To London!

On Tuesday I travelled over to London with Emily because I had an appointment for a Doppler scan at UCL at 9am on Wednesday morning.  We managed to get a hotel nearby at Euston so we stayed the night before the scan.  Tuesday evening we went to the theatre to see Matilda.  The show was absolutely brilliant and I would recommend if you have the opportunity to see it then do! The kids were fantastic, very talented young people.  I would say that was one of the best shows that I have seen in a good while.  

The next morning I had the Doppler scan at UCL.  The staff at the vascular lab were very friendly and helpful.  I didn't have to wait long for the scan because I was the first appointment of the day.  It was rather interesting seeing the blood through the arteries on the scan.  I waited for the results to then take over to my second appointment of the day. 

The second appointment of the day was with Mr Christopher at Highgate Private Hospital.  It was a bit of a walk from the bus stop to the hospital.  The journey would have been slightly easier if we could do the underground but it currently isn't accessible.  Still we managed to arrive at the hospital with plenty of time spare.  While we were waiting for the appointment I took a quick nosey at the results of the scan.  It was rather interesting that the arteries in my left arm are significantly smaller than on the right side.  I'm wondering if that is partly why my left hand has the tendency to go purple and my fingers bright white.  

When I got in to see Mr Christopher we went over my options for surgery.  I already knew that I wanted to go for forearm phalloplasty as that has the best results.  Mr Christopher said that I would be having surgery with Mr Garaffa as he is quicker than him and because of my gastroparesis I need to be under as little time as possible because the anaesthetic will slow my stomach down even more the more that they need to use.  The surgery will be at the hospital of St John and St Elizabeth which is just around the corner from Regent's Park in London.  I did have the option of Slough but to be honest I haven't heard very good things about the Slough hospital.  

My next step is to get hair removal on my arm because the site where they want to take the graft for the urethra is as Mr Christopher put it, a forest and you don't want a forest in your urethra.  Ok then! He also set me a new weight target, my original weight goal was for metoidioplasty which he said he is a lot stricter with weight.  So instead of my goal weight being 12 stone it is now going to be 12 stone 9 pounds.  So from where I am I only need to lose a few more pounds! Once I am down to that new goal I just need my GP to fax the surgeons secretary. 

I emailed the laser clinic at Southmead hospital because they have done hair removal for lower surgery for a number of other patients before.  I didn't expect a response so quickly because I emailed them quite late in the afternoon and I got a response at 8pm! Unfortunately the referral has to come from the gender clinic which may slow things down a bit.  Also their waiting list is about 15 weeks from receiving the referral.  I had to phone the GIC this morning because as far as I knew I had been discharged but it turns out that I haven't been discharged after all.  This is good because if I had to be re-referred their waiting list is over a year! So I am just waiting on Charing Cross to phone me back.  

Another reason I need to see the GIC again is because my referral has expired.  Apparently they like the surgery to be done within a year of the referral being done.  In my case because of delays in chest surgery where I had to have way more surgeries than necessary, plus I had to lose a significant amount of weight. this meant my referral is very old.  My referral was done in 2010! I have seen the gender clinic more recently than that but they may want to see me again because I don't think I've seen them within the last year or so.  I'm really hoping that I can get an appointment soon because I've already had enough delays as it is.  

On the bus on the way from Highgate to Kings Cross a ticket inspector came on the bus.  They asked to inspect peoples tickets/passes to make sure they had paid.  I understand this.  When it came to us, we produced my Disabled bus pass which is a companion card as well which means that I get a carer on with me for free as well.  Well the ticket inspector person informed us that London does not accept this, only the disabled person can get on for free.  This is the first time this has come up before! We have used that companion card loads of times in London and my carer has always got on for free with me.  They told us to check the terms and conditions of the card but that we would have to appeal the fine.  Well the terms and conditions indicate that it may or may not be accepted outside our area and that we should check, we did check with the bus driver and they said it was fine.  We had got several buses just on this trip and been fine.  Really if they don't accept companion passes they really should tell their drivers that they don't! So now we have to take the time to appeal this fine and it is another stressful thing we could have done without! It's ridiculous that London do not accept them because to get a companion card you have a medical need for an escort.  So well done London, fining someone who is disabled and needs a carer, what complete assholes you are. 

