Third Time’s The Charm.

As of January 15th 2020, Diary of a Disabled Person is officially 3 years old! The terrible two’s are finally over, & like a rarely-seen aunt I simply cannot believe how much time has passed.

Celebrating 3 Years of Diary of a Disabled Person in white text, above a line drawing of cake, balloons, & party poppers, on a peach glittering background.

The past year of blogging has, as always, seen some changes to the way I work & the content I produce. I’ve won awards, expanded my following, taken on new projects, & even started making videos!

A year ago I had 200 WordPress followers, & my website had been viewed a few thousand short of 80,000 times. A year has seen me gain over 130 new followers, & the 100,000 views mark is so much closer! Considering that I spend no money on advertising, & rely almost entirely on social media & word-of-mouth, I’d say that’s pretty substantial growth.

Last January I accepted my first award of the year, the Flawesome award, & over the course of the year I have a accrued a few more, bringing me to a grand total of eight awards. The support of other bloggers has been confidence-boosting, to the point where I launched my own award to recognise the excellence of other bloggers & content-producers out there; The Fearless Snowflake award. I hope that with this award, I can return some of the gratitude & support I have received back to a community I am proud to be a part of.

I also released my third series of short stories over the summer, which seemed to be well-received. My workload means there won’t be any more series for a while, but I hope to return to the format for specials such as the Christmas edition a few weeks ago!

I’m not only present on the internet as a blogger, & can be found on social media too! My Facebook page & linked group (@diaryofadisabledperson) has seen some growth, in particular receiving support as I connected with more people on my personal profile, including from several professional wrestlers. My Instagram (also @diaryofadisabledperson) has seen some growth too, although I limit my time on this platform due to some of the more toxic elements I have seen there (including creepy messages that I can only presume have never actually worked at wooing anyone).

As always, the majority of my social media activity has been swearing about ableism on Twitter (@WheelsofSteer). At the time of writing my following has more than doubled in the past year, & I’m hoping to reach the 10k mark in the next few months. I’ve had quite a few people take to social media to lambaste me for taking such an interest in the statistics, & I would hope I never let my drive to increase my following lead me to do anything morally ambiguous, or “shady” as the kids call it these days. However, as someone who has always been mathematically-minded, I cannot help taking an interest & perhaps a little pride in watching those numbers climb.

Perhaps my largest development of the past year in relation to my blog started out as live-streaming on Twitter, & due to a mix of technical & accessibility difficulties, evolved into setting up a YouTube channel & producing the fortnightly show Weekend on Wheels for approximately 6 months. Making videos is definitely the most challenging aspect of my blogging work; I have a very basic qualification in IT & in performing arts, & up until a few months ago had never presented or edited a video. I built a camera stand out of Lego, used my phone to film myself, & downloaded some free video-editing software. After much searching on YouTube for instructions on how to use the software, ironically using videos that had been produced on said software, I began to learn the ropes. 6 months in I have decided to bring my edited show to an end, but will continue to release vlogs instead, & I have a humble following on YouTube to show for my efforts. I’m no PewDiePie, but then again I’m also not prone to racist outbursts, so perhaps that is a good thing.

Cliché as it sounds, I would be nothing without you – my readers, followers, commenters, & occasional trolls. Social activism can often feel like I’m screaming into a void, & compared to other “influencers” I’m not even worth a footnote, but I still feel like I’m making progress. I set up this blog to educate people about disability, & it would appear that I am doing just that. Constantly comparing yourself to others on social media has well-documented adverse mental health effects, & so I try not to let it dishearten me.

Over the next year I hope to keep producing high-quality content, both on here & YouTube. I’d also like to keep growing my following, to reach more & more people with my message of equality, & perhaps even to start on the book manuscript I’ve been promising for quite some time…

Here’s to another year of the little blog that could!

10 Year Challenge.

As we approached the end of the decade, the 10 Year Challenge began to circulate on social media. On all platforms people were sharing pictures of themselves from the start of 2010, & comparing them to current pictures of themselves. I was tempted to share a social media post showing my transformation, but as I started to put together the tweet, I realised it could easily be taken out of context. So, I decided to make a blog post instead.

The reason for my concern is this; 10 years ago, I wasn’t sick.

If I had posted that tweet, it wouldn’t have taken long for it to be turned into a pity-post, further contributing to the ableism disabled people face on social media & on the street. Worse still, the possibility of it becoming “inspiration porn” was not remote either. The truth of the matter is that the change that occurred over the past decade is a lot more complex than just becoming sick.

