diaryofadisabledperson

The Blogger Recognition Award Strikes Back.

Happy birthday to me!

Arrogant as this sounds, I have genuinely lost track of how many awards I have received for my writing. I guess I must be reasonably good at this whole stringing words together thing to get this much recognition. Either that, or I’m so abhorrently terrible that people are returning to laugh at my miserable efforts, although if that were the case I would have expected to have gone viral by now.

On this occasion the nomination comes from The Anxious History Teacher, who’s blog can be found here.

Accepting the reward requires me to acknowledge the person who nominated me, give a brief explanation of why I started blogging, provide two bits of advice for new bloggers, & to nominate a few other bloggers deserving of the award. Having previously been nominated for the Blogger Recognition Award, I will do my best not to repeat myself!

Why did I start Diary of a Disabled Person?

There are a lot of misconceptions & generalisations made about disabled people. We’re perceived as weak & helpless, often naive, innocent, or even straight-up stupid. We’re often seen to be in need of help, whether that be impromptu healing prayers in front of an audience, or a flamboyant display of assistance, also in front of an audience for some reason, that actually does more harm than good. When it comes to our fictional portrayals, we’re often depressed plot-points that a protagonist uses to give themselves motivation, and as such are usually accompanied by one lone violinist who remains remarkably off camera.

These stereotypes have done significant damage to disabled people & need to be educated against if they are to change. The lessons you remember from school are usually the humourous ones, so if humour helps teach maths, I’m sure it can do the same for equality.

2 Pieces of Advice.

Keep a regular posting schedule. The majority of the time my blog posts are published on a Sunday. There is, of course, some variance in that depending on other things going on around me, but for the most part it can be predicted when a blog post will appear. That means people keep coming back. My viewer count always goes up on a Sunday morning, even before I’ve had chance to publish anything.
Keep it varied. TV series that run for too long or too many seasons get stale very quickly, & regular blogging eventually runs the same risk. However, you can extend the longevity of your work by keeping it varied. Some weeks I will discuss personal experiences & anecdotes, other times it will be issues surrounding ableism supplemented with my experience, & at other times I publish short stories. There are photos, videos, & multiple social media platforms all helping to keep my content fresh (hopefully).

My Nominations:

Once again, I’d like to thank The Anxious History Teacher for this nomination, & I’d also like to say congratulations to all of my nominees.

Solving the Wrong Problem.

Recently this video did the rounds: https://www.youtube.com/watch?v=mVHpRnTS4TM

On the surface it looks incredible; someone went to the trouble of developing a wheelchair that could climb stairs, thus solving all problems around inaccessibility & eradicating ableism. But then you start to think about it.

The wheelchair is shown going backwards up some steps at a snail’s pace. The stairs are not rain-soaked & are in perfect condition, & miraculously there isn’t another pedestrian barging past at an inopportune moment. As for bad weather the advert claims the wheelchair can handle it, but doesn’t really show it. In fact, it doesn’t show the wheelchair going back down the flight of steps at all. There is also no clear mention of how much power climbing the stairs drains from your battery.

So, the technology is flawed, but with time that could be corrected. At that point we could eradicate all ramps & lifts, & historians could keep their piles of mortar & stone just as they want them without having to deal with something so petty as equality. But wait…

Sometimes disabled people don’t use wheelchairs. Climbing stairs with a severe visual impairment is, by all accounts, bloody terrifying. Similarly, people who have mobility issues or chronic illnesses but can walk may still find stairs problematic. There’s no way I could carry my rollator up a flight of steps; I would still need level access. A stair-climbing wheelchair gives businesses an excuse to maintain their inaccessibility because you should just get a stair-climber. Of course, getting one of these presents problems of its own.

It’s virtually impossible to find out how much one of these wheelchairs costs, but it will not come cheap. With standard powered wheelchairs often reaching several thousand pounds for the basic model, even second-hand, it’s almost certain that the price will be beyond the means of most disabled people. For everyone who couldn’t afford the technology, ramps & lifts would still be required.