The journey home was pretty uneventful on the train.  Now I'm really tired from the busy couple of days.  At least things are generally going in the right direction even if things might be delayed a little yet again...  I'm still feeling positive about things until I hear otherwise.  

Care issues

I have been receiving support since October 2009, this was originally 1.5hrs with  Second Step and 1.5hrs with National Autistic Society.  Over the years as my disability worsened I required more and more hours, I had to drop Second Step and now I'm up to 17hrs a week with the National Autistic Society.

Recently there has been a change in the rules requiring the NAS to provide everybody support times same every week.  This doesn't work if the client needs to go somewhere at a different time for whatever reason such as medical appointments that they have no control over the time it is.  If the person needs a different time they have to get permission to have it changed from the council.  Just utterly ridiculous.  For example I would like to attend a Trans group in Taunton, so I had to ring social services to pass on a message that I would like to get permission because 1) group is out of area, 2) It's not during my usual support times, 3) it's in the evening and 4) it's more than my usual hours for a Saturday.  Previously they would shift it around so I took the extra hours from another session.  Now they are a lot less flexible than before because of all the rule changes.  I used to have a autism specific social worker but now the new ones no longer case hold so this request will go through to the adult social work team who have never met me before for a review.  All this just to be able to go to one group.

The other new thing they are introducing is a phone clocking in and out system.  So the support workers will have to clock in and out using my home phone to do it.  Another pointless waste of time.  It's like they want to make it as difficult as possible to change anything or do anything.

I'm lucky to be getting any support at all as the only reason I get support is because of the autism act. Without that I would be getting nothing.  I'm not getting it because of my physical disabilities.

On dental surgery...

So for the last 17 years of my life I have been having frequent dislocations of my jaw to the point that I don't even count any more.  Well today I finally saw the maxillofacial surgeon at the Bristol Dental Hospital.  I arrived at about 15mins early and then the clinician was running nearly an hour late.  This is not unusual in a busy clinic, I should really have taken something to do while I waited, something to think about next time.

The surgeon I saw was a very nice chap and asked how long I'd been having the jaw dislocations, how often and can I get them back in myself.  For me luckily I can get it back in myself whereas some of his other patients are frequent A&E visitors, I avoid the hospital as much as possible.

I'd had an X-ray the last time I attended the dental hospital so he'd taken a look at that and said that my jaw joint was an abnormal shape.  He wanted me to go for a CT before a decision could be made about which surgery I was going to have.  It was nice to know at he'd had another patient with EDS who had surgery with him and came through ot well.   I mentioned to him when he'd asked if I'd had any other surgery about my top surgery and it turns out he'd worked at Charing Cross in the past and knew of the GIC team there, I swear most of my specialists have done a stint at Cahring Cross.

All in all it was a short but productive appointment.  I should receive a letter in the post about the next appointment and one for the CT scan too.  They are hoping to do the surgery once I've recovered from the lower surgery.  As it has already waited 17 years I'm sure a little while longer isn't going to do too much damage.

HMSA Residential 2014

During the weekend of the 25th-27th July 2014 I attended the HMSA residential at the Hilton Hotel at St George's Park, Burton on Trent.  This was my third HMSA residential that I had attended, the first two being at another venue.  This was the first time it had been at this venue.

I traveled up to Burton on Trent on the train from Bristol Parkway.  From the start there were little things that made the journey a little more complicated.  I arrived at the train station with a support worker to find that the lift that you need to take to get to the platform was broken, my support worker had to get someone to help us and we had to cross the tracks to get to the platform.  This is the first time this has happened at this station and I was glad that I had support to help me communicate with the train people.

