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!

I have an allergy... to stupid people!

Normally I wouldn't like to use the term allergy  to something more light hearted or joking like the title of this post but this last week people in the non allergy world if you could call it that, have been taking the biscuit to the extreme!!

Came across a group on facebook called "Allergies are bulls***" I'm not one that likes swearing, as I just wasn't brought up like that and it took friends in highschool to "teach" me to swear, I was quite naive I suppose so firstly ugh swearing, secondly this page claims that parents and people are just using the term allergies to garner some attention.  Firstly allergies are very serious, being it milk, egg, gluten, nuts etc etc. So someone thinking we are just after attention  really strikes at the heart of not just myself but a full group of people who have to handle allergies on a daily basis, which can range from checking the food whilst shopping, putting cream on, taking medicine. It can be a huge part of our lives. So... ouch :(

Also this week we had the findings in  research regarding peanuts, a great study which has shown that children who may develop a peanut allergy ( ie those with eczema and a egg allergy) are tested to see if firstly they react to a skin prick test to peanuts and then they slowly build up a tolerance and in 86% of the children they didn't develop a peanut allergy at this stage which is fantastic! ( here is the link about the study http://www.theguardian.com/society/2015/feb/23/feed-babies-peanuts-reverse-allergy-rise)
Since this was broadcast in the news some people perhaps thinking they had good intentions have messaged people i know telling them its ok now just give the little darlings some nuts.. erm. Sorry this isn't going to help those who already have a nut allergy. Someone was also told to give their poor child a snickers, they would only "puff" up a few times. seriously? do people not realise how serious allergies can get?

(Taken from the NHS website)

Symptoms of allergies 

The symptoms of an allergic reaction can vary, depending on which substance (allergen) you are allergic to.

If you are allergic to substances in the air – such as pollen, animal dander and dust mites – the symptoms usually include:

• rhinitis – sneezing and a blocked, itchy or runny nose
• conjunctivitis – itchy, red, streaming eyes
• asthma – wheezing, breathlessness and a cough

If you are allergic to a certain food or medication, symptoms can include:

• urticaria (hives) – a raised, itchy, red rash
• swelling – usually affecting the lips, tongue, eyes and face
• abdominal pain, vomiting and diarrhoea
• atopic eczema – the skin becomes dry, red and cracked

You can also be allergic to substances coming into direct contact with the skin, such as perfumes, soaps, hair dyes and metal jewellery. This causes a type of eczema known as contact dermatitis.

It is important to remember that these symptoms can also be caused by other conditions, so see your GP for advice if you're not sure what's causing your symptoms.

Sensitisation

The symptoms of an allergic reaction do not happen the first time you come into contact with an allergen, but at a later point of contact.

This is because the body’s immune system has to develop sensitivity to the allergen before you can become allergic to it. In other words, your immune system needs to recognise and memorise the allergen (for example, pet hair or pollen) and then make antibodies against it. This process is known as sensitisation.

The time taken to become sensitised to an allergen varies from days to years. Some people stop in the sensitisation phase, as they experience symptoms, but never fully develop an allergy.

Anaphylaxis

In very rare cases, an allergy can lead to a severe allergic reaction, called anaphylactic shock, which can be fatal.

Most allergic reactions occur locally in a particular part of the body, such as the nose, eyes or skin. In anaphylaxis, the allergic reaction involves the whole body and usually happens within minutes of coming into contact with a particular allergen.

