For 3 weeks I will be staying in the rehabilitation ward at the Royal National Orthopaedic Hospital in Stanmore which is somewhere between Watford and London.
We drove to Watford Sunday afternoon then from Watford to Stanmore the monday morning. We had to be at the hospital for 8:30 but we arrived at 7:30 so sat in the cafe before we had to go in. The pavements hadn't been cleared by that point so we had to push my wheelchair through the snow which was rather challenging.
I was seen by several medical professionals in the first hour or so after Emily left. Mostly asking me the same questions over and over. 10:00 was a group welcome session and explaining how the ward works.
In the afternoon I had a session with the OT and physio. The porter took me in the "buggy"/electric chair instead of my own wheelchair which meant I was a bit stranded once I got there. I wobbled my way to the cubicle almost falling over a few times. The physio was rather alarmed at how crap my walking is and my windmill impression just to stay upright. We easily use up my allotted time just going over the details of all the problems. I have 2 goals this week, swimming and getting safe to walk (orthotics, braces, gait analysis).
The last session of the day was Pacing. I missed the first part of the session waiting for the porter to come. Setting a baseline level of activity that I can manage whether it is a good day or bad day and then working from there. Breaking tasks down into smaller manageable chunks with frequents breaks remembering to stop before the pain signal. Have a flareup/setback plan.
The day was rather chaotic but hopefully it will be better once settled in.
Started with waking up at 4:30am after finally getting to sleep around 2:30am. I was in a lot of pain overnight but I didnt want to bother the nurses as they had their hands full with the patient in the bed opposite me. He was up groaning, swearing and throwing up all night poor fella. He was so loud he kept awake some of the women in the other wing too!
9:00 was the stretch class. I spotted a few EDS folk in that class and they spotted me too by how far we were stretching compared to the others. Been told to not do some of the exercises because my right shoulder is still rather dodgy and it came back out doing one of the exercises.
9:30 I saw the OT and my goal for this week is to work on my transferring from my chair to other things as I'm putting too much pressure on my shoulders. We had a long talk about everything and she is going to come up with some other ideas.
I had quite a big break between the OT session and the afternoon physio session so I managed to get a 30min nap in the afternoon.
2pm I had my physio session where she tested my reflexes (came out better than I expected). Got a lot of areas to work on in my lower body and have been given a few exercises to do once a day with only a few reps, slowly working up over time.
Day 3: Today was a bit better I had stretch in the morning followed by instruction on lifting and handling in the kitchen. After the lifting and handling session I had my one to one session with the occupational therapist Lucy.
The afternoon was spent doing physio with Hannah and we started working on strengthening my rotator cuff as there were other muscles in my shoulders and down my side that were over-activating to compensate for my rotator cuff being rather rubbish. My time standing correctly has now gone from 5 seconds to 15 seconds! So there has definitely been some progress.
After physio we then went to the sports hall to do our sports session. At first we tried to play table tennis but the balls spent more time off the table than on it! We had a laugh and used one of the sponge tennis balls and used it on the table tennis table. I spent about half the session playing badminton, it was lots of fun but my shoulders didn't really care for it, which really is a shame. I dislocated my shoulder reaching to make a shot.
Day 4: This morning started off rather roughly. Each evening and morning they have been testing my pulse and blood pressure laying and standing. This morning it seems to have triggered my autonomic symptoms quite badly as I have been rather dizzy and have had a few near faints and one actual faint today. My pulse went from 75 laying down to 125 standing up, my blood pressure went down by about 20 as well.
Stretch seems to be the class that is rather notorious for us hypermobile types to faint in. A few of us needed to lay down part way through it because we were on the verge of fainting. I never really actually feel the stretch unless it is beyond the normal range of movement and even then it normally causes pain in the places that aren't actually being stretched.
I had a joint session with the physio and OT right after stretch to talk about my goals for the weekend. We decided that I needed to take breaks while pushing to the cinema when we go on Saturday. I also need to pace my time on the computer a lot better as there are times where I am sat there for hours without having a break because I get so consumed in what I am doing. To do this they recommended that I download the program called workrave.
We had a session in the OT Bedroom about postural management and we tried a few different things that we could use to make it better such as memory foam pillows. I tried laying in the bed and they suggested ways that I could sleep a bit more comfortably by supporting my body with pillows and hopefully that will stop me moving around so much during the night as well. They said about when I do lay on my back to sleep that my legs roll outwards and obviously this will make my hips rather painful, that I should put a pillow at each side to stop it from rolling outwards. This is something I have tried before but I forget to do.
In the afternoon we had a swimming session at the ASPIRE pool. They had a wheelchair that they could wheel down a ramp that was in the pool, this made it a lot easier to get into the pool. I have definitely got a lot weaker over the years, I used the noodles to support my upper body so that I didn't dislocate my shoulders while I was in the water. I did a bit of walking and some kicking in the pool and funnily enough the dizziness did lessen while I was in the pool. As soon as I got out of the pool, going from the cold pool to the rather warm reception I instantly felt like I was going to faint. One of the people that had taken us to the pool got me a glass of water and a salt shaker I swear her look of shock got worse and worse the more salt I poured in to the water!
During the evening I had a couple of faints I think all the extra activity, the fact that the ward is very very hot was exacerbating it. I'm not quite sure why I kept fainting during meals though, that doesn't usually happen. It normally happens a little while after the meal. I can't wait to get the testing at NHNN out of the way so they can figure out what is going on, I have my suspicions but until it is confirmed I'll carry on doing the things they have recommended. I have been doing what they recommended but it still happens anyway.
Day 5: There was a short discussion group about the weekend and what our goals were and how we were going to achieve them. What help that we could get from our friends/family to make sure that we did them and to support us to do so. The Fridays are always pretty empty and we get to go home early which meant that we could get away before Friday evening rush hour on the M25 to get home. We left about 2pm and including breaks and a quick trip to Sainsburys we got home about 6pm.
Overall I feel that the week has gone very well, although somewhat tiring. The second week looks very busy compared to this week so I'm wondering how I'm going to cope with that. All the people are very nice here and the physios, OTs and all the physicians that we are under really know their stuff. I do feel that there does need to be a couple of sessions that are EDS/HMS specific because there are a lot of us around and sometimes it felt that we were dominating the sessions a bit and the people that had other things going on were getting a little bored of us asking HMS/EDS specific questions.