How are you?

How are you? Three little words. Often some would complain they are not asked enough and on the other hand not answered truthfully enough. I would fall into the not truthfully enough about 99% of the time.

Why? Basically it comes down to if I know you well enough. I will say I'm ok to general people those who dont really know me. Because who wants a full conversation with a near stranger over whats up. It is easier to say you are ok instead of exploring why you are not.  Those who really know me will know when I am not okay. When things are not going well.

Recently madam had her first anaphylactic reaction to something new. We have never had to use her epi pen and up until now it was always just there that safety line for just incase.  Having to use it was scary. The whole incident was scary. I was in denial to be honest I thought it was a mild reaction there were no hives she wasn't sick so it was odd. What she did have was a persistent cough, her tongue felt funny, her throat was itchy and tight she complained of itchy lungs which was bizzare. She later told me she felt dizzy and light headed and she was hoarse. I was so adamant to let the anti histamines work but they didn't.  Thankfully the epi pen did and she had to go and get checked over in hospital.  We're she spent  the next 16 hours. Due to her cough returning 5 ours after the initial reaction. Her heart went low and she said felt funny and her throat was reactive. Steroids and anti histamines helped and we were eventually allowed home.

Now nearly 4 weeks on people ask how we are and how she is coping. I'm not sure I have even fully addressed everything in my own head.  Adding yet another thing to avoid has proven difficult.  People might assume it's easy but it really really isn't.  Madam is now avoiding nuts and soya due to allergies, wheat and maize due to intolerance and maize in all forms even starch sets off reactions.  Also avoiding chocolate cheese citrus and caffeine due to being diagnosed as having migraines and having to avoid these triggers ( though not sure these are her triggers).  Okay so got all that?

Let's start with bread, normal bread is a no due to the wheat and gf bread is 99% no due to either having soya or maize in and in some cases may contain nuts.  I did find one loaf so suppose that's better than nothing but at £2.80 for what looks like half a loaf is not cheap.  Pasta is a no, gf pasta is made form corn in most cases we have found rice pasta but it doesn't cook well. Found a lentil pasta to try however so will have to update there.
Everything has to be made from scratch there are no quick fix meals i can just pour from a jar.  Because they contain maize starch or corn flour or wheat and Chinese meals soy. Keeping up?   There are no cakes or biscuits I can buy. Crisps are even a challenge. Yoghurt we have found one brand of the planet yoghurt she can have. Which we will try and jazz up.

Am I Okay? No I am tired and exhausted just from trying to feed my child.  She is living off plain salad and jacket potatoes most of the time with fruit and crisps. Which yes is prob quite healthy for a child her age. But hard. She sees things her brother has, as I can't stop him having these things, and it hurts her. Treats consist of sweets atm which is not ideal.

I don't think I'm addressing things like food could kill her... no one should have to cross that and although we have had epi pens for 3 years your mind set changes when you have had to use one. These are life savers and I am like a drill sarg making sure she constantly takes her things with her.

So on top of everything else  like her bowel issues and joint pain and hellish migraines  we have little man looking more and more like he is dyslexic just like mummy. We are waiting on a nerve conduction test and a full on eye test at the hospital at Southampton. This week he is having a co ordination test with his physio and occupational therapist.  And my life is full of appointments. Job? Where could I fit one in lol.  We are closing out this year fast.  And I am really not sure how I've not turned grey or pulled it all out. I think I must have some special mummy reserve and some very good friends who do let me vent often.

Ending? Maybe we should all be a little more open and honest with how we are it might make the world more understanding.

Goodbye Summer, Hello Autumn

Here we are once again, wondering where the hell the year is going!  To say it has been a little manic might be a bit of a understatement!

As we all know it is never ever quite in this house and if it isn't one thing it is another, even when people comment, when do you ever get a break? you really do have to stop and think, do we get a break? Short answer no.  Do parents ever get a break though? can't answer that one! We are not in any way a normal house hold!

We have been here now in Dorset for 3 years! 3.. my son little monkey man ( or maybe not so little he is getting so tall!! really) has lived longer here then he did up north. That is a really scary scary thought. Will take a lot longer for us to say that!

Another scary scary thought is that my beautiful and very intelligent baby girl is the big 10 this Sunday. I have been a mummy for 10 years!  This time 10 years ago I was stuck in hospital,  having had bleeding for the previous two weeks I was on official bed rest and going slightly bonkers with it. Thinking back I was only 21.. and about to have my first major surgery as there was no other way we would get through it all without a c section. So much has changed since then.

 I am so incredibly proud of the young lady she is becoming, she faces so much for her age and alot more then her counterparts and to be honest most adults I know! And you know she comes through it every day, and when she does break through a headache and she smiles and is happy and running with her friends or her brother it makes the world seem at ease to the chaos that is is normally in.