When the train finally arrived about 10 minutes late the assistance people helped me on the train to find that the wheelchair space was full of luggage, despite there being about 4 signs saying that there should be no luggage in the space.  The assistance person had to then move all the luggage so I could get into the space.  The wheelchair space itself was incredibly small, it must be the smallest they could get away with legally.  I could only just squeeze my powerchair into the space.  On other trains I have been able to get it in the space and have extra room for the tilt! The design of this space was incredibly bad because not only was it tiny but it was situated opposite the luggage rack which was equally tiny.  This meant that there was more luggage than there was space so people were blocking the aisle and the door with all the luggage.

About halfway through my journey on the train I needed the toilet, not an unreasonable thing to expect to be able to get to the toilet right?! Well first I needed to get the luggage in front of the door moved out of the way then there was a very narrow corridor that I had to go through, swing my chair around and get it into the toilet.  There wasn't enough room to swing around easily and there were people sitting on the floor in the corridor blocking access to the toilet.  It would have been easier if the wheelchair space was on the end of the next carriage as I would then have only needed to get through the door and into the toilet rather than having to navigate the corridor as well, much easier.  I think this wouldn't have been too bad had I have been in a manual chair but doing it in a powerchair was next to impossible.

When I finally arrived at Burton on Trent I waited around for a little while for my taxi.  The taxi driver then brought out a ramp which was in two parts and was incredibly difficult to get my powerchair on. When we got to the venue it took three people to get my chair off the taxi because of the unsuitable ramp.  It required the wheels being in just the right place and trying to do that backwards is very difficult.  I only just got it on let alone getting it off.  My friend MJ gave me a card for another taxi company as I wasn't going to risk having that situation happen going back to the station and having nobody to help!

The venue was incredibly fancy and was a massive step up from the previous venue.  It was nice and open, light and airy.  My room was very nice and comfortable and I had a wheelchair accessible bathroom.  I couldn't have been happier with it and felt that it was very good value for money.  In the evening of the first night I figured out that I had managed to leave my phone charger at home, but luckily MJ lent me his the next day so I could charge my phone.

On the Saturday there was a timetable of talks that were very informative and I even managed to talk to my consultant from Stanmore about some problems that I have been having with regards to gastro stuff.  The thing that I really like about the HMSA residential is that they have talks from the leading experts in hypermobility syndromes and the associated conditions, and that the speakers often take time to talk to people individually outside of their speaking session.  It is great that they are so committed to helping people with hypermobility syndromes as we often come against resistance or aren't believed about our symptoms.  It's really nice to be in a place where other people understand what you are going through.

At the meals I did try a few things but all times I ended up rushing to my room and throwing it all back up so that possibly wasn't the best of ideas.  The evening meal was a three course meal, and it all smelled so wonderful that I really wanted to try some of it.  The people who were bringing the meals out got rather confused as the people with special diets weren't all told what they were supposed to be eating or what was safe.  This meant that it took quite a long time to get meals.  My dessert took so long that most people had already had their coffee by the time I got mine, as an apology I got given two puddings! Some didn't receive theirs at all, I only got mine because I kept asking for it when someone came around.  There were problems at the meals where people could help themselves as there were people taking food from the special food table that didn't have any special dietary requirements, which meant there was less for those people who did have those requirements.  That has happened at all three residentials I have been to.  As soon as I ate I felt really incredibly hot, there was one person on our table that was freezing the whole meal whereas I was just melting.  Amy lent me her fan that she had and that really helped me cool down, I really should invest in a cool vest but I just don't have the money at the moment, maybe some time in the future!

In the evening after the meal there was a party.  I wasn't really well enough to attend that but I stayed around long enough to see one of the volunteers had dressed up as a minion which was very cool! I think the wobbly wheelers were there again too doing a dance but I couldn't see very well from where I was sitting.  It was really nice seeing people have such a fun time on the dance floor. I even won a small prize from the raffle for the picture, I got a tiger one and I was glad that I won something as I don't usually win things so that made me smile.

On the Sunday I was starting to feel quite ill, probably from overdoing things and from trying to eat when I shouldn't have. A nice person saw that I was feeling quite ill and lent me one of their ice packs that did help me for a short time. I ended up going to the talks, having my lunch which then made me ill.  Luckily I managed to get an earlier taxi and an earlier train back home.  The railway staff at Burton on Trent train station were very helpful and got me on an earlier train even though I had a non transferrable ticket because I really did feel very ill.  The journey home was rather exhausting and I really needed to use the tilt on my chair but because of the restricted space described above I wasn't able to.  When I finally got home I was rather broken, exhausted but happy.  I spent the next few days just resting and smiling about all the happy times that I'd had over the weekend.

