Saturday, 19 November 2011


Where we live all the flats except for the two ground floor flats have a garage. We have parking spaces assigned to us because we don't have a garage. The spaces are numbered yet people keep stealing our space, normally one of the other flats or people visiting them. We have ONE car, if they want to have more than one car they can sodding well go find somewhere else to park it, or y'know actually use the garage to park the car in instead of as an extra junk room!

I need to contact the council to get our space changed to a disabled space because our neighbour has a big white van and that leaves us very little space to park our car and still have room to get my wheelchair round to the passenger door.

This evening when we got back to find someone parking in our space yet again it really annoyed me. We had to park next to them which blocked in 3 of our other neighbours cars and I couldn't get the wheelchair up to the passenger door as there was barely enough room for me to squeeze through let alone a wheelchair!

This probably seems rather minor but it really pisses me off because we have the one car and the one space and people who have more than one car keep using it because them or their visitors can't possibly walk just around the corner! It's just damn well inconsiderate.

Thursday, 26 May 2011

What have I been up to....

What have I been up to since I last wrote here I wonder. Mostly attending lots of medical appointments in London and Bristol with a few university exams for good measure.

At the end of April I had my appointment with the gastroenterologist at St Bartholomews in London this required us to leave at silly o'clock in the morning because it was a 9am appointment. We got there to find out that the only lift to the clinic was busted, because it wasn't our fault the nice gastro dr came down and we had the consultation in a downstairs room. The outcome of the appointment being that I've now been put on 4 new meds just for my stomach problems! All with differing quantities and how often they need to be taken. A few weeks later I received an appointment letter to go back for a whole bunch of tests. I have to fill in a whole lot of questionnaires, I don't think I've ever been asked so many questions about my bowel movements before.

At the beginning of May was my birthday and we spent this time in Brighton, Em had booked us into a hotel for the night before my birthday and my birthday itself. We had lots of fun, had icecream on the beach, cockles, played on the 2p machines on the pier, went shopping and ate way too much food. It was a well needed break before the start of the exam period.

The next week was spent taking exams, luckily for me the modules that I have to take had multiple choice exams and I have a scribe plus extra time. We never needed to use the extra time as the scribe read the questions out to me and I just picked the answers, in fact I didn't even need all of the normal allocated time. The exams were over by mid may though so now I just have to wait until 1st July for the results to be officially announced, although they will probably appear on the online system maybe a week or two before then, or at least I hope so!

Last week I saw a surgical podiatrist who was part of the Avon orthopaedic centre based at Southmead hospital. He did the normal prodding, poking and bending my ankle a lot further than even I thought it was capable of going! After looking at it he decided that he should probably get the orthopaedic surgeon in to talk me through my options. Basically because of the faulty connective tissue once the ligaments are stretched they wont go back, he offered up the surgical solution of ligament reconstruction but as I have seen with others online that kind of surgery doesn't tend to stick with people with EDS. I didn't want to have to have any kind of surgery unless absolutely necessary just because I know with my crappy healing that it would be a long hard road ahead and I don't have the time with uni to be taking that kind of time out. Was told that if I change my mind then I can contact them any time to be seen again, in the mean time I've been referred to their orthotics team to try to find something that will hold the ankles in place.

This week we headed over to Watford to stay over last night before heading over to Stanmore for an appointment at the RNOH. I had heard that their programme was very good and a friend of mine had already been there before. I was seen by Dr Cohen who was very nice, I had met her once before at the HMSA residential. She took my history and asked me a whole bunch of questions. She tested a whole load of my joints and the general consensus was that I am rather bendy, affecting all of my joints. That I was doing the right kind of things in terms of painkillers and that in the meantime I should look at my pacing and see if I can improve that as I am not doing it that great. Also I need to get my sleeping sorted out, maybe try to figure out what stressers I can avoid that feed into the whole chronic pain cycle.

Dr Cohen said that she would refer me onwards to their pre-assessment team whose waiting list is a few months and they would go into more detail about the kind of thing that they do. We're aiming for me to go in hopefully sometime next easter. That'll give me a chance to get my stomach problems under control, or at least I hope so and maybe get my weight going down, but we'll see. I'm hoping that I'll have sorted a new chair out by then too. My plan is to try get my eating back under control and maybe start going to the disabled swimming at the local swimming pools. Also I have a plan from the gym about working on my shoulders so I know what I'm doing there too. All with the aim of being able to manage a manual chair rather than relying on a power wheelchair as you aren't so reliant on battery power lasting then.

Coming up in June I've got the testing for the stomach problems, going to see someone about the dizziness also at Southmead hospital and also finally seeing an Endocrinologist after being on T for more than 5 years now. Shall be interesting the results of all this testing and appointments, I'm so glad that we have the NHS and that I have managed to get seen in a reasonable time by some really great doctors who know a lot about how all this affects me. I'm just waiting on an appointment to see someone about the autonomic dysfunction side of things and then I've seen everyone I need to see I think. Good times!