We added more to her list recently, she broke 3 bones in her hand just before the summer holidays but she did it in an unusual way! never ever straight forward our madam. she had micro fractures that could only be seen on an MRI and then fluid in her bones which was the oddity. So I do believe we are going to have to watch her in future, and be aware that it might not just be a one off.

She has officially added migraines to her list of issues, and for the time being we are going to have to take off extra things from her diet. (Chocolate, cheese, citrus, caffeine) oh the fun we've had with that the last few days. This is not hopefully a long term issue and that we will be able to add them back in just to see if there are any triggers for her. we know noise is a huge issue and being tired! .. tired we can try and sort noise is harder. The tiredness  is difficult especially when she is struggling with getting to sleep due to the other issues. Honestly, huge circle all the time.

Personally it does take its toll, it has taken its toll on me and the house. I won't go into a pity party again! 
 Autumn is here and i love Autumn, the fallen leaves the frosty foggy mornings. Snuggling up under blankets, and hot chocolate coming out ( or for madam hot fruit tea!)  I can only hope that things will continue to improve as we move onto Winter and into 2018! 

Lets see how we get on

Where have we been? seems like I've gone far recently but haven't. Ever felt like that?  feel I've travelled hundreds of miles and not always a good journey and back again.

Why?  Well those who read regularly will know that little man is looking like he is having the same issues as his sister, and has some things that she doesn't suffer with!  Some people might be like bloody hell you have a lot to deal with, neighbours have even commented that I am normally out and about trying to sort stuff out but  sometimes you just have to deal with these things, as a parent you don't have any other choice! you have to deal with the good and the bad.

It seemed that it was taking a long (loooooooong) time to get anywhere with little mans referrals, having chased up and chased up and been around in circles and I really do mean circles here.  As after all the initial sighting of mr's tremor was back in Feb! And having not really noticed it before I notice it so often now! Anyway scroll back a few weeks ago when I was chasing the appointments up again! we finally got one!  and very quickly then had blood tests and a very scary for a 5 yr old MRI scan!  That as a parent was bloody daunting, because he is 5..and I wasn't sure if he would cope! he hates noise!  but he managed with his faithful sidekicks ( bobby and squirrelly ) Everything in those senses have come back clear ( phew!!) But we still don't know whats going on.

So thoughts? possibly muscle weakness due to his hypermobility ( which I do think will get confirmed as the syndrome due to pain he is having)  or the only other thing that comes up when you try and look up tremors, an Essential tremor! which really does seem to tick the boxes. We will have to wait till July to find out what his consultant thinks but have to praise her! she rang with both his blood and mri results when other people have just left us to wait and find out! As a parent it is very hard to sit and wait, whilst you see your child struggling, unfortunately I have many years experiences of this waiting lark!!


I know they say don't google things as the scary stuff comes up but in this day and age of technology apart from going and trawling through medical books, what are people going to do? or am i suppose to sit and wait and ponder? If I hadn't been doing research etc then i would never ever have pushed for madam to get looked at properly for her nut allergy or her hypermobility! as I wouldn't know any better and i would be fully trusting the drs around us which, is very hard when they shrug stuff off.  ( yes they do!)


We have a busy few weeks ahead gastro appointment this week to talk about madam finally ( remember a few posts back about her having hospital visits and mr having chicken pox yeah finally going to discuss the tummy) which is "great" timing as she now is having issues with blasted peas       -_-  Can't wait to see whats made of that and everything else. Need some def plans cemented into place!

France holiday is coming! ... and I honestly can't wait we need a good break! ( with little to no issues please :) )

The overall picture, as requested!

This is a entry with a bit of a difference today, as its not a vent/ recall of recent events and goings on at home.  This is a special one. My close friend Emma is a counsellor and she has a Facebook page as well as a website ( will link at the end) where she focuses on Person centred/ existential counselling.

On her Facebook page she covers various topics, self development, boundaries, lots of things! I can honestly say she makes it easy to talk to and helps talk through issues and I know she is a very close friend but I feel this would be the case if I were a client instead.  She wants to look at Motherhood and coping with various issues, including postnatal depression and seeing as I help  admin on the page and have had the blog for years she has asked to share my blog so I offered to do a post!


The hard part I think is where to start.  Or perhaps it's not so hard, my eldest is 10 this year! this time 10 years ago was a very stressful time, for reasons I won't get into on here but  having already suffered a miscarriage earlier in that year being pregnant again I was wanting to keep everything  as calm as possible, though  it seemed fate had other ideas.  I believe it is these events and more that led to my first dip into postnatal depression. I won't say depression in general as I do think I may have suffered alot with it in college and even high school and it would explain alot but won't go into that today.