All in all I had a fantastic weekend.  I managed to buy a present for Emily from my friend Jo's stall, and some new child size wrist bands from Hannah on her stickman communications stall.  I would highly recommend it to anybody who is newly diagnosed or are trying to get a diagnosis, having all those experts in one place and all the highly knowledgeable people with the condition is so incredibly helpful.  I always come away learning a lot from the weekend.  I am really looking forward to the next residential already!

Gastrointestinal woes

 So for the last few months I have not been able to eat solid food and have been relying on Fortisip drinks to get the majority of the my calorie intake.  People who know me know that I have been trying to lose weight but this isn't a healthy way to do it.  Every time I eat solids I either throw it up or get really bad tachycardia, excessive sweating, stomach pain, nausea and other unpleasant symptoms.  The amount of apathy I have come across from medical professionals has been staggering, because I am still overweight they aren't overly concerned about the fact that I'm losing weight so rapidly and can't eat. I'm overweight still so therefore it really can't be all that bad!

In the time that my stomach issues have been playing up I have lost nearly 3 stone. Usually these flare ups only last a month or so but this has been going on a lot longer than usual which is worrying me. My GP originally tried to refer me to the neurogastroenterologist (what a mouthful that is!) at the Royal London Hospital but they are currently not taking referrals and I had been discharged from their care a couple of years ago.  Although I hadn't found them to be all that helpful before anyway, yes they got me on meds but their attitude was if I had another flare up that I should "manage it realistically", I'm not entirely sure what they meant by that.  Either way none of my previous flare ups had been this bad or for this long.

The second referral went to the wrong person, I ended up seeing an upper gastroenterologist at Southmead hospital who specialises in bariatric surgery, not really what I needed! There wasn't really much she could do for me so she recommended that I see a gastroenterologist. It went wrong somewhere in the choose and book system because the request was actually for the gastroenterology department but somehow that got changed to upper gastro surgery department instead.  It obviously was a waste of my time, energy and the upper gastro surgeon's as well.

So I then had to go back to my GP this time referring me to another local gastroenterologist who I found out specialises in Chrohns disease, again not really what I needed.  At least she ordered some tests that were relevant.  The Chrohns specialist gastroenterologist referred me on for a barium swallow which was rather disgusting and I haven't had the results from that so I'm not too sure the outcome of that yet. For those who don't know about the barium swallow you have to swallow this chalky sweet substance and they take pictures in the xray to see if things are getting stuck in the esophagus. I had been having swallowing problems for a while and my pills had been sticking around in my throat for hours.  So hopefully it showed something, although knowing my luck it will all come back clear.  Her usual course of treatment for what is highly suspected to be gastroparesis I am already on the maximum of all the medication that she would usually have prescribed, that doesn't bode well when your stomach is too full to complete an endoscopy 16hrs after last eating, whilst on the maximum dosage of the medication that is supposed to help.  I was told that my next options are tube feeding of some description which obviously is a last resort option.  She said she was happy for me to be referred on to a specialist in London who may be in the position to help me more than her.  She gave me a slip of paper to go to reception for an appointment in 6 months time but admitted that there weren't any appointments available in the next 6 months! So what I was supposed to do with my weight dropping like crazy for the next 6 months I'm not sure.

I had been in touch with a few friends on Facebook who recommended that I see the gastroenterologist at UCHL as they had seen her and said that she was good.  I phoned this specialist and was told that the waiting list was only 2 months and that they could get me in sooner if it was urgent.  I thought great! So I took the name, phone number and other vital details to my GP and their response was incredibly underwhelming.  They were very reluctant to refer on to the specialist in London because I was under the care of the local "specialist".  They had to really make sure that this was the right person this time because of the three previous failed referrals.  I had to do a lot of hand holding and persuading to finally get them to do the referral to UCHL.  It was only when I mentioned that I had ran in to Dr Cohen (Pain Specialist and Rheumatologist from RNOH Stanmore) at the HMSA conference, that Dr Cohen said that I would lose my place on my rehab course that I'm supposed to be going to at the end of August if I couldn't get my calories up that she finally yielded and sorted the referral.