So, the stair-climbing wheelchair would only benefit a fraction of the disabled community & access requirements would still exist. It’s an brilliant idea, surely, until you start contemplating the ethical issues that surround this wheelchair.

For starters, when designing things with disabled people in mind, it might be useful to actually speak to us. Even an introductory discussion with a handful of disabled people would have raised basic concerns around the cost & the limitations of the design before so much money was sunk into the project. It would also have quickly brought to light that the wrong problem was being addressed.

Instead of designing expensive, flawed products to get some disabled people into a building, placing the effort & financial onus on the individual, it would make far more sense to make the building accommodating of all disabilities. While this initially costs more than 1 wheelchair, more than 1 customer would be gained. The responsibility of businesses is to serve their customers, and being accessible is a part of that responsibility. Putting the onus on the people who already suffer at the hands of discrimination is just morally wrong.

Quite frankly, this entire project & every other like it, that refuses to work with actual disabled people or to listen to us, is as ableist as businesses being inaccessible in the first place.

The Injection Kicks In.

It’s been 3 days since I had the injection that kickstarted my early menopause, & so far it seems to be working. Here’s how I’m getting on:

M.E Awareness Week: Day 7.

In loving memory of Sylvia Everritt, 23rd September 1931 – 9th May 2019, strong matriarch & welcoming to all. She will be missed by all who had the pleasure of knowing her.

C.B.T (finally!).

At the beginning of February 2013, I began my course of C.B.T. The first appointment was the introduction, where I spent twenty minutes arguing with the therapist over where appointments would take place. As dad had to work, and mum could not push the wheelchair, we could not travel out to the CAMHS centre. She refused to do the therapy at home, as this was unsuitable. Eventually, we settled on a school appointment, during one of my free periods. She wasn’t happy, but it was the best we could do.

At this point, she asked my parents to leave the room, and she told me what C.B.T was all about. It focused on the cycles of thought and behaviour patterns. Negative thoughts and low self esteem often lead to unhelpful behaviour. The aim of C.B.T was to break this cycle, so that it did not spiral out of control so easily. It was a vicious cycle of depression.

However, the nurse refused to believe that I had depression at all, and simply said it was a low mood. This was cover for “get over it”. I could understand where she was coming from, but for a GP to refer someone as needing help, simply getting over it wasn’t an option. I needed help. Then, after discussing the cycles for a while, she gave me a sheet to take home and read.

I read the sheet the next day, when I had some space and time to think clearly about it. The sheet talked about activity being a good way to diffuse depression, which was a valid point, but not always achievable with M.E. The sheet then talked about bed resting being the worst thing for M.E. According to the sheet, getting out of bed and exercising more would sort the M.E out in no time. It was like the physiotherapy all over again. There was no way that I could possibly do this, as I struggled to walk around the house some days. If I followed the sheets instructions, the likelihood is that I would have another major relapse, and be set back by months.

On the next meeting, the nurse arrived twenty minutes late due to snow, so had to rush through my appointment in twenty minutes. I tried to bring up the point about the sheet being inappropriate to give to sufferers of M.E, but my point was disregarded as irrelevant. The point was instantly dismissed. It was like talking to a brick wall; anything I said was either ignored, or in some cases completely contradicted. After the rushed session, the nurse gave me the task of setting some goals, for short, medium, and long term.

I set goals about being more positive, having a high self esteem, doing myself proud, making changes for people with M.E, being better at pacing myself, and eventually to settle down with a family all of my own. I wanted to use the M.E as a learning experience. I was certainly different to when it all began. These goals would be the best way of challenging the depression.