10 years ago, I looked like this:

I picked these photos primarily because they show me in engaging in some very physical activities; crossing the river via stepping stones outside Bolton Abbey, & hiking up to Bronte Bridge & Top Withins, the setting for the classic book Wuthering Heights. Another factor was trying to find images where I didn’t look like a complete dork. I may have failed on that count.

Anyway, here’s what I look like now:

The change is obvious; not only do I now have boobs, but I also have a wheelchair. Without full explanation, it would be all too easy to misinterpret the meaning of my post. If you’d shown me the current photos then, I would have freaked out big time.

When I first contracted meningitis, & then when I went on to develop M.E., it honestly felt like my life was falling apart. Nothing was certain anymore; my education, my friendships, my potential career, it was all gone or so I thought. Had you shown me the current photos then too, it could have only made things worse.

However, the physical transformation shaped & was eventually overshadowed by my personal transformation, & that is something no photograph can show. Adapting to life with a disability meant that I developed skills & emotional processing I could never have unlocked without it, which much like a vampire will never show up on camera. Posting those images straight to social media could not capture the most important part of the change.

My story is not meant to evoke pity, nor is it meant to be inspirational. What I want it to show is how adaptable even a naïve & inexperienced kid can be. Most people would have adapted to disability in much the same way I have, it’s just that never having become disabled they don’t know that. 10 years ago I would have said the same had someone asked me about how I would react to becoming disabled. While I want to show that seemingly impassable obstacles can be overcome, I also want to highlight that it’s still OK to feel frustrated by them too.

I don’t want to be pitied because of my transformation, although a little empathy would go a long way instead. I don’t want to be heralded as some kind of hero for surviving it either; we all have our own hardships to face, it’s just that mine aren’t as easily hidden as others (not that we should have to hide them at all). 10 years has changed an awful lot about me & my circumstances, but you’d be hard-pressed not to find someone who hadn’t undergone some significant changes in the space of a decade.

What I want to show is that the unexpected will come out of nowhere (I mean, otherwise it would be expected), & that all you can do is adapt. Survive. Overcome. This is what I did; no more, no less. Nor can I predict with much certainty what the coming decade will throw at me, but I’m not too worried about it either. I know I’m tougher than I look & I’m adaptable. Who knows what transformations lie ahead?

One More Time.

It’s been quite a year.

Stood in front of the armoured War Elephant in the Royal Armouries in Leeds at our wedding.

In the middle of January, mere weeks after getting married, my husband & I began the search for a new home. Our current apartment was falling into disrepair at an alarming rate thanks to a disinterested landlord & unhelpful letting agent. It was almost impossible to keep warm, & we were both heartily sick of sticking our hands down the back of the toilet to reset the cistern after every flush. Almost immediately on our search we found a block of smart-looking apartments on the edge of the city centre, nestled behind the shops & arena. We booked to view an apartment which was cancelled at the last second, so booked to view another similar apartment, & despite making an appointment to pay the deposit were told that someone had snapped that one up at the last second too. Although it didn’t feel like it at the time, this was a good thing.

I viewed the third apartment alone as I had more lenient annual leave arrangements than Jarred. The letting agent surprised me with the higher rent, but once inside the apartment it was clear why. It was more spacious, easily able to accommodate the wheelchair in all rooms, & had large windows overlooking the little garden outside. Of course, the office of the letting agent was inaccessible, so much to their displeasure we were forced to do the paperwork in the apartment block’s reception. The agent bumped up the rent even more much to my displeasure, & repeatedly reminded me how much easier it would be if this could be done in the office. There were queries over their guarantor policy & my ID, & the agent added an extra month’s rent to the tenancy agreement, but eventually after a stressful couple of days, it was all finalised.

Now that we knew we would have a home once our current tenancy arrangement ended, we could move onto more pleasant things; arranging the honeymoon. We planned a week in London around a wrestling show, of all things; after all, Jarred did propose at such a show. At the start of March we hopped on a coach down to London, staying in a hotel near King’s Cross in the north of the city, & enjoying a range of activities including the London Eye & a matinee show of Phantom of the Opera (Part 1 & Part 2).

