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

Home again after 'the' London hospital appointment.

When the alarm went off at 4.45am and I knew we had to leave the house at 6.15am to catch a train for a hospital appointment in London at 10.50am I of course gleefully woke up and looked like this...

My husband is a lucky man! Ok, so maybe that is a tiny white lie. It was this more... 

Ok, jeez, I'll stop lying. In all seriousness, it was.... 

I am not and nor do I pretend to be a morning person anymore. Pre child I use to love waking up ridiculously early and being around in the calm hush of morning before everyone else started waking up. Especially in Summer. Even now the one time of year I can truly tolerate and actually appreciate my periods of insomnia is in the summer. I love when at 3.15am (ish) the sun starts coming up, the birds start singing and you can tell even then that it will be a beautiful day. I often go and sit in the garden at that time if I can't sleep. 

Having birthed a baby that never really saw the point in sleeping (I wonder where she got that from?) my love of mornings quickly disappeared! Amelia-Rose fed hourly for the first three months (I breastfed and she never quite got the whole having big feeds to fill herself up thing. I also became 'the human dummy'. I'm not moaning, I chose to feed on demand) and pretty much every 2-3 hours until she was 6 months. Did I mention that was day AND night?! As the months rolled on neither of our sleep patterns improved. It was only when she started school that Amelia-Rose truly started sleeping through the night although she still wakes talking and getting upset in her sleep but she resettles now fairly quickly. 

Anyway, I digress. My pain is always worse first thing in the morning and last thing at night. Everyday as I stir from my sleep but am yet to open my eyes to the day the first thing I feel is pain. To really 'get going' I need my medication to kick in (20-30 minutes) but as my swallowing is also its most painful when I wake up I now need to wake up, sit up (for a good 10 minutes) and slowly sip something before I can gulp to swallow my meds. It makes mornings when we have to get up and leave early very difficult. 

But we did it and left the house only 15 minutes late. Hoora! 

We were met off the train by someone who has been supporting us greatly through our church although I personally have never met him (we go to the same church but different services) We've been in email contact for a few weeks and he has been guiding me through the ins and outs of the NHS. As he lives in London Monday to Friday he surprised us at the station and walked us out to the taxi rank. It was so completely wonderful to be met straight off the train by such a friendly face! It really was! 

We arrived at the hospital with enough time for a quick toilet break and went up to the clinic where we waited.... and waited... and as my appointment time came and went by 20 minutes I started to panic we were in the wrong place (as I had received a letter telling us the clinic has moved to a different part of the hospital I started to think maybe it has changed back to the original location) Tony went to ask at the reception if we were in the right place which thankfully we were! Now at UCLH you don't book in with a receptionist as you go to the department where all the various clinics are there are screens where you check in and it tells you where to go. Much like at our local GP surgery. 

They asked for a urine sample and took my blood pressure and then it was back to the waiting. It was obvious the nursing assistants were starting to get a bit flummoxed themselves and it was then we realised the Dr I was waiting to see wasn't actually in the clinic at all yet. 

As we were waiting the two ladies sat behind us started to talk, an older (although by no means elderly) lady asked the woman what she was here for and she said 'I have a disease called Ehlers Danlos syndrome. The collagen in my body is faulty so my knees dislocate. It's hard because I have a 7 year old son and one day I am fine and the next day I can't move and am in agony. People look at me and don't get it because it's an invisible disease and I look so well." The older lady (who was on crutches and wearing wrist supports on both sides) explained that she is in agony all the time but the doctors won't diagnose her. Her knees dislocate frequently and she often falls, sometimes having to wait hours for her teenage children to get home from school, she explained how frustrated she was and nothing they did worked. 'The doctors won't listen' she said. 

I had my 'My joints go out more then I do' hoody with me so I turned around and without saying anything held it up which made them both laugh.  It sounds awful but it was so nice to sit and listen to these women talking. There are times with HMS that it is so painful and so diverse that I think it must be in my head. 

A bendy bank holiday Monday.

I had an awful night last night, first of all I couldn't get to sleep because my body was screaming with pain. Then my darling husband snored and snored and snored and snored.

Bless his heart when Tony snores I want to gleefully sit beside him being the dutiful wife...

But of course there is always a reality.... 

