Wednesday, 10 October 2012

Autonomic Clinic (NHNN) follow up appointment

This morning we left Bristol to go to London for my appointment at NHNN autonomic clinic.  The journey started off well but soon started going wrong.  The train from Bristol Parkway had no functional disabled toilets and this is not the first time it has happened on that particular route.  This meant I had to try to get myself into the tiny regular toilet.  I couldn't hold it in for the whole 2hr journey.  We should have got to Paddington at 13:00 and was about 30mins late.  The taxi ranks are a bit out of the way!  Luckily we had hospital transport booked so we didn't have the stress of navigating Londons public transport.

The autonomic clinic were running about 40mins late.  The waiting room for the clinic was so hot I thought I was going to faint. We had to wait outside where it was cooler.  The doctor I saw was very nice and I could actually understand what he was saying, compared to the last doctor who spoke way too quickly (One I nicknamed Dr Talks Very Fast).  I spent a lot of the appointment explaining my symptoms and answering a lot of questions.  I've already forgotten a lot of what was said, good thing they send a report out.

The outcome of the appointment was pretty much what I was expecting.  They diagnosed me with pots and syncope.  They gave me a prescription for fludrocortisone (florinef) to hopefully help with the symptoms.  I also have a followup appointment in July 2013.  I guess now I just wait for the report.

All in all a stressful but successful day.

Sunday, 9 September 2012

HMSA Residential 2012

Friday we left Bristol to head up to Hothorpe Hall in Leicestershire for the HMSA residential.  The journey to the residential was pretty slow taking a lot longer than it should have done.  Being stuck in a car for hours in 30 degree Celsius heat is not good for someone with POTS.  There had been an accident on the M5 and what should have been a 2.5hr journey became a 5hr journey.

The residential started off well with a talk by Isobel Knight talking about her books; A Guide to Living with Hypermobility Syndrome: Bending without Breaking and the one that is due to come out next year.  She also talked about Bowen Technique and her work raising awareness of HMS/EDS-HM.  It was a brilliant introduction to the conference and the themes of moving forward and staying positive.

Saturday started with a talk from Dr Andrew Lucas (Andy) the Consultant Lead Psychologist from the Rehabilitation Programme at RNOH Stanmore.  He talked about his role in the psychological aspects of the rehabilitation programme.

After Andy was the talk by Dr Helen Cohen, Consultant in Pain Management at RNOH Stanmore also.  She did a talk about the pain mechanisms in hypermobility, the chronic pain cycle and how they attempt to deal with it at Stanmore.  It was a very interesting talk about the role of pain as an evolutionary defence.  Parts of the talk were the same from the last residential but there were some new points in there so it was worthwhile sitting through it.

The next talk was from Julian Walker of the Genetic Alliance about the importance of user participation and the role of the Genetic Alliance.  I had heard of the Genetic Alliance before but I was unsure of what they did.  I was surprised that they represent over 150 charities and they are involved behind the scenes to do with policies regarding genetic conditions.  Having a look on their website they have a lot of information available.

Rosemary Keer's talk was about Joint Protection, exercise and HMS.  She talked about the structure of joints and the importance of correct posture and the negative effects of incorrect posture.  She spoke about joint control, proprioception, exercises and braces, splints and supports.  This was the viewpoint of a physiotherapist and she used plenty of practical examples getting the audience to try different exercises and stretches.

I missed the majority of Dr Jane Simmonds's talk as I was flagging a bit and had to go lay down.  The conference room at Hothorpe Hall was very hot! Several people were flopped on the floor during a lot of the talks.  I kept having to lay down just to stay conscious.

Dr Jessica Eccles (Clinical Fellow in Psychiatry, Neuroscience, Brighton) did a very interesting talk about brain structure and the prevalence of psychiatric symptoms in hypermobile individuals.  This was probably the talk that I found the most interesting as some of the other talks were about stuff that I had heard a lot of before.  She mentioned that there seemed to be a link between Autism, ADHD, Dyspraxia and hypermobility.  This is something that a lot of us had observed anecdotally in the groups and on the forums that there were quite a few people that had both HMS and an ASD.  It would be interesting to keep an eye out for future research regarding this.

