Find out about my experience on a reablement unit with a chronic condition

On 11th May, following a long stay in a London Hospital I went to a Reablement unit in my local area as I was not fit enough to go straight home and was very weak and deconditioned. I was taken by ambulance to the unit, on arrival I was greeted by a lovely assistant who showed me to my room and settled me in. The ambulance guys carried my luggage, consisting of lots of bottles of water, syringes, feed etc it looked like I was moving in and taking over the place. I just wanted to lie on the bed as I was in pain feeling nauseous and exhausted after the journey. I had my obs taken and my photo as this was needed for my medication chart, I certainly wasn't looking my best, then was left to recover. I met the Sister in the evening who was very nice.
One of the first things I noticed was how peaceful it was compared to being in a big hospital, you could here the birds outside the window instead of helicopters and sirens. My room overlooked the back rather than the front but it was so nice to be in the country.
The unit has 12 bedrooms that are nurse and therapist led, all working together to ensure that each patient receives the care and therapy to achieve their goals. The aim is to support patients in managing their own health conditions, restoring functionality, improving wellbeing and supporting self-care. All patients are assessed individually before coming and need to be medically stable as it is not an acute facility.   
The following day, my physio turned up in the morning which was a pleasant surprise with a very nice young man who I was told will be my physio for the stay, it was nice to see her again as it had been a long time. She wanted to see how strong my legs were from when she saw me last and they were both amazed how hypermobile they were, she needed to work out an exercise programme he could do with me, then she got me sitting with legs over side of the bed and activate core muscles to sit up straight, she had to help me to stand as I was so weak and then used my cushions and pillows to get me in a suitable resting position for my muscles to recover. She explained it will be hard work that is the purpose of coming on the unit, to achieve your goals, she stayed for a bit then left me with the young man who wanted to ask me a number of questions.

This was my exercise programme set by my physio:

Bed exercises:
  • flex foot, bring knee up towards opposite hip. Creating a 90 degree knee and hip flexion and slight adduction of hip. Push leg back to extension in hip and knee and slight hip abduction, power through the heel.
  • Guide the movement
  • Assist in the flexion phase and extension phase.
  • Core activation pull bellybutton towards back and hold tension
  • Elbow flexion with activation of shoulderblades
Sitting exercises:
  • sit up swing legs over side of bed onto side push up using elbow. Sit with slight support
  • Straighten up, activate core muscles. Rest arms on table and move objects on the table creating a twisting of core while maintaining posture.
  • Stand up with a raised bed and slight support behind back, practice mini squats
Do exercises twice daily 3 reps 3 sets
After exercise:
Get into resting position with support of pillows 
note: Daily form can vary, check on status before and after exercise

I went in the hydro pool in the afternoon, I had been looking forward to this as it had been a long time since I last went in. One of the assistants got me ready and made sure my PEG-J site was sealed up with waterproof covering and a porter came to take me down to the pool. I was only in the water a short time before I felt potsy and had to be hoisted out and taken back to my room to recover. I think I was expecting too much after not being in there for months.
Over the weekend I received physio twice Saturday and once Sunday. Through the week it was twice daily if I didn't have hydro. The staff agreed that I needed to use a tilted wheelchair due to my PoTS and an OT gave me one to try out, she made the necessary adjustments to make it smaller as it was huge. I was encouraged to sit in the chair for a short time twice daily to help with my strength, this was part of my goals but due to pain flares I was not able to as much as I/they would have liked, this is the nature of having a chronic condition. 

Throughout my stay on the unit I had to make sure I paced well, this was encouraged all the time and I had my own timetable for the week so I could put rest periods in after activity.
The nurses encouraged me to become independent taking my medication as this was something I had not been used to. They made sure I could access them easily by moving the cabinet closer to me and would check I had taken them. They also encouraged me to take more control over flushes after my feed and throughout the day for hydration, I needed reminding about this due to brain fog at times, they still helped connect the feed at night as this was difficult for me physically and made sure I had syringes to hand. Due to my fatigue and pain it is not always easy for me doing these things and I require help at times. 
I managed to go in the garden with my physio and OT on a couple of occasions, in the tilted wheelchair for a short time before I got uncomfortable and needed to go back and lye down, I was pleased I did this as the gardens are stunning.
Reablement unit beautiful gardens

I also managed to attend an arts and crafts class twice, which is something I am passionate about and didn't want to miss out on, they had a set project to work on, so you all do the same thing, the first session was decopague, which is basically making a picture up with lots of different layers giving a 3D effect. I made a teddy as there were not too many parts to stick together, my physio helped with the sticking due to pain in my wrists. The second session we made footsteps using photos, backgrounds and words, telling a story, however I suffered afterwards due to not pacing properly as I was engrossed in what I was doing. I had a volunteer helping me a lot but it was the sitting that was the main problem. This is the difficulty having a chronic condition the unpredictability of flare up's from one day to the next.