It took me along time to 'warm up' this morning, I found it difficult to shake of the groggy head and aching bones. Amelia-Rose sat on the bed with me and we played a game of spot the difference. She got two objects that were similar and we had to take it in turns to spot a difference, listing as many differences as we could before she found some more objects. It was fun and gentle! We then popped downstairs and decorated some pebbles we got at the beach with nail polish to put in the garden and I made a wind chime out of driftwood. Whilst I made the wind chime we left the backdoor open so I could watch Amelia-Rose on her swing as she showed me all her 'new tricks'! I cannot begin to find the words to describe how much I adore my little girl! My blessing. My world. My life. 

I then went in the bath to soak my aching muscles whilst Tony and Amelia-Rose played hide and seek with our newly painted pebbles in the garden. 

Once I was out of the bath Tony and Amelia-Rose went to the beach and I began cooking an all mighty roast for them to feast on when they got home! 

For me cooking is love. It is so important to me and has always been an enormous part of my life. We have photo's of me helping my mum to bake as a toddler and it's always been something I love. As a child I would plan elaborate menus and send out invitations to my aunt, uncle and grandparents to come for dinner. I would cook these meals (always three course!) and even at such a young age gain a huge amount of satisfaction from seeing people I loved enjoying my food. Of course I never would have learned the skills without my mother passing them down to me. I am truly blessed to have a mother who passed down the baking gene! 

Before I got sick I would, every night prepare wonderful meals for Tony and Amelia-Rose was weaned on all home cooked meals. During the summer months she would even eat produce I had grown in the garden. At one time she had a real taste for courgettes picked freshly from the green house! When we lived with my parents when we all relocated to Dorset she would toddle out into the garden with me in the morning with a bowl to pick fresh raspberries to have on her porridge! 

When she was still a babe in arms I would put Amelia-Rose in her sling and bake with her, by 2 and a half she could pretty much make her signature jam tarts by herself, I became the sous chef!

My inability to cook every night now is still something that cuts very deeply, however when I do cook I am over taken with love for my family. 

Tony and I have very different ideas about food. I am all about healthy living and Tony, well, bless him, isn't. Obviously I can't eat at the moment but before the 'can't digest solid food' thing happened I was living a vegan life. Amelia-Rose has chosen to be a vegetarian and Tony is meat all the way.

Preparing food is in my mind a part of how I nurture my family, therefore I do cook Tony meat. I will only source it ethically (as ethically as you can... trust me!) and although it is silly, before even beginning preparation I always thank for animal for it's life and for helping me to sustain my family. 

Today I made roast lemon chicken with crispy roast potatoes, yorkshire pudding, peas, carrots and broccoli and swede. (Tony eats hardly any veg and will literally only eat peas and carrots.) 

The thing I have discovered through my illness is that there is a time and place for frozen food. I recently purchased a bag of frozen peas and carrots. Normally I would buy the carrots from the local grocers but because I am not well enough to leave the house for shopping at the minute I have taken to online food shopping. (I still won't buy any meat in a supermarket) When I saw the bag of frozen peas with sliced carrot I bit the bullet and got them and the quality really surprised me! They were good! I also bought some frozen stuffing which took a whole minute and a half in the microwave! 

I have always adored my role as a housewife, that doesn't mean that I don't believe in women's rights (when I was 10 and had to chose a hero and then debate why they shouldn't be thrown from a hot air balloon I chose Emmeline Pankhurt... no joke!) but I liked caring for our daughter, keeping the house in order and having meals every night that would make 'Good housekeeping' proud. I like having a strong man to look after me and make me feel safe, one who encourages me and adores me and I know would move heaven and earth to make me happy. I don't need to question decisions he makes because I know he always puts us (Amelia-Rose and I) first and would never jeopardise our happiness or security.   When my ability to fulfil that role as I use to was stolen from me it devastated me but now I am learning where the corners can be cut but produce the same results. This probably sounds pathetic but when I sit and get through all the ironing without having to stop because my hand hurts I feel victorious. 

So, frozen short cuts are my friend at the moment. Today it meant I was able to serve a huge roast dinner with some of the 'hard on my hand work' reduced which is something to be celebrated! 

We are off to London tomorrow on the 7.07am train! We've just set the alarms for 4.45am so I am off! I guess today's post was something of nothing really. Just a 'normal' day in an extraordinary house! 

