2020 was a tough year. That’s no secret, and I’ve already written about it. I hoped 2021 would be better, like I suspect everyone else did. As the end of 2020 drew closer, little was I aware that something was coming that was going to be far worse.
COVID continued to make life a complete misery in 2021, but in addition to that, I was also facing serious illness. Not just myself, but a close family member, who I won’t name for respecting that person’s privacy, went through the exact same thing, confirming that my condition is something that runs in the family.
When the second lockdown arrived in November 2020, I started having issues with my mobility. The first thing that I noticed was that I was no longer able to walk down stairs normally and had to put both feet on the same step before moving further down. This seemed eerily similar to the illness I suffered in 2015, when my own immune system turned on me and my joints were under attack – rheumatoid arthritis.
Christmas Eve 2020, I moved in with my parents under support bubble rules at the time, and I didn’t return home. I knew I was unwell. Visibly I was getting worse when trying to walk, and concern from my parents grew stronger by the day. In the early days of the third lockdown in January, we tried simple exercises to try and regain my strength and me and my dad would go out for a walk down the country lane where we live when he came home from work. This failed to yield any improvements and it just got to the point where I would dread it. I looked like someone three times my own age.
I knew I was under a lot of stress. The pandemic pushed me to places I’d never been in with my mental health. COVID restrictions created the exact opposite world to which I need to thrive as a person and it wasn’t until December 2020, when the Pfizer vaccine was approved, when I could be confident that life would return to how it was. 2019 was actually a really good year for me – I was invited to the wedding where two really great friends of mine married each other, and I got to go to the Festive Insta Mingle in Chester where I was able to be part of a community I shared a lot of common interests with and just really clicked with, and had plans to do that at least twice more in 2020. COVID took away all of that, and facing such an uncertain future almost made me lose my mind. I couldn’t cope living in a world where socialising was literally illegal for most of the year (and when it wasn’t, not being able to meet more than five people at a time, at two metres distance). Add a fear of COVID itself being on immunosuppressive medication. Add the constant worry over loved ones. Add the pressure of a full time job that didn’t get easier just because of the difficult circumstances.
In February 2021, my Instagram, Pinterest and this blog all completely collapsed, I wasn’t even well enough to stay in my own house, my mental health was through the floor and not only did I not have anything to share at all, I couldn’t muster the energy to keep up with other peoples lives when I was in such a dark place myself. I was in touch with two very close friends, and even with them I was finding it incredibly difficult to open and reply to text messages.
I’d lost all independence. My dad brought me breakfast every morning. Mum made me lunch. It got to the point where it took me several minutes to get from my bed to the bathroom just across the landing. I had to be dragged out of the bath as I couldn’t get out myself. But given the fact that my mental health had been absolutely obliterated by 2020’s events, I knew that going back to the doctors to seek treatment for the relapse of a serious but previously well-controlled condition would be extremely difficult, perhaps even too difficult for me to cope with. All this was affecting my parents emotionally, and in March the situation reached flashpoint and I had the worst argument I’d had with mum in a very long time. I phoned the doctors and referred myself to rheumatology, biting that bullet. (I don’t know why this didn’t happen automatically given blood tests.)
What followed was six long months of hospital appointments, which got more and more emotionally difficult as time went on. My medication was changed and in the Easter holidays I tried to move back home gradually. It didn’t work, because I failed to respond to the updated treatment. I couldn’t live in my own home for more than two days at a time. One time when I attempted a weekly food shop I almost couldn’t make it back to the car (which mercifully I could still safely drive as it’s an automatic and the illness mostly affected my legs) and someone offered to take my trolley back for me.
July was the peak of it all. We had heatwaves and they were very uncomfortable for me. I had seven medical appointments in the space of a fortnight, some of which I had to go to on my own so I had no practical support whatsoever. I had to have an eye test due to being put on hydroxychloroquine, in which I learned I have astigmatism. One appointment had me laid down with my mum by my side, having a steroid injected directly into my left knee. I started to cry as I was reaching the end of my tether, plus I was convinced that they would find something terminally wrong with me and I wouldn’t be alive at the end of the year. I had X-rays done and they revealed that I had suffered significant damage to my knees. After these appointments I needed to recover from the ordeal, so I put in a request to use my spare annual leave, which was waved through.
Therapists I’d worked with reached a consensus that during the pandemic I had experienced an intolerably high level of stress, depression and anxiety for quite some time and that caused my condition to become more aggressive and less treatable, so my previous medication could no longer control it. I’d read some very credible studies about how chronic stress causes the immune system to start to produce excess cytokines – molecules that are partially responsible for rheumatoid arthritis symptoms. In August, as my birthday approached, I was put on a different treatment method that involved the same drug but administered by injection rather than tablets, so was more direct.
At last, I started to notice an improvement.
The Fight Back Begins
I bought myself an Apple Watch and set myself targets that increased over time. There are various activity metrics, three of which are displayed by rings that close as you make progress (calories burned through movement, number of minutes exercised and the number of hours in a day where you’ve gotten up and moved about, with a reminder if you’ve been sitting for the first 50 minutes of an hour). There are also step count and resting heart rate. As my condition improved I noticed my resting heart rate drop from the high 70s to the low 60s or even high 50s.
