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.
I read this at 4 in the morning and became (strange for me) speechless. How you coped with the pain and all the rest with such dignity and good humour l will never know but you are an inspiration to us all Chloe. You are of an age where you could be my grand-daughter and thats a sobering thou writingght for both of us! Please keep up with your wonderful writing. I have said before you have the makings of a book which is desperately needed by sufferers and professionals. Please consider making this a project....it will help many .....and may even offset many of those cruel expenses you have incurred. My love and encouragement Chose. Bet wishes too to your wonderful man and little girl.
ReplyDelete