Over coming the gremlins (and fun at forest school!)

It has been a frustrating time away from my beloved macbook typing my blog and other writing projects I have on the go! As hard as I try I cannot seem to fix this problem of the cursor jumping all over the place! After much googling and reading it seems that it is indeed a common problem with macs and it requires that you reset the laptop in various ways! Not easy for a techno dunce like myself!

Firstly I tried the 'easy' solution but it didn't seem to work, although, touch wood so far into this post I have been fortunate that all is going to plan so perhaps it has worked after all!

The other solutions will require that I write all the instructions down as I can't follow the instructions and reset the laptop! Naturally I have backed up all my work just encase! It says files shouldn't be affected but alas this is me we are talking about and if someone is going to loose all their work it will be me!

Let's start on today and work our way back shall we? Today has been a wonderful day, my pain was horrendous this morning but I listened to my body and did as it asked. I rested. The sky was over cast so I wasn't too overwhelmed with a need to get out into the garden to potter around so instead I set up camp on the sofa and tried to fix my laptop whilst watching old episodes of friends!

We had a family SEAL coffee catch up this afternoon which I always look forward too! You may remember back in January I started a course up at my daughters school, we would go for two hours on a friday afternoon the first hour we would learn about how the children were being taught socially and emotionally and how we could implement it at home and in the second hour the children would join us and we would do an activity with them.

We were a group of 12 (it was open to all parents with children starting in reception but we were the ones that took it up. It's actually a good thing because we were told it works better in small groups and I honestly think it did. We all got to know each other) and now the course has finished we still meet in the staff room once a month when we can

.............Cue another mass delete and grumpily walking away from the mac!.............

                                              

It's monday evening now and I am suitably calm enough to try again! Ha! Honestly, this blasted machine is playing with me! It's such a shame because it really has well and truly sucked the enjoyment out of writing over the past 3 weeks! I wish I knew what had started it but alas....

I had a cracking weekend! There was a special forest school at Saturdads this time (it's fortnightly) but as Tony was working I asked my Dad if he could take Amelia-Rose and he did! This time of year my Dad normally has so many weddings (him being a vicar 'n all) so it was a nice surprise that he could.

Well, let me tell you, Amelia-Rose came home absolutely BUZZING! They'd cooked bacon and toast on the bonfire, whittled a pair of tongs out of a thick stick and 'caught an (imaginary) pig in their pig catcher' (how very Lord of the flies!)


They were all having such fun the session actually over ran by an hour! I was pumped by her sheer enthusiasm when she got home, we are (her and I) are very outdoorsy, it's obviously gotten harder since I became disabled and I can't help but feel that she misses out on this wonderful world of adventure that is the great outdoors but I do my best.

I want to show her woods and wide open spaces but they aren't exactly wheelchair friendly so we make the most of our garden and visit the meadow just down from our house. Living so close to the sea she of course experiences a whole other kind of 'outdoors' to the one I grew up with (being a country bumkin) but is doesn't make it any less magical!

Forest school was everything I hoped it would be for her, it was like she had caught the bug and asked if we could sleep outside that night!! I was informed we had to find something to make a net to catch a pig and we would cook it over a campfire for tea!

The hilarious thing is that 90% of the time Amelia-Rose is a vegetarian! Recently she's been leaning more to full on commitment into the world of vegetarianism (I being a vegan/vegetarian and Tony being a meat, meat, meat and veg kind of bloke she sees both sides) I was tickled by this sudden desire to hunt down a pig for her dinner!

Once she had refuelled after her exciting morning I took a deep breath and got on my mobility scooter to venture out alone for the first time in three months! On the account that the two times I have been taken into hospital for my bowels has been unplanned and in the back of an ambulance my confidence has been somewhat knocked. I haven't trusted my body but with Tony back at work I need to get back out there (literally!) At three weeks post op for my hip surgery I want to regain some kind of normality and that means going out alone with Amelia-Rose.

We headed for the hardware shop for string, I know it's not exactly foraging but it's all I had!

Forget 'kid in a candy store' this was 'Amelia-Rose in a hardware store' we went in for a string and left with a child's fishing net, string a plenty, bamboo canes (always handy for the garden afterwards!) and matches! Next we headed for the local butchers! Girls go a hunting! Ha!

We also went into a pop up shop in town and got glittery tattoos, not so lord of the flies but hey, give a gal a break!

Once home Amelia-Rose took to making her pig catcher. It turns out a pig catcher is string of many colours tied to a garden swing! Fabulous use of materials to hand!

I was interested by the conversation that followed; 'Mummy, I hope I catch a big pig for tea!' "Oooo I bet!" 'Actually Mumma I hope I catch a baby pig that I can keep for a pet, I wouldn't want to kill a baby pig' "Ok, but what about the big pig, that might be the baby pigs mummy, how would you feel if someone caught me in a net and ate me?' "Gosh mummy, that's a very good point! I don't think I will kill that big pig after all!'

Amelia-Rose kept talking about sleeping outside which really got me thinking, I had always wanted to take her camping and felt very cheated by my illness that I had been unable to do so. What if...what if I went and got a two man tent and we slept in the garden? What if, I asked Tony to buy a throw away BBQ and we really did cook dinner outside?

