Thinking about living....

When I was 5 days old I almost died. No really. My mum went to check on me and I was lifeless and not breathing in my cot. It turns out she caught me in the early stages of SIDS (sudden infant death syndrome) For the next 6 months she had to wake me every 3 hours to prevent me falling into a deep sleep and to essentially I guess, check I was still alive.

When I was a teenager I plummeted into a very deep dark depression and developed an eating disorder to boot. Even now when I see the photos of myself standing at 5'11 and weighing just over 7 and a half stone I am still shocked. I really did never realise how physically sick I got.

I can't and won't lie. On more then one occasion the illness nearly killed me. I nearly gave up hope that I would ever have any future and contemplated taking my own life several times. Wow I've never told anyone that before. Many many years after my recovery I once found an old suicide letter I had written. I wrote two letters that night. One was a suicide note and the other was a letter telling my family I had run away. In the end. I ran away. That was the beginning of my healing though. I guess once you reach crisis point the only way really is up.

Then when I was diagnosed with Hypermobility Syndrome (Elhers Danlos) I had to wait 5 awful months before learning that I did not have the vascular form which can be life threatening. I didn't tell ANYONE that was a possibility. I didn't even tell Tony until the night before we were going to the appointment just what news we may hear the next day. I cried the two and a half hour ride to my grandparents house (we were getting on a train from their town) and had to give him an explanation for my turmoil!

I don't know why I have been challenged with so many 'near death' experiences. I can't say it makes me contemplate my own mortality more then anyone else does. I never even think about it day to day to be honest but something someone said to me today really made me wonder.

Over the weekend the amazing community I live in all rallied together to put on an amazing musical fundraiser to help Tony and I manage with the many many extra costs incurred because of my HMS, Such as having to travel to hospital appointments over 3 hours away and all the equipment I need to make life easier. We have been blown away with the support the community have shown. Local shops all grouped together to help cover the costs of the over heads. The local theatre gave up the premises for the event. Raffle prizes came flowing in. All in they raised over £1700 on that night. An amount of money that is quite frankly breathe taking to us.

I was talking to a shop owner today and he said "Well, you make it easy to want to support you. You live. You're not sat at home feeling sorry for yourself, you've got this obvious drive to live your life. It's easy to help someone that wants to carry on as much as you do".

It's not often that we are able to agree with someone when they compliment us but in this case I do. I said to him "I've got a life to live, I've got to carry on! Can't be sitting at home doing nothing!" I do have a very deep desire to live. And I don't mean heart beating and breathing I mean to LIVE.

To feel the rain on my skin, the sun on my face, a laugh in my mouth, tears on my face. I want for Amelia-Rose to look back on her early years and think 'Jeez, my mum was ALWAYS there for me. Playing with me, baking with me, teaching me crafts, tickling me, goofing around with me, going on walks with me.' I want Tony and I to look back on these years and think 'We never let a day go by when we didn't say and FEEL 'I love you''.

This life, my life, is such a precious gift. Your life is a precious gift. It's all too often people let life whizz by in a blur of 'I must do this'. When was the last time you stopped to think "Was I alive today or did I just get on?" No one else can live our life for us. We and only we are responsible for that.

I believe every living thing has a right to live a good life. It's one of the reasons I don't use ANY product tested on animals and I strive to be a vegan (unfortunately my meal replacement shakes from the nutritionist prevent me from doing this right now) I don't believe my life is anymore imperative then that of an animal and when you suffer as much as I do you would NEVER have ANY hand in causing suffering to another life.

Although I've had probably more then my fair share of encounters with almost not being here anymore the thing that I am often overwhelmed with is a deep burning desire to live. It isn't about life and death it's about LIVING. I'm not talking about not wanting to die I'm talking about wanting to make every second of every day count.

It should always be the first thing on our list but so often it is the last.