All too soon we were travelling North again, & a couple of days & several loads of washing later, I returned to work. I was approaching six months in my job by this point, & my probationary period was up for review. I was disheartened to learn that my probation would be extended for a further three months, although my line manager was as kind & supportive as ever. However, it did seem that my difficulties in the job mainly stemmed from the fact that it was a step above entry-level, & I essentially had to learn everything the entry-level role should have taught me, & then learn my actual role on top of that.

After the Easter break came a succession of birthdays; a close friend, my dad, my father-in-law, my brother-in-law, & then me. A couple of those birthdays were milestone one’s, although I think if I disclosed which milestones I would be disowned, & so my brother-in-law came up on a bank holiday weekend to stay with us. I had booked the rest of the week off work, & I spent most of that playing my birthday present; the much-underrated Rage 2.

In amongst all of the birthdays was a trip to the gynaecology department at the local hospital (yay?). I wrote about that saga rather recently (Part 1, Part 2, & Part 3) so won’t go into the details here, but I was pleasantly surprised at how well that appointment went. It was after that appointment that my journey towards getting an answer about my gynaecological issues truly began.

June was a stressful month as we prepared to move house, & I also undertook a trip across the Pennines to Manchester, for an ironically inaccessible conference on disability. The end result was essentially having to pack the entire apartment on my own in a weekend, which also turned out to be one of the hottest weekends of the summer. To make matters more awkward, our landlord was not too happy that I had disclosed the extremely long list of broken things to the letting agents they were working with, & kept trying to charge us for things that had been in a sorry state long before we moved in two years before, but after obtaining some legal advice they were forced to back down. Still, July 1st, the day we got the keys for our new apartment, could not come fast enough.

The day we moved was bright & sunny, filling the apartment with natural light as we unpacked the essentials. Both of us had booked the week off work, & with the help of my bridesmaid & her partner, we were settled within that week. We were all pleasantly surprised at just how smoothly everything had gone!

Looking up at our new home; a red-brick building styled to look like a large house, nestled behind some trees.

The day we moved house was also the day I passed my probation at work, earning my place working alongside a characterful team of like-minded individuals. I’m not sure I had ever felt so positive & confident before; I had a gorgeous home I could be proud of, a brilliant job I could be proud of, & a gorgeous husband I could be proud of (for the most part, anyway). For about six weeks I was rolling on cloud number nine, even going so far as getting a new tattoo, & then I had to return to the hospital.

The black & white skull & rose, with 5 red ladybirds crawling over it, on my right shoulder.

This appointment was harder. The temporary treatment I had been on had already worn off, & I had to work hard to convince the doctor that the best way forward for me at this point was diagnostic surgery. Fortunately, the man saw reason once I had explained the situation, & I was told to expect a letter in the post. Sure enough, a few days later I had confirmation; on 24th September I would undergo a diagnostic laparoscopy.

I’m lucky to have an understanding & considerate employer, who allowed me to take the necessary time off work for the surgery & recovery without needing to use any of my annual leave. As the date got closer I got increasingly more nervous, not necessarily because of what they would find, but what they wouldn’t. Above all else I needed the validation that my symptoms were not all in my head, as had been suggested countless times before.

Sat up in my hospital bed post-surgery, with a disconnected drip still stuck in my hand.

Unsurprisingly the surgery did find something, that something being the endometriosis I had been telling doctors I had for years. The next two weeks post-operation were miserable. I was predominantly alone & housebound, in a lot of pain & still without treatment despite now having a diagnosis. My stitches, which as it transpired had been applied incorrectly, became infected. Then my GP was less than helpful, but fortunately I had managed to wrangle a telephone appointment with the gynaecologist for the end of November.

In mid-October I returned to work, now having been employed there for over a year. Given the large pile of paperwork waiting for me, & the even larger bouquet of flowers, it would appear I had been missed. It took a couple of weeks, but by the start of November, the majority of the backlog of work had been cleared. My line manager also had a new daughter.

A large bouquet of pink, white & purple flowers, of many varieties.

As our first wedding anniversary approached, Jarred & I decided to book a mini-break in York for late November. York is always spectacular as Christmas approaches, & considering the nature of the historical buildings littered throughout the city centre, is surprisingly accessible. You can read about my trip here: Part 1 & Part 2.

Upon my return to Leeds I had my telephone appointment with the gynaecologist. Fortunately, he was significantly more supportive than my GP, & proposed that I go back on the only treatment that had proved effective without miserable side effects in the past. Unfortunately, that did involve being injected in the stomach every few months, but it meant relief for the foreseeable future.