The decision was made by the team to reduce my hydrotherapy sessions as I was having many flare ups lasting for a few days, meaning I was unable to fully engage in my physio sessions which were very important to help me get back on my feet. They wanted me to practice trying to transfer more as this was a goal and something I was struggling with and needed to be able to achieve. They used different types of equipment to help me, I tried the following:
  • Gutter frame - like a zimmer frame but has four wheels and you place your arms on it. I found this too difficult as it put too much stress on my joints and especially my shoulder.
  • Special rollator -  which again I needed a lot of help with to stand up and get my balance, it used my arms too much
  • Banana board - needed two people holding me up as I could easily flop forward and took so much energy moving a short distance on it. 
  • Stand up hoist - The ones I tried are called Sara Steady, one needed to use the legs a bit to stand which was hard going and the other less so and lifted me up but under my arms which was not ideal for my shoulder. 
  • Handling belt - The problem with this is you have to be able to weightbear it is just used for aiding someone, I needed two holding me with this and was not able to weightbear enough for this to really work properly and at times was being pulled by it when I lost my balance
  • Minstrel - Hoist so you are put in a sling and are lifted completely you don't need to be able to weightbear, not that comfortable and can take a bit of time when transfering .
Have you used any of these and what did you find the most suitable?

What I benefitted from being on the Reablement unit

  • Independence managing my medication, this was something that was done for me in hospital
  • Confidence in using syringes for my flushes, had very limited experience of this before I came here 
  • Receiving regular physio and hydro sessions
  • Input from an OT and being able to try out different equipment/Aids
  • Opportunity to attend an arts and crafts class
  • Encouragement to sit out in my chair 2xday
  • Practice mindfullness regularly 
  • Activity Timetable to make sure I paced properly and got enough rest breaks 
  • Encouragement to take care of myself, it is so easy to neglect this due to pain and fatigue. The assistants offered me a wash every day 
  • The opportunity to talk to people, chaplains would come to your room and ask if you were happy for them to come and have a chat, which was nice as it can be isolating stuck in a room all day. 
Have you been on a unit like this? please share your experience
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Health update-Blogging from my hospital bed part 2&3

This is continuing on from my last post on Blogging from my hospital bed, if you missed Part 1 you may like to check it out.

Day 22

Still feeling nauseous and bowels hurting, started back on my feed again as it was stopped overnight, they put it on a lower rate as it seemed too fast for me. I had a visit from my Brother and partner which was nice. My friend in the bed opposite who also had hEDS and her name was Emma, what a coincidence! left today which was a shame as I was on my own. The other patients were all very helpful if I needed anything, they told me to just ask.

Day 23

Mum and Dad came to visit me, as it was the weekend it was quiet on the ward. The feed was going much better at a lower rate, I think it was increased too quickly! I felt better today but was tired in the afternoon. I had to get the nurses to help me more as I had been struggling with things and not wanting to ask and waiting too long for someone to come after pressing the buzzer. I made a point of saying I need more help, if you don't ask you get left unfortunately.

Day 24  

The Gastro team came to see me but I was really drousy. The consultant said about doing my feed over a shorter period at a higher rate to increase my nutritional intake, as at the moment I am not really getting enough to make much difference. The plan is still to put a PEG-J in, as the NJ is only a temporary solution to see how you will tolerate a tube. The Dietitian came in the afternoon to tell me to cut down on dairy and wheat, as they can irritate the bowels and they also said about having a Hydrogen Breath Test to check for bacterial overgrowth, this was suspected initially before I even came into hospital. I felt shattered all day, pain still not great. My sister came and my niece which really made my day, we went down to the restaurant as the baby was a bit upset.

Day 25

The dietitian came to see me and discussed how the feed is going, I mentioned about my bowels and nausea which she is going to talk to the team about. The Psychiatrist came as well to see how I am coping, he is really nice and we had a general chat, he talked about the plan for the PEG-J if I tolerate the feed well. The Nutritionist came and said she was pleased with how things were going.

Day 26

Dr and Nutritionist came to see me and I mentioned how bad the nausea and pain had been. I had lost weight again, they are going to get the pain team to see me.

Day 27

Mum came which was nice as she helped me a lot, the nurses don't have the time to spend with each patient. I suppose it is up to me to ask if I need help.

Day 28

Dr came to see me and talked about my nausea and if they gave me IV medication I would not be able to carry on with it at home, he is going to chat to his boss as it is complex, he said the pain team are going to see me. I am having a Hydrogen Breath Test midday, which will show if I have bacterial overgrowth.
The porters collected me on my bed which was nice, I didn't have to transfer and the test was two hours long. I had to drink some lactulose, then breathe into a special foil bag which was sealed by a stopper every 20 mins, it went quickly the two hours then I was taken back to the ward to recover. I was shattered.