Before the party there was a wheelchair dancing display by the wobbly wheelers with an appearance by Dr Hakim as a Robot.  It was a lot of fun and I thoroughly enjoyed it.  In the evening was the 20th anniversary celebration party! It was a lot of fun! There were a lot of people in wheelchairs dancing and we even had a wheelchair conga line that was 14 wheelchairs long.  I laughed so much and it was refreshing to just have some fun.  Even the medical professionals joined in with the fun and one of them got accidentally walloped in the face and came out with a fat lip, poor lady had to go do a talk today at the EDS-UK conference! I'm sure plenty of pictures will appear on facebook or the internet in the coming weeks.

Sunday started with a talk by Dr Adam Farmer (Consultant Neurogastroenterologist) about the need for funding of gastro issues in hypermobility syndromes.  It was interesting to have the gastro issues explained in an accessible way as a lot of the information out there tends to be aimed at other medical professionals.  It helped me understand my own gastro issues a bit more.

The wonderful Hannah Ensor, Author and creator of the stickman products and Patron of the HMSA for children and teens.  She talked about adapting to life with HMS and her involvement with the HMSA.  I thoroughly enjoyed it, and made me think about my own thoughts about HMS.

Eloise Summerfield did a talk about medication and answered a lot of peoples questions with regards to medication.  It was very interesting about how the drug companies measure the effectiveness of pain medications, that this is measured by the amount of people who experience 50% pain relief not 100%. It was  surprising which medications came top of the chart with regards to effectiveness.  She reiterated what a number of the other professionals had said about not going on strong opioids such as morphine as they don't do a lot for chronic pain and come with a lot of side effects.

The event ended with a talk from Dr Alan Hakim about patient experience survey results.  There were a few pleasant surprises in there but much of it wasn't a surprise with regards to the delay between first presenting with symptoms to actually getting diagnosed was for a lot of people 10+ years.  He talked about how services are commissioned and emphasised the need for regional multidisciplinary teams rather than having one super centre based in London, that there needs to be a lot more change at the local level.

The slides from the presentations will be available from the HMSA soon and they were also filmed and the DVD will be available to buy too.  There are also slides and a DVD from the 2010 residential available.

All in all I had a fantastic time while I was there! Even though I felt like death warmed up I still had a wonderful time.  I would like to thank everyone who put in the hard work to make the residential fantastic and I look forward to the next one.

Thursday, 12 July 2012

Autonomic/POTS Testing at NHNN

From the 20th-22nd June 2012 I went to the National Hospital for Neurology and Neurosurgery in London for testing to find out why I have been experiencing the sympoms that I have. The tests are designed to trigger the symptoms so that they can measure what was going on, so I was bound to feel dreadful after them which I did.   The testing was specifically for POTS (Postural Orthostatic Tachycardia Syndrome) and this is my experience of the testing.  

Day 1

Wednesday mum and I got the megabus to London and then the bus to Holborn. For some reason TFL told us to get off at Tottenham Court Road to get to NHNN. Stupid TFL, luckily a man on the bus told us a better way so the journey went pretty well, and we got to the appointment on time. The staff at the day care center were really nice, I quite liked Paulo one of the nurses who made sure that everything went smoothly.

The first afternoon of testing I had to have the exercise test, this was cycling whilst lying down. The scientist increased the difficulty after every 3mins. I managed to do the whole 9mins but the last few minutes my knees were quite sore. They took a lot of readings getting me to lay, stand and sit for 5mins at a time.

After the main tests I was hooked up to a 24hr BP and had to write how I felt each time a reading was taken, this was every 20mins sometimes less if there was an error. The band for the BP got very tight and left bruising on my arm. I was glad that it was only once an hour during the night otherwise I wouldn't have got much sleep. I woke a few times but not long enough to disturb my sleep a great deal.

Day 2

The next morning I went back to the day care center and there was some slight confusion about what I was supposed to be doing as they hadn't been informed that I had tests at 2pm that afternoon. The tests I had that afternoon were rather horrible. First they tested me lying down, after that they took readings while I did breathing exercises (long deep breaths then fast shallow ones). I had a cuff on my right arm, one on my finger on left hand and things on my chest. My finger went a rather deep shade of blue. They put my hand between some icepacks, my hand and half my fingers went blue, the fingertips went bright white, it ached in my bones.

Next came the dreaded tilt table test. The blood pooled in my feet pretty quickly and extended quite far up my leg. I felt rather sick quickly but I managed to last the whole ten minutes before I nearly fainted. My feet had turned a deep shade of blue and by that point so had my hands. Towards the end I came very close to fainting, luckily they stopped it when they saw my BP go down. It took a good ten minutes to recover with my feet above my head. They were supposed to do testing with my blood but they couldn't get the cannula in my vein, I did warn them that I have difficulty getting blood out.

