Tuesday, 15 September 2015

Corner Turned

I know every time I leave a blog post I have always promising myself that I will do it more often. That never seems to be the case, although this time I think a corner has actually been turned. I am now at the light at the end of the tunnel. As you may be aware from reading previous posts I have been going through a bit of a hard time as of late. Here is just a quick recap.

1) I had been having quite a lot of trouble with my peg site which culminated in the actual tube coming out of my stomach which required a speedy trip to hospital. Ever since then it had been constantly leaking and stinging causing me a whole bunch of trouble. I usually get quite a lot of my fluids from my feed and with it leaking all the time I had to stop using it on an evening which reduced my fluid intake. Over time this starting to make me quite ill resulting in a lot of constipation which is never a very comfortable experience. That was another trip to hospital.

2) Getting my care provided was proving to be very taxing. One of the agencies I had to leave due to appalling management. Then the new one which seemed really good in the beginning started going downhill. They were providing staff that did not know what they were doing due to the fact that they could not be bothered to train them. Then when I did get stuff that I liked they decided to remove them and tell them that I said I did not like them. A lot of this resulted in other members of staff doing more than their fair share of work and also cost me a lot of time in bed and on my ventilator when it was not really necessary. This brings me onto my next issue.

3) When all the trouble started with my care agency I was at the point where I had to use my ventilator for an hour or two at around midday to stop me getting headaches. Because I was being sent people who are not trained sufficiently in the use of the machine I was in a position where I had to use it all day just to be a safe side. This stopped me getting headaches but the side-effect was that I became way more reliant on the machine that I was before. Obviously with my condition the inevitable outcome is that you are ventilated 24 hours a day seven days a week. However, with all that had been going on and wearing the machine for longer than I actually needed to the process was greatly sped up. Now I need to use my ventilator all the time which might not have been the case for a few more months. The problem then became that whilst I needed to use it all the time it did not have a very good battery and it was not very portable at all. I spent a lot of time staying close to a wall socket which was very useful. I am severely disabled but at the same time I still have a life to live.

As you can see there was a lot for me to process. It's never fun having a disability but it can be made a whole lot worse if things are not right. I did mention I had turned the corner and this is true. I like to do numbered lists so with that in mind I will show you how I have turned this corner...

1) After many months of pain and soreness from a faulty peg site it was finally fixed. They kept trying to put larger and larger tubes into my stomach with a view to plugging the hole but this was ineffective. It turned out that in order to resolve the issue they needed to put a shorter tube into the hole. This caused the part of the tube that was inside my stomach to be held tightly against the stomach wall preventing any leakage which would in turn cause infection. After a few weeks of this there was an immediate difference. There is now hardly any leaking apart from the odd seepage and it is much less sore. Not to say it is perfect but it is now as perfect as a whole in your stomach can be. Now I am back on my full fluid intake and getting the extra 750 cal that the food provides. Seeing as I now or more fluids my bowels are working much more efficiently meaning I can now be more than 50 feet away from the toilet :-)

2) Well the last agency I was with finally gave up the ghost and went under leaving me with the daunting task of either finding another agency which in the past had been proven to be futile or going private and sorting it out myself. We decided to go with the option of going private and hiring my own staff. The financial side of things was not as difficult as we thought it was going to be. Most of the really complicated stuff is done automatically on the HMRC website, all you have to do is feed in the timesheets and it does everything for you. Also, I managed to take some of the staff that I had trained up from the agency and they now work for me. Under much better working conditions I might add. Now I have safe in the knowledge that all my carers can do all the tasks that are required and keep me alive. With the added bonus of the good company as well. This has taken a massive chunk of stress out of my life and I can now worry about other things that are a bit more constructive and fun.

3) unfortunately, I am now at the stage of my life where I am pretty much ventilator all of the time. Now when I reached this stage I was using a rather cumbersome machine. This machine had a great battery but was really portable. This meant that I could not really go out unless I was going somewhere where I could plug the machine in. This was not fun as it greatly reduced the quality of my life. I could not go anywhere. Then I was given a new ventilator. This one has a very poor internal battery but I could put it on the back of my wheelchair which meant in theory I could go out as long as it was not an hour and a half away. The next problem was actually going out. It's hard when you have to were a mask on your nose all the time. I was really conscious of people pointing and staring. This for me was a huge hurdle as I am sometimes quite a shy person. However, once I took that leap and started going out I found that nobody really cared or if they did they were really good at hiding it. After that it is not a problem for me any more. More recently though I was given an external battery which boosted the battery life by about 12 hours. Now there is nowhere I can't really go, I am just like Darth Vader on wheels :-)

Now everything is sorted, I can now live my life and go out without a care in the world. This will give me more time to enjoy my life and write more blogs with the time I have left no matter how much or little it maybe. I will try and keep regular but to be honest I don't see much point promising that. For now I will just keep you updated.

