Rehab day 6

i have been awake since 4.30am and arrived at stanmore at 8am. I feel asleep in the car. Hope i didn't snore.

Im the first one here and haven't got my first session until 10am.

Weekend review

My first session was to go over our goals that we set last week. I felt really lazy as everyone else managed to do fun things at the weekend and i just slept. My goals were : to perform physio throughout the day, to complete activity diary, to pace washing and dressing, to order some aids, to pace tidying craft room and to use post it notes to prompt good posture.

I achieved most of my goals but sadly didn't get into my craft room as i was to exhausted.

Anatomy and healing

In this session we went over how the bones, muscles ligaments and tendons worked and the effects ehlers danlos syndrome has on them. To be honest it was abit boring.

I had a break between 11.30am and 1pm so thought i would get some sleep. It was not to be as the other girls have endless energy so was very noisy even with earplugs.

Goal setting

We discussed how goal setting can help you ficus and feel like you've achieved something. I found this session quite useful.

I was then off to see the o.t. She had a look at what i did over the weekend and then we colour coded my activities. She then asked if i slept because i wanted to get out of dealing with life or something along those lines. I was deeply offended as in the early stages of my illness this was suggested, but now i have alot of medical letter that explain my conditions and symptoms. Ive tried not sleeping in the day and i end up even more unwell.

The course is centred around pain management and theres alot of people in here who don't do anything with there days and will just stay in bed. I do not accept being put into the same category. Ive fought hard to get to the level I'm at and now i'm questioning myself.

After a tearful session i went onto physio. She doesn't want me using my wheelchair headrest so she flipped it back. I feel like everything I've fought so hard for is being taken away. I feel like saying ' here take my chair, take my slide board, take everything as I've had enough.

Day 3 in rehab

Woke up this morning feeling dead. There was noone  to help me out of bed , so i dragged myself onto my chair but i couldn't sit up so was half on chair and half on the bed. Took me ages to sit up. I then went to the bathroom and attempted to get dressed. When I'm having a bad day i literally cannot move. Finally found someone to put my trousers and shoes on. I confess that i still have my socks on from yesterday as i couldn't change them. I rushed to have abit  of breakfast, take meds and flush my feeding tube.

Tai Chi

The first class was tai chi. I didn't know what to expect from the class. I was thinking it was some form of karate. I hoped so anyway.
My hopes were dashed in an instant. We all sat around in a circle while a lady said we need to close our eyes and visualise things. We then had to move our arms and legs. Brilliant in theory but i have no sense of where my limbs are in space. If i close my eyes my arms could end up anywhere.

My eyes had to stay open so i didn't really get much out if it. I was quite embarrassed as my feeding pump does a whirling sound every few minutes. Not good in a quiet room.
The lady used such words as ' effortless posture' and you will be 'revised and energised'. I thought this meant i was going to be like a duracell bunny, but i was more like a slug.

I didn't have another session for 45mins but i waited up in physio as my chair isn't charging well so i needed all the power i could get.

 Occupational therapy

Next was to see my o.t. We went straight into the bathroom. I immediately saw the bath and thought this was my kind of therapy, a long soak in the tub. It was not to be.

We talked about getting up, washed and dressed and how i'm managing.

I brought up that i was struggling with the lack of care on the wards and she is going to talk to the ward staff about it.

We came up with some solutions for my problems. Aids such as a long handled sponge, a thing that helps you to put your socks on and different baskets for dirty clothes. Also to put washing on the worktop instead of the floor to save bending.

 We then talked about my carers and how they need to do more work but also slow down and give me time in between showering and dressing. They tend to lug me out of bed and are only there about 30 mins instead of an hour.
After discussing all this my o.t said i looked very tired and we should finish early.

 Sadly no rest in between as i was off to a session in relaxation

 Intro to relaxation

 By this point i was exhausted. I was sort of listening but only caught little bits. My mind wondered. Here are my thoughts while i was trying to listen .

No idea what it is about, is it bed time yet.
I'm freezing cold.
I wonder if i'm going to get a chance to charge my chair
Need matchsticks to hold my eyes open but its a non smoking building so could be difficult.

 The lady said something about a person getting bitten by a snake but don't worry relaxation will help.
Picture of a leopard asleep on a tree, very jealous of mr leopard
I've got nothing left to give. Help

The lady then went onto talk about laughter therapy and my first thoughts were ' i don't think she would appreciate it if i starting laughing.

I then thought it might not be appropriate to laugh when your at a funeral. Yes i have random thoughts.

Next stop is an intro to assertiveness

We touched on subjects such as being aggressive, passive and assertive. I don't think theres much to say on this subject but i did wish real life was like sky tv where you can stop and rewind.


Yes i am still alive just. Physio was only half hour and something she said made me burst into tears. She asked me what i was upset about but i knew i would come across as defensive (see im learning ) if i told her she had upset me, so i decided to not tell her and think it over. We then went off to the sports centre and i realised i was rubbish at basketball, tabletennis and badminton.

Im now in bed after a very long day. Lets see what tomorrow brings x

Day 2 in Rehab

First i apologise for the very long post

Its 7.32am and i am waiting to see if anyone can help me get up. They don't have carers as such here and we are not allowed to ring the call bell unless it's an emergency, I wonder if needing a wee is classed as an emergency?

I feel awful today after a very long day yesterday. I'm sure i will be alright when i take me meds. I might transform from someone out of the night of the living dead to an actual human. Mmm we can only hope.