Logging my exercise on the watch, I set myself a challenge where I would walk over a gradually increasing distance within a certain time, such that I maintained a pace of 3mph. I started with just one tenth of a mile, the lowest distance goal you can set, within two minutes. My first attempt was 3:03. Then I got 2:54. Then 2:39. After seven attempts, I successfully walked a tenth of a mile in 1:57. I increased the distance to 0.2 miles in four minutes, 0.3 miles in six minutes, and so on all the way up to a full mile in 20 minutes (which I eventually achieved in the Christmas holidays in 2021).
In September I had the appointment where I got the news I had been waiting for. My inflammation markers were within normal ranges. I cried with elation and remember jokingly saying after accepting a printout of results that I would take it home and put it in a frame. I was a bag of nerves going but got the news I vitally needed. I couldn’t have coped with it going on any longer.
Days after, I started moving back home fully. By this point, minus the occasional days I managed in my own home, I had been living with my parents for nine straight months.
I now had to deal with the after effects of the illness rather than the illness itself. The walking challenge I mentioned earlier was part of that. From the bungalow renovation we are doing at the moment, we salvaged an exercise bike. It sits in my living room. I used it to get more exercise in and help regain strength in my legs. I got heavier dumbbells for my birthday as well. I also achieved something I thought I never would again – walking down a full flight of stairs one foot in front of the other all the way.
For the rest of the year, I was under quite a lot of pressure at work, because I had annual review objectives I had obviously lost momentum with earlier in the year, plus I had been entrusted with senior responsibilities where I began to assume more of a management role as part of me trying to move my career forward (I wasn’t prepared to let a serious illness stop me with that). There were times when I was covering for other senior people at the same time, too. I undertook some DIY work in my kitchen where I fitted the cupboards with usability upgrades and organisational aids to help me use it with the disabilities I now have as I still have issues squatting down to use awkward cupboards, of which I’ll share a couple of photos here, but I intend to cover this project fully in a future post. There was nobody to help me with this, so I had to do the whole lot, slowly, on my own. Having something to sit on while I was doing it helped.
I was utterly exhausted by the time the Christmas holidays finally arrived, at which point I could enjoy 17 glorious days where I could have some much needed downtime after what was without doubt the worst year of my life. I had a complete shutdown.
2022: Operation Rebuild
I had already made some significant progress with rebuilding my life by the time 2022 arrived, but I still had some way to go. Physically I was doing pretty good at this point, but there remained much to be done – I wanted to give my house a proper sort out to ensure I could comfortably live there and have the fresh start I needed. This turned into the biggest decluttering operation I will likely ever have. Some junk has been binned, piles of old books have been donated and clothes and shoes I haven’t worn in years gone to better places. Some stuff I have kept for sentimental value, however.
Right now I am on a mission to get done all those little things around my house that have been waiting to get finished for years, which in some cases may mean getting someone in.
I was very aware of the fact that I hadn’t spoken to a lot of friends in a very long time due to last year’s events. Especially those friends I made from Instagram. I really wanted to get back into this as it’s an outlet for a passion but also I have made great friends on it, many of whom I went on to physically meet. But because so much time had passed, I was anxious. A lot can happen in a year and who knew what I was going to log on and find out. I got my confidence up by reaching out to people I had phone numbers for. People hadn’t forgotten me. Far from it.
Finally, on “Twosday” (22-02-2022, a Tuesday no less) I made the leap. I reinstalled the Instagram app that had deleted itself from inactivity and went on. I had DMs from concerned friends. I answered them and directed them to the string of stories I put up where I explained last year’s events. I was positively overwhelmed by the 30 or so DMs I got in response, which for an account as small as mine is really quite exceptional. My level of engagement (not that I care about such things) on my first post, a light box with the message “Never give up”, was pretty decent for someone who went a full year barely even signing in to the app.
As I type this, I am now fully independent, in contact with everyone again, and getting back to the things I love and have missed. I’m also now going to more things on my Meetup app again, so I have the social interaction in my life that I badly need.
The Struggles I Still Have
Physically I will probably never recover 100%. I know that this has done damage to me that I won’t recover from. It takes me a lot longer to climb stairs now than it used to.
I struggle with post-traumatic stress. Conversations about hospital appointments set me on edge. Not long ago I was watching the post anxiously for the letter for my next check up appointment, and the day it came I freaked out and started crying. I even find requesting a blood test form difficult. I still have flashbacks sometimes and they are not nice when they happen.
I can no longer run, not that it was recommended for me to do that before anyway.
The clear out I mentioned earlier includes all of my heels, except for those that are sentimental (like the spotty ones I wore to the Housewise Brunch in 2018) as I can no longer wear them and it’s unlikely that I ever will again. Superficial, maybe, but being able to do something before and not now is a sign of damage having been done.
The trauma that last year left is something that will take me a long time to heal from. And then there’s the grief of being healthy before but now having acquired disabilities that will affect me for the rest of my life, at what is still a young age, through no fault of my own.
Things I Have Learned
It’s not an original quote from me, but it’s always darkest just before dawn. I’m reminded that I have survived something that not everyone would have done.
Also, never give up hope. It’s the worst thing you can do.
Good friends never abandon people. Nobody gave up on me through this. I can’t possibly express the magnitude of my appreciation for that.
The Things I Have To Be Thankful For
Having great friends. Absolutely.
My parents. Even if we didn’t see eye to eye all the time, I wouldn’t have survived this without them.
The science we have against COVID. That’s what has allowed life to return to normal.
The NHS for getting me out of this mess.
For two years, my life was devoid of things to look forward to, but I now have positivity in my life again.
Here’s to a much better 2022.