Madam was born early October, 4 weeks early and a very tiny dot at 4lb 14 oz, I could pick her up with one hand! nothing I had fit her and my mum and mother in law had to rush out to buy their new granddaughter some clothes! no one warned us she would be small. She was born early due to myself having placenta previa ( the placenta completely blocked the way out) and I had already been stuck in hospital on bed rest for two weeks before she arrived via c section. So it was a very stressful time! baby blues hit two days after she was born, I was so upset, I wanted to go home, madam wasn't really drinking any milk, I was desperately trying to breast feed and struggling as she was so small and the hospital at that time were not very supportive, told me to go and ask another mum for the breast pump after having a section!  and being socially anxious that was a no!  Basically she was so small she was just sleeping but I've only really come that this conclusion later on the hospital didn't! but they were insistent she needed to drink so we could go home! It was during this time I noticed madam had very dry skin, not the baby soft skin everyone speaks of and  it would be later that i realised this was the start of her Eczema.

I can't remember now how or when I was diagnosed with postnatal depression, I remember friends of the time wondering why I was depressed or how could I be when I had a lovely little baby about. It's hard! she was so small, and not feeding and being a new mum takes its toll you don't realise everything until you are going through the motions that this little creature is now completely reliant on you and you made it and its scary! Very!  the smallest things made me worry, worry something was going to happen to her like when out walking near the canal that we would accidentally let go of the pram and it would go into the water, it was unlikely but I had these thoughts going through my head!  I ended up going to counselling and we managed to work some things out before madam turned 1.

Now I don't personally think everything was resolved and I am very good at bottling things up, madams skin carried on getting worse and we eventually learned she had eczema and it wasn't just a bit of dry skin, it was the type of eczema that you really had to work with and try and sort out. I wish I could say 10 years down the line that things had greatly improved but alas they haven't.

Sometimes as a mum I believe you are made to feel like you have to have everything perfect, children behaved, that eat their fruit and veg, that go to bed on time, who can share and play nice, who can do everything before they can go to school. It is a lot of pressure on parents! I know this is not the case and any normal mum will say that there are going to be trouble their little darlings are not angels all the time! And I know mine are not. I suppose it does rely on how bothered you are on the social side, of other people's opinions. Which I'm afraid has affected me and always has done and I hate to say it is not something I can just switch off!

It is the expectations that are landed onto parents, and some breeze through it, or rather "seem" to and others don't after all we have no idea what is going on behind closed doors.

As a family we have had to cope with depression and other health issues and the toll it takes can be extremely hard. Both of my children have health issues, the youngest currently under investigation for things and tbh I don't know what! as well as madams issues with her eczema, her allergies, hypermobility etc etc. As a mum personally I find it extremely difficult to keep going some days, when everything is going wrong, like madam is struggling to walk to school but you've been told to get her in no matter how long it takes. That you are constantly on the look out for the foods which could essential kill her, the struggles of the fatigue hit 5 yr old. .. It is very emotionally draining!

I have had 2 bouts of postnatal depression, treated differently, and have since been through counselling again but that was due in person to all the health needs the children have at the moment and feeling I suppose inadequate as a parent to deal with it all.  I know some think I handle things really well, that all the kids appointments etc are just water off a ducks back. Shock horror though, all the apps do get to me ! Some nights I am up and down stairs several times, seeing to crying upset, in pain children. Every night I am with either of the children, I never get a full nights sleep... ie more then a couple of hours without being disturbed. This is why some days I get home from the school run and i just sit.. and do nothing yes.. that's right nothing, I veg.. because when the kids are home I don't get a rest or a break. my break is during the day, though if anything is needed or any what not  I do do things.

Not much can be done about this, We see drs, and we go along best we can. As it's said we will deal with what comes and know we can because we have already been through so much as a family.

Tips to dealing with it all? Not sure I have many, I like my coffee, need my coffee if I feel like I can handle being out I go for a walk, Talk to friends if they are there to listen, which I know with health issues sometimes it feels like you are going on about the same things all the time. ( and I think as a friend if you are on the receiving end of the rants just offer the coffee/ tea and it will be ok! ) You have to talk, don't bottle it up, don't keep it all in because thats when you start dwelling and start stewing on all the ideas and the bad thoughts. It won't get better that way!!

Find the things that take your interest, hobbies etc and make time for them. Talk to a health professional if you feel that dark thoughts, or disturbing thoughts or if something just isn't right. Seek out support groups, they are there trust me!