By the time Tony did get home my mind was made up! I was 20 minutes to get to the shops and I just managed it!

This is how you dress for a campfire
apparently!

By the time I got home the little girl from next door had come over and I must admit I was a little disappointed, I had so wanted to return to the wonderful time we had been having but it wasn't all bad. If anything it forced me into pacing myself so I was able to have a rest.

The tent went up and the girls had a wonderful time playing in it. We lit the BBQ and cooked Amelia-Rose's sausages and toast which she ate inside the tent!


At bedtime we told each other stories and breathed in the fresh night air. It was perfect.
As my pain is so bad and my bones are so creaky I totally cheated and slept on an air bed but I was still outside sleeping in a tent with my beautiful daughter. Something I thought I would never be able to do. Talk about triumph.

                                  We at least really did 'forage' for pudding!

Recovering from surgery with Hypermobility Syndrome

It's a bright beautiful sunny Sunday and I am stuck on the bed. I should start by writing that it has been a good week. I was so relieved to be home and thanks to the pain team organising me a lay flat ambulance the journey wasn't too awful.

On Tuesday we decided to give Amelia-Rose a day off school. At the moment we're finding she is a little emotionally fragile (I will write a separate blog entry about this tomorrow) so, as we missed most of half term as we were in hospital we decided to give her the day off Tuesday to settle back into being at home. We also felt that it was very important that she also saw that I was settled in and was ok.

Wednesday we got it really wrong in the morning and I really struggled. Understandably Tony decided not  to not wake me up until I was needed, this is the point that it is time for Amelia-Rose to get dressed and have her hair done. Of course though this meant that I was taking my pain medication as I was needed to be physical and it hadn't had chance to kick in. In fact even when they actually left for school my pain medication still hadn't set in. As you can imagine it wasn't easy.  I was in far too much pain.

The rest of the week was nice, I had a lot of visitors and we learned that Tony does have another week off work before he has to go back. We were nervous it was this monday.



.................................................................................................................................................................

There are gremlins in my laptop!! It's Tuesday now and I have been trying since Sunday to finish this post but the curser jumps all over the place, I'll be happily writing and mid word it will jump back and jumble all the words around then suddenly highlight everything and delete it all!

I've tried doing a cleanup but it says that google chrome is running even if it isn't! I don't know what is happening but for a writer is is infuriating! So where was I? Last week was really very positive, this week thought he fatigue has well and truly set in and I am exhausted. Actually I am beyond exhausted. I am really struggling.

Yesterday was a toughie. A (nother!) mix up with my prescription meant that I was left from 9am until almost 6pm with only paracetamol as I had run out of my pain medication that I get on monthly prescription. Good Lord it was painful. Every pain I have in my body I felt. My lovely husband kept telling me how proud he was of me and although I had a wonderful visit with my mum and my nephew I can't help but feel like since Friday I am missing days.

I find it very difficult when I feel like I miss days that I can't ever get back.

In terms of recovery I am doing very well. My incisions are almost completely healed although my leg still burns and stings like I don't know what! I took the bandage off over the weekend because one of the stitches was actually poking out through the bandage and I thought maybe that was what was causing the stinging, perhaps it was pulling it. I was wrong.

It's tricky recovering from surgery with hypermobility syndrome because you still gave all your normal symptoms to contend with!

My gastro problems are much the same. I still can't eat without being sick and I am at the moment event unable to keep down my meal replacement shakes. I am thinking about diluting them but at the moment with the extra pain in my hip I can't bare the thought of being sick.

I had my appointment with my counsellor today and she said she is really concerned that my gp isn't taking this more seriously. I am waiting to see a gastroenterologist who has a special interest in hypermobility syndrome but in the mean time what? I am getting literally no nourishment, I am just so exhausted.

I just need something, anything in the meantime to keep me going and the doctor is treating me like this is my choice. Like it's a decision I've made not to eat.

I am thinking about doing a course, as I continue to recover from the op and am now use to the various side effects of the new medications from the bowel meds I really want to branch out and try something a bit new. I want to do a writing or art course. It would be nice to have something every week to look forward to. I need to get a new routine going I think! Something that will help combat the exhaustion, give me something to focus of and try to work through the fatigue.  It would be really nice to have some structure back in my life.

I look forward to starting something new, whatever that may be!

Before the gremlins got into my laptop I was doing a lot of writing, I have started a novel which I am really excited about. I normally do most of my writing over night but I was put on these sleeping tablets because when I relax I get these muscle spasms that cause me to jerk, normally they are nothing more then annoying but when I was in hospital each sporadic leg kick was agony! They put me on these sleeping tablets to knock me out before the jerking started and boy do they knock me out! Clean out!

I am getting the best sleep I have had for 10 years YAY but I have lose my writing time BOO.

I'm sure I will find a new time!

I'm sorry this post is a bit all over the place, honestly, it's just this damn fatigue. I promise I will write more efficiently as soon as I can.


Hey p.s small victory I managed to cook tea for Tony and Amelia-Rose today! :-D

It's my birthday tomorrow, I will try to write a reflective post over the past 12 months if my brain fog lifts and the sun comes in! I have been promising myself after my birthday I am going to treat myself to something wonderful and I have one of two things in mind.... ;-)

The hip surgery that came and went...

