This morning I was injected with the hormones that will trigger my temporary menopause. I haven’t yet turned into the hulk.
I managed to obtain the hormones today, & I’ll be injected on Friday.
Apologies again for the lack of subtitles, but in summary I had one hell of a fight to get the prescriptions with it being opposed every step of the way, but I will be getting treated on Friday morning.
Last weeks vlog can be found here.
When it came to October half term, I was more than ready to see the physiotherapist, and start the programme. I was looking forward to a feeling of less pain and more energy, as I had been promised.
The physiotherapist herself was quite brusque, but to the point and matter of fact. She discussed my current abilities, how far I could walk unaided, my limits, and what happened if I exceeded them. She asked me how long relapses lasted, and how often they occurred. She also inquired as to pain levels, and where the pain focused. After about half an hour of talking, she got me to do some step-ups and star jumps. I could manage about ten of each.
When the appointment came to an end, she said a letter would be posted to us containing a physiotherapy and hydrotherapy programme. I was to ring up with any questions, and return for an appointment in a few months time. Then, as we were about to leave the room, she called us back.
“One more thing,” she said, “It might be worthwhile to purchase a wheelchair for use over long distances.” I was never to use it on a daily basis, or around school, but it would free us up at the weekends. The NHS would only be able to lend us one, and as I might need it over a longer period, it would be better to buy one that we could keep and use for as long as we needed to. I wouldn’t be able to self-propel the wheelchair, I would need an assistant. If I pushed myself, I would be taking the weight of both me and the wheelchair on smaller muscles, and this would only fatigue me more.
I nodded at this insight, but can’t say that I took it in at the time. It wasn’t until a few days later, on actually purchasing the wheelchair that I realised what was happening. I didn’t think that using a wheelchair would be at all problematic; if anything I thought it would be fun.
When the letter came containing my physiotherapy, I was surprised at the rate at which I would be increasing exercises. Once a week I would increase each exercise by a time of thirty seconds. The exercises were to be done every single day of the week, without a break. The hydrotherapy increased at a similar rate, although it wasn’t such heavy exercise to begin with.
At first, the exercises seemed to make me tired for an hour or two, and then the fatigue wore off. However, after the first couple of weeks pain began to build, and I had to give up the exercises one day a week. I decided to increase the exercises once every two weeks as well, hoping this slower pace would rectify the issue. After another two weeks, I was still no better. Mum phoned the physiotherapist, but I was instructed to continue as I was, and that it was just a bad patch. I trusted the physiotherapist, remembering what had happened previously when I ignored a medical professional’s advice.
I carried on, telling myself that I would just have to break through the pain barrier. I was disheartened to find that every time I pushed through one barrier, I came up against another, even harder one. Eventually, I could take no more, and was forced to stop the exercises completely. They were too much for me to cope with.
For the short time I tried it, the hydrotherapy was blissful, as the water took my weight and relieved my pain. It was an oasis of relief, for two hours a week, and very welcome to me. However, once the G.E.T had destroyed any health I had, I could no longer continue with my hydrotherapy.
The problem was, even when I had stopped, my health continued to deteriorate. I was therefore discharged from the physiotherapy department.
Now that I was in more pain, I was also using the wheelchair a lot more often, over shorter distances. The reality of being disabled became frighteningly clear.
On crowded shopping days, people would push past me, ignoring me completely. I had my ankles kicked as people stepped over the front of my wheelchair, and I had to duck to miss several handbags and shopping baskets that were swung across my face. Doors were often allowed to swing shut in my face, and I was spoken to like a two year old. That was, if people spoke to me at all. Lots of people spoke to my parents, but ignored me, on the basis that having a wheelchair made me phenomenally stupid. Several shoppers would stop directly in front of me without any warning, not realising that the wheelchair was not so easy to stop suddenly, and then complained when they got bruised ankles. I seemed to be invisible. There were occasions where kind people would stop and hold doors open for me, or pass me things that were out of reach. Often enough, these were other disabled people, who suffered from the same problems as I did. One particular wheelchair user gave me tips about getting in and out of lifts- she said it was easier to go in backwards and come out forwards, as when you came out, you could see where you were going and who was stood in your way. Also, she told us about getting into lift queue’s first; as it was rare that people would share a lift with someone who was disabled if they could possibly help it. There were numerous times when I wanted to yell at people that I was a human being too.