Now we have Christmas in our new apartment to look forward to, although of course when this is published, both Christmas & our first wedding anniversary will have passed us by.

As for the coming year, we know we have a home for well into 2021, so can relax on that front. My career in medical research could take several paths, & I look forward to finding where I end up. I don’t tend to plan as something will always come along to scupper plans; plans cannot be scuppered if they do not exist. I know I say this almost every year, but to have a less eventful year would be a pleasant relief; we will just have to wait & see.

How To Train Your Wheelchair: Part 2.

We entered the restaurant by wandering down a narrow alleyway, the ceiling of which was completely covered in fairy-lights. We settled in with some cocktails as we waited for our evening meal, soaking up the warmth & atmosphere of the place. Eventually we were able to face the cold again, & on our way back to the hotel we stopped at a stack of shipping containers that had been gentrified into a bar with street food.

We were surprised to find that this stack of shipping containers was accessible, including the top floor, albeit via a somewhat rickety lift. We enjoyed some red wine with an old floor tom-tom (drum) for a table, & listened to the live music. As the live session ended, so did our wine, & we decided to make our way back to the hotel. We would have been there much sooner had the lift not got stuck. The poor staff were almost as mortified as I was as they got out the manual crank, reset the system, & were able to get it working again.

Eventually we were safely back in the hotel in time to catch Live at The Apollo.

After a comfortable night’s sleep I woke up at around the same time, & the morning routine was repeated. We made our way back to the Shambles, which marks the start of the York Cat Trail. Since the 19th century cat sculptures have appeared on buildings all around the city centre, which have been turned into a spot-them-all trail. We wove our way between buildings, past shops, over cobbles, & onto bridges, managing to find the majority of the sculptures. Having been outside for quite some time we were very cold, so stopped at a nearby coffee shop before heading to the Christmas Market.

The Christmas Market was fairly busy even mid-week, but that didn’t stop us exploring the many stalls that lined the street. Once again we were outside for quite some time, & by lunchtime we were ready for some warmth again, so headed to a traditional Tudor pub that I could actually get into. What followed was one of the nicest meals I have ever had.

Full to the brim with delicious food, we decided to spend the afternoon exploring local museums. The Dig, an archaeological museum, was lacking in content but not school-children, so we didn’t stay there long before heading to the York Army Museum.

The lift required a member of staff to operate, but to my relief they were prompt, friendly, & capable. We were down into the museum within seconds, & wandered slowly around the exhibits. I’m currently playing a Role-Playing Game set in World War 1, & Jarred being something of a history nerd was able to identify which of the rifles on display had been assigned to my character. I was a little unsettled to see real Nazi artefacts from the second world war on display, but then a letter in another cabinet caught my eye. This letter was written by none other then Florence Nightingale, who almost single-handedly revolutionised modern medicine, & in her later years is suspected to have suffered from the same illness that ails me. Safe to say she’s something of a hero to me. She also had the handwriting of a medic – completely illegible, although fortunately there was a typed version next to it.

The final display case focused on modern warfare (not the video games), including stealth gear which you could try on. Obviously, I had to try it on, albeit with Jarred’s assistance. I present to you a gliding hedge;

Sat in the York Army Museum in my wheelchair, covered in various military stealth clothes. I look ridiculous.

When we had made our way around the museum, Jarred had to go upstairs & let the receptionist know that we were ready to leave, but again I was fortunate in that he was prompt in his response. Once we were outside in the cold again, we decided to make our way back to the hotel room. We played another round of The Viking Game, then headed back out to the stack of shipping containers.

It took me a while to choose what I wanted from all the street food on offer, but eventually I settled on some properly-done fried chicken with barbecue sauce. We didn’t venture upstairs this time as I was still wary of the lift.

After our meal we headed towards the nearest accessible pub, which unsurprisingly turned out to be a Wetherspoon’s. A couple of pints of Strongbow Dark Fruits (what? I like it!) & a Christmas dessert later, we were ready to head back to the hotel again where we watched another episode of Live at The Apollo before turning in for the night.

The next morning was the day to go home, & we begrudgingly packed our bags (including Kontroller Kitty), & checked out. We were allowed to store our bags in a safe-room however, as we wanted to get brunch before heading home. We returned to the restaurant from the first night of our little holiday, having enjoyed it very much at the time. All too soon it was time to collect our bags & head to the bus stop. By late afternoon we were back home, Kontroller Kitty had returned to her usual position on the shelf by the PlayStation, & everything was unpacked. We were tired but relaxed, knowing that we both still had a few days before returning to work. We had conserved a little energy though, as the following day we planned to put up the Christmas decorations!