The symptoms of anaphylactic shock can include any or all of the following:

• swelling of the throat and mouth
• difficulty swallowing or speaking
• difficulty breathing
• a rash anywhere on the body
• flushing and itching of the skin
• stomach cramps, nausea and vomiting
• a sudden feeling of weakness, due to a fall in blood pressure
• collapsing and becoming unconscious

However it is obvious in other circles that people really don't know how serious allergies can get. I have a friend who has let me discuss an incident that has occurred this week. my friends child has several food allergies, most of which lead to Anaphylactic reactions. A child at my friends child's school decided to take it upon themselves to see if they were really allergic to the foods they have said they are. This child has managed to take the other child's lunch box and contaminate it with yoghurt, taking great care to put it in the wrap for lunch and in the bottom of fruit compartments. Thankfully the child was seen messing with the lunch and the right people were alerted before anything serious where to happen! My friend had to come and collect the lunch and provide a new one which obviously is a cost if people are like us and like to plan and have a certain amount in! This could cause issues, or rather it would if it were us!   The parents of the child in the wrong were informed of the incident and their response to my friend " Are X's allergies real? " and proceeded to say the school had been a bit harsh to their child. 

 If i had found out that one of my children had taken someone's lunch and decided to do their own experiments to see if a child was really allergic to an item of food I would go balistic. This could have had the real potential to kill a child and the parents are very blaise about it all? HOW? Why are they not up in arms that their child could have caused the death of another!!!  I would be also very apologetic to the allergy child's parents. But this is not the case. I am so angry on behalf of my friend and really want to urge people to take a moment and think. 

Allergies have the potential to kill, no ifs and buts there really are children out there and people as we have seen in the news recently that are dying due to a lack of understanding on allergies. We don't do this for attention.

Personally I would rather not have to check menus every time we want to eat, or labels, not have to carry a bag full of life saving medicine everywhere for just incase.

 I would rather have a easy life, no, eczema, asthma, allergies, hayfever.(On top of her joints being in agony every day.. )  But we are just not so lucky as everyone else so its something we have to man up with and its taken a year but we are manning up!  

Now there is a "cure" for the stupid people, its called reading and gaining some knowledge. I hope that they never have to face what us in the allergy community do. 

February half term already!

This year is going by so fast already, we are at February half term,  so the kids have been at school 5 weeks since new year! scary!  we celebrated the little boys 3rd birthday last Saturday! with a trip to London to go and see some dinosaurs and under ground trains that he loves so much!

Birthday boy!

Eldest and her beloved stuffed dog Georgie

This is how apparently Chelle is spelled in Starbucks outside Enbankment station....   I'm going to pick a new name for myself for these places!!

It was a good day, we managed to have lunch somewhere in peace ( imagine that!) though the museums where very busy and we had to que to see the dinosaurs in the natural history museum for a good 40 minutes! which was not good for our eldest who was struggling even when topped up with paracetamol and ibuprofen.  As we were not running around London trying to show our friend around the tourist stuff we thought we would try and see if she could manage without us hiring a wheelchair... that was a huge mistake!! just because we put her through so much pain.

Went to the doctors as our latest pram broke due to sometimes needing her to go in so we could get home  and or to drs appointments when unable to walk and asked for a wheel chair referral. Right i know what most of you are probably thinking, like what the hell sometimes we see this child running around being "normal" but there are days when she just can't walk, she more or less gets down stairs and collapses on the couch. like this morning ( thank goodness its an inset day at school!) because her knee is red hot and sore. We can't do simple shopping trips! We can't have family days out without screaming pain. It's not just stuff she doesn't want to do its everything!  she ends up locking her knee and walking very very strangely.

  

As shown in the video which she didn't know was being filmed, is from over the Christmas break when we spent some time up north with family.  We had already had a 20/ 30 minute break because of pain there and she didn't want to go into the toy shop... a sure sign that all isn't right!! 

Since showing the physio that video she refused to do anything more to help our daughter as she didn't want to cause any more damage to her and tbh ever since we started physio her issues have been getting worse not better not sure if that is a coincidence or not! Finally got a referral to a rhumatologist! though i have been telling them since we moved that we needed one, it shouldn't be such a farce! That is what i feels like all the time, a farce, a fight to just get someone to listen and not think i'm a over reactive parent. It is so hard to stand and watch as you daughter  struggles to walk home from school and its not terribly far. We have no referral to wheel chair services and have to wait for the rhumatolgist appointment in March which isnt terribly far away thankfully ( and i'm dragging hubby to it for back up! ) 

We can only hope that like last year that we will get more answers and more support because it feels sometimes that we are floundering in all this mess! 