Day 29

Quiet day on the ward as it is the weekend. Mum & Dad came to see me. Had a chat to the Sister in charge about some issues that had been occuring, she was lovely and said she will bring things up in their meeting.

Day 30

BP low again first thing, pain was not good either and I needed a lot of pain relief. Dad came to see me which was nice as it was so quiet on the ward again.

Day 31

Mum came today which was nice, nurse was really good making sure I had all my medication. The consultant popped her head in to see how I was, she told me to avoid grains, dairy etc as they are not good for motility problems. I told her how nauseous I had been. Bowels not been good either.

Day 32

My friend came to visit me and a Dr came in to see me, he was very thorough examining me, he said my bowels sounded noisy, he talked about reducing some of my laxatives at the moment. The Dietitian came to see me she was happy and wants to proceed with the PEG-J next week, she told me not to eat too much, it is just for taste and pleasure. The Psychiatrist came to see me and we talked about how my mood was. A busy day with visitors today.  

Day 33

No visitors today as I had an appointment with my Neurologist at another hospital, I was picked up by an ambulance and taken to my appointment at the NHNN, we arrived early so decided to go to the cafe and have something to eat. We didn't have to wait long to be called which was good. I told him about the issues I had been having with my PoTS especially my tachycardia episodes which he wasn't concerned about as my heart is regular and said nothing bad can happen from them, he was worried about my mobility more than anything as he said it is making my symptoms worse and he will get the Autonomic nurses to contact me in due course. The ambulance collected me and took me back to the ward to recover on my bed as I was very tired. 

Day 34

The Dietitian saw me and talked about the feed, she ideally wanted to increase the rate as I am only on 50ml/hr which is very low. She mentioned abot the PEG-J being next week sometime but no confirmed date, Dr came round he said my bloods were ok other than liver which showed a slight raise which could be related to the feed. I told him about my bowels and he is reducig my laxatives and giving me something for the nausea, he felt my tummy and listened to my chest, he was very thorough. Mum came and a friend from my Rehab programme who I hadn't seen for three years who was also on the same ward but in a side room, it was great to catch up with her, she has been having a rough time as well. She stayed for a while then went back to her room.

Day 35

Bowels were feeling really uncomfortable again with severe spasms and cramps, the nurse gave me something which didn't really help. Pain got worse as the day went on.

Day 36

Quiet morning being the weekend, pain bad all over. I had a nice wash from one of the nurses, Bowel was cramping at times. Mum, Dad, Sister and Niece came which was lovely. We had a chat to the Sister in charge about the PEG-J and wanted to find out more about it, she explained things well then went down to the restaurant as my Niece is too young to be on the ward. We spent a short time there before they all went home. 

Day 37

Quiet day on the ward didn't see anybody from the team. Pain bad again in my joints and bowels, BP low. My Brother came which was nice but I was in pain. 

Day 38

BP low, apparently they gave me fluids in the night but it didn't increase. I think it is my PoTS, I thought I was going down for my procedure at 14.20 but was told 13.00, I was anxious as no-one from the team came to see me and I expected them to. A Dr came in but I didn't recognise him, I was a bit annoyed with the nurse over the medication. The Sister came and chatted to me about things then a Dr came and explained things a lot more clearer so I knew exactly what was happpening. I felt much happier after this.

Day 39

Quiet day recovering from yesterday, my BP was still low so they put me on a drip to raise it. I saw a Dr but much later in the day. I didn't recognise him.

Day 40

No-one came to see me until later in the day again. I was in so much pain with my bowels the nurse had to call him, he was very nice and examined me and thought I had gone back to being constipated again as my laxatives were stopped too quickly. I was given a lovely wash by a nurse. From what I understand they had problems sedating me enough, this is a common problem in hEDS, which is why they couldn't proceed. Nurse was lovely in the evening, very kind.

Day 41

Had my BP taken which was low again even though I had been on the drip all night. I was given a lovely shower and hair wash, which felt really nice and made me feel really refreshed. I had a lie on my bed after to recover before the porters came to collect me and take me to endoscopy for my procedure. The staff were all lovely down in endoscopy and explained everything really clearly. The anaethatist came and had a chat about what he was going to give me and he did say I may need to have another cannula put in if they have problems with the one already there. I could stay on my bed no need to transfer which was great. 
Everything was over before I knew it and I was waking up in recovery, I was taken back to the ward after to recover.

Day 42

Woke up in agony with my tummy, very sharp pain at times. There was a dramatic situation on our ward with one of the other patients not being at all well. I had been on a drip all night which raised my BP as it was low from yesterday still. The Dietitian came and consultant to say I can go home next week. The pain was terrible everytime I moved, the nurse gave me IV Paracetamol.

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