Firstly I want to say an ENORMOUS thank you for the out pouring of love I have received over the past 5 days, you will never know how much strength I draw from all of your love and kind words!! 

Being operated on when you have Hypermobility syndrome is never quite as straight forward as your average joe, there's just many factors of our bendy bodies that have some sort of effect such as, we're not so great with general anaesthetics, those that have Hypermobility syndrome tend to have adverse reactions to medications and of course it's difficult to control our pain because we don't respond so well to pain medication. 

Tony and I travelled to London on the train on Wednesday, I had only had three hours sleep and was fortunate enough to sleep most of the way. Wednesday morning before we left for the train was stressful, neither of us were on top form to be honest, we were tired and cranky, nervous and despite trying to get everything done the day before there was still much to do. 

I would love to draw you a picture of rosey calmness but it simply wasn't and if you've been reading this blog for a while you will know it is all about honesty! 

I was flustered and trying hard to be calm for Amelia-Rose but she picked up on my anxiety. I walked into the lounge at one point and my little heart broke! Amelia-Rose was sat on the lounge floor with her head on the sofa sobbing. That was it then, everything else ceased to matter, the only thing I HAD to do was sit with my baby and cuddle her. "I don't want you to go today, I want to come with you" she said through little breathless hiccups. "we've spoken about this sweetheart, mummy and daddy are going tonight to celebrate our anniversary as we missed it in October" I fibbed. "and you're going to have the best sleep over ever with nonny!!" 

I had sent Tony into town the day before with a 'girlie' shopping list and put together a 'sleepover kit' for Amelia-Rose to share with Mum. They had nail polish, face masks, pop corn and most importantly freedom marshmallows!! I cannot tell you how good these marshmallows are! They taste like those 10p flumps marshmallow 'sticks' but not only are they vegetarian they are vegan!! They taste sooooooooooooo good!'

I also told Amelia-Rose what a wonderful wonderful time she would have in London with Mum and said I was going to ask my doctor if she could have special permission to see me the next day when I was in hospital. 

So back to the day we left, we got on the train and spoke a bit then I crashed! Zzz zzz zzz! ;-)

At South Hampton mr and mrs posh got on the train, he must have been at least 6"8 with thick curly brown hair dressed from head to foot in Ralph Lauren! It did make Tony and I chuckle as they spoke about buying bricks for their garden renovation "Well that's easily £20,000 worth you're talking about there darling" he said "which brings us up to £100,000 and we've not started on the house in France yet!" Oh how the other half live! Haha! 

We got to the hotel and well it all just went down hill from there really! We paid £400 to stay in this hotel,(spare change to Mr and Mrs £20,000 on bricks! Haha! the good news is that we could see the hospital out the bedroom window which was a huge perk! We couldn't get closer if we tried!

 The bad news though? Well, where to start! The wheelchair access lift up into the hotel (as there are steps) was broken, the wet room had no chair in so I couldn't shower, the electrics in the room were broken and the restaurant (one of the reasons we chose the hotel) was shut for the week!! I needed this like a hole in the head!! 

We got moved to a twin room on the first floor but it was too small for me to use my wheelchair in and it meant the day before my operation I couldn't have a shower or soak. Niiiice! ;-) fortunately I did have a bath the day before we left! 

I pointed out to booking.com ALL the faults with hotel and they still haven't offered us a refund or any kind of financial compensation. Honestly, I will never use them again. It's been a nightmare since the word go!

When I booked the room they (booking.com) then went on to book 9, yes 9 other rooms in my name without my knowledge!! And when the hotel rung to confront me about it they said they wouldn't cancel any of the rooms unless booking.com did it because I hadn't paid the extra money for a refundable room!! I hadn't booked the rooms in the first place!! Urgh!! 

I will keep you up to date with this and if we get our much deserved refund! If not shall we bombard their Facebook page with demands for a refund?! 

Anyway Tony and I went out for Dinner and we popped into the Quaker meeting hall in Euston which is absolutely beautiful, I hope to spend some more time there in the summer and relax in the beautiful garden. I bought two books and a Bible. I always bring my Bible into hospital but I forgot it, when I found one in the sale basket for £1 I couldn't not get it! Oh I also bought a lovely book for Amelia-Rose about 'Eco loving' I am going to review it for you all at a later date, I think it's a five star book I really do! 

I ended up in the Quakers because I am in a funny place with my faith, I don't not believe in God, in that way my faith is fully in tact but I have never ever felt so far away from 'him'. It's like I have forgotten how to talk to 'him'. I try to pray and all I can muster is 'I don't know what to say to you right now' I am contemplating going to the Quaker meetings at home just to be quiet in the presence of other Christians. I bought "A light that is shining" and "Bringing the invisible into the light - Some Quaker feminists speak of their experience" 

I am being abundantly blessed in so many ways I just can't quite find the words, I just can't seem to pray about what is on my heart. When you have the outlook on life that I do it is so difficult to admitt you're suffering. 

When we got back to the hotel I prayed with my friend Michelle on the phone (or rather she prayed for me as she always so graciously does) and then I settled to sleep. 

