Tuesday, 14 February 2012

Stanmore Week 2

Over the weekend I achieved most of the goals that were set by the physio and OT. I would say about 85% of the time I was good which is pretty good going for the first weekend. They were pretty happy with that anyway.

The journey back to Watford was pretty uneventful and it was a lot easier than the previous week because there wasn't as much snow hanging around anymore. So far we have been pretty lucky because we haven't run into that much traffic at the times that we have been travelling. Hope that it stays that way.

Day One:

The morning started with a weekend review on how we did. Overall the group had done pretty well with their goals and I had done not so bad myself. It was a nice catch up session and was a gentle start to the week. Week 2 is a lot busier than week 1, everyone seems to be wanting to write on my timetable for things that I have to do.

The second session was anatomy and healing, this I found rather interesting as it explained the mechanisms of healing and the difference between acute and chronic pain and that it was possible to have both acute and chronic pain present at the same time. This I always got confused as I find it hard to tell if the pain is acute or chronic because of the amount of dislocations and subluxations that I have, it is hard to tell if the injury is an old one that is still causing pain or a more recent one that is still going through the healing process.

The third session of the day was about goal setting and we talked about breaking down the goals into smaller more achievable targets this means that there is a better sense of achievement rather than looking at the overall long term goal and feeling like it is impossible. That it is ok if we don't meet our goals at first, that sometimes it may take longer than we first thought. We shouldn't set goals that are unrealistic otherwise we are setting ourselves up for failure. The goals have to be measurable otherwise how do we know that they have been achieved or not. Even small things like being able to remember to have regular meals they don't always have to be massive goals.

The afternoon physio was very good. We started working on my walking using the parallel bars. My physio has agreed that it isn't safe for me to walk without some kind of aid and even then only for very short distances. I should definitely use the wheelchair indoors the majority of the time and definitely when I am out of the house. We measured how far I could safely walk while using a walking frame and it is only 3 metres! I think that is safely within the limits of under 50 metres lol. I almost fainted on the physio just walking that short distance.

We are working on my shifting weight on each side and trying not to hyperextend my knees as that is one of my big problems. My worst leg is the right one, I am having trouble recognising when it is going beyond the normal range of movement, I need the physio to put her hand behind my leg and I stop when my leg hits her hand. I can do the length of the parallel bars and then my legs get tired and my dizziness gets really bad. Looks like walking is out of the question for the near future. The physio is going to send me home with a walking frame so I can do a little walking around the house to try to keep up my leg strength.

The afternoon session on foiling a flare up was also interesting. I think today has been the most beneficial so far. It was talking about establishing a baseline of activity that I can do wether it was a good or bad day and when I am in a flare up I should go back to that baseline and gradually pace back up again. My baseline seems to be doing my physio exercises, remembering to eat, take painkillers and self care routines. I find it hard to do even that sometimes but that is what I should aim for when in a flareup.

Day Two:

I didn't sleep very well last night. My muscles seem to be protesting about the amount of activity that I had done yesterday, I didn't get much sleep because my pain levels were very high and every time I was starting to drop off to sleep my muscles would spasm and wake me back up again. I have asked if there is anything stronger that I can take at night because even the 30/500 co-codamols aren't cutting it really. I'm hoping that tomorrow the specialist will approve something stronger, I don't need it for during the day as I can deal with that, it's when it interferes with my sleep that it bothers me the most. If I don't sleep enough it seems that the pain is amplified and so effectively sorting out my sleep also helps with the levels of pain that I have to deal with during the day.

This morning was stretch class, I explained to the student physio that I wasn't really feeling the stretches and all it was really doing is aggravating my knees which weren't the things we were supposed to be working on. I had to stay laid down for a while after the stretch class had finished because I was on the verge of fainting again. I don't know what it is about that place and stretch class but something is triggering my POTS there and I haven't quite figured out what yet.