On the third session, I showed the nurse the goals I had written, and she approved of them all. She was pleased that I had tried so hard with them. Surprisingly she took the time to read them, and listen to what I was saying. She also agreed that I actually had depression, and maybe a few anxiety issues too, that could be dealt with using the C.B.T. It was extremely pleasant, and the session was very productive. This time, she set me the task of recording my feelings when I got marked pieces of work back, including exam results. She told me to perform this on my strongest subject, biology, as this was the easiest one to be positive about.

I did the task as asked, which included the result from the exam in January (a B, pleasingly). However, on the fourth session she was back to her normal self, and barely even glanced at the work I had prepared.

I was in two minds as to whether I continued the C.B.T at all, but there were one or two useful things that I could gain from it, so I stayed as open minded as I could. My GP agreed that when it got to the sixth session, which was a review, that I should say that I was able to continue on my own, and be discharged from CAMHS. This I did successfully, and although the C.B.T hadn’t done much for me, there were one or two small things in place that helped me. The best of these was the ability to think calmly and rationally in a difficult situation, and I was never quite so negative on myself again.

Life was beginning to look up.

The Start of the End.

Even thought I was beginning to feel better, I had applied and qualified for the higher rate of DLA, as I couldn’t walk fifty metres without support. This also meant that I was allowed to have a blue badge, which made car parking a lot easier. It was a good feeling to be supported and listened to, after all my trouble with school.

Now that I was recovering, I had to be extremely careful to resist temptation, and not do too much. It was much harder to rest when I felt good, than when I felt really ill.

What I could use my energy for was thinking clearly about my experience of M.E, and to use it as a learning curve.

I’d learnt how to pace myself much better, and to be more patient with myself. It didn’t matter if I failed at something first time through, there was another chance. I had to accept that sometimes I needed help to accomplish things, and that was nothing to be ashamed of.

I’d learnt that I was stronger than I looked, and tougher too. I could take a lot of pain and illness before I began to crack, and even then, with a little help, I could push through most of it.

The importance of true friendship had become visible to me, as well. It was no good hanging around with someone who was a good laugh, if I didn’t feel that I could trust them. My new found friends were better, and much more trustworthy. I could talk to them about faith, illness, and misery. I also learnt that being a good friend was essential too. I had to be the shoulder to cry on sometimes too. To my surprise, I soon grew to love this role, and found that I really cared if my friends were upset.

I’d also learned that money couldn’t buy everything. It couldn’t buy true friends, or family, or good health, or happiness. Money was nice, and it could pad out the life with small luxuries, but it never did any good. The things of true value were the feelings of happiness and pride, and the love that I shared with friends and family.

Last of all, I discovered that it was OK to be “faulty”. I didn’t care what people thought of my looks, my taste in music, my “geekiness” (which I actually came to love), or my disability. The people I wanted to think good of me were the ones I cared about. If they liked how I was and could overlook my faults, then I was fine.

As well as my past, I looked towards my future. I dreamed of a complete education, and a good career. I also yearned for a relationship, someone I could trust & not feel ashamed of them seeing me at my worst.

***

Unfortunately, mum was still very ill, and had reacted to the tablet used to control her overactive thyroid gland. There was no replacement. She now had to suffer the weight loss and sickness; while waiting to see if there was anything else the doctors could do. There was a suggestion that radioactive iodine could be used to kill off some of the gland, forcing it to produce fewer hormones. This would mean that mum had to be kept in isolation for a month, but once it was over, it shouldn’t trouble her again for the rest of her life. Her health was monitored, and nothing was done for the time being. There was still a chance that the disease would correct itself of it’s own accord. Stranger things have been known.

Still, whatever happened, we would be a family.

The Ending.

I used the DLA I had earned to buy two walking sticks and a mobility scooter. I used the sticks round the house, and for trips out into the back garden. With the sticks my balance was much steadier, and I could walk further. I felt safer too. The mobility scooter gave me the freedom to travel out on my own. I could go to shopping centres, and visit one shop, while my parents went in another. I also enjoyed many trips around the park, where I could lose myself in my thoughts, and take in the views. It took a while to get used to the stares and daft comments of others, but I was soon able to cope with it. The freedom it gave me was well worth any negative behaviour.