Talk. As hard as it is talk. As someone who bottles or has been known to bottle because  I fear what people will say or that I bore people. Some.. I am certain I have lost because they have no idea how to respond or even chat to me any more as we have nothing in common any more. I am a mum of children, children who do have issues and need extra care . sometimes my "identity" has gone because I'm not Rachelle, I'm x's mum.

Sometimes you have to take your place back make sure you have some "you" time. It is important because if you are not in the right state of mind you are not going to be able to fully help your children.


Thank you for taking the time to read and put up with this entry today, It has helped me get some thoughts out.. things that can be quite close guarded. I am not afraid to say I suffer with depression or depressive bouts, it is understandable for someone in my shoes. But it is ok for anyone to suffer! don't be afraid. xx


( Links! as promised! Please take a look x )

https://www.facebook.com/emmascounsellinghaven/

https://plusguidance.com/emmashaven

Refreshing change

It has been a while since I can honestly say that we have had a good mostly stress free break away from home! Going back to family is stressful, not really the seeing family part, though trying to make equal time for all is really very hard and sure we haven't quite got it right yet!  But everything else that it involves,

I hate the stress of leaving home, the is the house going to be ok, ( ie will someone break in), have we got everything we need? like medication? enough clothes, enough money! the right toys, have we got things incase mr throws up in the car, and after he's done that a few times we now have a bowl, towel bag and change of clothes to hand!  purse, wallet, phone, chargers! things for the kids to do on the long trip.  I know its prob the stresses most people have to be fair just add in a few extra meds and complications for good measure!

The car trip itself can be daunting, why? well its a bloody long trip, 5 hours in the car with a stop and without traffic is considered a good run! Though this time it was a good trip both ways! minimum congestion and which considering we travelled the Thursday before Easter was really good and two stops  was a 6 hour drive, stress free! Our way back started in Yorkshire but was a similar time frame if not better,  two stops was less then 6 hours! Never thought a 6 hour car journey would be good lol

However the kids are very used to these long trips now which makes going for slightly longer short trips more enjoyable, and our trip to France doable! it gives me and hubby chance to just chat about anything which sometimes isn't possible at the end of the day when we are tired.We get to have family sing alongs in the car to Bon Jovi  and other songs, talk about the topics on the radio or just things in general and so it is worth it.

Our time away with family was lovely, its hard with shift patterns but we did get to spend some time with all, doing our own little things and letting the kids have time with family is so important though just as upsetting when the day is over. ( nearly 3 years on and its just as hard as the day we left! )

Would like that lottery win now, please ;)

We took ourselves off for two days after seeing family and went to say in Doncaster, ( well near) so we could take little man to the Train museum at York. who they loved it, They really got involved with everything and all the trains.

 Happy boy with the Mallard aka blue Spencer lol

 Looking under a train! 

 It's the Rocket!! 

 Some shady looking characters ( and omg look how tall they are!) 

The day before we went to Eureka in Halifax, which was a bit daunting in itself, as Halifax is where my father lives, and I didn't want to run into him, for alot of reasons! but  glad he wouldn't be anywhere near Eureka that day! ( and thank goodness it was Easter Sunday so it was quiet in town not like we went in!!)

We went to Eureka very last minute like 10 minutes before the turn off we decided to go, as we wanted to go to a National trust sight but it was raining and icky and we thought well hubby thought of it, it is a child museum one aimed for them in mind. It was fantastic! they loved it and got stuck into everything, again never seen them so happy in a museum playing!  <3 Yes both days were long and sore but we got to do things they liked and wanted to do so we could cope with the pain at the end of the day.

 Bobby went for a check up at the Dentist! 

 Dentist Madam!

Mr having a checkup (and check out my's elbow!! )

It's been a great few days and we have some of the Easter holidays left to do some things at home,  madam has a friend coming to stay which she is excited over.  Whats in store coming up? well its not long before May half term! Madam has a brownie day camp coming up ( and a stay over camp in June!!)  We have a gastro app coming up to discuss madam, and hopefully any day soon we will have a paediatrician app for mr coming through.  I am taking bets it will be on the same day as madams like last time with the hearing app and the pead app then!    There has been alot of aggravation with mr's app like taking 5 weeks to decide what to do with it to then tell us that he needed to see a gp but thank goodness two weeks before we actually did see a gp and he referred so will now be getting an app to discuss mr and all his quirks. ( Tremor, heat intolerance and hypermobilty!)  

Busy times ahead! but i am hoping with a more positive attitude i can take it as it comes! ( she says till she stresses out ;) ) 

Just a little note as it has been said about doing a sort of book i have firstly made a facebook page for health trials and the blog to try and keep my own page a little more health free! Link underneath! 

New fb page for the blog and health issues!

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!

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.