It was a busy week getting ready for my friend's baby shower that I hosted yesterday. As she spent some time living in Mexico before she met her now husband and settled down to have babies (this is number 3) and her baby is being named after Frida Kahlo the famous Mexican artist we decided on a Mexican theme! I tried to do as much as I could before my big appointment Wednesday but there was a lot that I had to do in the 3 days that followed.  


Charlie thought that she was coming for a slice of cake and a cup of tea with her friends but behind the scenes I was furiously making decorations, preparing games and cooking up a feast! 

My friend stepped in to help me out on Friday, I had already asked her to help me out on the day of the party but she said she would help me with the shopping the day before and could then also be on hand to help me with everything that needed doing Friday. 

Honestly I couldn't have done it without her. I am so blessed that she was able to help out as much as she did because it meant I really got to give Charlie the shower that I had planned. It's so easy to get carried away with pinterest when you have all of those fantastic ideas at your finger tips but I decided what was most important and stick to that. 

I am going to do a post dedicated to that with photos etc probably on my very bendy baker blog which I have TOTALLY neglected! 

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Ok so a few days have past now and I have been a bad blogger and not finished this post. I am struggling to find 'blog' time at the minute which is sad because I love sitting down to write my blog! 

I do have a good reason though! I have restarted my YouTube channel and that's been taking up most of my 'spare' time because I have to edit the films before I post them up. I started a YouTube channel back in December because I wanted to be able to capture what day to day life was like with HMS and do information videos about chronic pain and how to support someone living with a chronic disease. I am trying to use as many mediums as possible to raise awareness of chronic pain/illness etc. 

I will figure out the balance between my blog, vlogs and other writing projects but at the moment the scales are tipped more towards the filming and writing projects. 

I have also been getting out and about which is fantastic and had two hospital appointments the last 3 days! 

The first was with the nutritionist who has put me on a new liquid meal replacement diet. I didn't really know what to expect going into the appointment to be honest but she was really lovely and is the first person to really listen about all the trouble I am having with nutrition at the moment and the extra detrimental effect it is having on my health. 

I happened to discover this vegan hemp protein shake last week that actually stays down!! Man was I excited when I drank it and it didn't come back up! My nutritionist would like me to have the shakes she has prescribed me and carry on with the hemp ones too. I am also to take a tablespoon of ground flaxseeds a day as well which I have been mixing in with the shakes. 

I use to eat ALOT of raw nuts and seeds as it was my main source of protein and only source of omega 3 but since the food intolerance began like everything else it slipped out of my diet. 

Just in the few days having the shakes I already feel so much better then I did before. My skin feels less dry, I have more energy (although I am still tired it isn't fatigue tired) I feel less irritable and generally happier. I feel sunny again. 

I then had an appointment with a specialist clinical nurse about the awful state my bowel is in! I had an appointment in London last week with a top consultant about my bowel and gastro system and it was so disappointing. I now make sure I go into these appointments expecting nothing but it still left us both feeling very flat. 

Firstly Dorset hadn't sent over ANY of the results from the extensive testing I have had on my bowel so she literally knew nothing about me. The clinic was running just under two hours late and during the appointment the Dr kept switching between English and Spanish (which we did just have to laugh about!) Of course it wasn't her fault that she had no test results or that she was running so late, these things happen but it was so frustrating because we couldn't make any progress. 

Right at the end of the appointment she declared she was going to write to the GP to have him remove me from ALL my pain medication but wouldn't explain to us why or listen when we tried to explain exactly why the pain service had put in place the 'cocktail' I am on (mainly to protect my bowel.) It's taken 2 years to get my medication to a point that it was at least reducing my pain so this news is a huge step back. 

My overall goal with my illness is to be 'drug free' but I am realistic and know this will take time if I ever do even manage to achieve it (which my pain consultant doesn't think I will) If my medication is stopped over night it will take my life away from me. There will be no going out, no cooking, no baking, no craft, no gardening, no getting up. It will be me stuck in bed like it was when I first became disabled. I can't go back there again :-( I have worked WAY too hard to build my life up around my illness. 