How to Train Your Wheelchair: Part 1.

After a small but much-needed lie-in on a cold Monday morning, it was time to make a move. By which I mean, of course, that my husband provided breakfast in bed. Then it was time to pack. For a short-while the flat looked like it had been ransacked by a troop of toddlers, but soon enough the bags were packed & it was time to go. I went to sit in the warmth of the reception while Jarred locked up.  He seemed to take a while to do so, but I guessed he was just being thorough, checking everything was packed & that all the heaters & lamps were switched off.

We made our way through town towards the bus station, stopping for lunch along the way. The bus turned up perfectly on time & soon we were underway. Having only stopped at two stops along the entire journey, we were in York city centre within the hour. We made our way to the hotel, entering as the clock struck 3 pm, our earliest checking-in time. Without a fuss the staff checked us in, & we made our way up in the lift to our room.

I parked my new wheelchair in the perfectly-sized spot between the desk & a set of drawers, & began to unpack. Suddenly, behind me, I heard a high-pitched voice.

“Are we nearly there yet?”

I turned around & immediately doubled-over with laughter, which continued so long my husband began to think he might have actually killed me. There on the bed sat a cat-shaped Halloween basket we had picked up the year before, which we couldn’t bear to put away for a whole year so assigned it the role of storing our PlayStation controllers, nick-named Kontroller Kitty. Due to our rather ridiculous sense of humour, Kontroller Kitty has a voice & personality, & now it appears she sneaks into our luggage to come on holiday with us. At least I now understood why Jarred had taken so long locking up.

Kontroller Kitty in ger usual place atop a pine shelf at home, with controllers poking out. She's plain black, with tiny ears & paws.

I assigned Kontroller Kitty the temporary role of medicine dispensing kitty, & placed her on top of the chest of drawers by my wheelchair. It didn’t take particularly long to unpack to rest of our luggage, neither of us being the type to pack the kitchen sink (just Halloween decorations in November).

It was late afternoon, & as the sun began to set we decided to go for a wander along the banks of the River Ouse, which was almost full-to-bursting at this time of year. It was cold enough for a thin layer of ice to have formed in places, & the few geese that remained looked thoroughly fed up.

We ambled along until it had gone dark & then turned around & wandered back into the city, where we found a cosy little restaurant not far from our hotel. After a delightful meal we made our way back to the hotel, played a round of Set A Watch (a cooperative board game that I highly recommend if you enjoy role-playing games), before desperately searching for something entertaining on terrestrial TV. Not having a TV license & only really using Netflix & the WWE Network means we are used to watching what we want, when we want it, without adverts. We settled on an old episode of Live at The Apollo which I had seen before, but was entertaining none-the-less.

When that finished we went to bed, & were pleasantly surprised to discover that our bed was actually a double, & not two singles pushed together, as is the case in most accessible hotel rooms. God forbid disabled people have relationships and all that.

It was 8 am when I woke up, & as usual Jarred was awake before me. After coffee & some breakfast biscuits, we both showered (not together, you dirty-minded swine), got dressed, & went out into the city. On our way into town we found a Medieval Guild Hall, which looked as if it belonged in a Dungeons & Dragons game. Even more surprisingly, despite being built in 1357, both floors of the hall were fully accessible (take that, listed excuses). I don’t think I learned much from the exhibits as I was so taken aback to even get through the door, but it was an enjoyable experience none-the-less.

We made our way through the city centre towards York Minster, which it being graduation day was excessively busy. We browsed a few shops & found the street food market to one side of the Shambles. I sunk my teeth into a savoury Danish crepe & non-alcoholic mulled wine, while Jarred went for some African lamb sausages on top of a pile of brightly coloured vegetables & hummus.

Looking up at one of the towers of York Minster from street level, in the morning sun. The detail of the windows & architecture is clearly visible.

After lunch we browsed a few more shops before heading to our pre-booked slot at the Jorvic centre. The smell hit as soon as we entered the building, but wasn’t entirely as unpleasant as some would have you believe, & we made our way downstairs into the waiting hall. This had a glass floor, underneath which was a scaled-down replica of the dig-site which uncovered Viking settlements in the area several decades ago.

