Ah Easter holidays at last

Finally we are here! Two weeks off for easter and all I can say is thank goodness for that!! It has been a very long 7 weeks this half term  with chicken pox with a urgent dr trip due to mr having an eye issue, severe constipation requiring several hospital visits adding on lots of meds for madam to take.   we have had two referrals put in for mr due to well... everything and tbh I need a break.

The stress I feel has taken its toll these last few weeks my patience is short my mind is absent. I have been worried about losing friends and everything has felt like chaos. Chaos all the time. I feel on edge and wish I didn't.  We have had sprained ankles sore knees and this last week a badly sprained little finger (don't laugh it seems quite sore and swollen)  mr has been very hot every night to the point he has been incoherent and gibberish but he remembers so not night terrors. So stripped down and no pjs which he is not too impressed over but needs must as i've had window open and everything! 

Worst thing... is the waiting. Waiting to get seen by the professionals i know his referral that was done via school is at the community paediatrics and has been there for about 4 weeks now and it has been waiting along with apparently several others to decided whats going to be done with it. As he can be seen at the community or it can be sent to the hospital, which for all the combined issues could be the case. So should we take bets on how long it will be to get seen? All the while my anxiety is threatening to take over. I am really trying to not let it, but it is hard when dealing with these things every day. We did go to the gp but he just wanted to add some umph to the referral that is already in!   We have been dealing with end of termitis for a little while now so it is great we have now finished. 

We have a busy two weeks in store though ! ( well ish ) We are going to see family this week <3!! can't wait it has been too long for most of the family but alas thats what we get for living here! 

We also have optician apps for both the kids whilst we are up there! ( madam  as optician was explicit that he wanted to see her next time we were up!  and mr as he has a midline tracking problem and just seeing if they can actually check/ do anything or unless it is defiantly specialist and have to wait for the paed referral ) 

After we have been to see family we are going to go and stay near Doncaster, as we want to take little man to York train museum! and a good excuse to just explore where we don't normally get to go!  So looking forward to a few days away to see family and have  quality time with the kids and hubby as sometimes all we seem to do is go to school, work etc go shopping for food at weekend and repeat! 

Hoping to have some nice days at the park, not over doing it of course as want to make sure the kids actually have some chilled out time! next break from school isn't a million miles away though and then.. dun dun dun!!! the one after that is summer hols and we go away!! <3 ( well fingers crossed we do eeeeek! )

Whatever you do have a lovely holiday/ time off. Stay safe! 

Always Carry Two

As you must know by now reading this that my eldest has allergies,  being atopic  does give that away doesn't it?  She is classed as at risk from Anapylaxis not because she has had serious allergic reactions in the past but because she also has asthma on top of her food allergies.

Allergies are a tricky business,  you cannot predict what sort of reaction someone might have from one day to the next, it really is a minefield. As well as trying to avoid normal food, places to eat, you have to dodge around the ever growing field of may contains and, produced in a factory, or we cannot guarantee the ingredients that come in though nothing we make contains nuts.

Now we have been dealing with her nut allergy for 3 years,  her first reaction ( that we know for sure) was 3 years ago this week!  She is allergic to tree nuts, specifically, walnuts, pecans and cashews.  Not a great deal but we are told to avoid all including peanuts.  As well as that she is currently intolerant to wheat and maize and has environmental allergies  to weeds, trees, cats, dogs and all types of mould!

Its not horrific once you get used to it all, yes it is very daunting, and it is difficult some days, especially when we need to play around with food and do a food shop is incredibly stress full, Eating out is a nightmare! good job we don't normally do it!

What is frustrating and the reason I am writing the blog today, the carry two campaign. Madam carries two epi pens, she has this medicine for the very real possibility that she could have a severe allergic reaction and these pens are there to try and save her, and to make sure we are able to get to a hospital. Recently there have been  medical professionals saying that people only need to carry one pen... one life saving, potentially, medicine.