The next morning we made off for the hospital about 6.45 and registered with the surgical reception. I met with the registrar, nurse and Anaesthenatist and we were told I could go 'home' and come back about 1.30. 

We returned as were told to do and met with another nurse, I was told my surgery would take place at about 4/5 so we spent the next few hours in the surgical reception.

Amelia-Rose and mum arrived and Amelia-Rose did lots of drawing for the receptionists which was just too sweet for words!! 

I was taken down with Tony to another waiting room at 4.50pm, we thought this was 'it' so left it that Tony would walk down with me the go back up to mum and Amelia-Rose to return to the hotel. 

By 5.20 we knew Tony had to go and I had to sit there alone. We said our good byes and I felt very very scared all of a sudden. In reflection it probably is right that he left then, I think saying goodbye and being wheeled into the anaesthetic room would have been too much! 

I had a nice chat with the anaesthenatist assistant then she (the lady I had met earlier) came into the room, I was given something to 'help you relax' and that's it, the next thing I remember is waking up in recovery, someone calling my name gently and rubbing me on the arm. I was in agony and beside myself, god the pain was too much. I couldn't connect with the nurses, the pain was too big, it was all consuming. Why did my left hip hurt as much as my right? What the hell was going on? I could hear the voice of the Anaesthenatist, my nurse had called her over. I reached out for her and said "I don't cry because I am in pain" "why does my left hurt so much" "Move your leg Chloe" the instruction came "Chloe, I need you to move your left leg" but I couldn't, it hurt too much, it felt disconnected. Oh crap. Panic set in now, why couldn't I move my leg? The nurse pulled back the covers and suddenly there was 2 or 3 other nurses around the bed. My hip was bulging. With assistance I managed to get it back in but the pain was still horrendous. "That will have been out since we straightened your feet up at the beginning of your operation"

I needed to be transferred onto a ward bed and out of no where a very stern looking sister appeared at the bottom of my bed. As with most Hypermobility syndrome sufferers my feet naturally loll outwards when I am 'relaxed' it  may not look comfortable but you have to trust me on this one! This sister roughly grabbed my foot and yanked it straight!!! I SCREAMED and hollered "GET OFF MY FOOT!!" much to the surprise of everyone around me! "I didn't touch your foot" she lied and through my sobs I, for once in my medical treatment life said "yes you did!! You just pulled it straight, don't touch me" she went to lie again that she hadn't touched me and the Anaesthenatist sternly shot her a look and said "let's leave it there shall we?" Even in my upset state I wanted to high five her! 

For the life of me I could not get out above the pain. From recovery I was taken down onto the ward where en route we bumped into a very flustered looking Tony who had left Amelia-Rose with my mum and come to investigate because he hadn't heard anything and it was over four hours since he had last seen me. 

I remember through the pain being thankful that my recovery nurse was very kind and that I was finally reunited with my love. My strength. My soul mate. 

On the ward I was introduced to my nurse and given a hot chocolate and reminded to push my button for my pain relief whenever I needed to.

Tony had to leave again all too soon and it was a rough night. The pain was everything I had feared and more.

A few times in the night I tried to explain the complexity of my condition to the nurse but the language barrier was too big. 

In the morning at hand over the nurse said with a wave of her hand I had "some manipulative genetic disease that meant I couldn't eat" I asked if I could explain it but was told no!

I was beyond struggling with the pain, my consultant came on to the ward and explained I had had extensive surgery to repair the scar tissue etc from the past surgery (oh the irony!) I also had to have the soft tissue cut into and and a clean up in the hip. 

I don't feel like I can openly write about what happened next but what I will say is that I felt very let down, hurt, misled and trust has been broken. 

I had a full on panic attack then, something that hasn't happened for a very long time. I felt like it was Reading all over again. I was quite honestly petrified and ready to discharge myself. 

Due to the stretchiness of my skin cannula's seem prone to falling out! My cannula was falling out so the nurse and I did the best job we could patching it up and keeping it in but I think due to the aggressiveness of my panic attack I had an almighty nose bleed, it was covering me and the bed so instinctually I put my right hand up to my nose and the cannula fell out!! Now because when I bleed I bleed ALOT there was blood pouring out my nose and pumping out my hand. Poor old tony walked into my curtained area to find me sobbing, hyperventilating covered in blood and alone. As calm as he ever is called for a nurse and I was given a bowl and some tissue to stop the bleeding. 

I was able to halfish explain to Tony about my on going panic attack the pain and disastrous meeting with my consultant. 

I was now less them 18 hours post op with NO pain relief. As I had been on the pump no one knew if I was allowed to have my normal pain relief so I was left for over an hour with no pain relief. In the end the sister made an executive decision to give me my normal pain relief so I was at least now having my normal pain relief although as I am sure you can imagine made no difference!

The nurses called the pain nurse who was the nicest man, he and another member of the pain team decided to give me hourly oxynorm but that's what I have on bad days let alone post surgical days,I was too consumed by pain to express this!  

I just kept saying to him I don't normally cry because of the pain and I have so many other ways to cope but I cannot get above this pain. 

In the end I was given 20mls hourly which settled everything down. 

I was still VERY tearful all day, it was not an easy day. 