Hopefully we have family visiting this week and we can't wait! just wish we could see everyone else too!  but we can't always be the ones traveling up even if we are the ones that moved! Scary how much it costs to come up for a visit! £80 ish in fuel but prob less with the price of fuel atm( that is inclusive of both ways). You then have food at service station unless you take your own so both ways possible £20 each way, normally buy a magazine for the children to do in the car on the way up so thats at least £2 each. Then anything whilst we are up there, food days out O_O scary!!! Also i know our family can't keep paying that either so makes it one of the harder reasons for our move.  Because i do miss how close everyone was really compared to now! 

Not sure when our next trip up is, thought possibly at Easter but not sure! will have to discuss with hubby for best time and when he can have time off work and madam off school etc. so many factors, you don't think of these things when you move, we once said we would try and be up once a month  but that is just not fully feasable with how quick a visit goes and how long it takes to travel up. A weekend just doesn't seem long enough :( esp when you have several lots of family to see. ( as we couldn't go up and not see people!! Hopefully this year we will learn to cope  with the traveling and quick visits.  

Don't take for granted the family you see every week because you soon miss everything. Even if we didn't see everyone every week it was the opportunity too that is now missing. 

To find and give support

I've had my Eczema support group for the last 5 years! yes the group had to change beginning of last year due to it getting to big and too out of hand and far to many arguments on topical steroid addiction that i changed the setting to be solely UK instead of world wide and that all discussions on TSA would be pointed towards the right groups but not really allowed in my group. I do enjoy having the group though, i like being able to give advice and support to people who are in the same shoes as my eldest! It is a lovely little group fingers crossed we haven't had any arguments in this new one at all! and barely any issues and it is such a huge relief when not having to delete people or have stern words as I am not great with confrontation!  https://www.facebook.com/groups/1409148029366627/ is the link to the group for anyone reading that may be interesting but you must be in the UK. 

I did set up a in person group but unfortunatly due to moving had to stop this and we only had two constant members myself and my friend! it was just a shame that we were starting to get the word out there more before we had to move but alas it just wasn't meant to be! However now that  we are down in Bournemouth I am hoping to set up a group down here as there isn't a group in either Bournemouth or Poole!  so an opening at least! I do intend to get things under way and see what can be done as i do really want to set a group going again and feel like I am doing something useful. 

On this note i would like to have a look into groups for Hypermobility. I do believe there is one in Poole every so often but  would have to try and work it round school and to take a look into it more. Or even see if i could set up a support group for that too! though don't want to overwhelm myself or the kids as after all i'll be dragging the youngest to all these! 

In doing these things I am hoping to make new friends but to also get some support, advice and to give it out as well as finding people who understand what we go through which can be hard as not everyone can understand why the 7 year old can run around one minute and then the next be in complete agony and not able to walk. ( it is something to be seen really) We can't do normal trips out without some sort of pain and keeping her topped up with her meds which is great... when they work. ( also who wants to keep having to give their child pain killers just to get through the day!) 

I suppose in a way i should be greatful for the likes of Facebook because i have been able to make my own group and also help admin a group on Developmental coordination disorder (Dyslexia, Dyspraxia etc etc) i have found a group on Hypermobility as well as one for parents of children with nut allergies ! If it wasn't for some of these groups i would have lost my marbles ages ago! As well as gaining wonderful online friends and knowledge we get support from each other which is so so vital. Now if i can do this in person and find someone to go for a coffee with to have a little whinge with each other about our problems i won't have to vent so much on here!! 

Got Physio appointment tomorrow for eldest should be very interesting considering the terrible few weeks we have had with instances of not being able to walk at all!  and painkillers not working. I'm not holding out for a miracle but i do think we need some aids to help when she is having considerably bad days. Fingers crossed! It's going to be a hell of a long day. 