What they fail to see however is the  other factors that could be involved,  epi pens do not magically cure what is going on, nor do they know the situation you are in currently. Ambulances need to get to you quickly.. (aslong as they think you are in urgent need of one!!) and can take anywhere from a few minutes and up to get to you. If they can. epi pens are there to keep you going but what if the first pen doesn't work? misfires?  or simply just isn't enough for a very severe reaction.  I am not just speculating, there have been very real cases of this happening, where ambulances haven't been sent as urgent,  where a pen has been fired into a finger instead of a leg! etc.

As allergy parents/ advocates  we are always fighting, sometimes you have to fight for people to simple listen, to see that xyz is causing reactions, that there is a real need to go for allergy tests, to get checked on now and then.  you feel sometimes it is you against the world, you are your child's and your own biggest advocate.  After all you know exactly what the normal is every day.

I will always support the carry two campaign. Why? because it is my babies life we are talking about! why at 9 with all the crap she deals with should she have to worry  or think of the what if's of her medicine not working, if she can get to safety in time, she should have a normal as possible life as her friends.  Her life is just as important.  Isn't it?

Where is that magic wand?

Over the last week I have started to write this blog post 3 times, all under different names, why have I not finished one yet? (until hopefully this one lol) I just don't know how to get the words out of my head without sounding too strange. Alright we know I am strange strange is good right?

the last few weeks have been manic, to the point I feel like crawling into a hole and possibly staying there till things blow over. I wish that was completely possible but alas with two children hubby and house to run it makes it impossible!

It has been hell.  One thing after another and I know they say these things come in 3's ( and i do believe that for the most part 3's or 7's ) but seriously... it needs to go away NOW!!  there is coming to a breaking point with me, I am not sure i can handle much more and I am being brutally honest there. I am feeling very strained in alot of levels and finding it hard to communicate some of these reasons. I just feel so out of sorts!

Madam beautiful determined madam,  has had one thing thrown at her after another and I really wish I had that magic wand so I could take stuff away even just for a few days. It breaks my heart to see how she is struggling.  From those that know us and know the blog, will know she has been suffering from IBS issues for over a year,  treatment has been on and off and I largely put down her issues to her diet so hence we took out wheat completely and now maize out completely. However the damage had already been done from little man's birthday where i made a gluten free cake etc but it was not maize free and caused reflux issues cramps etc.  During half term she had gluten free fish fingers.. and  i can pin point then when she was hurting and cramping.. since then she has been severely constipated. ( yes yes we British don't usually talk about something like this but sod that! people need to talk more!! )

We had an appointment booked with a GP so we could discuss getting madam a referral to a gastro specialist and or dietician. I can say now we have one.. but they way we went about it.. wasn't the route I was expecting!  when we had the gp app booked it had been 11 days ( we think as not fully sure I don't follow the 9 yr old to the toilet any more)  since she had, had a movement. Yes eww if you don't want to read  close the blog page.   GP immediately phoned the hospital as she had already been on meds to help ( things we had at home! ) and nothing was helping.  We had one complication though, little man was getting over chicken pox!!!  which is a tale in itself since he had them everywhere! (literally) but alas.. we had to drag him to the hospital too.. thankfully he was mostly scabby.. but it added on extra precautions and measures at the hospital.  ( side room, no tv.. bored children anyone!!)

We were told then madam should really have been on long term meds since last year, something I am not impressed with!  all those incidents could have been avoided and possibly this bad one. Over the next week it was very hard going, having to go back when she started throwing up.  The things we have to do as parents, like trying to decipher what on earth she was throwing up. (turned out it was her lunch from 8 ours previous)  Ended up seeing the gastro specialist who put her on a range of meds and one strong one.. something coloscopy patients get... even then it took a long time to work!

I wish I could say things were getting better but atm they seem to be slowing down again. Yes we are now under a gastro and will be under his clinic in a few weeks but I have no one to ask for help unless you include the gp? haha.  To top it off shes hurt her knee at  PE in school, usually happens when she has over done something though she is active sometimes things are too much and last night due to hobbling home, her ankle couldn't cope and she has now sprained that!! Honestly, I am not sure  if I could make it up or not. Her teacher was in disbelief that she has done something else on top  of the rest of the crap shes dealing with! Hell I am sure she didn't plan any of this I promise..