Day 3

The third day started with a meal challenge which is complain with extra glucose that I had to drink. It was sickly sweet and made me quite nauseous. I had to lay there for about 45 minutes while my stomach digested it. They took measurements during this. I had a lot of wires on me and the blood pressure cuff, the good thing about having a bendy neck is that I could see the screens behind me. Obviously I'm not trained to read them but I found watching them quite calming. After the meal test we then had to do the testing that couldn't be done the day before because they couldn't get blood out. I had to hold on to hot water bottles and this helped a little with getting the cannula in my arm. They then tilted me up and left me there for 10 minutes. They took a sample of blood afterward, I can't remember what they were testing for.

After that I was done for the day and could go home early. Luckily the hospital had arranged transport so we didn't have to get the bus back to Victoria. Only problem with finishing early was that we had a long time to wait around because our bus wasn't until 7:30. I finally got home around midnight.

All in all the stay went well and I hope that they figure out what is going on with me. Now I just wait for the results and go to my follow up appointment in October. I will put up another post once I find out what is going on.  

Thursday, 24 May 2012

Ehlers-Danlos Awareness Month

This month is Ehlers-Danlos (EDS) Awareness Month.  I was diagnosed with the hypermobility type of EDS in 2009. EDS is a connective tissue disorder it can affect many systems including the gastro-intestinal and autonomic systems.  I am currently awaiting testing for postural orthostatic tachycardia syndrome (POTS) which is a form of autonomic dysfunction.  EDS can cause widespread chronic pain and fatigue, but to most people you wouldn't realise it because it is a hidden disability and unless we happen to be using crutches, a wheelchair or other aids it is not noticeable to the average person this can lead to people being wrongly accused of making it up to gain access to strong painkillers.

A lot of doctors do not know about EDS and have not learned much about it since leaving medical school this means that a lot of people go undiagnosed for a very long time.  I myself started to get dislocations at an early age but wasn't diagnosed until I was 25.  This seems to be a common theme among EDS patients who according to the poll on the HMSA website 53% didn't get diagnosed until 10+ years after the start of symptoms.  Many have gone through several diagnoses before seeing someone who was knowledgeable in the condition.  There are very few clinics in the UK that specialise in hypermobility syndromes and the ones that are available are incredibly over subscribed.

My hope for the future is that more doctors learn about EDS and that less people have to go through the long journey to getting diagnosed.  The two charities HMSA and EDS-UK are doing great work to increase awareness of these conditions.  I am incredibly grateful to the HMSA and my friend Lisa as without their advice and guidance I would not have got the diagnosis and possibly would have had many more years trying to figure out what was wrong with me.  This years HMSA conference theme this year is "Moving Forward and Staying Positive"  so hopefully there will be a lot of positive information coming out of the conference this year.

State of me nearly 3 months post Stanmore

I thought I would take the time to update everyone on my progress since leaving Stanmore almost 3 months ago.  I have my 3 month follow up appointment and there are a few things that I need to rectify before that appointment.  I have to say that the last few months have been rather tough health wise so I haven't done as well as I would have liked to.

The first few weeks following Stanmore all I wanted to do was sleep.  Being ill with a glandular fever type illness didn't help matters.  I have found it very difficult to integrate what I had learned at Stanmore into my life here at home, it is not out of lack of motivation, somehow I find myself over focusing on other things and forgetting to do important things such as take medicines, eat and go to bed at reasonable times let alone all the extra things I need to do such as physio and exercise.  I need something/someone to prompt me gently to do these things otherwise they will not get done.

This year I have regained the weight I had lost over the last few months of last year which I am disappointed about but not surprised.  To have my lower surgery and the last part of my chest surgery I need to get my act together and get down to 12st and I'm currently just under 15st so I have a long way to go with that, the shame is that I actually got rather close to that goal weight but let it all slip away.  But this post isn't going to be a pity party, it is to clear my thoughts and figure out how to proceed.

My goals on my target sheet are as follows:

- Create a daily routine - This is something that I am really lacking in now that I don't go to the university anymore. I have no structure to my day and no reason to get up in the morning.  I wish I were able to work but I just am not able to right now, but that doesn't give me an excuse to stay up late and lose half the day because I didn't get up until nearly midday.  My expected level is to set up a computer programme and set up a timetable so this one will be achievable before I go back so that is now on my to-do list.

