Friday, 8 August 2014

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!

Thursday, 7 August 2014

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.