I don't like saying sometimes I have children with special needs as some wont see it as that, though the joy of invisible illnesses is that you don't see the issues madam does have, the pain the struggle she faces. Why? most of the time she gets on with it. at 9 years old she copes better then a hell of alot of adults. She takes it in her stride and she is bloody intelligent to boot. (no not just proud mum saying it) It is shocking how much she is still achieving. I am so so proud of my baby, my heart breaks as she is struggling with pain and discomfort and things she shouldn't have to deal with. I am not sure how many people realise the strain it has on the parents, when the meds are not working, when you are sat just wanting a minute hearing your child crying  with nothing, nothing you can do. it is soul destroying.

I like to say I am strong, determined, we get on with it here. We plod on.  but weeks like these just really show you who you are. What kind of parent you are and how you face the world.  I want to liken myself to some Warrior Britain of old I am certain this is now how I come across unless in a mood heh.

I knew this year was going to be interesting, I was hoping in better ways, not just more issues for the children. If i knew what was up with little man as well i would  talk about that too. (referal to a pead done via the school who had a occupational therapist in!) and if you start looking up what they said it brings up scary things so as my friend says i really need to stay away from Dr Google!   ( I am trying honest!!)

Roll on July... could really do with this family holiday now!!  (Or that wand ;) )

Enough energy for the week

Not even sure how  I have calmly moved through this week, well I am assuming I have stayed mostly calm that is!

We have had a week of contrasting weather, the beginning being Foggy really really foggy ( can't see the houses other side of the street foggy!) and very icey under foot, but ice you can't see, it was rather scary to be honest we don't live far from school, not really a 5 minute walk for me ( quick pace) but trying to move up a hill.. with ice you can't see lead to sliding back down the hill!! and it wasn't just my fat bum trying and struggling to move up it!  All i could think of was the time my step dad slipped on ice and badly dislocated his knee! kids are well versed in the be careful because remember grandad! three days we had of this!  thankfully I never slipped once! little man did though  bless never seen so many bruises on his knees! ( and there are normally quite a lot!)

I am rather glad the fog had lifted and now this weekend it seems to have warmed up a little, I was getting rather fed up of being so cold even with the heating on and needed brews to keep my reynaulds at bay!

Poor madam has been struggling alot with severe constipation again, we have a few instances of bad stretches but this was getting to the rediculous standards again!  gave in and went to the doctors on Thursday ( as we know how much i love going up there!!) and she was put back on movicol and we were told by the doctor to just completely give up on the wheat, yes in the past we've been told to take it out, but the allergist said she needed to build up her tolerance of it, not that she gave any guidance!!  so we had been having spits and spats of wheat,  and you would know of  too much. This makes this so much harder meal planning, lunch planning, treat planning.  She needs to be nut free, wheat free and corn/ maize, the last being as we had noticed it gives her severe cramps if she has the latter! not that this has ever been confirmed however we did discuss this with the doctor and she said I am the best person for this matter knowing whats right and wrong. ( hell... why don't they listen like that over her bloody joints). So the hard part.. getting movicol into the fussy 9 yr old! took some experimenting, and found with summer berry juice and through a straw works!  small things but aslong as she is able to have her meds i suppose we can't complain.

Now.. apart from the obvious carrot cucumber etc  snacks. 9 yr olds rather like treats, especially if they have been used to them.  Suddenly saying sorry you can't have xyz leads to chaos and upset.  but trying to find all this free snacks that at least resembles a treat is seriously bloody hard!  what did we end up with yesterday? rice cakes.. she won't have rice cakes forever and i have told her that she is going to have to broaden her horizons in what she eats! ( as we are going to have to ) She got upset because we had something and she couldn't. Now I don't do this with nuts, but i'm not taking the family completely off wheat because she has to so the world was against her yesterday and apparently not part of the family any more... I did say i had a 9 yr old and not a teenager right?