My first session started at 9am. It was a class on stretching. There were a few of us there today and we just did gentle movements until about 9.30am. Next i went to see the physio. She had me lay on the bed and tested my movement and muscle strength. She came to the conclusion that i don't have much muscle or coordination hence why i can't stand up. We then discussed my leg braces and she said they weren't much help as you can't walk around in them forever. I think i used up all energy just carrying them up there.

Next she came up with an idea. Try some different braces. So she brought in some foam ones and i turned into the michelin man. We tried to stand on the parallel bars but i was like a raggy doll and flopped back into my chair. She gave me a few exercises to do and tomorrow we are going to the gym, hoorah. Apparently not many people get to go as there not used to the exercise. I love the gym and maybe the men in it haha. Its an all girl ward here so it would be nice to have a bit of eye candy.

Anyway after being tortured. I mean having controlled exercise, i had to go and meet a lady. I say lady as I'm confused as to what she does, i think shes a therapy technician. Who knows. The first thing i notice in her hand are colouring sheets. Does she not realise that I'm allergic to colouring, the black and white makes my head spin and my hair stand on end. After colouring in two flowers i said i can't cope.In between that i had to work on my posture and sit up straight for 1 minute at a time.

We decided colouring wasn't for me and went onto card making. Sadly they don't have as much craft stuff as me. Think i need to donate some. Heres the card i made. I think i did a pretty good job considering.

I'm now free until 3pm.

I managed to get some sleep and am now off to see the o.t

Occupational therapy

I've come across a few o.ts in the time i've been ill. I always thought they just dealt with equipment but they do much more.

Other subjects we touched on were assertiveness and whether i go on forums. She said i'm different to the other girls as they spend alot of time on them. I admit i did in the early days as i was new to the condition but after 12 years it's no longer the centre of my life. We set a few goals to discuss next time i see her.

Pain talk

We talked about acute pain vs chronic pain, fear of pain can create pain and that everyone interprets pain differently. It helped me to understand others more than myself. Because you can't see pain in other people it's very easy to say ' get off your arse and do something'. But often this isn't the case. Pain is entangled with so many different issues emotions and environmental factors.I now have more of an understanding of the issues pain can cause. Another day over and now i'm going to relax and catch up on some tv. X

Rehab day 1

Today i start a 3 week rehab programme in london. Hopefully it will help me learn new skills on how to cope with my condition. I will try to update everyday so i don't forget what I've done

Day 1 

I got up about 6am. I was even awake before the birds. It took a couple of hours to get here and we were a bit late as got stuck in traffic. How dare people be on the roads haha.

When we arrived a volunteer showed me to my bed. I was just starting to unpack when i got ambushed by people. It was like a mosquito swarm. First the nurse to fill in paperwork. Then the doctor. Between these two came the menu lady, oh and the pharmacist. It was then off to my first session. Just trying to remember what it was. Welcome meeting i think. Then straight after it was something to do with pain management. I was late as i had to flush my tube and i didn't even get time for a tinkle. I felt very lonely in the group as the other girls knew each other.

Next was lunch and i met some nice ladies from my ward. After lunch it was physio and o.t. This was basically just to introduce themselves.

After that was a class on pacing. I don't understand pacing. I would rather get everything done. I couldn't understand how you pace doing the watching, do you just put one  thing in the wash then rest and out another thing. It would be a very long day if that was the case. The o.t laughed and said thats not how its done. Damn that means i cant get away with just doing that all day.

I managed to get a rest in between but i couldn't sleep as my bed is right by the nurses desk and the doors. I was getting more and more exhausted, i wanted to go home. I missed it terribly. After spending two months in hospital i didn't want to go to another one.

After i rang mum and had a good cry i went to dinner. It was quite nice to chat to the other ladies. Alot of them are just here for a week whereas I'm here for 3.

I then decided to have a warm shower but sadly it was cold and then got into bed. I was terrified of sleeping incase i snored. I would be so embarrassed. But sleep got me in the end.

Day 1 over and i survived x

New home card

I haven't really got much to say today. Been busy with appointments again. Had 7 this week. Next week i go into rehab for 3 weeks. Excited but nervous.

Anyway heres a new home card that i drew for a friend. Pretty pleased with it x

Play time with new stamps

Before i went into hospital i treated myself to some new stamps. They are by Avery Elle and i fell in love with them.

Here are some cards that i made

I'm Home

I finally came home from hospital two weeks ago. However it hadn't been plain sailing. The day after i came home my feeding tube got blocked. I couldn't unblock it  myself so had to go to a&e. 

I knew as soon as i git in there that the doctor didn't know anything about tubes. He looked puzzled and was umming and arhhing. So i said to find someone that does know. He then gets a colleague of his to have a look.He was pretty useless aswell and wanted to out a new tube in himself. Bearing in mind it goes into my intestine i wasn't going to let him pull it out. 

Then a nurse came in with a big trolley and said 'one of these should fit'. I looked and the trolley and it was full of catheters. Mum and me just burst out laughing and thought where the heck are they going to stick that hehe. Turns out nurse was in the wrong room. Phew

I had the option to stay overnight or go home and come back. My tube is my lifeline but i said i would risk being without fluid until i got a new tube fitted the next day.

New tube is working brilliantly but have been very busy with appointments. 

I thought i would show you a pic of my feed that i change everynight. 

My feed, pump, syringe and giving set. I do love the colour haha.

I have also made some cards but i will upload those in another post.

Oh i forgot. To say happy September everyone 
Hayley x

About Me

About Me

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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x