The highlights of my shopping trips soon became when people flashed me a smile; this happened so little that being acknowledged at all seemed nothing short of a miracle.
It was about this time that mum began to lose weight. She was small anyway, and hadn’t done anything special to lose weight. If anything, she was trying to gain a few pounds. It was just another small worry among many, which got overlooked. Mum had had spells of losing weight before, and it had never amounted to anything of consequence. So, we simply kept an eye on it, just as we always had done, and pushed it to the back of our minds.
A visit to the paediatrician.
Mum developed a severe chest infection the week before I was due to visit the paediatrician, so she couldn’t come with us to the hospital, where she was likely to spread infection. She had visited the same GP that was treating me, and he had sent her to get an x-ray. The x-ray showed us that half of her left lung was completely filled with mucus and bacteria. She was given anti-biotics, and was asked to rest. Then she was told to return to the GP after the infection had cleared. We had to be extra careful not to give mum any more health issues, and now the weight was really beginning to drop off her, we were worried.
I managed to walk from the car park to the waiting room, as it wasn’t far. My appointment was with the head of the department.
When I went in, I told him what medication I was taking at the time, about my pain levels and the failing physiotherapy. He did a physical examination, and then confirmed my GP’s diagnosis. Next, he referred me to the nurse to have a few more blood tests done, so that he could see that there was absolutely nothing else wrong with me, which could worsen the symptoms. He prescribed cocodemol for the pain, and dismissed me.
The next day I started on an adult dose of cocodemol, and went to school as normal. Less than an hour later I was sent back home again with crippling stomach pains.
Mum took me to the emergency doctors later on that day, by which times the pains had subsided. I was checked over, and it was agreed that the cocodemol had caused these symptoms, especially as I had taken no more, and the pain had all but ceased. I was advised to stop taking them. Nothing else was provided as a substitute, so I was back to square one- the waiting game.
The following week I revisited my GP, and explained my desperate need for painkillers stronger than paracetemol. We still hadn’t heard anything from the hospital about my blood tests. My GP was concerned about me, and wrote to the hospital, asking whether I could start taking painkillers called amitryptiline. He could not give me these without permission from a consultant. Amitriptyline is a very general drug used to treat pain and mild depression. He also asked for the confirmation of my diagnosis in writing.
The next week we received the letter confirming the diagnosis, and instructing me to start on a course of amitriptyline, at 10 mg per night. Each week I could increase the dose by 10 mg a night, until after five weeks, I was at the maximum dose of 50 mg. It wasn’t advisable to start with this dose all in one go, because amitryptiline is known for making people very drowsy.
After five weeks, I was on the full dose, and my levels of pain had decreased miraculously. My life became a lot more comfortable, and I could begin to enjoy myself more on a daily basis. Although the drug made me drowsy at first, it was worth the sweet, and long sought after relief.
In all of this I was lacking for only one thing. Someone who could share their experiences with me and help me, and somewhere I could talk about the M.E with other sufferers. Someone I could share a common issue with, and get some understanding. My parents were supporting me well, but they could never truly know what the M.E was like, without having it themselves.
I was looking at M.E on the NHS website, and ways to cope with it, when I noticed a hyperlink called AYME (Association of Young People with M.E).
I clicked on it.
I was bored having just one chronic illness, so I decided to get another.
Please be warned, this is 6 minutes on why vaginas suck.
I went to the gynaecologist today & have been diagnosed with bilateral dyspeurenia, a condition that makes penetrative sex virtually impossible due to severe pain levels. Things like lube, special condom coatings, & different positions don’t help, & it’s virtually un-treatable. If I eventually want to have children this will cause problems.