- Eat breakfast - Something that I do remember to do on the days that I'm up in time for breakfast so if I get my sleeping times in order then this should fall in line pretty simply.  It is usually lunch that I forget, I should eat smaller meals and often to help with my stomach problems and pots.I just don't remember to eat that often so it will have to be something that I have to timetable in to start with until it becomes habit.

- Uni study - This is one goal that I really have down which is good.  I am in the process of signing up to open university, my credit transfer has gone through and I just have to send in my disability form and register for the module that I want to take this year.  The module I'm taking is a 60 credit one so is half what I am used to taking so I'm hoping that I'll be able to cope with that amount.  I need to talk to someone about funding as well as I'm not entirely sure how that is going to work.  For this goal I am in the most favourable outcome so that is rather nice!

- Exercise - I haven't been that hot on doing a lot of exercise lately I must admit, a lot of days I forget to do my physio let alone exercise as well.  The expected outcome for this goal is to carry out exercises once a week so not too much expected so I can at least mange sorting that out in the next few weeks.  I now have a  trimbike that my mum gave me and have started using it today. Luckily my joints seem to be okay with doing it but my heart rate doesn't shooting all the way up to 150bpm

- Swimming - I don't think I have been swimming since I have been back home from Stanmore which is a real shame as I have some physio exercises that I could do in the pool and walking around in the pool will help my legs somewhat.  I am planning on starting to go to the disabled swimming at the local pool on a Thursday morning as they heat up the pool so it is warmer than it normally is.  My joints really ache in the normal temperature of the pool.  My expected level is to go swimming once a fortnight - once a month which is more than achievable.

On the whole the goals that I was given weren't all that difficult so I'm not entirely sure why I haven't been able to get my head in the right position to be able to achieve these.

Plan of action

- Be up and out of bed before 9am
- Do stretches after breakfast
- Set up reminders for all meds
- Take all meds
- Eat 5 meals a day of around 360 cals each
- Drink at least 3 bottles of drink a day (20oz water bottle)
- Do physio every day
- Bed by 11:30pm
- Swimming at least once a week

Once I have those few basics into my routine then I will add other things into the mix.  I don't want to try and change too many things at once otherwise I'll never do any of them.

My follow up is 8th June so I better get myself going with these things!

Appointment with Dr Cohen in November so that gives me a chance to get a lot of things back on track including the weightloss.

Monday, 30 April 2012

Stanmore Week 3

Day One:

We returned to Stanmore today and went to the rehab ward, we were told on Friday that we would be helped up to the new ward but when we arrived the porters made a big fuss about it. Eventually a porter brought me up to the private ward and I got shown my room. It is rather fancy! I have a tv, mini fridge, own sink and only have to share the bathroom with one other person. Very nice.

The first session of the week was the weekend review, overall we all did pretty well with our weekend goals. I did about 85% of mine so I consider that to be success. It was rather odd without the others who had left at the end of last week. It is going to be a rather strange week this week because there aren't going to be any new people this week.

Right after weekend review we had anatomy and healing. I'm not entirely sure why we were doing the same session that we had the previous week. Seemed like a waste of time. It didn't really help the people who were doing it the first time. We didn't really learn anything much new in that session.

After lunch I had cooking in the OT kitchen with Marta. The amount of times that I needed to be stopped because my posture was bad was incredible. Kept reaching for things behind me and going beyond normal (ROM). Definitely need to work on how I do things in the kitchen. She was really unhappy with the way that I get things out of my bag on the back of my wheelchair.

I had a chat with the OT about how the weekend went and how things were going. We decided that with my joints being as bad as they are that until I have the correct orthotics that we would be better off concentrating on making using the wheelchair safer. We are going to work on the shoulders a lot more, still work on the standing but not so much the walking side. The walking has been making my ankles, hips and knees a lot worse.

We had a session on pacing again which was another that we thought why bother? It was only third week people there and we already knew the principles. It was good for a refresher for this and have a think about our priorities rather than covering the whole theory of pacing again.

Day Two:

Today is pretty dead for me. I think they try to shove everything in the first two weeks so that people who are only around for two weeks get the whole deal but then the third weekers get left with not a lot to do.

