Catch up!

Ah here we are, coming to the last week of September!  these last few weeks have gone by fairly fast! with more and more  wanting and hoping for the weekend so that we can relax! haha relax, does that ever really happen?

Couple more days ( 3.. ) and it will be two years since we moved here! two!! Now we have been here even longer,  people start to ask if we regret it?  pretty sure the unanimous answer is still no. Don't get me wrong its hard, without family near by, very, especially when we just want a break. I'd really hoped by now that madams issues would be under control. But sadly that is not the case.  However we do have quite a few friends and we do try and visit when we can. The friends really do help make it seem less daunting and help when I get into my down days.

My down days seem to be happening more often but I am waiting to be seen by a counsellor, because I don't cope very well with all madams issues and its a strain.  I really do try and not get anxious but it is hard. Not sure people would really understand unless in my shoes.

The children have been back in school 4 weeks on Monday, in the last three weeks,  we have had to deal with 8 solid days of chronic headaches from madam, headaches where painkillers don't touch it! where noise makes it worse and where nothing is helping!  ( and i really do mean nothing) in between these  blocks of headaches ( as it was first week and then third) madams hip decided to be really bad,  so bad i was having to prop her on the way home one day! arm round waist etc.   I was close to going to out of hours with her but it did ease!  but it is scary when the 8 yr old can't weight bare at all or pain in every step.  It's like we can't just have a normal happy care free day, and yes that is dramatic! but that is the reality atm! if its not one thing its another and you can tell when she is in pain.  Last night  her face you could clearly see the discomfort there due to pain.  That for any parent is heart breaking!

We had allergy retesting done last week! (just do go along with everything else going on!) its been two years since she was tested for nuts, would have been done last year but she ended up having anti histamines. Nothing has changed!  well it has and hasn't.  She is still nut allergic, not a great big mark on spt's but still there with cashews added to pecans and walnuts however we did know cashews might be an issue as they have been a little high on blood tests before now, and she did scratch that spot last time she was tested but no hive. So for now 3 years till she is tested again! hopefully before she starts high school so we can have plans moving on when we get there!  She is still cat and dog allergic, weeds and now mould! which i did have a feeling over. From what i gather it is all moulds that came up. So .... have to be on top with things here, making sure condensation etc if off the windows and sort out clothes etc, make sure nothing is damp! no kicking through leaf litter ( that is a bug bare)  so we dont have face flare ups ( swelling and eczema) needs must! Trees were oddly enough.. negative! which i find really curious!  as i am certain she reacts in spring! so could be a false negative and we will have to see what she is like come spring!  They even said her weed mark wasn't that bad but i know from first hand viewing how bad she is hives, wheezing etc. So.. it goes to show that spt marks don't always indicate how serious a reaction might be!

Little man seems to be enjoying school, even more so that he is with his friend on a daily basis!  he doesn't seem as exhausted as i thought he would be but still like any child is tired coming home from school seems to be finding a second wind.. and being hyper right before bedtime! Though think it is affecting his sleep as its knocking sleep pattern out, even if at normal time he is waking up a couple hours after and then unhappy due to it being dark!  well that is what happens in Autumn. so need to invest in a night light i think.

Two weeks today will be madams 9th birthday!! That.. is shocking in itself! she is having a sleep over, and i hope that goes well. ... we might end up regretting this decision lol. my baby will be 9... not sure that has sunk in yet. i've not had a full night sleep in 9 years...

September, school excitement and anxiety

1st of September! .. wow.  Honestly does not feel like it was that long since it was last September, or the September of 4 years ago when my eldest started school full time. Now it is little man's turn!  I am not sure what fills me with more anxiety, big one or little one. I am sure any mother is the same, worried how their baby will be, if they like school are they making friends.

I am lucky we have been here before when eldest went, she trotted in without a backwards glance having only ever been to the school for taster sessions she was off! She was so ready for it all. Happy, bubbly, ready to learn.

Not sure how little man is going to be, he has been completely different to her, he in alot of ways isn't ready,  but it is hard to compare them, when she  at the time was nearly 5! mr has quite a few months yet before he turns 5.  He eventually liked nursery/ Pre-School. He made some friends ( and thankfully his main buddy is going to be in the same class.. thank goodness as his mum is one of my best friends.) However his alphabet knowledge is poor, though we are trying our hardest with Jolly phonics, his number skills I am not worried about. Main thing i do worry about with him, is his hands, and him generally.  As well all know now he is hypermobile. The teachers have said he will have to tell them when he is tired.. erm.. that is not going to go down well he isn't overly vocal and how will he know he is tired?  That is going to be interesting!  They have got things in place ready for him though, which is a little weight off my mind and I am sure they will be watching him checking, I get a feeling though he will leave it till he comes out to voice his.. *cough* opinion. Fully on meltdown tired mode. ( can't you tell I am looking forward to that! )

Madam is another kettle of fish. I am anxious over her, for so many reasons. I shouldn't be.. not with her going into year 4. It should be a wave a kiss and a see you later. I know I will be overly anxious. When she goes into school with high pain, it is hard not to worry as i know she doesn't voice her concerns. To add to everything her eczema isn't exactly calm and she is very itchy atm, something the school haven't had full experience of with her.  Her allergies are always a worry/ concern anyway! Then there is the fact she is going into a new class... previously their year was a 4 class year but due to movement of pupils and budget they are being shrunk to 3 classes ( to be fair we were lucky they only used to be 20 in their class at most!) now its more like 26 ish. now it wouldn't have been an issue if she took any friends from her old class but she didn't! apparently this wasn't a factor (.. hrrm tell that to the other children who seem to all have their friends)  they put her there due to ability.. okay okay. i know. she is bright i want her to be pushed. However with everything I want her to be happy not just academic. I suppose that is the pit falls of a larger school. ( big school but small school ethos..which is does have to be fair)

September brings with it.. an allergy appointment, and  good job really. We will be testing I am lead to believe her nut allergies but also i want to discuss the wheat issues and possible mold issues.

These were taken on holiday.  no she doesn't always look like this, but I have very little idea what caused it, poor baby it took a good few days to go down!  so i will be showing these, she did have similar last year in Autumn so interesting to note.  However what i do so in the top, aside from the swollen eye lids, eczema slightly puffy face.. and hair that is a pain in the bum to brush, i see beautiful blue eyes which are so.. stunning (she is mine I am allowed to be biased) and a strength, she is determined and a bossy boots! but i love her and her brother millions.

She is not looking forward to the allergy test! as its needles and things but needs must. I am sure I will cope with my anxiety like  I always do. Bottle it up till it all comes bursting out more likely! However ... I am on a waiting list for a counsellor  so atleast that is something.

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.