I want to write about how lovely the nurses have been because they really have been just wonderful.  Two nurses asked me to teach them all about Hypermobility syndrome as neither had ever heard of it and at the end said "Ok, now how do we help you?" In all my experiences with the nhs I can honestly say that was the best ever. It was so true and real, the compassion was apparent. 

Amelia-Rose and mum came to visit me later and gushed about meeting the imagination movers and seeing them in concert, it just blew me away!!!! The imagination movers are a VERY special thing for Amelia-Rose, gosh we have danced and sung and have so many special memories associated to their music! I wrote to them a few weeks before the show and told them a little about Amelia-Rose and her life and Mum said they really looked out for her and during the show she got a high five from every one that came down off the stage! 

I can't wait to post the pictures for you! It's so refreshing to have age appropriate music for Amelia-Rose that isn't annoying to the adult ear! I just love their message, they are such fabulous role models for her! 

We purposely chose this operation date so it coincided with the imagination movers, although it meant I couldn't share the special time with Amelia-Rose (which sucks!) I wanted this time in London to be about something that wasn't 'mummy being in hospital' 

I had an amazing chat with the pain nurse the other day, he drew back the curtain and said "Oh my gosh you're like a different woman!" We then spoke for a long time about pain and chronic pain and what had happened before I saw him that day that had triggered the panic attack (of which is was shocked!) and he said it was so inspiring to meet a patient that had such a great outlook on pain management. It was very sweet of him! 

That sorts of brings us to now really, I am booked to go home Monday at 11am via  ambulance (thank you lovely pain nurse for fixing that one for me!) and it's the recovery that lays ahead. 

I am going to have to be very kind to myself and very patient with myself and take everyday as it comes. 

The big goal is going to be picking Amelia-Rose up from school as soon as possible! 

We only have a week left before Tony (aggggh) HAS to go back to work, he only got paid his half wage this month (which is just what the hotel cost us) because he's been off for two months.

 I shouldn't have, why WHY did I! But I sat and figured out what this has cost us, just this one trip. Let's just say it's over £1000 and I am handing that over to God . I just have to believe it has this one covered! 

It's my birthday in 10 days time and I've been thinking it would be nice to have a little tea party of sorts! We'll see! 

I have also decided when all this is over I have been SO brave (because it is brave isn't it?!) I deserve the zebra crutches I have lusted after for 9 months from cool crutches.co.uk where I got my leopard print ones from. Can you imagine  how cool that would be?! To decide which crutches to use like you would shoes!! I reckon I have earned a new pair of crutches, don't you think? 

I thought I would leave you with some pictures from London. 

           My hospital view !

God bless people x x x 

Getting ready for London _- Hip surgery with Hypermobility syndrome

What a week! 

My insomnia has well and truly kicked in this week. I've had two days where I have been awake for 41 hours one day and 46 hours the other! I'm not complaining, I always reach a point with my insomnia that I know I am not going to sleep and a different kind of energy sets in and I feel productive and peaceful. I've made a lot of progress with my other writing projects that I am working on. It has meant though that I haven't had the chance to write my blog. 

It's 12.15am now and I beginning to wonder if tonight will be another night of no sleep but I am thinking positively and visualising myself settling down to sleep because we have a really busy day tomorrow. 

So, body update! My back has begun to fight for first place in the 'what hurts most' awards! I haven't pulled it or anything it's just really aching and lord help me if I bend over! 

My friend came over for dinner Sunday and I cooked a roast with homemade quiche, again I'm not entirely sure how I did it but as I leant over to check the spuds my back was throbbing! 

It's definitely not nerve pain. I have nerve pain that runs down the back of my leg into my foot and this is different some how...

I had to abandon this entry last night as Amelia-Rose was very restless on and off for about an hour then woke up utterly petrified because she had had a bad dream poor lamb! She was so upset that she came into out bed and I read her a story because she was too scared to go back to sleep :-(  I said halfway through the second story "Gosh mummy is having trouble keeping her eyes open and Tony very kindly took over story reading duties! I was asleep before the end of the story which is good because it was gone 3am and normally 3am is my cut off for sleep! 

Speaking of which it is now 2.53am and I am yet to sleep! We survived the busy day but my back and shoulders are in so much pain I can't imagine sleep will arrive shortly! 

Tonight though I want to write about something that has grown very close to my heart in the pass few weeks. 

It is an online support group exclusively for women with HMS, I am also in a group that is open to everyone with HMS but is fantastic too but this particular group is something else! 

I am abundantly blessed with a wonderful family and a great circle of friends yet even so having a chronic illness is incredibly lonely.

 Sometimes I feel annoyed at myself because when people ask me how I am I will reply "I'm good" or "Yeah ok", it has become a question that I find difficult to answer! Do I answer in terms of how I am emotionally and mentally in which case the answer normally is "I'm good Ta" or do I answer in terms of how I am physically doing? In which case the answer would be "Blooming awful! My hips have dislocated 6 times, my groin feels like it is constantly on fire (and not in the 'woo o o your sex in on fire! Way!!) I have a terrible headache courtesy ironically of my pain medication and I haven't had a good nights sleep for months!" What do I say? 

This support group though, they just 'get it'. We support each other through the worst of times and rejoice in the best. We compare our bendy bits and have a giggle. 