I am now waiting to hear back from UCHL.  I explained the importance of getting this sorted ASAP as I'm losing a lot of weight and the above rehab course reason.  It has gone to the consultant but hasn't been input into the computer system yet so the secretary couldn't update me with what is happening.  The consultant was on leave last week and is now working through the backlog so I'm really hoping to hear from them in the near future.  This would have been pretty stressful for anybody but having the extra anxiety that being on the autistic spectrum brings means that the last few months have been very stressful.

It's countdown until Stanmore, only 19 days to go.  I wish this flare up would resolve itself because I've been waiting 16 months to get on this course! I really hope that I can see them soon!I will update you all when I hear anything more from UCHL.

Chest surgery and transition : Updated 08/08/14

In December 2004 I came out as trans and so began the long old process of transitioning. 2005 I saw a local psychiatrist in Brighton that referred me to the gender clinic in London.  They also tried to diagnose me with borderline personality disorder but that's a post for another day.  Unfortunately due to moving area I had to go through the whole process again and was finally seen in 2007.

2008 I had my first surgery in Cheltenham with Mr Bristol.  I thought he was going to do the double incision technique that most knowledgeable surgeons do on people who were the size I was.  This turned into a series of three operations, each time I was told that this would be the last time! I got so fed up in the end that I decided to go with another surgeon, this brings us to the end of last year.

After some people on a Facebook group had told me that I should seek a second opinion I finally did towards the end of 2013.  Once the gender clinic had sorted the referral it was January.  I had talked to Ginny Mr Yelland's secretary on the phone, she was very helpful and we managed to book in the consultation, pre-op and operation all at once.

The consultation was at the beginning of March at the Nuffield Health Brighton hospital.  It is a private hospital but I was there as an NHS patient.  The staff there were very friendly and there was free hot drinks and wifi.  The consultation went very well, Mr Yelland could see that I was unhappy with things as they were and how he could help.  We talked about the operation and what I could expect out of it, the risks and such.
A week before the operation I was at the hospital again for the pre-op.  I saw Mr Yelland again to talk it through and then I had to go for some testing.  Due to my EDS and POTS they did and ECG just to make sure everything was ok, and some blood tests too.  They had to shave a lot of patches of hair so they could stick the pads on but they were stubborn and didn't want to stay stuck!!  I presume that everything came back ok as I was able to go ahead with the surgery.

The day before the surgery we drove down to Brighton and stayed at the Hickstead Travelodge, this was the closest hotel that we could find that had disabled rooms, free parking and a reasonable price.  The morning of the surgery we had to be in the hospital for 7:15am. I wasn't allowed to eat anything after midnight and Liz the nurse recommended that I wake up about 5:30am to have a last glass of water and then nothing after 6am.  She said that would help me to not have a headache after the surgery.

We left the hotel at about 6:15am to make sure we got there in plenty of time.  We arrived probably a bit too early but we got taken up to my room anyway.  One of the many perks of having it in a private hospital is that you get your own room, I was also able to control my own medication which was great because some are very time dependent.  At about 8am Mr Yelland came around and drew on me with his marker pen that smelled of cherry.  At around 9am I was ready and went down for surgery at about 9:30ish.  The last thing I remember is talking to the anesthetist about my crummy veins while they were trying to find them, I vaguely remember them finding it, but not much after that.

A couple of hours later I was in my room again with a drip and my chest bound up with the dressings.  It was very nice to not have drains this time around, trying to go to the toilet when you have drains is a nuisance, always worried you are going to catch on them.   The nursing staff were great and came very quickly whenever I pressed the call button.  I didn't have a great deal of post-op pain so I didn't take that many painkillers just a little codeine and paracetamol as I'm sensitive to most strong painkillers.