I saw the OT again today and we talked about doing some stuff in the kitchen next week so I will have to find a good gluten/dairy free recipe that I can try out next week and bring the ingredients with me. The OT gave me some compression gloves to help with my proprioception in my hands because I keep dropping things and they are rather good if somewhat unattractive. They have been helping a little with the dislocations in my hands too, they don't stop them entirely but they help a little which is better than nothing.

We had introduction to relaxation today and we briefly went over things such as deep breathing exercises, making sure our posture is correct, methods of relaxation but not too in depth as it was only the introduction. We have another group about it tomorrow so I gather we will be covering it in more detail then.

I saw the physio again today, I need to make the most of the time with her because she is going away on holiday for my last week here and my notes will be passed on to another physio that I don't really know all that well. I need to remember to remind the new physio that they need to order the walking frame and also to get me referred to orthotics to see if they can maybe do better than what my local orthotics are currently offering me. We did some more walking with the frame and am still around 3 metres and then I get too dizzy, joints come out or my legs give way. I have a feeling this is going to be a very long process and even then I probably won't get back to my former walking days of being able to do 10k walks and so forth. It really does seem that a lot of people on this course formerly were very active people, like we all majorly overdid it when we were younger doing a lot of sports and now are paying for it.

Tomorrow seems a bit of a busy day, we have stretch, relaxation group, psychology session, physio and then sport in the afternoon. Got a feeling I will be very tired tomorrow so I'm really hoping that I get a good nights sleep tonight. At the moment the pain levels are around a 7-8 so still not great but not as much as the other nights where it has been an 8-9 and I couldn't sleep.

Day 3:

Last night was terrible! I was in so much pain that I needed to press the bell and I don't just press the bell for any old reason like some of the people in here. I have to be in a lot of pain to press the bell and make a fuss. They couldn't do much for me because any change in medication has to be approved by the doctors. At least it was noted down though that my pain was that bad.

I had stretch this morning as usual and it didn't go too badly. It didn't set off my POTS too badly today which was good. Some of the stretches have been aggravating the pain in my knees and I should probably be adjusting how I do them or not do them at all.

We had a relaxation session in the therapy room which was quite nice. I was a bit sceptical at first but it was a lot better than I thought it would be. They explained that should try not to fall asleep doing it because you don't benefit from the relaxation if you are asleep.

I was supposed to be seeing the psychologist before lunch, I had to rush down because the porters were running late and all that rushing around to find out that the rooms had been double booked and we had nowhere to have the session! It was supposed to be my first session as well so I was not pleased at all. She did arrange me another appointment for tomorrow morning but how awake I will be at 8am I do not know.

At lunchtime the doctor came to see me about my painkillers and at first we weren't too sure about what to about the night time pain. She figured out that because my pain wasn't being effectively controlled during the day by the time night time comes around the pain is so bad that the 30/500 ones weren't going to do a whole lot for it. We are going to try me taking the 30/500s all day rather than just the dose before bed and see if that helps with keeping it under control rather than letting the level build up over the day. I hope it works because I'm not sure what else I can take without it setting off a whole load of horrible side effects.

In the afternoon I had a session with my physio and we looked at a band that I have to stretch so that we are working on the muscles between my shoulders to help with the shoulder dislocations. I'm starting to get quite a few exercises that I have to do and I find it difficult to remember all the different ones that I need to do!

After physio we had sport in the hall and I played a lot of badminton but we were careful about how I went about it. We played doubles instead of singles so we only had half the court to cover. I didn't dislocate or sublux my shoulders this week and we took regular breaks so that was much better than last week where I didn't take any breaks at all and I kept subluxing my right shoulder.

This evening my mum came to visit which was very nice. It is nice to see someone who isn't in the hospital rather than constantly having hospital talk all the time. We were chatting about her coming over to bristol this weekend to view a flat near the city center. It looks rather good and I hope that it is suitable, the guy really is desperate to get into london again so much so that he isn't worried about viewing her flat.

Tomorrow looks like it is going to be a rather busy day. 8:00 psychology, 9:00 stretch, 9:30 OT, 10:30 physio, 11:00 Nutrition group, 13:00 work support, 15:00 Swimming. I am going to be very tired tomorrow. I'm starting to think about the goals that I would like to set for the weekend as that will be covered in my physio session. It will be my last session with my physio tomorrow as she is going back to new zealand for her holiday, my file will be handed over to another physio that I do not know for the last week.

