The Mystery Blogger Award.

Mystery Blogger Award Logo. Mauve all-capitals text in the centre of a turquoise circle, with an ocean background.

I’d like to thank blogger Unwanted Life, who has kindly nominated me for the Mystery Blogger Award. This award was designed by Okoto Enigma to give bloggers the recognition they deserve, & for the community to show their appreciation of each other’s work, motivating them to keep writing.

Like many blogger awards, to accept the award after being nominated there are a few rules you need to follow:

  1. Display the logo (check).
  2. List the rules (ongoing check).
  3. Thank whoever nominated you (check).
  4. Mention Okoto Enigma as the creator of the award (check).
  5. Answer the questions given by the person who nominated you (uh oh).
  6. Tell readers 3 things about yourself (definitely uh oh).
  7. Share a link to your best posts (how to choose!).
  8. Nominate some others for the award (recommended 10 – 20).
  9. Ask your nominees 5 questions with at least 1 question being funny (evil laugh).

Let’s get this very introverted party started!

Questions from Unwanted Life:

  1. What’s the best piece of advice you’ve ever been given?

This may seem mundane, but one of the best pieces of advice ever given to me was to apply for the position of Data Management Assistant at a clinical trials unit. Having read the job description & requirements I felt that I was unqualified for the role, & I wouldn’t have even applied without the encouragement of my husband (then fiancé). It goes without saying that I got the job, & almost a year later I’m definitely one of the few people who is lucky enough not to hate their job. Also, the pay is good.

  1. What’s the most out-of-character thing you’ve ever done?

I once had a very heated row with a woman using the one disabled changing room available as she was taking an exceptionally long time. I had just climbed out of the swimming pool & was dripping wet, getting colder & colder, & conscious that time was marching on. As she eventually came out of the changing room I accused her of being a fake, when in reality she had an invisible condition. There was definitely no need to take as long as she did, especially with the other disabled cubicle out of order, but I shouldn’t have judged whether she should be using a disabled changing room in the first place. I definitely regret how I handled that situation, & wish that I’d realised how horrible I’d been in time to say sorry.

  1. What one historical event would you love to be there to witness?

I would almost certainly have wanted to be a part in the suffragist movement, possibly even the suffragette movement. Every single woman that participated in that movement is a hero in my opinion.

  1. What one thing would you love to become an expert in, if you could wake up tomorrow & suddenly be an expert in it?

Kung Fu, purely so I could sit up & go “whoa, I know Kung Fu”, like Neo in The Matrix.

  1. Would you rather be rich or famous, & why?

Definitely famous. I’m like a cat in that I’ll pretend not to like the attention, but in reality I’m basking in it.

This isn’t because I belong to the “money can’t buy happiness” school-of-thought either; at the end of the day, you’re never going to be happy if you can’t afford a roof over your head, food, & other basic necessities.

Some Facts About Me:

  1. I’m terrified of spiders, but I like spider-man.
  2. The 5 ladybirds on my latest tattoo have names; Asuka, Becky, Charlotte, Lita, & Mae, after 5 iconic women in WWE.
  3. The skull also has a name, Fred, courtesy of my colleague.

My Favourite Blog Posts:

All Creatures Great & Small: how animals react to disabled people.

More Than Ramps & Lifts: how accessibility is more than physical requirements.

Wheels Ahoy: a short story about a wheelchair-using pirate.

My Nominees:

The Disability Diaries.

Seeing M.E in Reality.

Wheelescapades.

KimiBlack.

A Backpack, A Chair, and A Beard.

Roxy Moto.

HeyIt’sLeaa.

Cane Adventures.

The Life Quadraplegic.

Being Aunt Debbie.

My Questions for Nominees:

  1. What’s the most bizarre piece of advice, wanted or otherwise, that you’ve ever been given?
  2. What’s the weirdest instance of Deja Vu you’ve ever experienced?
  3. How did you get into blogging?
  4. What is the strangest thing you’ve ever been asked & how did you answer it?
  5. What’s for tea?