Sigh

She has had a rough week though, we had some lovely new child in her class who thought it might be fun to taunt and tease her one lunch time, they had asked her to open something for them, she saw the ingredients and said no i'm allergic ( may contain nuts) yes i know she isn't eating it but its her comfort zone after all so she said no. Child managed to open it themselves but then decided to shove it into madams face!  and ignored the fact she asked them to stop and that she could react they said they didn't believe she had allergies.  She went and told a teacher when she was finished and i have to say thankfully it was dealt in a swift manner and child was put into the hub, a place where those naughty etc go to if needed, this was for a short time. I would have preferred if the teacher had pulled me aside and told me of the incident instead of madam on the way home starting " Mummy don't worry this has been dealt with but...." We had to have a serious conversation and i am sure many of my mummy friends don't have to talk about something potentially killing their child at 8 o'clock at night. (myself and madam have a chat at bedtime) Children shouldn't have to think of this reality or even think that a peer was trying to hurt them in this way!  not that the child prob knew any better but still. In a previous blog post I had mentioned other incidents friends have told me about children wanting to find out allergy reactions from those with allergies, I suppose it is the mild curiosity but to us it is scary and I am hoping it is a isolated incident!


I am glad it is the weekend, so some sort of chill time can be reached, next weekend we are having a treat for the little mans birthday who turns the big 5!!!! my baby is 5.. we are going to London so he can go and find the Rocket (Stephensons) since he has a small obsession with trains atm! and to go and look about other museums whilst there. seems to be a theme for his birthdays since we live down here! his 3rd birthday we went to the natural history museum!   Hoping for a slightly calmer week!!

The cute and the not so cute Invisible illness

Shock, I know I don't post so close together any more with my blog posts but just been thinking over some things, things that have been said and even things that are not said. ( Other people have conversations in their head right? ;) )

I was pondering over some of the things I say to my eldest, when sometimes I completely forget some of the issues she has. I know that makes me sound like a horrible parent but lets go into my shoes for a moment.  I have a 9 yr old girl, anyone that has dealt with girls knows they seem to hit their tweens before they are even tweenagers! sometimes it is hard to remember that she is only 9!! and only really just 9 since her birthday was in October.   Her issues apart from her eczema and any allergic reactions and any swelling are completely out of sight, out of sight out of mind is the saying right?

So.. when she can't hear what i'm saying even though i'm stood right behind her?  for some brief times  I go mad especially if i feel she is ignoring me,  It takes a while to realise hold on she does have an issue with her left ear, it means if she is concentrating on something else, tv, minecraft etc etc then she might not hear me or hear me clearly. Sometimes she has to say Mum I can't hear you! Not sure if this is related to her hypermobility, it was never decided what was wrong with her hearing it was just .. something, something that won't go away.  Not severe but enough to sometimes cause issues and it does wax and wane with severity. ( blame allergies there for possible glue ear on top)  It is easy to forget there is an issue especially since she has no hearing aid or anything. Also come on which 9 yr old doesn't sometimes want to ignore their parent? they are in that tricky phase..  or is it just mine ? :-p


Realised these last few days again I was being a little harsh on her,  every morning esp with the lights on she is struggling to open her eyes, I  wasn't very nice thought she was just milking it a bit not wanting to possibly do anything just getting up grumpy etc.. when it dawned one me,  the muscles in her eyes are not working as they should! whoops.. no wonder she is struggling as her eyes are not adjusting. ( as optician said, her eyes are not adjusting as quick as they should when she takes off her glasses etc so still blurry) takes quite a while until she is able to adjust and its taking her to need her glasses more.  Possibly thinking of one of those wake up lights that make it more natural way to wake up? and she wants a clock in her room so really will kill two birds with one stone!


You have to really balance yourself as a parent in this situation, you have alot of factors to consider, especially when she is in "pain" you have to take everything on face value sometimes quite literally,  you can tell when madam is in pain, her face shows it all, especially  how tired she is, not that she will say she is tired, when do children ever admit to being tired?  the dark rings are a dead give away!  but since there is nothing visible sometimes I feel the mean parent, due to not being able to do much sometimes its well, tough!  I have given meds, I have done cuddles and heat pack and sometimes i have to go away, that.. is horrible, i was never one for cry it out and can't stand listening to my children crying as because as it should it cuts through me! especially when in pain!   this is where i wish i had someone i could message, call, ask, is this "our normal?" I have support groups I am on, but they don't always have the answers or things get distracted and we end up talking about something or someone else, which yeah is fine, but doesn't always help the original poster!   I have to also realise that madam.. does not want to miss school, she loves school and learning, miss brain box.  It's when i feel mean for sending her in struggling but i know whilst there she is learning but distracted as well, most of the time!