Stretch went ok this morning, I get halfway through before the dizziness hits. It is normally after doing the stuff on the beds that I get really dizzy. I have been doing some of the standing stretches too which is some progress on not being able to stand at all for more than 5 seconds when I came in!

During physio we worked on sitting on a gym ball and catching a ball. Seems my catching skills aren't too bad, a lot better than the physio was doing. Will have to work on that while I'm at home. During our session I kept hearing the sounds coming from a wii. One of the other patients was playing wii as part of her physio! I really want a wii again and kind of regret getting rid of ours, good thing that they are so cheap. They use them here for practice with balance as it tells you if you are placing too much weight on one side or standing too far back. I finally got the physio to refer me to orthotics for my ankle braces that I need!

I had another session with the psychologist today and it really got me thinking about university and that I need to go part-time not just because I want to but because I NEED to. There is no point me carrying on when I am coming to resent doing the course and I am desperately struggling to keep up and failing miserably. I'd been thinking about it before I came here but now I really do need to take it seriously.

It's rather nice to have my own room and television because I can watch what I want rather than the rubbish that the others want to watch. I'm really not that into the soaps and quiz shows which is pretty much all the others wanted to watch. These tvs have freeview so I have a nice selection of channels to watch. Happy.

Day 3 - 5: 
These days were pretty dead for me as I didn't have many extra sessions built in so I had a lot of free time.  The Thursday we had pizza and blimey was it a big order! It feels weird to be going home but at the same time I'm really glad that it is over now.  I have set my goals for the next few months leading up to my follow up appointment and we are going to concentrate on making it safe for me to use my wheelchair.

Thursday, 8 March 2012

A long hard day in London....

Yesterday morning we had to get up about 3:30am to get the university in time for our 4:45am megabus to London. The journey on the megabus itself was pretty uneventful, even though we left so early we only just about made it in time to the wingate institute for my 9:30 appointment.

I was at the wingate institute for a gastric emptying test which is not difficult just incredibly boring. You have to eat an egg sandwich that contains a marker which shows up in breath and so I had to blow into a bag every 15mins for 4hrs. I played a lot of bejeweled between blowing in bags.

After the gastric emptying testing we had to go over to the new royal london hospital. It is very shiney! Rather confusing and easily lost in there though, the signs go so far then just disappear.

The next round of testing was certainly more than "uncomfortable" which is what it said on the leaflet. The first test the oesophageal manometry was horrible, they put a tube down the nose that goes down the throat. I have a hypersensitive gag reflex so this test was very difficult for me. They were testing my swallowing and I had to swallow lots of water and then some biscuit. The numbing spray they used didn't do a whole lot for me so they had to use a fair bit but even then it wore off after a few minutes.

The second test was to put a different tube down my nose and throat which was to measure the reflux over 24hrs. They said that it would calm down after a while and I wouldn't notice it. We left the new royal london hospital and decided that getting the megabus back wasn't such a good idea and I'm glad that Em brought up the idea of getting the train. The journey from whitechapel to paddington took us about 2.5hrs, that's longer than it took to travel across the country. On the bus the tube was constantly moving and I was gagging on it and trying really hard not to throw up.

When we got to paddington finally we were lucky that the train wasn't too expensive and the assistance people were really great about us turning up at last minute. The train from london was ok except I had to finally give up and take the NG tube out because it was so painful and made me feel so ill, I really wanted to leave it in but I just couldn't. I had fought to keep it in for 4hrs and I just had no energy left in me to keep on going, it was just too much.

We finally got back to Bristol Parkway just before 10pm. It was freezing out and we thought great only 15mins until the bus comes so we could go to UWE pick the car up and go home. The bus didn't turn up, I had to ring the bus company to find out why and they said that it had broken down and that we had to wait for the next bus at 11:05 at this point we were just too tired and cold to hang around. We could have got on another bus except the bus company had sent around 2 inaccessible buses in a row! The bus company that had a wheelchair symbol on it's timetable indicating that they were supposed to be wheelchair accessible! In the end I rang the bus company back and told them I would get a cab and charge them for it.

We got home at about 11pm so we had been out for 19hrs. All in all it was a pretty rubbish day and one I do not wish to repeat any time soon. I shall be writing letters of complaint to both bus companies.

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.

Tuesday, 31 January 2012

MPs response to Welfare Reform bill emails I have sent

Dear Mr H,

Thank you for your emails about the Welfare Reform Bill.