We were told to wait for the technical team by the very friendly greeter, but predictably by the time they showed up the one wheelchair-accessible cart had already gone past. We were told to wait another 10 – 15 minutes, & this time when someone showed up on time, they told us we needed to go to another entrance for wheelchair loading which the cart had already gone past. We made our way to the other entrance, where the technical team consoled us by telling us that the wait was so long because only 1 in 20 carts was accessible. Quite how I stopped myself from saying that the wait had far more to do with people not turning up & not keeping us informed, I don’t know.

Once we were on the ride the experience was much more enjoyable. The animatronics were perhaps a little shaky, but the set-piece itself was extremely detailed. One of the people was even disabled, an inclusion that took me by surprise. They had a variety of animals too including rats, cats, dogs, chickens, & birds of prey among the exhibits. For someone who knows next to nothing about history, it was actually really informative.

After the ride we explored the gallery, where I’m only marginally ashamed to report that I was drawn to the real human skeletons. One of the skeletons had a misaligned hip & other malformations, & had been the inspiration for the disabled animatronic on the ride. Nothing will ever quite top accurately diagnosing a skeleton with rickets long before getting close enough to read the sign, as I did a few years back, though.

In the gift shop we picked up a copy of The Viking Game, a game that is something like a combination of chess & draughts, being played by some of the animatronics on the ride. We went home, played a few rounds of our newly bought game, & then headed back out into the cold for our evening meal.

Womb of Woes: Part 3.

The clock had skipped forward almost two hours when I came to in a bed, oxygen mask on, with a radio playing quietly in the corner. For the first few minutes I could barely keep my eyes open, but eventually the fog lifted. When it did I wished it hadn’t, because I think that was when I discovered what being impaled felt like.

After a bit I was returned to the ward, & my oxygen mask was switched for a tube which was a lot more comfortable. I could barely manage sips of water, let alone the hot drink & food I was offered. By now I could feel multiple wounds which told me that they had found something; the surgeon had explained I would only have one incision for the camera unless they found something that required surgical intervention.

I think it was about 6 pm when one of the other surgeons came to my bed. Without bothering to close my curtains she loudly & bluntly exclaimed that I had endometriosis, & that the lining of my uterus had wrapped itself around my ovaries & had had to be cauterised. Treatment would only be offered when I returned to the clinic several months later, & I was good to go despite being unable to eat, drink, or use the bathroom properly. I would also not be getting any pain relief.

Fortunately, the head nurse on my ward seemed to have experience at handling M.E. after a general anaesthetic, & basically refused to let me go home until the morning. That evening, after my husband had gone home after a long day for us both, I sat in bed chatting to the other women staying overnight, & managed to eat & drink a little. After something of a concerted effort, I even managed to use the bathroom.

In the morning I was given breakfast & sent on my way, with documents explaining why I would be taking 2 weeks off work. We took a taxi home & almost immediately I returned to bed. For the next three days I could only manage to stay awake for a couple of hours at a time, & didn’t leave the bedroom except to use the bathroom. The most exciting thing I did was take a shower: I removed my dressings in the shower to discover that I would never be able to wear a crop top again with confidence; thanks to my previous surgery my midriff is covered in scars, & my belly button is warped.

By the weekend I was able to stay awake all day, & even made it into the lounge where I played video games & watched TV. It was over a week until I had the strength to get dressed & leave the house, & even then it was for less than an hour. By this point I was desperate to keep my brain active to avoid becoming even more depressed, as I was now able to fully process the emotional impact of my situation.

For 11 years I had been disbelieved & left in pain. For almost a decade of that it had been exacerbating the M.E, working in conjunction with it to obliterate my health. After 11 years I finally had an answer that shouldn’t have been anywhere near as difficult to get, & even though I now had that answer, I had been sent home with no pain relief & no treatment. Even now, with a confirmed medical diagnosis that cannot be disputed, I am left to struggle on my own.

We are supposed to be grateful for the NHS, because access to health care is considered a privilege & not a human right, & in comparison to most Americans we’re lucky. While this is true I think I can be excused in finding it difficult to be grateful for a system that has once again left me to suffer for years, so concerned on cutting costs that the wellbeing of patients is disregarded in favour of excuses. If I could afford private health care I wouldn’t even hesitate. I fail to understand why not having healthcare is considered the baseline & having healthcare is the privilege, when healthcare should be a right & failing to provide that should be a violation of that right. Quite simply I wouldn’t wish my experience on anyone, & everyone should have the right to not constantly be in pain.