The end of 2014 and the start of 2015

Well it is the 1st of January 2015.. I know everyone will be doing what I'm doing, going over the last year and looking forward to this one! however there is only so much you can post on Facebook with what you would like to say!

I think that 2014 was a year of learning and growing ( even if hubby says how much more can we grow up we are adults!) But personally i think we have had to grow up and learn how to cope with alot of things and to take huge steps.

In March our eldest was diagnosed with a nut allergy, really rather scary! especially when you start seeing how much it is in everything yes even just may contains but not all companies are covering their back there, they have to have a proven risk to put on a may contain. I know people think I am paranoid and over protective but if it was your child would you let them play Russian Roulette with something that could potentially kill them? no you wouldn't so don't judge me when I am trying to protect my daughter from having a possible serious reaction. Epi pens after all should be used in an emergency not an excuse to eat your allergen.  Being on this particularly journey has opened up my eyes in  what we have in our foods and wondering why, and asking companies why there are these things and why is there a risk? and having big arguments along with other nutty mums with the giants like Tesco! (not good if you get annoyed easily!!)

In July we finally found out what was causing our eldest the pain in her joints, and that she has joint hypermobility syndrome. Now most people might know of hypermobility with people who are/ where termed as being double jointed! Now alot of people being hypermobile doesn't cause any issues and some actually find it useful, alot of footballers and dancers are actually hypermobile and it makes them more supple! Then you get people like our eldest, who gets the pain with it, only 10-15% of those with hypermobility actually suffer with the syndrome. (My source being Arthritis UK) Knowing what is wrong is just one part of the journey. Yes great we know she has JHMS ( joint hypermobility syndrome) but trying to get the help after that seems like hitting your head against a brick wall!  We are trying to keep her active, but a general walk around the supermarket is enough to cause widespread pain and wipe her out.  Don't  get me wrong some days shes ok, she can run around with her brother, walk to school and be ok. Then you have instances where she literally can't get out of the house. ( This is not for the lack of love for school as she was upset she was going to be off school for the winter break!)  It is very very draining and not alot of people understand or i think can deal with my moaning about it. I have cried over it, more then i should perhaps and i know there are people worse off then us. But this is a huge thing for us to deal with. Especially having no one close by to lean on. We have physio and a couple exercises and need her to get her back to swimming but we needed to get settled in to the new area and house first!

Which leads us to the big thing! our move to Bournemouth!! We moved in September and have been here now for just over 3 months. Silly, crazy hectic! it is hard being away from our family and friends, family the most and on our trips back that does hit home rather hard esp when we are trying to split our time when seeing everyone.  I hope the kids understand our decision when they are older, that we wanted something better for them, better environment. Eldest adores her school and they are so understanding of her issues ( all of them!) when the teacher wants to take you to hospital and rings up to see how everything is as she knows we have no one down here.. that is a sign of a good school ( or perhaps just a good teacher! ) We are however finding the car trips up and down easier and not so much of a slog we are getting use to the long trip so it doesn't feel so draining.. unless children are being sick!

I am not sure what 2015 is going to bring for us now that we are here, I am hoping that we will get some help with our eldest,  someone to give us good points to do instead of a blaise well do this this and this and she will be fine. No.. shes not.  Our youngest will go to nurser this year  after Easter as his birthday is in February he starts the term after then... Fingers crossed he will be willing to go! but i will cross that bridge when we get there! we will also see if he starts to talk more! Not that he doesn't make himself known but  we rarely get much more then a few words out of him!  Nothing else is planned, no holidays thought of  as most of our holiday time will be spent coming back to see family, however we do want to go to Cornwall whilst we are down here!

No big birthdays this year as that is next year! So we will just have to see what the future brings for us! It will never be a smooth ride but I am hoping that there arn't as many bumps in the road. Looking ahead!  Here is hoping it is smooth for everyone i know and love xx