Thursday, 14 April 2011

Attempted Burglary

Early hours of Wednesday morning Em was woken up by someone trying to break into our bedroom window. They snapped part of the bottom lock, making a rather loud noise. She didn't get to see what the person looked like just a torch shining through the window, she turned on the light and they scarpered. The police were rang around 5:05 and they were around pretty sharpish, unfortunately the people got away.

All of Wednesday and part of today was spent with various kind of police coming to our flat to look at the window, find out what happened. The back of our flat there is a ditch then a field, on the other side of the field there is a dodgy estate that is known trouble. Up until recently there hadn't been that much trouble around here. There is only a small fence between us and the ditch. Apparently there should be a 6ft fence there rather than the stupid one that is currently there. There needs to be more lighting around the back of the block as that is really dark.

Wednesday the CSI people came around with their cameras and dusting equipment, they took many photos and spotted the poor mouse that Bilbo had killed. They looked at the window and said that the part shouldn't have snapped so easily, the policeman that came around today reiterated this. They both said that even if it was on the night vent the part should have held up and that it was reasonable for us to expect to be able to use that vent and still feel safe. The fact that the housing repair person tried to fob us off and not replace the part was wrong, the policeman said. He is going to go back and talk to the other policeman that came and see what they suggest but the windows might need to be changed!

I was told that there should have been some defensive planting around the bottom of our windows because then it wouldn't have happened. If you are stood several foot away from the window you wouldn't be able to pull hard enough on the window whereas if you are right next to it you have enough force to pull rather hard.

The policeman said that outside our big glass door should be sectioned off and more defensive planting around the bit that is sectioned off, so we would have a little space of our own just outside that door. He wasn't impressed that the main door to get into the block didn't shut properly all the time and he could have just let himself in if he wanted to.

The police have been very efficient and responded quickly. Cannot fault them on this occasion. Now to tag everything and write on it all with UV ink that I was given.

Tuesday, 12 April 2011

NAS Self Advocacy Booklet Launch

5th April was the launch of the NAS self advocacy booklet, rather early morning bleary eyed I made my way to Bristol Temple Meads station to make my way over to London for the day. Assistance onto the train was arranged for the way there and went smoothly, I got a wheelchair spot for my powerchair and my friends and the others were seated around it. The journey itself was fine, although having to lift my powerchair out of the car was rather painful. On the London side was rather more interesting, trying to get a powerwheelchair and 4 passengers into a taxi was a challenge and a half, in the end we had to take it apart and put it in the front of the cab, but we managed it.

The launch itself was rather posh being held at the Wellcome Trust near Euston station. We had a spot of lunch before the main event started. The food that was provided was very tasty, I had some roasted red pepper houmous and potato wedges.

The gathering was in the basement of the building and was in a room that wasn't too brightly lit and was rather nice and quiet considering the amount of people there. There were people from autism organisations, the police, and some learning disability organisations too. There was supposed to be some press there but that didn't happen in the end.

When the event started the authors (myself being one of them) sat at the front of the room. The booklet was introduced, what it's intended use was and such. After the introduction each of the authors gave a small speech, this was the part that I was most nervous about. I gave my speech and while I was rather nervous inside apparently it didn't show. I got lots of congratulations on my speech and was asked if I wanted to do more public speaking!! The few days after I was getting emails saying how natural and relaxed I was doing my speech, it couldn't have been any further from the truth.

Getting back was rather interesting though. First there was the issue of how we were going to get back to Paddington, we thought we would get the bus but we missed the one going to Paddington and the next bus with the same number didn't go as far as Paddington. It was hit and miss as to wether the next one was going to be the correct one so we had to get a taxi in the end using the same method as on the way there. There was a mix up with the seating on the train on the way back which meant that the wheelchair spaces were double booked on the train we wanted to get. When we went to the assistance place we asked if the assistance could be changed because of that fact, to get off at Bristol Parkway instead of Temple Meads, I thought they would say no as it was only 15mins before the train. Instead they were rather receptive and took us straight to the train, the person was rather nice and understanding. It made my journey home that much easier as I could just chair from the station rather than having to get a 45min bus ride then chair at the other end.

I am rather glad to have been able to take part in the self advocacy project and will be willing to take part in more projects ran by the NAS.


6th April Emily and I made our way up to the Birmingham NEC for NAIDEX 2011. I knew that it was going to be rather large but didn't quite prepare myself for how large it was. I think had I known how large it was I would have made it a 2 day thing, being already low on spoons from the day before I found trying to get around the whole place very tiring. Maybe next time 2 days would be better as I could take more time and perhaps not plan anything the day either side of it.

There were quite a lot of interesting stalls there. I got to buy a funky blue badge holder from Blue Badge Company my one is navy blue with sparkly stars. I particularly liked the sensory stalls particularly the one that had the bubble tubes that changed colour and you could change the colour with a switch that was in a cube. They had a chair that vibrated to whatever the sound was on the screen like a rocket, could be done to music and so on.