It is a place where we can talk about the more intimate aspects of living with limbs that dislocate at the most inappropriate times, something I couldn't even do with my doctor!! 

I have learned SO much from these women and I enjoy being able to share my knowledge of life with HMS when it affects your bowel and digestive system. 

People can rant about a bad day and receive in excess of 70 comments, every single one wishing the person well or offering support with a sugeastion of how they cope with similar symtoms. No one judges anyone, their is true acceptance. If the same person who rants comes back the next day with news of a good day no one holds it against them and says "well obviously she can't have it that badly because she's fine today!" We all understand that is simply the nature of the disease.

Every day I must read 15+ comments of people saying how much they love the group! It is honestly such a supportive community and I adore being part it. I have finally found a place where I feel like I don't have to worry about how I phrase things or describe my pain because people just get it, they understand, they KNOW how it feels to be me! 

I am not sure exactly who set it up but I want to hug her and thank her for accepting my request to join, something I very nearly didnt do! 

I am SO proud of these women, they are all striving so hard to get the support they need to thrive at life as oppose to merely surviving! I am inspired daily by their determination to keep pushing for medical help, they're knocking on the doors until they open. No one is giving up! 

We deserve to live the best possible lives that we can and their stories are driving me forward to continue this blog and get more people reading it, to  aim for the moon and if I don't get there to play amongst the stars!! I feel this burning desire to raise awareness for HMS for all of the people out there that suffer not just me. 

I have found my happy place! :-D

P.s I now have new means of recording as I go so will be picking up my YouTube  video blogs about life with HMS where I stopped off very soon! I shall be filming my experience of going off for this operation and editing and uploading when I get home! Exciting! It's now 4.05am! Whoops!!  

Be blessed everyone. You, yes you are fabulous!!

P.p.s check out my new large meds bag I made myself!! Half cat in the hat half wizard of oz!! It is exactly the same as the P.E kit bag I made for Amelia-Rose when she started school just much bigger! My friend made me a beautiful zip med bag when I was in hospital last time which is awesome for taking out strips of meds and carrying them discreetly but this baby needed to be a big'in to fit whole boxes in! 

 

Sunshine and fun times.

I've been a bit quiet this past week and a half because I have been poorly and have felt so queasy I've not spent anytime on the laptop. I always miss updating my blog though when I can't do it! With the amount that I am sick at the minute it is difficult to gage but I think I had a sickness bug last week, it was a whole new level of sickness. That 'virus' sick you know?



Although I haven't been online my blog has very much been on my mind. I have been thinking of various ways I can improve  and promote it, if anyone has any ideas I would love to hear them. I am considering mixing up the posts a bit. Sticking to the original plan of accounting what life is like when you have Hypermobility Syndrome but also producing structured informative posts on various physical aspects of Hypermobility syndrome. For instance, I would write a post about  a specific symptom of hypermobility syndrome such as why joints sub lux and dislocate and the science behind it. Alongside the things you can do to help get the right treatment that you need.

 For my website www.chloeevanslippett.co.uk (shameless plug!) I am working on two information sheets for schools after a few conversations with parents who have children with hypermobility syndrome. I want to produce one with information on how to support a child who has the disease themselves and one on how to support a child who has a parent with the disease. It isn't about receiving special treatment but about being put on the same level playing field with everyone else and creating a strong home school tie. My daughter's school is Absolutely Amazing! Yes two capitals A's. It really is THAT good! When I was in hospital recently I had a wonderful letter of support and get well wishes from the head teacher and her classroom teacher basically, amongst many other wonderfully warm wishes telling me not to worry at all about Amelia-Rose whilst I was in hospital because they were taking good care of her. I have full faith in the school and wouldn't doubt for a second that they wouldn't but it was so sweet that they took the time to write. It would be superb if ALL families living with the disease in one way or another could receive the same support.

My grandparents were down last week and despite the sickness I felt like I got to make the most of seeing them. We had the most beautiful weather too which brightens everybody's step! I LOVE living by the seaside when the weather it good. It makes me feel like we live 'on holiday'. It is pretty awesome.

Amelia-Rose had a friend over Friday night for tea which was wonderful. It's the first time she's had a friend over (one to one, we had the Autumn party back in October, see previous posts) who she didn't go to pre-school with so it sort of felt like a big moment! They have become friends over their shared love of Doctor Who (which she doesn't get from me AT ALL... no really. Ok, I'm lying. I'm a D.W fanatic! Haha!) so I made them Darlek and Cyberman pizza! They looked awesome! If I do say so myself! I have the most amazing pizza dough recipe at the minute, I must remember to update my Bendy Baker blog more often. It is definitely worth trying for anyone who likes a thick pizza crust! Ok, so I can't seem to rotate the photo but I promise you if you cock your head to the right it looks like a Darlek!

I really pushed myself to join in with Tony and Amelia-Rose's sunshine adventures this week and am proud of myself for that.

 I tagged along to a trip to the park Saturday. It was a treat for Amelia-Rose who had been exceptionally well behaved that day (she's always a good girl, like any child she has her moments but there were extenuating circumstances earlier that day and she was absolutely fantastic.)