Once again, I’d like to thank Unwanted Life for their very kind nomination, & congratulations to all my nominees!

Aspirations of Inspiration.

When I started this blog as a student, I barely expected anyone to read it. I thought a few of my friends & peers might find it interesting, and I found that writing about my experiences helped me to process them. It wasn’t until some months after starting to write that I even set up social media to support my blog, & it took over a year before I bought a proper web domain, having never expected Diary of a Disabled Person to get beyond its first birthday.

As the weeks turned into months, & the months into years, my words appeared to be having a bigger impact. More people were visiting my blog, & more of them were returning each week for my latest piece. My follower count was climbing, not just on WordPress but on social media too, in particular Twitter. While I am under no delusions of grandeur or infamy (except for the fact that I am undeniably fabulous), it is hard to deny that my influence is growing.

Anyone who knew me at school will know that I was mostly quiet & reclusive, putting up walls before allowing people to get close, & preferring to spend time with my cat than other people. These traits have mellowed but still exist to this day. My loud & brash mannerisms displayed on the internet give the impression that I am an extrovert, but in reality, if I get an unexpected phone call, you can find me hiding behind the sofa. Yet I unwittingly find myself at the head of a slowly growing movement towards improved accessibility & equality for the disabled, with people looking to me for advice & asking me for my opinion on stories in the news.

Almost on a weekly basis I get emails asking me to participate in equality groups & societies based in Leeds, inviting me to give interviews for articles, & even to appear on documentaries representing the disabled community. Increasingly I’ve had to politely turn down many of these opportunities, as working full time while running a blog leaves little time for rest as it is, & I do have a chronic illness after all!

As an aside, if you message me trying to get me to sell something for you, you’re going to get ignored. If you persist, you’ll get blocked. I don’t do shady business because, contrary to my appearance, I have standards.

Anyway, to go from a complete nobody to slightly less of a nobody in the space of two years has been a lot of things; exciting, enthralling, & downright bloody scary. Recently, an American teacher emailed me to ask if he could use my short stories to educate 9th grade children about disability. After googling what on earth 9th grade means, I said yes, but the idea that I could be having an influence on impressionable youths across the globe does make me worry for the future generation.

I’m proud to achieve what I already have, & I’m excited to see where this goes next. I hope that my influence continues to grow as I would like to help disabled people of future generations have a slightly easier time of it than I did, if only so I can use “back in my day” to annoy them.

While it’s important to me that I don’t become “inspiration porn”, deep down everyone secretly wants to have left a mark on the world, & I feel like this is mine.

A Trip to the Dark Side.

As my alarm burst into life at 5.30 am I began to regret my decision to go to Manchester (which is in Lancashire, the sworn enemy of Yorkshire, for anyone who doesn’t reside in the UK) for a conference on disability & LGBT+ intersectionality. I scoffed down some cereal & coffee, washed & dressed hurriedly, & carefully pinned my hair into something resembling a neat hairstyle. Within an hour I was making my way down to Leeds train station where I met my colleague, & together we wove our way between the extensive building works scattered around the ticket hall. Commuter traffic began to increase as we headed to the platform, which involved a lot of ducking under backpacks & around important-looking men in suits who looked down their noses at everyone else.

Black & white selfie. My hair is in a bun on the back of my head & I'm wearing light eye make-up & lipstick.

My colleague & I had booked a ramp to enter the train, instead of relying on mythical levitation tactics, & to my surprise a porter carrying a ramp appeared with time to spare. The ramp was set up without a fuss & soon enough I was on the train heading to Manchester. Funnily enough, I was in the 2nd wheelchair space opposite another wheelchair user, who as it transpired, was heading to the same conference.