I know the title of the post suggests cute! .. i suppose the cute is when i forget things, or the little quirks we have. She stated last week about a fairly new bed and mattress, I hate my bed it doesn't let me sleep......, No love... your bed is not to blame its your body not getting comfortable! silly and its better then the last mattress.

I have to say though she had a really bad back last week and beginning of this week, but you can tell she has gotten better, why? she is laughing and joking and being silly. something she hadn't been, as of course she was in a lot of pain. These are the things I have to take away the good days,  the happy laughing moments. The moments she loves my cooking ( safe dessert anyone!? ) and just moments we can laugh together which i want to do more.

There is a lot of learning as a parent, and even more as a parent trying to help a child with chronic pain and problems, I know we are fortunate she is very clever and she does have good days, very grateful and these are things I need to remember when having the down moments, the frustrating days, the days we can't do anything to help.

Just think.. not everyone has things that show on the skin, there are alot of invisible illnesses, some people have good and bad days, and they can be the same DAY!! you can get up fine and go to bed a mess, I have seen it, witnessed it and lived it. 20 mins into a walk a ankle might go and thats it you are buggered.  We need more compassion and understanding in the world especially with the times ahead. So just some thoughts if someone seems "fine" to you, doesn't necessarily mean they are.

Happy new year! Hello 2017

Hello 2017! ( nearly put 2007 then lol my times have changed since then!)  we are a week into the year!  children and hubby have already been back to school for some of the week and I suppose life is getting back to normal after christmas, depending on what you might call normal!

The house still looks like a rubbish/ toy/ food bomb has gone off! not helped by the fact every time we go out to shop, be it top up, food shop in general or  a wander we are finding bargains! (whoops) though the freezer is full.. the cupboards are full which is nice, we don't have to worry about food for the time being which  is always good! all i have to do is think of meal plans! We visited a wholesale yesterday which does food after their best before dates, some are a couple weeks others are years! though as you should know, best before is merely a guideline and really the food is not going to kill you! Safe to say we have enough cereal for a while! (even enough to bake with whoo!). We have bought enough Christmas things in the sale to make next Christmas look like a wonderland! ( poundland 25p items! lol ) and have already bought a couple of presents.. ( i know i know) but for a change it feels like and prepared!


After all we have no idea what this year brings, madams dla is up for renewal and as much as her health isn't in a good place  I am not confident it will get renewed. Trying not to dwell too much on that score as it is later in the year and alot can change between now and then! but atm she is not in a good way.  Before christmas her back was hurting and it has starting hurting again, all the way down her spine and the muscle on either side and seems she has some swelling at the bottom. Just what we need she is feeling very off side and very grouchy! which is completely understandable but it makes being a parent very hard to deal with! she is not a teenager we shouldn't have to deal with this kind of strops yet. I miss my happy smiley girl! As atm it is just one thing after another and it  is alot to cope with.

Speaking of health. I have been discharged by the counsellor, as we concluded after 2 apps and in third that my depression is not solid depression but a cumulative effect of everything I am trying to cope with. I have a very supportive and loving hubby and family even if we are not close in terms of miles we have a good relationship ( aslong as we don't discuss the dark side!! ) and I have friends i can connect with or who drag me for coffee ;) not that i am complaining!  I feel I am "ok" and the counsellor is writing a letter to the doctors to express that the right course is to make sure madam has a main consultant who can over view everything! instead of us having to nit and pick with so many different people who can't help with other bits! Fingers crossed when I go to the drs they will be accommodating.

In the mean time we are currently looking at ideas for holiday places in France! as we need something to look forward to and we are dying to go back again! and sooner we book the sooner we can save money for it and potentially do more. Though last years chilling out was very nice!
As well as organising family visits! Think this year will be just as busy as the last!

More adventures!!

December 2016

Wow where has this year gone?!  i know i know everyone always says it and sure i said it at the last end of year blog in 2015. But last blog i wrote was in September!