The very positive thing it has done though is given Tony and I the final push we needed to decide we are going to try to maintain my illness using alternative therapy. Sadly the NHS won't fund this type of treatment but there is a lot of evidence that shows HMS responds very well to alternative therapy. It's about taking responsibility for my health and instead of relying on Drs relying on myself. 

I will of course continue to work alongside Drs but from here on in I am in the driving seat. I just need to be a responsible driver! 

Anyway so back to the original update! The second appointment of the week was with this nurse who DID have all the results to my bowel tests. In a nutshell ALL the muscles in my bowel aren't working. That's both voluntary and involuntary! I now have to start a treatment that I will have to do everyday of my life... yes that is FOREVER! 

Bowel chat is not pleasant but it is a problem for MANY hypermobility syndrome patients so I will write about it. Cover your eyes now and meet us at the end of the blog if you don't want to know anymore! 

They originally did the tests to see if I needed surgery but as there are other complications with my bowel they can't risk it. 

The 'complications' being that where the soft tissue in my bowel has over stretched my bowel is full of 'pockets' which is there nothing they can do about.

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WOW I really am a bad blogger more days have passed and it's not over a WEEK since I started this post :-( I'm sorry! I have just been so busy this week! 

I am going to go ahead and post this just to get it out there and then I will start afresh tomorrow! 

Blessings x x 

To and fro T' london we go

I was going to Facebook  about today but I feel so mixed about it and it's not great so I figure I will blog and then people have the choice to click on the link (or not) but more specifically it's out here for everyone that reads the blog but I don't know in 'the real world'.

Actually on that note I just want to say a huge THANK YOU to everyone out there reading this blog, it blows me away how many people have read my ramblings now. If it helps just one person with HMS I will be thrilled!

So today was THE appointment with the gastro team up in London, I was told that they are the world leading specialists so felt really blessed to be seeing them and I only had to wait 3 months which is incredible!

We normally go and stay over night when I have an appointment in London but as it turned out we couldn't get booked in anywhere. We did look into staying further a field but it was going to get too complicated with transport because of the whole me being in a wheelchair thing!

This morning we all woke up earlier so we didn't have to rush. I took a shower which was really lovely and everyone was really nice and calm. Amelia-Rose was so ready (like socks and EVERYTHING!) by 8am and Tony treated her to an episode of Dr Who on the tablet!

I have a strict no tv before school rule apart from on a Friday so today was a real treat! On a Friday once I start doing Amelia-Rose's hair we put her shows on and she gets to watch one or two before school. I'm really big into Friday treats, I think it's a nice way to start the weekend and it means Amelia-Rose has something to look forward too. We aren't big on T.V and there will be days where she goes without watching so the Friday morning is a big deal!

Anyway I have gone totally off focus! Amelia-Rose went off to school really happily which was great as she has been a bit wobbly about us going to London again. The last time we went was for my operation so I think she's still holding on to a lot of those feelings.

We then got all mad rush which I really didn't want to happen but it ALWAYS does! We swung into slimming world early to get Tony weighed (he started 2 weeks ago and I am so proud of him!) and went down to mums so she could take us to the station. I had arranged with my friend that I would drop some stuff off for her as her next door neighbour goes but I realised I had forgotten so mad rush back up to the hall to drop all of that off. *more stress*

We some how managed to leave on time though! We even had time to get a coffee for the journey which was super! As I was waiting for Tony to come back with the drinks I got a phone call from the dietician asking if had gotten my appointment letter through and I said no I was still waiting and had been told it was more then likely going to be September. She then told me that actually I had had an appointment Monday but they've had trouble with people not being sent the appointment letters!!! WHAT!!!! I have been waiting to see her for three months and like I say I was told it would be September so I was bummed out to hear I had actually missed an appointment because they are having admin problems!

Fortunately she could offer me an appointment this coming Monday at 8.30am which I snapped up!! It's super! I have a meal replacement shake I want to talk to her about as the one I was on my doctor said he wouldn't prescribe it on repeat as it's too expensive and it was making me sick  (not that the doctor knew that) so I am hopeful she will let me at least try it!

