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.

New Year, Same Old Me.

In early January 2018 I started my first job. After 5 months of HR dragging their feet with the paperwork I was relieved to finally start work, even if my hours were limited. When I arrived my new employer had even more concern for exasperation with HR as my computer login didn’t work, and the fact that the IT department were inaccessible complicated matters. We asked about incorporating access but were told the cost was too great, which due to all the budget cuts is believable. I finally managed to get onto the computer only to find that one of the programs essential for my role hadn’t been set up properly, so once again IT had to come to the rescue. After this I spent the first few days going through my compulsory training, but there was no job-specific training, so I simply learned from following what my colleagues did. It seemed to work well. These were all just teething issues that settled down as time passed.

In mid-January Diary of a Disabled Person became 1 year old, and a week later I accepted my first ever award for my efforts, The Leibster award. I was gaining confidence in my work and felt ready to expand my horizons.

By mid-February I was developing my new website; I had paid for a web domain and used a template I liked to create what you now see before you, added better menu and search functions, added my social media, and added a donate button. I also decided, after much deliberation, to set up a Twitter account. I was a little reluctant to do so as I had heard so many things about online trolls and generally toxic behaviour towards each other, but I also knew that it would enable me to reach out to a wider audience. However, once I had set up a profile online I realised that my concerns were mostly unfounded, and I was introduced to many new people and opportunities. I began writing accessibility reviews and giving interviews for podcasts and magazines, and I quickly gained a substantial number of loyal followers.

Image description: a selfie taken on the sofa in our lounge, in front of the window. I'm wearing a black blazer & white shirt, with my hair neatly tied back in a bun.

Before I knew it Easter was fast approaching. I had been given more hours at work and was feeling more positive about the role. I also received a work phone, which was a relief as up until that point I had been using my personal phone as my work one, using up the minutes on my contract and meaning that I constantly had to fend off work calls on my days off. I had many understandably frustrated customers when I had to tell them I wasn’t at work that day so couldn’t help, as I didn’t have access to the necessary resources.

Knowing that my hours were increasing allowed me to pull what was, in retrospect, quite a mean April Fool’s prank. Having waxed lyrical about the extra strain put upon me by my increased hours I informed my readers that I would no longer have the energy to write, and that Diary of a Disabled Person was coming to an end. I let them believe this for 4 whole hours before breaking the news that this was a prank. I thought the prank wasn’t particularly convincing but clearly I’m a better liar than I had anticipated, and I still feel a little guilty about the whole scenario. I aimed to ease the upset a week later when I accepted my nomination for a second award, which thankfully seemed to go down well.

Shortly after Easter came the Leeds Digital Festival 2018, something which my office were heavily involved in. I had helped arrange several seminars and workshops all over the city, some of which I got to attend in person, and that was the precise moment when my wheelchair decided to break down. My wheelchair had to be taken to a workshop for testing and repairs, and I was informed that I was lucky to receive a replacement wheelchair for the month I spent without my own, a luxury that was apparently not awarded to most people who were left to levitate if they wanted to leave the house. I was more thankful for the fact that I didn’t have to pay for any of the repairs, which included a brand new set of batteries. I was particularly thankful as the landlord wanted the annual rent up front, on a tighter deadline than the year before, which we could afford but didn’t leave much in my account.

In June things began to deteriorate at work. I would come home in tears almost every night, usually frustrated that I appeared to be making an excessive number of mistakes. Eventually it got so bad they insisted they write instructions down for me, but fortunately it was this that highlighted I had been following instructions without making too many errors, and that the majority of the time the mistakes were in the instructions themselves. However, mutual trust and respect had been shaken enough to create a tensely uncomfortable environment.

It was also in June when I got my first tattoo, a simple piece of calligraphy down my right arm reading “Disability Doesn’t Mean I Can’t”. I was pleasantly surprised to find that the pain wasn’t unbearable, and I had no issues at all with the healing process thanks to some good advice from my boss. Given that they are the only accessible tattoo parlour nearby, even going so far as to bring a tattoo station downstairs for me, I was relieved to get good service; it means I can go back!

Image description: holding my arm up to camera, showing the tattoo down my forearm reading "disability doesn't mean I can't".

In July Jarred graduated from university; I watched from the front row next to my future brother-in-law, and we celebrated by eating together later in our favourite restaurant. Then Jarred, who had been looking for work since finishing his studies a few weeks before, managed to land a job as a care assistant. We both settled into the new routine quite quickly, and things seemed to be going well.

Right at the start of August life dealt me two of the hardest knocks I’ve ever taken a matter of days apart. Firstly, our beloved hamster Tribble managed to escape in the night and hasn’t been seen since. While a hamster may seem a trivial pet to grieve over I was distraught, having lost a loving companion, and I was still struggling not to suddenly burst into tears at random intervals when I lost my job.

They told me their funding had run out and were letting me go, but they were taking on new staff at the time so I’m not sure how much that influenced their decision. I think a disagreement with one of my colleagues, who had told IT that I would go over to see them despite the fact that I had already arranged for them to come to me, had more to do with it.

They tried to ease the blow of losing my job by saying I could transfer to other admin roles within the district, the only problem being that the only ones with regular or substantial hours were based in the inaccessible building. Tired and fed-up, I quit on the spot.

Once again I began job-hunting. The days were drawn-out and seemingly endless, weekends and weekdays merged into one, and I became increasingly depressed. Even accepting more awards taking me to a sum total of 5 did little to cheer me up.

There were a few issues surrounding inaccessible offices, but eventually I found that this time around I had much more luck obtaining interviews due to the work experience I had, so this wasn’t as much of a problem this time round. Less than a month after losing my job I was offered a new one, this time a salaried, full-time role in medical research which my knowledge and skills were much more suited to. I obtained references from my past employer, had my hen do at the local cat café, and bought my wedding dress.

On October 1st I started my new job, helping to chase-up erroneous or missing data, ensuring that anomalies were explained wherever possible, and producing a mistake-free dataset for the statisticians to work on. I was also involved in some trial management skills, booking meetings and promoting studies to boost recruitment, and fell in love with the varied role. The training was substantial which helped to boost my confidence in my ability to do the job. I was never bored and, because it is based at a university, there were absolutely no qualms about accessibility. My colleagues and superiors are lovely and even offered to guide me through the Access to Work scheme, although fortunately for them I had completed the scheme previously anyway.

The winter months grew colder and the wedding fast approached. I saw a few friends and family as the wedding approached, although most of the visits were fleeting as people were saving money for the actual wedding. Clothes were bought, cakes chosen, and invitations sent out. For obvious reasons I am actually writing this before the wedding takes place on 27th December, so I cannot tell you how it went. It is strange to think that I write this as Jarred’s fiancé, but will publish this as his wife. Still, I cannot wait to end 2018 and welcome in 2019 on such a high.

Happy new year…

Image description: Happy New Year written in white text in the top corner of a picture of some fireworks.