Day 4

This morning started with my first session with the psychologist. It was really helpful to have a chat and get some things out of my mind. Being on this rehab course has got me thinking that maybe going back to uni in September full-time might not be such a good idea, that going part-time for the level 3 modules will mean that I'll come out of uni with a good grade rather than just passable. I know that if I go straight into the 3rd year full-time that I will crash and fail the whole thing and make my health worse in the process. Just need to find out what my options are.

Stretch class went reasonably well, I made it most of the way through before I became too dizzy to continue. I also managed to sublux my right shoulder a few times during it. I haven't really been feeling the stretches and when I finally do it is beyond the normal range of movement.

I had a session with the technician on the computer looking at how I sit at my desk, pacing my computer/studying time. I need to get some wrist rests for the mouse and keyboard. The compression gloves will hopefully help with holding my hands in place while I'm typing. I've been told to wear them 10-15mins every hour, I try to remember but don't always manage it.

Physio session we were talking weekend goals. I found it a lot more difficult to come up with goals this week. I need to have a look what we decided because I was so fatigued, dizzy and brain fogged I forgot what I agreed to! It was decided that I should probably not do the standing stretches in stretch class and maybe take it a little easier with the walking practice on the parallel bars because it has been setting off the pain in my knees and ankles. Need to go back to baseline and build up very slowly from there.

The nutrition group was stuff that I mostly knew already but I thought I would sit through the talk anyway. I guess it would have been a good talk if you didn't know much about healthy eating. It covered the psychological side of eating too which I suppose was helpful.

During lunchtime the heating on the ward was still playing up and it was full blast so the ward was so stuffy it was setting off my POTS. I fainted not long after having lunch and this completely wiped me out.

Despite the fainting at lunch and the rapid heart rate, fatigue, pain etc I still went to the work support group. I spent most of the session with my feet above my head lying on the floor. We talked about access to work, legislation, benefits and so on. Didn't take too much in though as the room was spinning.

I was supposed to go to swimming but I was on the verge of fainting again so I thought it was best that I didn't go. It was a good idea because I did faint again and ended up needing to lay down for the rest of the afternoon and early evening. Once I'd snoozed for a little bit on the bed with my feet above my head I was feeling a bit better.

Day 5:

The morning BP and pulse check made me feel ill again. At least I got a lot more sleep. The pain hadn't built up yesterday to the point where it was unbearable at night time so I think the doctor was on to something there. I really didn't want to get up in the morning, 6:30 comes around way too soon!

We had a relaxation session first and we were doing visualisation techniques. I found it very hard to relax enough to benefit from it. I preferred the muscle relaxation one with the guided talk, I found I relaxed more in that one. I was having trouble with the noise outside and the ticking clock, it was winding me up so much I couldn't relax.

The last session of the week was with the ward manager. There had been a leak in a radiator and when they pulled up the floorboards in the ward there was a whole lot of water underneath the floorboards. The floorboards were rather rotten too. The leak that I had been complaining about coming from the bottom of the toilet was waste water. They had to close the disabled toilet on the mens wing. The estates people are having to rip up all the flooring, replace it, put in a new heating system, fix the bathroom. This sounds like it is going to take a long time, the estimate is 4-6 weeks but probably will end up longer than that. They aren't taking any new patients for the rehab course next week and people currently on the course are going to be on another ward until it has been deemed safe for them to use the rehab ward.

Next week is going to be interesting because I'll have a new physio and we will be in a completely different ward. Luckily the ward manager has convinced the hospital to keep the same nursing staff with us so at least that won't change all that much. The routine will be pretty much the same just in a different part of the hospital. I hope it doesn't take too long to sort the ward out because I know the waiting list is long and there will have been patients that have been postponed because of all this work that needs doing.

Monday, 6 February 2012

Stanmore Week 1

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.

Day 1:
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.

Day 2:

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.