It's been 6 months now that all solids come up and I can't begin to list the many ways the sheer lack of nutrition is affecting me! I guess the most glaringly obvious to me is how grouchy it makes me feel inside! The fatigue is awful but I can pull myself together to look 'ok' for Amelia-Rose (although it's really hard! I think it is what makes me grouchier inside because I don't want to show it) internally it's really starting to show now. You wouldn't believe how good I am at hiding the amount of suffering my body goes through! Honestly, people haven't got a clue! I am so determined it's not going to change who I am that I very rarely show the suffering.

I like to put on pretty clothes and do my make up nicely and be my goofy self when I am around people I am not willing to give myself over to the physical disaster that is 'm' body ;-)

The doctor today was well over an hour late and when I went in it was clear she hadn't read my notes and didn't really know why I was there. My local PCT hadn't sent over any of the results from the very extensive tests I have had done here so there was very little she could actually do. We went into my history (which is huge... think War and Peace or ya know one of the later HArry Potter books!) and her body language screamed 'oh god why did I ask'! Haha! Poor woman, the last thing she wanted today clearly was a complicated patient. Bless her.

I've been referred for bowel retraining (doesn't that sound like a barrel of laughs!) and have to organise (some how!) to get gastro emptying test done more locally.

There were times she kept slipping into a foreign language which was a bit strange but Tony and I were able to chuckle about afterwards!

I asked about nutrition but she was very clear that wasn't anything to do with her. Thank God I do have that appointment and don't have to wait until September!

Oh and did I mention she said she is going to write to my GP and get them to stop ALL my pain medication. eeeerrrrmmmm ok. *cue being bed bound* I understand in her mind she's doing her job and is looking after my bowel but you either need to give me serious support in managing my pain drug free (which would be amazing) or you leave my very carefully thought through pain management system alone. You don't just click your fingers and stop it all! Surely that's quite irresponsible?

So all in all I feel pretty crap about the whole affair. My body is screaming at me and I have SO much to do tomorrow :-( Amelia-Rose asked if she could sleep at my mums house tonight which I thought was a fab idea but she decided right at bedtime that she wanted to come home and so Mum bought her back. On the train home I was thinking in my head "yes lie in! Steady slow start!' and when I got the text I honestly nearly cried! School rush it is! Never mind, maybe it's a good thing and will just kick me straight back into reality.

It is definitely the right decision, I want Amelia-Rose to know when we say we are going to London and back in a day that we mean it. She needs to know it's ok.

As rubbish as I am feeling I have decided two things. 1. I am never going to London and back in a day again EVER. It was ridiculous but we had so much riding on today (or so we thought) and I couldn't miss it. 2. I am really really done with leaving my health up to other people. I float along and am in a good place and every time I have anything to do with a hospital it causes us all a huge amount of stress and nastiness and I am just not doing it to myself anymore or my family. From here on out I am going to try my very very hardest to control my HMS myself holistically.

It's well known that HMS responds better to alternative therapy but the NHS won't fund it so we are given painkillers and then pills for the painkillers and pills for the pills and I am just absolutely done with it.

At this point if someone told me to go hang naked upside down in a tree dangling by my big toe I would!

So new angle to the blog perhaps, how to stay in the driving seat of your HMS! I'm not saying I am never going to see a consultant again because I think that's unrealistic at the minute BUT I am done waiting for someone else to actually try to help and I am going to help myself.

I can't tell you how much red tape and admin errors we have en counted in the past 2 years and I am just so incredibly done with the stress that causes! From now on it's me in the lead.


Oh there was another thing that I decided today! I am going to start vlogging too. My memory is the worse it's ever been (my physchologist thinks it is being made worse by the lack of nutrition) and I am worried I will miss out on big chunks of life because I literally don't remember soooo I am going to vlog and hopefully then I won't ever forget because it will be right there in front of me! Bish bash bosh!

(will grammer etc check this tomorrow!)

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.



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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!