I finish writing this maybe not quite at the end, but near it. The M.E is burning itself out, and eventually will leave me. I have at most a year to go, maybe even six months. My returning health is due to many things, including patience, good health care, and a positive attitude. I have many things to go ahead and achieve.

Mum is still ill, and will always remain so. With the support and medical care she needs, she should be OK though.

The end of the road is in sight for the M.E, and maybe this means so for the depression too. Someday, all this will be behind me, and I will be leading a normal life, hopefully as a wife and mother. I have learned a lot, and forgotten little. This has been the hardest lesson of my life; far tougher than anything A-level maths could throw at me (not to say that A-level maths was easy. It was just easier)!

This is what I need for my story; an ending full of hope and one or two loose ends. However, I can assure the reader that all these loose ends will sort themselves out over time. They always do.

Edit: Obviously I didn’t recover as I had hoped. I clung to this hope for far too long but once I had admitted to myself that recovery wasn’t certain, I actually felt a lot more positive about my condition. It took many years following on from this point, but eventually I learned to accept my lot in life and carry on.

M.E Awareness Week: Day 6.

Relapses.

Mum’s illness was progressing, and it affected her everyday life. She was told that the overactive thyroid gland had caused irreversible damage to her diaphragm. This in turn caused breathing difficulties with the asthma, as the diaphragm was not able to contract and relax fully. However, mum pushed on as normal. She didn’t have much choice, as the workload was affecting me badly.

While the schoolwork relieved the depression greatly, the physical aspects of M.E did not improve. I had managed to push through to the first few weeks of term, until eventually the M.E kicked off. I woke up feeling horrendously sick, and my muscles ached as if I had run a marathon. My back was screaming from the pressure applied on it from the mattress. I rolled onto my side, despite the pain, as I knew I had to ease the back ache before it got too much for me to handle. I opened my eyes, and even in the dimness of my room with the curtains drawn, the light burned into my eyes. It felt as though my skull was on fire. I couldn’t believe the state my body was in. I hadn’t realised how much stress my body was under, and now it was out of control. As I lay there, I thought about how well I done to get so far through the term without any time off. However, this didn’t ease the terrible guilty feeling in my chest that I would be missing important lessons. I couldn’t begin to imagine how I would catch up on all the missed work.

I forced myself to sit upright and get out of bed. Slowly I made my way down stairs, and got a coffee. I thought that a caffeine boost might lift me out of this dreadful state, and that I would be able to attend school. Ten minutes later I was back upstairs, having somehow managed to climb back up them. They felt like a mountain. I crept into mum and dad’s room, sank onto the bed, and burst into tears. They were quiet tears, as I didn’t have the energy for anything else. Mum took one look at me, and phoned me in sick. “Yes, I was far too sick to come into school. I should be commended for doing so well, not criticised for needing time off.” I hobbled back to my room, and fell asleep in my own bed.

Several hours later, they felt like mere minutes, mum woke me up with a drink. I tried to sit myself up, but couldn’t. My arms physically wouldn’t take the weight and trembled continuously. My back pain limited my flexibility. All I wanted to do was curl back up and fall asleep again, but I needed to drink something. Mum put her arm around my shoulders, took one hand, and between us we managed to get me upright. I slumped back against a pillow, which had been leant against the bed head. I hated to feel so dependent on others, and I felt guilty again, this time for making mum do so much when I knew she shouldn’t. I drank the tea while it was still warm, and then sank back under the covers for another sleep. I couldn’t sit up much longer as it was exhausting me.