Bert out.

Monday, 25 May 2015

Oh the pain the pain of it all

Sorry, I lied; there will be a little bit more woe is me in this post...

As of this point I have spent more of my life this way than as an able-bodied person and as such I have adapted rather well mentally and physically. I have been able to partition my mind in such a way that I can separate my life from my disability. For me this seems to work out quite well as I can with relative ease not have to think about how terrible my condition actually is. I don't have to sit there and worry about my horrific death which is probably what awaits me. As long as I don't get too stressed and split my partition in two. If that makes sense. However, at the moment my equilibrium has quite drastically been upset. It's not unusual for me to get the occasional problem but for quite a while now I have just had problem after problem after problem. I had major issues with my feeding tube which caused me to stop eating properly which in turn caused me a whole bunch of issues with my stomach. The care agency I was with went downhill really quickly and started sending me carers which were not sufficiently trained. They would not even give me an opportunity to actually train them and then when I did they would send them for the wrong shift for instance I would put in the effort to train them to work a night shift and then they would be sent to work a dayshift. I pretty much spent the last three months organising my own carers and stressing out about that. At the same time and probably caused by my care issues I would say that I have started losing the ability to breathe unaided about a year before I probably would have done anyway. I now struggle to come of my ventilator for any length of time that would actually allow me to go out. At the moment the machine that I use to breath does not attach to my wheelchair and it also needs me to wear a rather cumbersome and indiscrete mask over my nose. I want to go out on dates and meet women but I fear that this machine might not really allow for that unless I can get a smaller mask or possibly a tracheostomy (more on that later). And to top it off sending untrained carers meant that I have spent a great deal of time in bed because I could not get up. All that left me to do was think about stuff and since I was not really living my life at this point all I could think about was my disability which made me feel rather depressed. So for the past three months my life has been a lot more miserable and depressing than it usually is. Normally, no matter how bad things get I can still manage to have a laugh and enjoy myself as much as I can.

Finally though I feel that things might be starting to turn a corner at long last. My feeding tube has finally been fixed and whilst it does still leak on occasion it now does not leak every time I move, have a drink or try to eat something. The care agency I was on about is now about to cease trading which will probably be beneficial for everybody involved with it. This will mean that I now have an opportunity to either find a new agency or manage all aspects of my care which will mean that in theory I should never be left without care because I would have an on-call system and not allow every single one of my carers to have a holiday at the same time. I am due to see the ventilator people in the middle of June which will mean I will be able to try some new masks and talk about some of the issues that were troubling me. So hopefully within the next few months I won't have to worry about eating to stay alive. I won't have to worry about being left without care and I won't have to worry about not being able to breathe because one way or another I will be able to use my ventilator. Then I finally will have all the time in the world to think about going out and enjoying myself as not just possible. I will just have to think about my life and not all the crap that will finally be able to be locked up in my little partition, at least for a little while.

Things had got that crap that now surely things can only get better. :-)

Thursday, 5 February 2015

Feeding Tube Antics

Duchenne muscular dystrophy comes with a whole host of perks, one of which is the possibility of losing the ability to eat. In some cases entirely, in other cases just a little bit due to difficulty swallowing and/or chewing and in some cases the problem is non-existent. However, in my case the cause is due to difficulty swallowing and often chewing. So much so in fact that when I was 16 I had to have a PEG (Percutaneous endoscopic gastrostomy) tube directly through my stomach wall in order to get the necessary nutrition and calorific intake. I plummeted down to a weight similar to that of He Man's nemesis skeletor. When I had this procedure I gained weight very quickly up to a healthy level. Basically this tube has kept me alive for the past 12 years and has put me in a situation where I do not need to worry about eating. I only now really need to eat when I am out with my friends. I am what I like to call a social eater.