We managed to meet up with Robin for some lunch and he trundled around with us for the rest of the afternoon. It was so much fun, he really makes me laugh sometimes. It was a pleasure. I finally got to give him back his hoodie which he left at our house almost 3 years ago and has come on 2 housemoves since then. Hopefully it wasn't too covered in cat hair!!

I got to try out a lightweight manual chair with e-motion power assist on the wheels and I must say that I think that I could actually push myself in that. In other manual chairs even really lightweight ones my joints have a habit of falling out all over the place. I need to look for a longer term solution as my powerchair isn't going to hold up for too much longer. The axel of the front wheel is rather warped, the batteries are shot and the right motor is on it's way out, getting it repaired will cost me more than I paid for it. I have a referral to wheelchair services but I'm not sure how long that will take to come through.

Some other interesting products were the such and such products, there was an attachable handle that you could slide onto the side of glasses that they are in the process of testing. With a few of the kinks sorted out I can see that would be a great product, being able to clip it onto any glass rather than having to ask for something special would be nice. The fact that it didn't look particularly "special" also appeals to me. A lot of items that aid with the whole not dropping glasses/anti spill all look rather childish and "special".

I had a look at the Trabasack stall and their stuff looked rather great too. I imagine that could be rather useful as well. The fact that you could stick velcro to stuff and then stick it to the tray I could see would be rather handy. It was not only functional but rather nice looking too, with some funky colours.

There was a really nice chair that we tried out that reclined so far that you could have your feet above your head. I really liked that, it was like being in a marshmallow so comfy. Myself, Emily and Robin all seemed to really like it, if I had the £1.8k to buy one I certainly would. Being poor I can't see that happening anytime soon.

I managed to meet up with some other people from twitter albeit in a rather frantic way. Unfortunately because of limited time I didn't really get to meet as many people as I would have liked and the people I did see wasn't for very long. Hope people didn't think I was too rude not stopping to chat to them.

There was a stall that sold weighted blankets by Protac that were filled with ping pong balls,I was a bit sceptical about them but when Robin explained to me how they worked it made a bit more sense. I think if I had the chance to try them for a bit longer I would be more convinced by them. I liked the look of the vest version that they had in their information that they gave us. I could see how they would be useful and will be recommending it to a friend of mine who currently carts around a massive weighted blanket, if she had the vest version maybe it would be better and the blanket for when she is at home?

I'm sure there were other things that stood out about that day that aren't coming to mind right now. At the end of the day we went back home to Bristol with many many bags of free stuff and information. It will probably take me a few weeks to sift through it all into potential items that I would want. I would definitely say that it was worth going up and having a look around for ideas. It was a good but very tiring day.

Tuesday, 29 March 2011

Saturday 26th March March

On Saturday 26th March, Emily, my mum and I made our way from her flat in Woolwich to Savoy street near the Embankment to meet up at the disabled meeting point with the WTB crowd. Lisa had kindly sorted and ironed on transfers to tshirts that we wore at the protest. After we started getting going we had to make our way through the crowds up to the front, which was rather challenging trying to get the people in wheelchairs past the massive amounts of people that were in the way. This was rather poorly planned in that respect.

Due to my own bad planning I ended up having to take my crutches for the day, I never normally use my crutches for that long in a day, only for short distances. I must admit that I stupidly pushed myself far too hard trying to keep up with everyone, trying to get through the crowds I was jostled about quite a bit and I spent most of the parade route with my joints not really in place. Instead of listening to this pain I kept on going way beyond what was reasonable, and I am certainly paying for that now.

Despite all the hype in the media, what I saw was on the whole peaceful. It was really inspiring there was such a diverse crowd of people, people of all ages, races, religions, disabled, non-disabled and so on. After we got to Hyde park we made our way over to soho square, but by that point I was in so much pain I was on the verge of passing out, I was having some pretty major pots issues and I needed to stop. This meant that I missed out on seeing the comedy gig which happened in soho square in the end, and I really wanted to be there, but I just wasn't up to it. Mum, Emily and I went off and had some lunch before making our way back to Hyde park.

It was while we were eating our lunch that we saw a few masked individuals run up to Oxford Street, but there seemed like there were very few there not really enough to cause such a big fuss that was all over the media. It definitely felt like there were way more police than there were troublemakers. While we were on the way to the underground we went past a mcdonalds that had broken windows and looked like it had a paint bomb thrown at the windows. Even then the damage didn't look that extensive, that being said it was still pretty early in the day at this point so the situation could have got worse after then.

We got to see some of the people speak at Hyde park and Emily took a fair few pictures from that day which was nice. There was even a disabled speaker which we managed to catch. After Hyde park we made our way back over to Victoria where we were getting our coach from, at that point I couldn't even put any weight on my left foot which was rather swollen and deformed so we had to sort that out before getting on to the coach.

We got home around 11:30pm in Bristol and it had been a rather long weekend. It was really worth it to see the WTB people and to get to the march, sometimes it really is worth the pain. That being said next time I really need to arrange a chair as I was in a lot of pain from a couple of mins in, it was only adrenaline and a boatload of painkillers that kept me going that weekend.