Secondly, after starting periods 11 years ago I have finally managed to get a doctor to listen to all the symptoms I have experienced over the years, without them being blamed on puberty (still), or even the CFS. It’s possible I have a condition called endometriosis, which affects 1 in 10 women & runs in the family.To formally diagnose endometriosis they’re going to medically induce the menopause at age 22. This is reversible & doesn’t increase my risk of breast cancer, & if my symptoms go away it’s indicative that they are caused by endometriosis. In this case I will return to the doctor and be put forward for a diagnostic laparoscopy, where they can see if I have endometriotic tissue in the pelvic cavity. If they find it, they may even be able to remove some.
I’ll be vlogging my experience because women’s health is still a taboo subject that we don’t talk about enough.
Also I’m terrified.
The Leeds Disabled People’s Organisation have published a literary journal, including input from yours truly. Check it out here!
If you use Twitter and you haven’t seen the #AmbulatoryWheelchairUsersExist campaign then I’m offended, because that means you aren’t following me.
In all seriousness, that little phrase is being used across social media to raise awareness of wheelchair users who can sometimes stand and walk, usually with walking aids. I myself have a rollator, which is basically a cross-over between a Zimmer frame and one of those shopping baskets on wheels that are a pre-requisite condition of being a pensioner, with a seat to perch on when needed. This means that on the occasions where I am only going around the corner to post a letter or buy a pint of milk, I’m not dependent on my wheelchair.
There is an attitude that ambulatory wheelchair users are lazy attention-seekers, faking the severity of their illness to obtain additional financial support. The reality of the matter is that, as with any illness, some days are going to be better than others.
The first time I used my rollator was on a wild trip to the supermarket to pick up a few basic sundries. It was undeniably strange to feel the pavement beneath my feet; I was acutely aware of the bumps in the pavement, and the hotter temperature of the concrete exposed to the sunlight. I managed to maintain a slow, steady pace down the hill and round the shop, revelling in the luxury of being able to see what items were on the top shelves, and not have to become a contortionist to reach the items I wanted. I could even reach to the back of the refrigerator to select the freshest milk.
I went to the self-checkout, paid, and placed the packed shopping bag on the seat of my frame. Halfway up the hill a strong gust of wind sent my shopping sprawling across the street, and as I bent down to collect everything as quickly as I could, I was tutted at for being in the path of passers-by and absolutely no one offered to help. It was strangely reassuring to know that I was as invisible on the frame as I was in the wheelchair.
Since then I have used the frame on an almost daily basis, and on the whole I have enjoyed the freedom it has given me as single steps and curb drops are now climbable, if a little difficult. The only real difficulty I have faced is that, just like in the wheelchair, I am expected to go around other people, prams, groups stopped on the street, and even badly parked cars. In the wheelchair this is incredibly annoying, can greatly slow my progress, and often leaves me vulnerable to verbal abuse. On the rollator there are an extra two steps needed to move out of the way of someone who absolutely needed to respond to a message that instant, the rest of society be damned. Add up the number of times this can happen in one small street and I can end up walking an extra 10 – 20 steps. This sounds insignificant but with each extra step my muscles hurt more, my dizziness increases, and my body temperature rises at an alarmingly uncontrolled rate. This is one of the main reasons why I simply cannot use the rollator over long periods or distances without risking a serious relapse.
I might leave the flat one day in the wheelchair and then be using the rollator the next. This does not make me a fake, nor does it make me heroic for putting up with the pain. I’m just trying to live a little, and I am far from the only person doing so. Ambulatory wheelchair users do, in fact, exist, and we are going places (albeit very slowly).
When you start a new job there’s a lot to think about; being in the right place at the right time, sorting out the paperwork, & introducing yourself to the total strangers you’ll spend 35 hours a week with. If you are disabled then there’s even more to think about. Unsurprisingly one of the things that concerns disabled employees most is accessibility.