Blessings x  

The bowel that gave up hypermobility syndrome style! (Nice I know!)

Oh Lord, where do we begin this time? Grab a tea and a chocolate hobnob it's been a rough ride....

Trial to Frog pond

I went for the tests in Poole hospital last Monday, they were uncomfortable but essential so I closed my eyes and returned to frog pond (A beautiful 'pond' i.e mini lake in Canada behind our friend's house.) The place I so often visit in my mind when I am having nasty medical procedures done.

Frog Pond

The first tests lasted an hour and although he couldn't go into details about the results there and then he loosely indicated that it wasn't good. Although it does appear that whilst the nerves aren't perhaps what they should be in bowel they did respond at a higher frequency so it looks like this is indeed muscles rather then nerves. 

WARNING WHAT COMES NEXT IS GRAPHIC (but this blog is all about honesty and what it is like to live with these various conditions, Hypermobility Syndrome, Dysmotility syndrome, Ehlers Danlos type 3, Gastroparesis)

Regardless of the poor response from my bowel during the first test they decided to go ahead and do the proctogram. I'd never heard of a proctogram before and whilst I had a little idea of what was to come thanks to good old google I was still shocked at what it actually consisted of! I had been told to swallow a 'barium meal' two hours before and despite me telling them that my bowel is pretty much useless they filled me up with it, you know, 'down there'. I then had to sit on a commode (honestly I get to have all the fun!) and with a huge horse shoe x ray machine around me I was instructed to erm, pass it. Honestly my life is so glamorous!

Of course I couldn't pass it! Dur!  As they don't have a procedure for if it doesn't pass they sent me home! I didn't feel too bad to be honest at first but by about 9pm I felt horrendous I was violently violently sick and had an awful headache.

I don't remember anything of Tuesday, I was in agony and delirious. I slept all day (which is so unlike me, I always make the effort to get up and be 'normal mum' for the sake of Amelia-Rose, we drive to school then I take her, with someone pushing me to drop her off at the door and say goodbye) I was in and out of consciousness but just talked jibberish all day. 

Tony took Amelia-Rose to gymnastics after school and my mum came to sit with me. Mum apparently explained to me that she thought she needed to ring the doctor but that might mean I have to go back into hospital and in my 'out of it' state I hollered 'That's not fair'!

I had promised Amelia-Rose the day before that after gymnastics Daddy would take her out the front on her go kart, something that she had not forgotten so when they got home they did just that. The district nurse then arrived and my mum went out the front to take over from Tony so he could be with me. 

The district nurse did an enema (I told you I have all the fun) which of course did absolutely nothing so she called the doctor, it was then that Mum took Amelia-Rose back to her house for her tea. The doctor came and ordered an ambulance and said if I deteriorated then Tony was to call 999. My Dad then arrived to get my mums keys that she had left and to offer moral support whilst we waited for the ambulance.

After an hour the ambulance service rang to say that they were dealing with a high number of 999 calls but would be with us as soon as they could and again said if I got any worse we were to ring 999. Another 30 minutes past, every minute the contractions that I was experiencing increased. I drifted in and out of a very restless sleep completely unaware of what was going on around me and Tony decided enough was enough and rung 999.  

Is my friend!

The paramedics gave me all of my nightly meds from home but were unsure what else they could do for pain relief as I take such a cocktail of medication. 

I was taken to the local hospital (the one I was only discharged from a mere 5 weeks earlier after a 2 week stay) as i huffed and puffed on gas and air.

Like this but there was more!

In A&E I was x-rayed and of course my insides were absolutely glowing with all the barium, the x-ray technician said it was the most beautiful thing she had ever seen and wanted to take a copy home to hang on her wall! The problem was that the barium was literally set, so now not only was I full of 8 weeks worth of juice soup and forticips (the meal replacement shakes the dietician put me on and is the only 'food' I 'eat') I was now full of barium too.

I was admitted to the ward where I spent the next week. Thursday was a really hard day. I saw the consultant who told us that there was nothing long term they could do. I was to drink 2 litres of laxatives that would turn EVERYTHING (good and bad) in my bowel into water. I was in tears talking with them and asked if they would fit me with a ostomy bag (a form of colostomy bag) but he said because food doesn't pass through my system above my bowel effectively I would run such a chance of getting an infection that it was a call that they themselves couldn't make and they were referring me on to the 'world leading' specialist who thankfully is based in London.