By dinner time I was ready for food, I'd ordered the pork as it was gluten free.  It was amazing, hospital food usually isn't this good but I really enjoyed it.  My partner had some too so it wasn't just me being very hungry, the food really was good.

The next morning I was seen by Mr Yelland and he was happy for me to be discharged from the hospital.  We went back to the hotel for another night and then drove back to Bristol the next day.  I used a pillow between my chest and the seatbelt this made it a lot more comfortable for the drive home.

Two weeks later I went back to the hospital to get the dressings taken off, I am rather hairy so this was painful as it was really stuck on to my chest and it took a lot of hair off with it! I was completely amazed by how great my chest looked, I knew that Mr Yelland gets great results but at the back of my mind I was worrying as I'd had 3 surgeries already and wasn't happy so was worried that I wouldn't be happy this time.  My fears were unfounded it looked fantastic, I couldn't be more happy.  The treatment of the staff, the surgeon and everyone has been great from start to finish.  I would highly recommend this surgeon.  Nearly 10 years since starting transition I've finally got a chest that I'm really happy with!

Now for the pictures, well done for reading this far if you have!

 

Result from 3 surgeries with Mr Bristol in Cheltenham, front

Side view arms up

Side view 2 arms up

Side view arms down

All marked up before the surgery

2 days post op

2 days post op

At post-op appointment just after dressings were removed. 

2 weeks post op front

2 weeks post op right

2 weeks post op left

August Update:  I am including updated photos in this post rather than writing out a whole new post just to put a few pictures up.  So here are the new pictures 4 months post op and nearly 3 stone down in weight.

Stanmore 2014

On Monday 24th February I had my yearly catch up appointment with Dr Cohen.  It has been just over two years since my last rehab stay at Stanmore.  We've made a lot of progress in that time, I now have a powerchair which I hopefully soon will be allowed to use outdoors, I'm just waiting for an assessment to make sure I'm safe to use it outdoors. Things have been adapted in our flat so that makes things a bit easier around the flat.  We have power assisted doors into the building and into the flat, so I just have to press a key fob and the doors open, well when they work they do anyway! Last year we had an adapted kitchen put in, suited to my needs this makes using the kitchen in the wheelchair much easier.

Dr Cohen is really friendly and approachable, willing to listen and has a lot of helpful suggestions.  We had a chat and she is going to refer me to a bladder specialist at UCHL a urogynaecologist and I really need to get that looked at before I have any lower surgery (metoidioplasty).  She said seeing as I have a rectocele and a hiatus hernia that chances are that I probably have a cystocele/prolapsed bladder too.  I've had bladder problems for years, so it's good that it will finally be looked into.  My GP says it is probably stress incontinence but being someone in their late 20s it's kind of embarrassing having to wear pads and worry that you are going to wet yourself if you sneeze, cough, move too vigorously or can't get to the toilet in time.  

We also spoke about my swallowing troubles and she said that I need to get back to see someone from professor Aziz's team as they are the people who diagnosed the dysphagia.  It was only quite mild the last time that I saw them but this was a few years ago and it has got a lot worse since then.  Eating just really hurts and I often choke on food, drink sometimes even my own saliva.  

I spoke to Dr Cohen about my jaw problems, this is something that I've been having a lot of trouble with for at least the last 15-17 years.  Unfortunately Dr Cohen said that there really aren't any dentists in the UK that specialise in EDS.  There was one person that she could find that would be willing to work with patients with EDS and he is based in London, I don't remember the name but I will get it in my report from Dr Cohen.  The best placed service to help though is the community dental team as they are for people with needs above and beyond what a normal dentist would be able to cope with.  The problem is I've been trying to get referred to our local community dental team for a while now, Bristol Dental hospital tried to refer me but screwed up the paperwork and I was told that I didn't qualify for their service.  They said to get my regular dentist to refer me but they wouldn't do it unless I went in for another consultation, this wouldn't be a problem but they aren't wheelchair accessible.  They claimed to be wheelchair accessible but that would only be true if you were to have treatment in the waiting room.  The building was accessible but the treatment rooms aren't, the last appointment I was in my manual chair and I hoisted myself up the step and then my wife lifted the chair up, we could barely get in the treatment room though as it was so cramped.  So I'm hoping that we can sort something out soon as that was ridiculous.  