I was in agony because my back had gone into spasm and was planning to have a steaming hot epsom salt bath whilst they went out but Amelia-Rose asked if I would go and with my operation just around the corner I am trying to make the most of everyday with her knowing it may be a few weeks before I am up and out again. We had a fabulous time at the park. Tony got stuck in as he always does and I was making up adventures for Amelia-Rose once Tony was worn out from the climbs and the swinging and the doing the                                          loop dee loop on the bars!


 I would give her instructions like 'Quick climb over crocodile bridge, hurry the crocodiles are waking up! You're in the swamp now so swim as fast as you can to the mountain and climb up it! Crawl through tickle tunnel but watch out for the tickle monkeys! Down the ski slope and swim back to the aeroplane! (the swing!) It went on and on and she had a fabulous time! It was so engaging she got totally in to it that she started making up her own names for the various things with made up creatures etc. It was such good fun.

I had a rough night Saturday night and had decided that I wasn't going to go to church but was disappointed because I haven't seen anyone since I went into hospital the first time and like I said above may not be able to go to church for a while so again I pushed myself to go and again I am glad I did. Although the physical cost is always so great I really enjoyed seeing Amelia-Rose having a wonderful time and it was nice to see everyone.

I am trying to build memories for the next few weeks ahead. I don't want to look back when I am recovered from my op and think "blimey, I haven't had a life since Easter!"

We then all went my Mum and Dads for lunch for lunch with my grandparents before they went home. I laid out on the sun bed enjoying the sun and throwing balls made out for tin foil for the children who just had a blast! Tony joined in as he always does although he was more determined to get it in the wooden wendy house then anything else! Haha! Which, to give him his glory he did! It was a VERY impressive shot because the garden is HUGE and we were no where near the wendy house! Not only did he get it in he got it in through the tiny little door!

So, that was the weekend. All in all a good one. I managed to have a lovely time with my family despite the pain which is a victory to be celebrated all in                                          itself!

Monday was stairlift day! YAHOOOOOO!! I was so excited! Honestly! It felt like Christmas! Unfortunately the day got off to a terrible start because Amelia-Rose screamed when we dropped her off at school. She got herself so worked up, it was real panic. Gosh it broke my heart. We got out onto the playground and I started to cry myself! It's so hard because I know once we leave she is fine and settles quickly and loves it but it's like she is terrified something is going to happen to me whilst she is at school!

Fortunately my Dad took the assembly at school that day so when I was on the phone to my mum he told her to say to me she went bright red when she realised it was Granddad taking the assembly! Ha!

The stairlift went in with no problems and I loooooooooove it!

I am going to post this up now because it's taken me all week on and off to write! I started Monday and it is now Friday morning! I haven't slept since wednesday night and am off shopping with my Dad today to get some things I need for my operation next week. I have so much more I want to write but am going to get this post up now because I need to get Amelia-Rose ready for school.

x x x Blessings x x x

To whom is may concern

I have experienced some pretty awful hospital appointments in my time on the road to diagnosis, today's post though is prompted by reading an account of an appointment that another HMS sufferer experienced. It made me want to channel the emotions I have had after my own appointments into one letter 'To whom it may concern' by way of expressing what it is like to live part of your life in a doctor's office waiting to get diagnosed.

To whom it may concern,

Firstly I would thank you for seeing me today. I understand that with a growing population and a shrinking budget doctors and nurses within the NHS are put under an increasing amount of pressure to perform beyond their means. I cannot imagine the stress you find yourself under; targets, budgets, patients, you are being pulled in so many directions it must feel some days that you will spilt at the seams.

Early mornings and late nights top and tail long clinics, everyone wanting a piece of you. I sympathise and admire you're commitment to the healthcare sector.

I would like to tell you a little about my life now though, if I may. I wake most days in agony, sometimes the pain is so wide spread I cannot pinpoint it. There are days it is so large I think to myself "Can it really be this bad?" but of course I know it is. I can feel it. It makes me feel lonely in a way I never have before. It's not a physical loneliness. It is a loneliness shrouded with doubt and suspicion, one that means you never really want to give voice to the pain, if I have trouble believing it myself  how can I possibly expect anyone else to believe in it? By sharing it with you I have been incredibly brave.

Then there is the ever growing list of symptoms that I experience, so abstract that I wonder somedays if my body was just 'made wrong'. I see no link between them and yet there seems to be so many!

A day doesn't go by when I don't envy people who have their full health. It's difficult to look well and yet feel so unwell. Trapped with a healthy mind inside a broken body.

That's where you come in. My doctor. I don't expect you to have all the answers. I am aware a doctorate doesn't come with a magic wand and I don't resent you for that. What I ask is that we can be a team. I promise to bring specific thought through lists of symptoms, I won't bombard you, I will try to use our time together effectively. I know I am one of many and I don't expect to be treated like the only one. All I ask in return is that you see me as a person not a time slot, That you recognise how scared I am that I will never get to the bottom of this, that this is it. My life. I will share my honest thoughts with you about what it feels like to live with an undiagnosed or invisible disease if only you would ask.