The day passed in a haze of pain and depression. I was lonely and bored. I hadn’t been able to pass the time with reading, and my head hurt too much for music. I hadn’t eaten much either, as lifting the spoon up to my mouth and chewing took far too much energy. This meant I didn’t have any fresh energy for the next day, and had to take that one off school too. This did the depression and rising feeling of anxiety no favours, and the high stress made it harder to recover from the M.E. However, on this second day of relapse I could eat slowly, and read. I listened to my MP3 player. Music was a huge escape to me, as I could relate to it extremely well. It was the most effective way of relaxing.

Now that I was more relaxed I slept well. The next day I got up, all be it shakily, and went to school. I managed to collect all the work I had missed, and that weekend I ploughed through it all.

These relapses now began to repeat themselves every two weeks or so, sometimes requiring two days, sometimes only needing one. Every time I managed to get back, and get up to date with the work I had missed.

At around Christmas time (2012) things seemed to pick up. Despite lots of revision for the upcoming January exams, I got lots of rest, and didn’t have a relapse at all. When I returned to school, I got the exams done, and found that I was beginning to have a lot more energy on a daily basis. I could do more, and not experience any more fatigue or pain than normal. I stayed out to rewards ceremonies, and could attend school the next day with positive ease.

My medication had been altered a few times to relieve pain and nausea, and now it seemed to be working excellently. There were days when I felt worse, and there were days when I felt very well, but most of the days were spent on the edge of discomfort, content enough to plough through the days. However, the depression did not lift as I had been expecting, and hung over my mind like a dark and endless cloud. Seeing the positive side to anything became as hard as studying any A-level. Still, I told myself that CAMHS would surely be contacting me soon about the C.B.T, and then everything would ease up.

Now that I appeared to be healing I had to be careful not to push myself too hard. The temptation was to use my new found energy to the full, and not store it up. It was a hard impulse to resist, especially after not having energy for so long. However, I resisted, on the grounds the quickest way to good health was to rest up. I did allow myself one extra exercise though, and that was drumming for fifteen minutes at the weekend. I loved drumming. Being behind the drum kit gave me a feeling of safety and protection, as well as knowing that it was something I could do to a reasonable standard. There was no one judging me behind the drum kit, except the odd person telling me how unladylike I was. I loved being able to rebel slightly; I have always been one to break the mould. It was glorious. For those few precious minutes, there was no pain (there was when I stopped!), and no one could hurt me. I looked up to drummers like Harry Judd (McFly), Ronnie Vannucci (The Killers), Phil Collins, and of course Tre’ Cool (Green Day).

Two long years had passed now, and I had been ill for all of that time. Still, I could feel myself returning to my almost former self, but I knew that the M.E had changed my perception of the world. I was not so arrogant, and I was more aware of the dangers the world throws at people. I was ready to become a healthy teenager again.

Ow.

This morning I was injected with the hormones that will trigger my temporary menopause. I haven’t yet turned into the hulk.

M.E Awareness Week: Day 5.

The Return to School.

CAMHS had been informed of my suicide attempt of course, but we still had no response from them. It was a case of biding our time.

By this time mum was seeing countless doctors and specialists, and I had completely lost track of them. I could barely keep track of my own existence. I only knew that mum had occasional asthma attacks, and the overactive thyroid was causing the odd bout of weight loss and sickness, but again, it didn’t appear to be too drastic.

I decided to return to the same high school, despite my previous treatment. The teaching standards were high, and I knew that I could make new friends, who would be trustworthy and kind. After a few weeks fighting, the school agreed to give me an assistant to help me in lessons and around the building. I would be taking AS-level Maths, Chemistry, Biology, and Physics; I would need help with experiments, and fetching equipment and books. I would also need regular access to painkillers, as I was stepping up the work-load by a huge amount. I would also need someone to befriend me over the first few days as I tried to make new friends. I found it hard to trust new people, so the first part would be rather lonely.

The only problem that remained was transport to and from school. Mum still couldn’t push the wheelchair because of her bad asthma, and Dad worked 30 miles away. We applied for council transport, but we were turned down due to a lack of funding, even after appeal. The reasons stated were “not being able to get down (our) road”, and “(I) didn’t legally have to be in education”, as I was over sixteen.