We talked about my second stay at Stanmore on the rehab ward.  This time it would be 2 weeks instead of 3.  I had been in contact with the lady who books it in as I had been given a date but it was only a few weeks after I am having surgery so it was a bit too soon as the course is so intense.  We are aiming for some time in mid June, that would give me 8 weeks to recover from surgery before going on the rehab course.  Just need to wait to hear back about that.  

All in all I felt that the appointment went well and although there is still a lot of stuff to work on we are making progress.  It isn't so much about curing as making life manageable with the right aids, appliances, pacing etc.  I'm next due to see her in another year, but I will probably run into her while I'm staying in June.  

Stanmore, 1 year on.

On Friday 5th April I went to RNOH Stanmore for my 1 year follow up appointment.  I still cannot believe that it has been over 1 year since I was in, the time went by very quickly. The last time I was there the ward was still closed after the flooding under the floorboards had happeend.  Now that has all been fixed and they have swapped the mens and womens wings around so it was quite disorienting.

The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way.  It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments.  It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too.  They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!

After the group session I had a one to one session with one of the psychologists.  I had seen her for a few sessions in the last week before I had left.  We talked about how I was doing and what I wanted to do in the future.  I expressed some concerns about ongoing needs going forward once I am discharged from there.  I was very concerned about the lack of knowledge locally, most drs don't know what to do with me.  We also talked about a possible second stay, 2 weeks instead of 3 weeks.  Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.

They have made some changes to the program since I was last there.  One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them.  I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.

The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no.  Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far.  I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.

'Moving Around'

This is the response that I got from my MP regarding the 'moving around', mobility component of PIP.  What do you folks make of his response?

Dear Mr H,

Thank you for contacting me about the Mobility component of PIP. I apologise this reply has taken some time to come, however I needed to seek clarification from the Department before getting back to you. I recognise that this is an area of some concern to many disabled people and I hope I can provide some reassurance.

First, I appreciate that there has been some confusion on the issue of qualifying for the enhanced rate of mobility by being able to walk 20 metres “reliably, repeatedly, safely and in a timely manner”. The change from 50 metres to 20 metres as the qualification for the enhanced rate of mobility is designed to provide greater clarification over how the assessment process will work. The 20 metres threshold is designed to act as an automatic qualification for the enhanced Mobility component because clearly if someone is unable to walk such a short distance, they are severely disabled. However, this change is not designed to preclude anyone who can walk 20 metres, being unable to receive the enhanced rate. The guidance has also been moved away from a focus on aids and appliances, to that of distance.

The key test for those who can walk further than 20 metres will be whether they are able to do so “reliably, repeatedly, safely and in a timely manner”. This therefore means that even those who can walk up 50 metres can still qualify for the enhanced rate Mobility component if for example, regularly walking over 20 metres would have an adverse effect on their health or leave them fatigued. I understand that, based on modelling that the Department for Work & Pensions has carried out, the number of people who score 12 points on Activity 12 as a result of this change from the draft assessment criteria is broadly the same.

I understand there is some difficulty including the term “reliably, repeatedly, safely and in a timely manner” formally in the regulations because defining this term legally in regulations is quite problematic, even though it is clear what this means for the PIP assessment. This term will be used as a guideline and it will also be in the contract with providers. However, the Minister for Disabled People, Esther McVey has also agreed to examine again whether this term could be incorporated into the regulations.

Finally, I would like to assure you that under PIP, the proportion of people who will receive both components at the highest rate will go up with PIP compared to DLA (20 per cent compared to 16 per cent), as will the proportion of people who receive at least one component at the highest rate (56 per cent compared to 55 per cent).  Ministers will also continue to spend about £50 billion on disabled people and their services. Moreover, the UK’s spending on disability-related benefits continues to be a fifth higher than the EU average which is a real testament to our country.

Thank you again for taking the time to contact me.

Best wishes,

Jack

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.

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.

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.  

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.

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.

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.

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.