I'm not going to lie. I broke a bit Thursday. I mean, I was crushed, in that way when your world just stops and you feel so lost and so much pain you actually go numb.  I can make a good life for myself despite all the joint dislocations and the joint pain. I know how to manage that. I can be the best version of myself despite all that. This gastro and bowel stuff though is literally stopping me in my tracks and the strain it is putting everyone I love under is horrendous. I see it in their eyes and in their faces and I can't bare it.  I feel the deep injustice people are feeling on my behalf and I see the sympathy in their expressions and for their sakes I just want to make it go away. Thursday was the day that I submitted and thought 'fine, let it be, you win' I couldn't even cry. I have never felt so alone in all my life. God it was awful.

Friday the doctors returned and I begged them to let me go home. So what I was still full of this poison and my bowel was at bursting point I just needed to be home with my little girl and my husband with my cat sat beside me. They'd already told me there was nothing they could do!



The doctor insisted I at least drink the laxatives and 'if' I felt like I could managed the journey home with the laxatives inside me then I was welcome to go. By the end of the 2nd litre my bowel should have been completely empty. So I drank and I drank then I drank some more and then it was gone. Hours went by and I felt like hell as I was warned I would and yet nothing shall we say departed?

I was asleep when the doctor came back. Tony told him I still 'hadn't been' but they said I was free to go anyway. Tony woke me and told me we could go home.

In the car on the way home oddly all I could think about was cereal. I hadn't 'eaten' (remember I live on forticips so in literal terms I hadn't drank my food) for 5 days and I wanted cereal!

Tony wanted to push me through the garden to the back door but I wanted to walk through the garden and one step at a time appreciate the beauty of 'home'. I opened the kitchen door and called 'Hello' and heard Amelia-Rose say 'Mumma?' to which I replied 'Hello' again came 'Mumma?' this time slightly more excited after a third call of hello Amelia-Rose shouted 'MUMMA' and came running into the kitchen and threw her arms around me. There are few things in this world more beautiful then the moment a daughter is reunited with her mother. That is a lot of love for a small place.

After we were all settled in I had my bowl of cereal and of course was awfully sick but I enjoyed the taste in my mouth whilst is lasted!

Before settling down Amelia-Rose read to me, she's read 48 books this year at school and is super excited to hit 50 books, we're going to have a big book celebration in honour of her achievement!

Then she snuggled down to sleep next to me and she held on so tight. Oh my goodness, this little girl's strength blows me away. Honestly, what a beautiful soul she is.

Fortunately shortly after getting home the seemingly impossible happened! The waters came!! I don't think everything has come away but at least hopefully the horrible barium is out. The doctor did warn that this was a very desperate last ditch attempt at getting me empty but it isn't by any means a long term solution however lets rejoice for now.

Kim and Aggie? Natalie and Michelle!

I had a day of visitors today and bless them two of my friends who came to visit sprung into action when I said I was struggling with the chaos in the house (by no means am I complaining that it hasn't been done I just was struggling because we don't normally have a messy house) and blitzed the place! Washing was put away, floors were hoovered, wet washing was put out to dry and the washing up was done! Amazing! When they asked if I wanted them to do it instinctually I wanted to say no but people always tell me how helpless they feel, they are so desperate to do something, anything to help us out and so I sucked down my pride and I said yes!

I am feeling more together, I've been listening more to the Rich Collins song 'Fall back' that I wrote about a few posts back. The more I hear 'She doesn't know if she's got the strength to climb another mountain' and it settles on my soul the more I think 'Lord I don't know where the strength will come from but i have to find it, this isn't it for me'.

I feel something stirring in my spirit and I have to believe that by stripping me back to nothing God has a plan for me, I wish I knew what is was but all in good time.

We are off to London on the 7.07am train for a really important appointment and then I have an appointment with my rheumatologist Wednesday and we'll come back on the train after that. I hate to have to leave Amelia-Rose again over night (she's off to mums) but hopefully, prayfully, finger crossed (ully?) this will be it for a while. At the very least until my operation at the end of May.

If you've read to the end, well done! Thank you for sticking with me! I'll try to mini blog on my phone from good old London town. Thank you to everyone who continues to support us through this quite frankly crappy time. We are eternally grateful to you all.

Blessed be x x x