A little under an hour later we disembarked without problem, & I pulled on my raincoat as the first drops began to fall. Sheltered outside a small, inaccessible coffee shop we began to call taxi companies. The first company didn’t take wheelchairs at all. The second only took manual wheelchairs that could fold up. The third only had one wheelchair-accessible vehicle which had been booked. The fourth didn’t even answer the phone. In the pouring rain we headed onto a main road & hailed a black cab, & then spent a good 5 minutes finding a suitable place for the taxi to pull over & let me in. The taxi driver lowered the ramp, barely wider than the wheelchair & with no edges to stop me falling off. With great care I edged up the ramp & sat in the taxi. There were no restraints for the wheelchair so I was forced to brace myself as best as I could while we drove through the city centre.

Eventually the taxi came to a stop nowhere near the venue, & I was forced to reverse down the horrendous ramp, leaving a puddle of rain water in the cab. The rain lessened as we hurried to the conference centre, where I saw two sets of revolving doors.

Revolving doors are to wheelchair users what Shakespeare is to infants; a complete waste of time & resources (in fact, I suspect many adults feel this way about Shakespeare too). There were automated double doors between them however, so naturally I went to those.

“Call reception” was the only button for the doors. In the rain I rang the bell & waited while the receptionist finished having her coffee & chat before the doors eventually opened. Then there was a second set of doors, & again I had to call reception & wait to get in. The fact that able-bodied individuals could come & go as they pleased curtesy of the revolving doors, but that I as a disabled person had to be let in like a dog, was infuriating. I was attending a conference about disability that had disabled speakers, & yet ableism was the first thing I faced.

I made my way to the reception desk where the member of staff told me I hadn’t registered (I had, or I wouldn’t have had the ticket with me) because they had missed my name when creating visitor badges. I got a blank & wrote down my name, then had one small cup of coffee. In that short time I was recognised by the first of several readers & followers, something which was a very new & novel experience, which I must admit to enjoying. Then the conference began.

The opening screen of the conference presentation, projected onto a pull-down screen in the sports hall.

As we sat around tables in a chilly sports hall the leaders introduced themselves, & then the first talk about the social & medical models of disability was underway. An hour later we broke off into smaller groups for more interactive workshops, & I remained in the sports hall to look at how being a marginalised group within a marginalised group (i.e. being disabled among the LGBT+ community, or being LGBT+ among the disabled community) effected social interactions, while my colleague made her way upstairs. After the morning’s work we were directed to lunch, a buffet which was impossible to reach from a wheelchair, & went to eat in a dining area filled with long wooden tables & long wooden benches, the type that cannot be moved to accommodate a wheelchair user. I chose to get out of my wheelchair & sit with my colleague, but the others were forced to eat in a separate area with their lunch. I regretted not joining them to make a point, although it did mean that I was nearby when the assistance-dog in training decided to take a nap on the floor.

A black Labrador, assistance dog in training, resting on a patch of sunlight on the floor.

After lunch was a short talk before another workshop. This time I made my way upstairs, having to wait some considerable time for the lift as at least 1 wasn’t working. In the room a member of staff stood in the only space available to reach from a wheelchair due to the cramming of furniture into a small space, & once she did move I had to kick a chair out of the way. Shattered, I barely took in the next session, not least because they decided to over-run into a much-needed break.

I made my way back downstairs for the final session, once again in the sports hall. This one addressed discrimination that can be experienced within marginalised groups, particularly racism, ableism, & transphobia within the LGBT+ community. It is the only time I have ever seen Grindr screenshots used to make a poignant statement.

Afterwards there was a drinks reception, which was ironically one of the most accessible parts of the day, & slowly we drifted away. Myself & my colleague wandered through Manchester, the day having turned bright & sunny, & we stopped for a drink purely for the purposes of hydration. We waited until the commuter traffic had tailed off before heading to Manchester Piccadilly station, & this time we had the cabin to ourselves when we entered the train (also without incident).

A little while later as we pulled into Leeds it was going dark, & the station was the quietest I have ever seen. A ramp appeared as if by magic, & I said goodbye to my colleague who caught a taxi home, this time having no trouble whatsoever as I wasn’t travelling with her. About ten minutes later I was home myself, & not long after that, asleep.

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.

A black & white photograph of Sylvia from the shoulders up. She is in her 70s or 80s in picture.

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.