Unfortunately, quite recently the whole thing has sort of gone to shit. It all started about two years ago when the tube started to work its way out. If you can imagine there is my outer body and then some muscle or in my case jelly and then my stomach. The tube normally goes through all three layers but for some reason it had worked its way out of my stomach and into my layer of jelly. Now imagine all my liquid food not quite going into my stomach. I was getting all sorts of leaks and infections. Obviously, anything that was leaking was quite acidic and therefore also burning my skin. One of the problems I had was thrush. The treatment for this is basically a steroid cream. The problem with this was that I was leaking acid so I also needed to use a barrier cream. If I use the barrier cream that would stop the acid burning but do nothing for  the thrush and if I use the steroid cream I would continue to be burned by the acid. What a predicament. The solution was to remove that tube and place a temporary one in until the whole thing healed.

The temporary tube is about half a foot long with what looks like the end of a suction cup which touches my belly. The tube was about a size too small which was in order to give the site plenty of room to heal and close up around it. This sort of worked for a few days until one day I was sat in my wheelchair minding my own business when it started leaking like someone had turned on a tap. This thing smelled really bad which wasn't surprising because it was literally vomit. I decided that the best move to stem the flow of the leak was to get out of my wheelchair and lie flat on my bed in the hope that it would eventually stop itself. I got on the bed and that seemed to be okay for a few hours whilst my new carer had to mop my kitchen floor. It got to about 9 o'clock and they were giving it a wipe when all of a sudden “pop" it just fell out and I was left with a small hole in my belly. There was blood and acid and a whole cup of tea squirting out of my stomach.

The stomach lining generally replaces itself every 4 days, so you can imagine how quickly the hole in your stomach will heal itself and close off completely. Unless you have another tube or some other method of plugging the hole this is an ambulance job. This is a story for another day. Anyway, after an eventual interesting ambulance ride with no blue light I might add to my discontent we arrived at the hospital at about midnight. I mean honestly, what do you have to do to get a blue light, considering I am technically dying just really slowly. I had to lie on a hospital bed in the accident and emergency department for about three hours and I could not alter my position considering my situation. I was incredibly uncomfortable and my stomach was really starting to hurt. Other people will attest to this but I have a relatively high pain threshold. Again, a story for another day. The nurses patched me up and paged a consultant. This guy came in from home to treat me, talk about service. He put another temporary tube in which fortunately for me did the trick for a few days until I got chance to see the specialist.

During this time I must point out that I have not had any food through my tube all the while this was going on. The specialist at the hospital removed the temporary tube and cleaned the site. Once again they gave me a steroid cream to help clear it up and they also took a swab. They also put a different type of tube into me. This one was called a Mic-key. This was a much better fit and to some extent lessened the leak to more of a seep. The cream didn't do much to the stinging sensation and the decimated skin however. Ever since then I have been getting it changed every few months whilst it slowly got to a level where it was bearable.

The pain had finally stopped or I had got used to it. They had provided me with a type of dressing which stopped it leaking and also took away the pain. This thing had little bits of silver nitrate in a sort of gel which really promoted healing. That was until the company that produced them decided not to any more. I had to keep getting the specialist to demand this dressing from the supplier in my area so that I could get as many as possible before they ran out. They eventually left me with nothing which unfortunately for me pretty much brought me back to square one. The tube got really sore so once again I had to go to a hospital, fortunately a more local one. Straight away the nurse removed that tube and replaced it but not before she introduced me to a wonderful new dressing which I had never had before. This thing literally instantly stopped any leaking and removed all of the pain. She gave me a few to see me through the weekend. The problem came when I tried to get them on prescription.

With the pain and the leaking finally ceasing I had a wonderful time ringing round every chemist in the area only for them to tell me the same story which was they were too expensive fuck off. I could not get them on prescription I would ring up the chemist and argue my case. They would agree to supply them and then they wouldn't without letting me know. This went on for about a month during which time I ran out of dressings. My stomach started leaking and here I am back at square one again. I was really pissed.

After the gastrointestinal specialist and the muscular dystrophy specialist wrote me a letter basically saying give me the dressings or I will actually die, the chemists eventually complied. Since then they have admitted that after all this time they were actually allowed to provide them on a prescription. Since that time I have had these new dressings on a regular supply which has allowed my stomach to get to the point where it is just the occasional drip and just a bit red.