If you feel like you cannot help me yourself then please refer me to somebody else, please don't dismiss me. To you I may seem like a mix up of several 1000 piece puzzles scattered on the floor but to a colleague I may be one complete 5000 piece puzzle of which they know how to piece together.  Please do not deny me the opportunity to meet 'that' doctor just because you do not understand how to piece me together yourself. Please don't let that lack of knowledge turn into the road block between me and the attention of a consultant whose speciality my disease is and if we don't get the consultant right the first time please don't give up on me. Please let us try again.

When you dismiss me and rush through our appointments, if you tell me that I am not feeling the way I think I am and that this is all in my head what you don't see after our appointment is my world fall apart. I trusted you, I came to you for help and you cast me out. I found a door and I was brave enough to knock, I even took a step in when the door was opened to me but you slammed it on me and now I feel more alone in this then ever.

I leave disheartened, deflated, exhausted, confused and desperate. I'm not telling you this because I am angry with you, I cannot believe that a person who chose to go into a profession where their key role would be to help people would want to hurt someone but I did leave today hurt and if you're the person I think you are then I think that would trouble you.

I am the one that wakes up everyday with this, that lives day in day out with it. Fundamentally you just have to be the person who believes in me. The way that I believe in you when I book an appointment with you. The rest they say...is history.

Yours faithfully.

I would write fatigue but I'm too tired!

Yesterday was HARD. For no other reason then I was exhausted. I cannot explain to you what fatigue feels like. So many people think that tiredness and fatigue are the same thing. Fatigue and tiredness are not in the same league. Hell, they're not even in the same universe!

I got up yesterday, took Amelia-Rose to school (because I remain determined that this will effect her in her least) and I so wanted to 'do'. I wasn't fussed what it was that I did 'do' but I needed to 'do' something. Every now and again (and fortunately it isn't very often) I get a flash thought. Maybe a prayer from my subconscious? 'Why give life if it can't live?'.

I wouldn't allow myself to go back to bed so I settled on the sofa. In my mind it was a victory! I rarely let myself submit to bed rest. What it does for my body isn't worth what it does to my mind!!

The good thing is that the 'what can I do with myself when I feel so physically awful for no reason' gape that was 9am-3pm meant that the moment Amelia-Rose got out of school I 100% made the most of her gloriousness! We had a fabulous night last night. The great thing is that if we sit on the bed listening to the Imagination Movers and drawing pictures she is happy for hours never questioning why we our sat on my bed! I also sat watching her on her swing earlier in the evening as I prepared dinner which was lovely.  

I know people are always desperate for rest and 'stopping' and I am quite often told how 'lucky' I am if I do actually have to spend the day on the bed (which like I said is very rarely as I won't allow it) but to be honest all that type of remark does is make me want to ask them if they talk so insensitively to everyone they know or if they just save that for me! Ha! I want to shake them and say "YOU ARE BLESSED." With business and activity! Soak it up! Enjoy it! Treasure it! Maybe you need to learn to pace but how blessed you are that you need to! The sun is shining you :-) 

Anyway let us leave yesterday! 

Today has been blooming awesome.  AN AWESOME PARENTING WIN! 

I am very much a get your hands dirty sort of parent. Glue, glitter, shaving foam, paint whatever. Get right in there, make the mud pies and build the sand castles. It isn't just about getting messy though, it's about getting stuck in no matter what the play. I have always been a hands on in play parent. We have flown to far away lands together and spent hours playing barbies. I guess I see myself as an active participant in Amelia-Rose's childhood in that way. I love it because whilst we play I know I am getting to teach her without her even realising she is being taught! 

Yesterday we spoke about building a space rocket today. I knew we had boxes in the shed and thought we could manage to make something out of them but then a wonderful thing happened! The drawer set Tony ordered (we are really trying to sort out the chaos in the house. We have never ever been messy but the cupboards etc are the most unorganised they have ever been! We have craft stuff living on the kitchen table since our fridge died and it's driving us both bonkers!) online arrived in a huge tall box! Perfect for a spaceship! I mean really, this type of box is destined to be a space rocket... what other purpose in life could it hold?!

We set to decorating the ship, I suggested paint but Amelia-Rose didn't want to wait for it to dry (fair enough! There were adventures to be had!) so we used pens. Once the ship was ready naturally she needed a space suit so I cracked out the tin foil and we had a ball wrapping her up designing her suit. Amelia-Rose is so drawn to my Bible and constantly asks if she can involve it in her games! Oddly! Today it was her alien translation book! Of course, I was the alien! 

This evening I went to see Devon Sproule with my sister and a close friend. It was so nice to be out! Honestly, the gig was amazing, she has the most incredible voice. It is one of those voices that just gets right deep into your soul. I got to have a chat with her after too which was nice. She seems genuinely lovely. I got frustrated because, as you do with music, my body wanted to move! First of all I went for the head nod but ended up with neck ache so I had to stop, then I tried to tap my foot but of course that was awful for my hip so I attempted a sort of rock but my back started aching! In the end I sat there and closed my eyes to absorb it instead. I became so aware of everyone else's feet. Almost everyone was tapping, it is so weird the things you focus in on! 

To top off an incredibly fabulous gig my friend put my hand on her tummy and I felt her baby kick! I promptly burst into tears but they were happy tears. It was a swell of emotion, for this little tiny life that is yet to come and meet the world. It was such an amazing moment! Like magic!! :-D