics, we've asked for pain management help, someone for madam to talk to and what did we get? sent to a counselor, and then to a parenting course, why? because apparently madams issues are just anxiety and the pain she is in shouldn't be there. 

Fine I said  I will go on the parenting course, madam has been doing pe and two after school clubs, one football and one tennis/ football (two full terms of one then the other!)  There has been 0 improvement, yes a couple calmer spots but that's it! the parenting course is more attuned to those who have behavioral issues and for the parents that might go bang over the smallest things, yes there were some small things I could take away and use but nothing concrete.  

Yes my kids get a bit hyper and excited but they don't have behavioral issues.  This isn't helping and its taking up my time, i've made no friends on this course and I am going to meet the course leader next week to talk about something else which may help but apparently thats not much better then what I have already done, her words not mine. 

The last time we saw the physio we were told she would be happy to discharge.. after madam had her hips x-rayed to rule out hip dysplasia ( and i had to chase up this app.. as nothing had been said or done till i went and spoke to the dr! fgs. )  So all done.. and apparently her pelvis is normal.  Not sure if they are including her hips etc into this diagnosis as no one has discussed it with me. I just rang and got, her pelvis is fine. Ok. ... 

So I am waiting now for the physio to ring me and tell me we are discharged.  I have worked myself up so much into thinking madam may have had hip dysplasia.  That it could explain why her leg turns in, why her knee seems to suffer with bursitis so much. But, I've got myself so worked up for an answer a hope for some help and support that, when i got told it was normal I was devastated. 

Now I know that seems incredibly odd that I wanted something to be wrong with her  but I don't, I wanted something finally to go aha! that is what is wrong, this is how we can fix it.  Now i feel back to square one. No one is listening or cares. No child IMO would keep up a charade so long and not want to go and do things like the park, or fun things  if they were faking it. you cannot fake a knee turning in or it swelling. So why is no one listening? it has been thought that it could be all money based, they don't want to pay for referrals, or things to be done. It's easier to fob us off. All the while who is dealing with the fall out..... ME I'm dealing with the tears and the stress.   

I don't know what the next step is, yes we should keep fighting but I'm getting so so tired of fighting and arguing and wanting people to listen, to see.  What do i want out of all of this? Support, advice and knowledge of what to do. I don't think the following positions are normal. 

 

See how her knees turn in? the right knee/ leg always sits like this, always when she is sat down.  I would really love to hear from other parents, if their children who don't show signs of being Hypermobile, can do this?  Without pain. 

 (note this was taken after a very hard mri scan she was well and truely fed up and tired) 

Trying to show how her right knee falls in! two different mornings ( please ignore the mess!) 

Hypermobility syndome Awareness week 2016

Well as it is HMS awareness week this week ( well near the end of it now!) I couldn't just leave it without doing some sort of blog, considering it is , such a big part of our lives here.

I am not sure where to start, I've tried to think and tried to start this blog so many times, sometimes just been too tired  to start to write, or not knowing the right thing to say.  On my own face book I know I go on alot, however it is a huge deal to us. We fought for years trying to get some sort of diagnosis for madam then we got one, and it didn't change our lives it just.. made us more aware.  It brought some questions but it also brought answers.

What does it mean to us here? well on a daily basis it depends? we can have days which are fine, normal family time, nothing out of the ordinary. I wish I could say we had more normal days then not.

I think I personally have Hypermobility ( not saying the syndrome) I can remember having to get clumpy shoes ( no offence mum!) to help with my ankles as i would always be going over on them, my knees where horrid not solely because of weight but because a dr once said my muscles hadn't formed properly. Not that anything was ever done because of it!  When pregnant especially with mr i had horrible pelvic girdle pain/spd, my hips you could feel coming out of their sockets and I ended up on crutches, ( and really could have done with staying on them after for a while) even now 4 years on from giving birth i can still get issues when I have done to much.  I rate myself about a 7 on the Beighton score. Fingers, thumbs, hyperextended knees, I can practically touch the floor too just not palms. I have always had issues writing and clearly remember when i had been painting I had sprained my wrist, remember due to the fact i was called a liar by so called friends and that we have recently been painting the kitchen and I've had the same issue but stopped before I got too sore.  Also i stand on the outside of my feet just like the children do, have rediculously sensitive feet and pretty sure i loose my arches however that could be because i'm fat!

On to the kiddies!

Madam, my poor baby doesn't half suffer, as people say, she doesn't get a break and in all honesty it doesn't seem like she does. If its not her eczema or allergies its her joints. A couple weeks ago after going out for little man's birthday at a soft play she developed bursitis, ( google is my friend and nothing else explains it) which is common soft tissue damage for people like her. That didn't ease for over a week and a half. Think more forgotten when her cousins were staying with us! Couple days go she moved position on the couch and managed to sprain her wrist, to the point her fingers have swelled a little. ... her wrists arn't even classed as Hyper mobile. Yet... these things are down to her anxieties. Hrrrm.. can't fake the fluid on her knee.. or swollen fingers! Aswell as being recently diagnosed with IBS. HMS causes alot of problems on her scale. my wish? ... just to get someone who listens and doesn't think it's all in our heads. I feel bad for running to the doctors every two minutes but also bad if i don't!

My little man, well thankfully it may just be Hypermobilty at the moment, he was confirmed as having "increased movement" in his joints particularly his hands and toes. He gets alot of fluid in his joints, he creaks and clicks.. and i hope that he doesn't get the pain that his big sister does! he already gets tired and doesn't seem to have the running like a lunatic, energy that most pre schoolers have! ( not overly sure i'm complaining there!!)


Because of this, and some other factors we have decided against any more children, It had been a thought and a real one recently but then i've had to be realistic. I couldn't cope with another child who could possibly have the same issues or worse.(considering the eczema was debilitating enough! allergies, hm, ibs, etc etc... noooo)  Then again it wouldn't be fair to have one more even if completely fine as the time spent helping the other two would be too great.  Of course there are other factors but it was one of the main deciding factors. I find it hard to cope as it is at the moment, especially when madam is having a really bad day or week.

Future? Not sure, not sure what it will bring, i want people to listen, to try and be understanding, i have to say no to madam and mr, sometimes soft play is out, huge plays on the park are a no. But only if they are in pain, or i may have to reduce time out because i know the fall out afterwards, extreme fatigue, grumpy, pain. Not worth it.

I would love to be able to wipe the slate clean and say its not going to happen its all going to get better but I can't say that as that would be a delusion. We just deal with what we have the best we can.  New strategies ,  Lots of bandages, medicine and love.

I want to be an advocate for all things atopic and HM.

Do not let your child or yourself W sit (bum on the floor with legs either side of hips)
Do not do If you are or your child are having pain in a joint no matter if at night or day keep a log and go to the dr! Don't be fobbed off with growing pains!!

Read up, join up! there are so many good Facebooks groups and the Hypermobility syndromes is a great webpage for info, membership and printoffs! http://hypermobility.org/help-advice/what-is-hms/

Do not just think your child is attention seeking, even if you are told they are ( .. guilty as charged here)  you are mum! ( or dad or guardian!) you know your child best.  Take back up with you if needed.

I will continue to pester and post and talk about it, Because here and FB are my venting places, where i feel i may get some support for my life  and perhaps, just perhaps I can help someone else out there.

Support is Key, its all I ever wanted and its all I ever needed.

( All pictures are of my children and are not taken from anywhere else,)