By this point the temporary tube that I had inserted during my trip to A&E was about three months old and needed seeing. I made an appointment at the hospital to go to the PEG clinic. After about a month due to weather I managed to get down to hospital. To my luck I got to see a consultant, a nurse, a dietician and also the representative from the food and the PEG company. I pretty much got a full system check. They looked at my previous swabs which had all come back positive for thrush and decided that it was systemic which was why it wouldn't bugger off. They took some blood which they are still testing as we speak and have decided to put me on a course of antibiotics for two weeks in order to nuke the mother fucker. Also, for the past few months I have been mostly having blended food and protein drinks to sustain myself. They have introduced me to new drinks which have more calories and less volume which should also be helpful. Hopefully, it will now all heal and I will be able to get a new tube and start my nightly feed again. All just before the Grim Reaper comes knocking at my door.

Hopefully in my next post there will be a little less woe is me. Until then I guess I will just keep getting a kicking but keep on ticking.

Bert out.

Friday, 9 January 2015

Well that was a disappointing sequence of events

Well I started last year with great hope. I was going to develop a whole new series of hobbies and learn some new skills. I intended to become a semi-decent programmer, to meet new friends and possibly meet some members of the opposite sex and also to try and get some kind of employment so that I did not feel so useless. Absolutely none of that happened!

For the first few weeks I sort of procrastinated and then stagnated for a bit. I was very good at doing the programming on the actual training website but when I finished their lessons and tried it for real none of it would work and that kind of the wind out of my sails. That's generally the rule of thumb for me that most things computer-related never actually work. Even when I followed the instructions word for word I can't even get to the point where I can even begin practising my skills.

My other intent was to get a job and I was doing quite well that, I was pretty convinced I was going to pass my course at College and maybe work from home a little bit. Well that went tits up and I failed that course. No one at the college could answer my question about when to apply tax to items without the vat and the first question in the exam was about applying taxes to items with no vat. That has a knock-on effect on every question making everyone of my answers wrong, hurray for me.

By this point I was halfway through the year and nothing was really happening however everything I had planted such as tomatoes and chilies was doing quite nicely. I had started planning what I was going to make for Christmas. A whole variety of pickles and chillies were on the horizon and providing there were no biblical plagues it looked promising.

I also updated my dating profile adding a picture of me in a tuxedo to try and do the trick. I also realised I had been on this particular website for about six years with absolutely no interest whatsoever. My conclusion at the time was that the first thing they see is the wheelchair and from that point they don't even read the profile. Until someone I knew who was in a wheelchair all of a sudden was engaged. Then I made the startling realisation that the wheelchair was not the problem as the problem was apparently me. I don't really know how to alter that. In all my years of trying to meet people I have been called a mercy shag and have been on one mercy date. The really disappointing thing was that I did not even get laid for that first one. I didn't even really know who the mercy was intended for. I just told myself that they just weren't the right ones. I would also like to point out that I am not really a sex fiend. I mean obviously I want to get some because well I am a dude but I would be terrified. It would take me quite a while to get to trust someone enough for any of that, so even if I wanted to be a bit of a slag I couldn't.

Anyway, that was a bit disappointing. I was just starting to cheer up when my feeding tube started coming out of my belly. I had to get that replaced with a temporary tube which leaked for ages burning my skin until one night it just popped out. That was a fun trip in an ambulance to accident and emergency. I had to go on a really hard stretcher, lie on a really hard bed then I had to lie on a really hard stretcher in an ambulance on the way home. This really hurt my back which was sore for at least a month and I also had acid burns all over my stomach. My stomach is still a little bit tender but on the bright side I have now got a much more comfortable tube. I also needed dressings for that which was a massive pain in the backside to get sorted. That's a tale for another day.

One final thing to top it all off was the fact that due to inconsistencies in my food intake I was constipated literally every week. Now I have no problem discussing poo because with having a disability and loads of carers my dignity went out of the window ages ago. For me it was getting that uncomfortable that I could not really sit in my wheelchair so I spent a lot of time in bed. Also with having lots of laxatives I had to be near a toilet at most times. Fortunately I managed to get a television in my bedroom so it wasn't too bad but for someone like me being bed bound can have some serious consequences. I was lucky because it did not to too much damage. However, as funny as toilet humour is constipation for someone who does not move very much is really not funny.

Anyway I think that is all of the whining I can do about having a pretty rubbish year. Hopefully the next one will be much better and I can focus on the thing I did the best which was growing tomatoes and chilies then making lots of pickles. You never know I might go into business yet.

All the best, Bert out.