School refused to help at first, so we relied on other people to push me back from school. Dad managed to push me in every morning. The friends in our community helped greatly, but most of them had children of their own to pick up, or were elderly, or had jobs to attend. School frustrated me, as they expected me to get straight A’s, but refused to help me at every little step. Having to fight for the smallest of resources put a huge strain on me, and I knew that if it continued for much longer my grades would really begin to suffer. Then, to add insult to injury, I noticed how school helped the kids who didn’t work, and who purposefully underachieved. They got transport to and from school despite perfect health, and trips out on a regular basis. It seemed really unfair.

Eventually, schools health and safety officer noticed how bad our situation was becoming. He looked over legal forms, discussed financing, and after plenty of arguing with officious members of the admin team, it was decided that one of the care assistants could push me home every night, if dad pushed me in every morning. This arrangement was perfect and worked smoothly. It was a great relief to us

The assistant who was given the job was kind and friendly. She enjoyed pushing the wheelchair as it gave her a break of fresh air every evening, before returning to staff meetings.

As soon as this was all arranged, my school life became a lot easier, and I began to really enjoy my lessons. I was doing subjects I enjoyed, and didn’t have to bother with the things I didn’t like. My carers were happy to help fetch and carry equipment for me, and were thrilled to aid me in experiments, which were often fun. They became friends, and I could talk openly with most of them.

As time progressed, there were a few issues with lesson lateness, and access to respite care, but these issues were resolved as speedily as possible. They were annoying while they lasted; but all of a sudden school had become a lot more willing to support me. Maybe they had recognised how much effort and care I put into my work, but maybe pressure had been applied by the head teacher to support me more. I never found out, to this day.

My old friends mostly ignored me. This hurt me of course, but as I made new friends, I soon realised what a false friendship ours had been anyway, and was glad to be well shot of it. It did pain me to see how little I mattered to them, but my new friends were supportive. We were a mixed group; it was wonderful to be surrounded by such diversity.

In class, I had friendships with people who shared the same passions with me. I bonded best with the other girls, as we were distinctly in the minority, as was to be expected. However, most of the boys were nice too, and I formed some strong friendships with them. Very few of my class members judged me, and I returned the favour by not judging them. We were from all different backgrounds, and lifestyles. We were all different. Yet we all shared similar interests. The new found friends greatly eased the depression, and my studies distracted me. I threw myself into them with all the vigour that I could muster up. I had found happiness again.

I loved my subjects. Despite miserable grades at the beginning (D’s and E’s), I still found enthusiasm and passion for them. I felt that for someone my age, in my condition, I was doing well.

Maths was hard, and not all of what we learnt was useful, however, I learnt lots of logic skills.

Physics was a very small group, 4 of us all told. This meant we got a lot of attention of the teacher, and we had a lot of fun. The seemingly ridiculous ideas and theories that Physics proposes became perfectly sensible to me.

Chemistry was mostly about industry, and was both useful and interesting. I found plenty of time to practice my logic skills, and also developed a lot of memory aids, as Chemistry required quite a bit of memorising equations.

Biology was my favourite. It opened a door to me; there were things the human body could do, that I never even had dreamed of. I saw how beautiful and precious life was. I learnt how a single heartbeat is controlled, how disease spreads, the inner workings of the lungs, and the digestive system. I studied DNA, microbes, plants, animals, taxonomy, epidemiology, and humans. I was in love. I didn’t want to leave the lab at the end of the lesson, and often went home and studied hard. It never felt like study because I loved it so much, I knew that this was what I wanted to do as my career, for the rest of my life.

It was a relief to my parents that AS-levels were such a joy to me. For the first time in just under two years, I was happy. I actually wanted to get out of bed and attend school every day. There were rough patches, but the good outweighed the bad.