I realise that you may be concerned by some elements of this legislation but I can assure you that the Government remains committed to supporting the vulnerable and providing support for all those who need it. Members of the House of Lords voted against three reforms for ESA, to which I shall respond below.

One Year Limit on contribution-based ESA - The one year limit on the length of time that people can receive contribution-based Employment & Support Allowance (ESA) is an important measure designed to ensure that people make the journey back towards work. It strikes the right balance between restricting access to contributory benefits and allowing those with longer-term illnesses to adjust to their health condition and surrounding circumstances, and it is double the length of time allowed for contribution based JobSeeker’s Allowance (JSA) in recognition of that fact. Furthermore, the one year time limit is not an arbitrary figure, it is in line with similar limits to other countries around the world including France, Spain and Ireland. It should also be noted that it is only the contributory element of ESA that will be time-limited, not income-related ESA.

ESA ‘Youth Rules’ – Some Members of the House of Lords also rejected Government plans to remove the automatic qualification that children with disabilities receive to contribution-based Employment & Support Allowance (ESA) ‘Youth’. However, this change was not made with the intention to reduce the support available to children with disabilities when they progress to adulthood.

The three principal reasons why the Government has instituted this change is because it simplifies the benefit system by abolishing a category where the majority of claimants would be entitled to income-related ESA. This is paid at the same or a higher rate for many people. Secondly, this measure aligns the treatment of ESA 'Youth' with other groups claiming contributory ESA to create a consistent system in the run up to the introduction of Universal Credit, the Government’s single integrated welfare payment. Thirdly, entitlement to income-related ESA will help ensure those recipients automatically qualify for passported benefits, such as free NHS prescription charges, instead of having to make a separate claim.

Time Limit Exemption on contribution-based ESA for Cancer Patients -The final measure that Peers voted on was a proposal to exempt cancer patients from any time limit on contribution-based ESA, which is slightly unnecessary as the vast majority of cancer patients would be placed in the ESA support group and or choose to be in work.

The evidence put forward by various oncologists and other experts shows that for some people, being able to continue working or getting back into work after diagnosis is an important part of the recovery process. People should not be confined six months out of work if that is not appropriate for them. Similarly, there is also a need for some patients to have full financial assistance at what is a very difficult time for them and their families. In those cases, the Government has been quite clear, people shall continue to receive all the help that they need.

The Government is now consulting on proposals to improve the way it assesses individuals undergoing treatment for cancer. Under these proposals it is worth noting that more people would be placed in the ‘support group’ (the group where people receive unconditional support) than under the previous system. This is because Professor Harrington has accepted the advice of Macmillan and other cancer charities that some treatments, notably combined chemo-irradiation, can be extremely debilitating and most people undergoing this treatment should also be placed in the ‘support group’.

I hope that this clarifies why the Government is making the changes that they are and that it reassures you that this will not undermine the support available to the disabled and people who genuinely need support.

Thank you again for taking the time to contact me.

Best wishes,


Thursday, 26 January 2012

My MPs response to #bedroomtax

Here is my MPs response to the #bedroomtax email that I sent him.

Dear Mr H,

Thank you for contacting me about changes to the Housing Benefit system.

The Government does not aim to reduce the levels of support for the most severely disabled people and ill people but it is important that it ensures it is well targeted, fair and goes to the right people.

I must first say that it is absolutely not fair that we have one million spare bedrooms being paid for by Housing Benefit. It is not right – many taxpayers would never be able to afford a spare bedroom in their properties – nor is it fair for those living in overcrowded or poor housing conditions. That is why I welcome the Government’s proposals to deal with the issue.

However, I also welcome the Government’s reassurance that it is not its intention to put something in place that would have a disproportionate impact on disabled people. If someone has had their property adapted because of their disability, it makes no sense to move them to a different property and spend more money on costly adaptations. The Government has said that it will ensure that disabled people are protected in the best possible way.

I understand that you are concerned that these measures will impact on the most vulnerable. That is why in the Budget the Government announced an additional £10 million in 2011-12 and an additional £40 million each year from 2012 - 2015 in the Additional Discretionary Housing Payment, to allow local authorities to provide extra support where it is most needed.

I want to assure you that those who are genuinely sick, disabled or retired have nothing to fear. This Government does not regard caring for those in need as a burden, but as a proud duty.

Thank you again for taking the time to contact me.

Best wishes,