Friday, 3 January 2014

Happy New Year 2014

Well, another year has passed. Goodbye 2013 and hello 2014. I like to take this time to look back on my previous year and think about how we went and what improvements I can make. I look back on all my schemes and devious plans and wonder is there room for more deviousness? The answer is a resounding yes. The cooking was amusing and pixel art was cool but to be honest I've lost a bit of interest in that one. Towards the end of the year I started putting in time at college and also in programming again. Hopefully, with a view to taking it somewhere maybe a job or something like that. In fact I think my ambition for the year ahead is to get a job. That would be cool.

With a New Year comes new hope. Maybe they will come up with a new treatment for me or a decent way of controlling my wheelchair or computer. That would be nice. Anyway with this new hope I decided to do what many people do at this time of year and that is to join a dating website. I figure when I go out people cannot hear me and this way may be more successful at getting myself across. Unfortunately, this time around it is definitely not my first rodeo. I have been updating websites on and off, free and paid for for about the last six years with little to no success. Hopefully, this time my profile is just right and my picture of me in my tuxedo will do the trick.

I also like to look back at all the blogging I have done in the previous year. I did intend to do one post a week but that didn't really work out. Most of the time it's because I get distracted or something. Although I did do 13 posts which are close enough to monthly. Monthly is probably a more realistic target for me. This is a target that I will try and stick to even if it's only a review of my month.

Last year I also went on a cruise which was the first time I had been on a decent holiday in ages. This gave me a new lease of life and I have already booked a cruise with one of my friends for this year which gives me something to look forward to. This is always a good thing. This time we will be cruising around Spain.

Also last year I discovered something really cool which has allowed me to start programming again and go to college. It has also opened up a new world of possibilities for me to get back on track with what I was doing when I left university which was programming. Due to the advancement of my disability I lost the ability to use a keyboard and had to resort to doing my dissertation using the on-screen keyboard which was a painstaking task. The on-screen keyboard is just not designed for program and it took me ages. This hindered my progress and in my opinion reduced my overall grade by at least a point from a 2:1 to a 2:2 however, I can think of a few people that disagree and will tell you I was lazy. I digress. Anyway I have discovered how you can hack into Dragon Dictate and have all sorts of commands using Python. Now I have started relearning JavaScript, HTML/CSS and J query with a view to learning Python, C++ and possibly C# which even if I do just as a hobby I would be quite happy.

Also, I have just got my new power chair football wheelchair. It still needs to be adjusted to fit me but when that is done I will be able to take part with my local team which will definitely give me something to other than sit in front of my computer and play warcraft. Don't get me wrong I don't plan on quitting that just yet but it always helps to have more than one hobby.

So just to go over again with this New Year I will hopefully find a job, find someone on the Internet and dramatically improve my programming skills. Not to mention finish my new course at college which is computerised bookkeeping. Who knows one day I might be an accountant. Not bad for someone who hates maths if I do say so myself. I might even try and knock swearing on the head but to be honest I wouldn't hold your breath to long on that one.

Hope you also have a nice New Year and hopefully you can read more from me next month but with any luck I might squeeze in a new post before then.

Monday, 4 February 2013

My Pet Hates 1 - Straws that think they are a spoon!

I am not a big coffee drinker; I don't particularly enjoy it all that much. There are only two occasions I drink it. I would drink it while I am still in bed on a morning to try and wake myself up. I would also only drink it in a coffee shop. I know people have a variety of different opinions regarding copy shops but I love them. I love the smell, the colours and the atmosphere. The only things there I will ever drink are the lattes, cappuccinos, mochas and speciality limited edition drinks if I’m feeling special. In the summer I may treat myself to one of those frozen coffees to. The problem arises when I can only get hold of one of those funny straws that thinks it is a spoon. You know the one I mean. For the most part it behaves like an ordinary straw except for that last centimetre where it is a spoon. I do not understand what the point of this is as they've already have spoons which come with the drink. Even then those very spoons do the same job as the spoon on the end of the straw. This really bugs me because the straws are quite stiff so if you bend them you can no longer drink through them and because the last bit is a spoon it has no suction. This means that I can no longer drink the rest of my coffee. I would prefer it if they just had either spoons or straws and not all these confused utensils. It is not just a problem with straws and spoons; it is also a problem with spoons and forks. To be honest I think it might be the spoon that has the issue. I understand what the purpose is. It’s for those slushy drinks so that you can eat the ice at the bottom. I ask you when have you ever drank a slushy drink fast enough to get to the bottom to the ice without getting crippling brain freeze. It just does not happen. Therefore Starbucks, Costa Coffee and Nero’s I implore you stop this madness and let me enjoy my coffee in peace, comfort and convenience. Thank you and good day.