I’m lucky to have an employer who took great care to ensure that I had all of the tools I would need to do my job. In fact, the only part I cannot do independently has nothing to do with my disability, & has everything to do with the fact that even when balanced precariously on a stool, I’m too short to reach the top shelf of the 2 metre tall cabinets.
In fact, the biggest obstacle to overcome didn’t occur in the office at all, but in getting to & from my work.
The building I work in is huge. It has 8 floors, not counting the secret underground laboratory where we’re teaching rabbits to wear flat caps & talk with a Yorkshire accent. Despite spending many hours in there as a student, & now working there, I get lost looking for anything beyond the rooms we commonly use, & the café which is nowhere near the rooms we use, but I just so happen to know where it is anyway. Oh, & then there’s the great big hospital we’re attached to.
There are 3 reasonably-sized lifts available to everyone who uses the building. Most people were more than accommodating when it came to lift access, but it only took a few arrogant tossers for me to spend 5 minutes waiting for the lift to come back around only to find it full again. I left enough time to account for this, but even then, I could be late into the office.
I raised this as an issue & much to my surprise, instead of being called a whinger I was granted access to a fourth lift that only people with a key could get to. You had to have the key to enter the corridor, & then had to use it again to operate the lift. It basically guaranteed me a spot in the lift whenever I wanted.
The problems arose because the cleaning staff, who were based along this new route, were not accustomed to wheelchair users. The corridor was frequently blocked. I asked politely to keep a route clear but was told it couldn’t be helped, so I told them that they would move it or there would be trouble. Naturally there was trouble, when I shared this photograph with the building manager:
In all fairness to the team, it’s not happened since. Although, as it transpired, I had won the battle but not the war.
Next came the cleaner who, with good intentions, asked if I needed help getting through the double doors. I politely declined but was ignored, & the door was wrenched from my grasp resulting in a minor shoulder injury. Some might say I should just accept the help, but I despise the notion that I am not human enough to know my own capabilities or that my words are just hot air.
Even after this, my biggest obstacle was yet to come.
It was a Friday night & I was leaving the office. I entered the lift alone, my key dangling around my neck on a lanyard, which I used to select Floor 4 (which is one of the ground floor entrances alongside the other on floor 7. As I said, it’s a weird building and it’s also on a steep hill). The lift stopped at floor 5 and a porter pushed a large trolley into the lift.
“Where are you going?” he asked as if he couldn’t see the number 4 glowing.
“Floor 4,” I returned.
“No, you’re not,” he smirked.
“Um…yes, I am,” I responded sharply.
“There’s no way out there.”
“Yes, there is.”
“But you need a key.”
“You mean like the one dangling around my neck that you need to be able to operate the lift we’re in?”
Apparently, he was only being nice. He only asked a question because he had assumed that I didn’t know where I was going in the building on the route I used twice daily, 5 days a week. This fails to address why, once I’d told him where I was going (as if that was any of his business in the first place), he persisted to ignore my responses and undermine me with blunt statements.
Encountering this attitude once was bad enough, but it happened a second time, & a third time, & then a fourth. Before long I’d lost count. Despite the plethora of evidence which included my key, my staff badge, & buttons already pressed in the lift, I was frequently told that I didn’t know what I was doing & I shouldn’t be there.
My employers are doing all they can to stop this. All staff undergo extensive Equality & Inclusion training, & there are working groups & committees in place, several of which I am a member of. Signs have gone up by the lift alerting people that wheelchair users can use this route, asking others to be considerate. None of it has worked.
I do not blame this on my employer, nor is it a reflection of their attitude. It is instead a reflection of the general attitude towards disability displayed by the populace. It is the culmination of the stereotype that we are helpless individuals worthy only of pity. It stems from the hatred we face for relying on government funding that allows us to access the equipment we need to be able to work. Even if it is subconscious, in just one short corridor, I have encountered more ableism than I ever will in my actual job.
There is, however, one small thing that they have not accounted for; tyre tracks on their shoes will be the least of their worries if they get in my way.