Little man has settled very well into school and has now started reading! though not as fast as what his sister did but still very impressed with his progress so far! me being the over anxious person I seem to be  (or everyone else thinks i am) was worried he could be like me and be dyslexic. Obviously there is lots of time yet for this to happen or come apparent but for now I am calm, he is writing well considering his very hypermobile fingers and we are just monitoring it all. He is not as tired as i thought he would be, to be honest.. he is still up at the crack of dawn, he goes to bed at the same sort of time. He is playing rugby tots regularly at school, a follow on from when he did free sessions in pre school. He has made friends and is generally doing well!

Madam, well her headaches which she was suffering with at the start of term have really settled down now, which i am super glad about, though we still have flares it does seem to be noise related but her teacher  came up with a solution that madam and another child can say a code word and the rest of the class will quiet down!  Still suffering of course with her joints and ibs issues, though we seem to have stumbled across  that she suffers with maize/ corn products!  which cause cramping, where as wheat causes bloating. so no more sweetcorn for her! which is a bug bare as its cheap and easy to put in alot of meals. But not much we can do there its just madam and her issues.

Currently having more problems with her back which she claims feels like jelly but i am wondering if she is growing.. and if her back could be hypermobile. Like the rest of her.  GP has written back to the physio.. but I can't see much happening there! physio only wanted us to see her again when madam hit puberty or her next big growth spurt!  would like to note though, it is not stopping her in regards to her school work!  We were told at parents evening that she is being placed on the gifted and talented register for her reading and more then likely her maths! Maths we had to have serious words with her teacher with as madam had a meltdown over being bored at school! So now they let her do the work and more thankfully! and we have alot of books at home. ( wish i knew where she got it from me and her dad are hardly good at maths!)  But we are so proud and I am so glad that her issues don't stop her from achieving in school.  It doesn't mean much being on the register just that they will make sure she has what she needs to be challenged. Reading they are setting up a specific reading group for children like her. Maths i'm not so sure but sure it will be more on the lines what they are doing already!

As a family we had another quick pop over to France!! for hubbies birthday, after last years, if we all remember i had that short stay in hospital with my appendix! ... (whoops) and couldn't do anything for his birthday. so we made up for it this year! it was great, only a day trip into Calais! shopping and just walking around town exploring. It made a lovely change! and hope to do it again! Euro shuttle was great and def an option for our next visit, which we will probably do for our holiday again in 2017!

Finally had it noted that I am hypermobile, though no one has done official testing, i went to the drs over pain in my hands, esp as my left hand in particular, the thumb hyper extends and it makes it very difficult to do the usual every day things, like chopping veg! holding a book!  spoke to gp who when i fisrt said just promptly showed me that her thumbs hyper extend ( whoopie for her! ) told me at my age !!! ( wth i'm 30!!) there isn't anything they can do! .. hrrm sure there is i said i'm hurting its difficult to do things, so she played around with my hand, said my thumb joint is rather loose,  well duh its hypermobile, and promptly did a test that showed i have an issue with tendons in my wrist.. well that was a new one!!  should get better but currently it feels in a steady decline, pain more days  i do have supports but next step would be a steroid injection, though aslong as it worked better on me then it did on madam's knee.  Also i have reynaulds .. nothing serious there just my hands are affected by the cold, feet too, but as far as i've seen they don't go blue unlike my fingers and don't struggle keeping heat!  These are things I can deal with however!

Finally started seeing someone over my depression, very.. harrowing to see it written down that i have moderatly severe depression and mild anxiety.. though with everything that goes on  I am not surprised, i do try and not let everything take over, but when accidently smashing plates ( a good chunk of them too) i thought it was the end of the world, it is a sign that .. yes i'm not in a good place.  I shoulder a lot of things and plod on, its almost like our family motto "Just Plod on" .. really need to make that into a plaque or something!

And so we plod on into 2017! what will it bring? who knows possibly another family trip to France,  and everything else is a mystery. I  hope for health and happiness. People to listen, support and understand. We are grateful to have friends that listen and care and we step into another year, stronger, i think so. We are determined stubborn souls in this house and I don't think that is going to change any time soon.

All my love for the holidays and the new year, lets see what 2017 throws at us!