This is the first thing I’ve uploaded in almost a year. Before anything else, I want to explain my absence. Unfortunately, it’s not going to be a very cheerful post. I was having a very difficult time at the end of last year which is when I stopped writing. I think 2020 has been a difficult year for most people. I know I’m not alone in struggling to cope with the consequences of the pandemic, chronic health problems and changing personal circumstances.
What has happened over the last year
I left my PhD programme towards the end of last year. It was a very hard decision to make. In the end, I felt there was only one sensible choice because I was in no position to return to study. I wanted to write about what happened but I couldn’t get anything onto the page. It was too upsetting. I had such determination that I’d finish no matter what and I worked so hard to make it happen. It feels very unfair. At other times I feel like a failure. Eventually, I wasn’t writing anything at all. The longer I left it the harder it was to return to writing my blog.
Then a distressing event last year really shook me. My partner was walking me home from my yoga class when a young man crashed his motorbike in front of us. A number of people came to help from the nearby houses and shop. I was on the phone with the ambulance controller, following her instructions and trying to help the lad until the ambulance arrived. Later that evening I learned he had died. I had flashbacks and nightmares for some time afterwards.
My migraines continued to get worse throughout and I didn’t know when that might change. My consultant neurologist had put me on the waiting list for Botox for Migraine Clinic, but I had no idea how long the wait would be or if the treatment would be effective. Being poorly constantly had an effect on my mental health. The migraines made it physically difficult to write as my screen time was very limited due to pain, dizziness and other migraine weirdness.
The combination of these three things contributed to my becoming depressed. I sought counselling through my GP. The process of getting referred for counselling was arduous and I nearly gave up several times because of the seemingly endless forms and telephone assessments that only got me moved from one waiting list to the next. I tried using my self-help resources and the materials from other courses but I couldn’t pull myself out of it. Just as I reached the top of the final waiting list lockdown started and face to face counselling appointments were suspended.
In February we bought a new house that needed some renovations. Work was just about to start when lockdown arrived and the tradespeople all went home. I’ve had to take on a lot more of the organisation and practical work on the house than we intended. I’ve often found myself doing things I’m not really well enough for and that’s been stressful and exhausting. After a couple of months, I realised I only have the capacity to work on one project at a time so I decided to forget about trying to return to writing my blog to take some pressure off. I’ve been neglecting my routines and self-management activities for longer than I intended. I’m very fortunate that we can manage the costs of this and that we have a good builder but it’s a lot of work that isn’t really compatible with my symptoms and it’s very stressful.
And then there’s Covid-19. It’s affected everyone, and many people have it much worse than I do, so I’ll only mention a few of the particular consequences it’s had for me. All my groups stopped, including an excellent course I was attending on coping with long-term illness. Counselling was only available by phone or video call. The migraine clinic suspended appointments initially during the lockdown. I got my first set of Botox injections for migraine in February. After initially feeling worse for a week or so there was a noticeable improvement in pain which gave me a bit of hope. My second Botox for migraine appointment was delayed until June so I was effectively starting again as if it was the first treatment. My support network is largely inaccessible in ways that are most important to me. Where I live covid restrictions we can only meet outside in small numbers. Unfortunately, it rains a lot here and now it’s getting cold and dark early too. As a result, my social life is looking a little bleak this winter.
How are things now?
Telephone counselling didn’t work very well for me so I never got counselling when I needed it. I can refer myself again when face to face counselling resumes, but I have no idea when that will be, or how long the lists will be at that point. Thankfully, the depression has lifted and the trauma of witnessing the accident resolved with time. It’s still tough going but most of the time I feel I am struggling but just about coping. Then every so often I stop coping and have a Very Bad Day. My partner and I are both having a hard time and we both show signs of being overstressed, but we are supporting each other and I feel we’re facing our problems together and I’m very grateful for that.
I got a set of Botox injections when the clinic had started up again early in the summer. As before I felt worse before getting some relief from the pain. However, my next appointment is already overdue and there’s no knowing when an appointment might come through. The effects of the injections have worn off and I’m experiencing plenty of pain and discomfort again in addition to the disorientation and disequilibrium that never stopped.
If you imagine a coat-hanger headache (pain in the neck and shoulders), couple it with the fuzziness and sensitivity of a hangover (or head cold if you don’t drink), and then add in the seasickness and vertigo of a channel ferry crossing in rough seas you can more or less imagine what an averagely bad day is like. Thankfully, I have a strong stomach and rarely vomit. It’s not the worst illness. It’s not unbearable, but it’s a shit way to feel and it’s not conducive to getting stuff done. Around once a week I need to take a ‘sick day’ or two when I basically take the day off to go to bed or rest on the sofa and in between I make an effort to follow a basic routine. It doesn’t feel like I get very far before I end up back in bed again for another sick day.
We recently agreed with the builder that we’d take a short pause in the house renovations to get our heads straight. It’s already been longer than intended and I feel bad about that. I’ve realised I’m just not capable of doing the work at the moment so we need another strategy that relies less on me – I’m just not sure what that’s going to look like yet!
A sunny September combined with a break on the new house allowed me to get to my allotment and do some serious tidying up after neglecting it all summer. The allotment always lifts my spirits and I’m happy that I’ve been able to get a number of beds prepared for spring.
I’ve started to write again and I feel really good about it! I’m reorganising my notes and files which had become an unwieldy mess. I’m happy to see I’ve got a good collection of interesting articles and ideas. I still feel sad that I didn’t complete my PhD but I’m glad I’m able to use what I’ve learnt and some of the materials I’ve collected. I feel more hopeful than I have for a while. Having something I care about to work on makes a significant difference in my mood. It can make a good distraction from milder symptoms and it’s good to feel I have a purpose again.
All in all its been a horrible twelve months. I’m very frustrated by the limitations imposed by my illness. There are so many things that need doing and I have so little capacity. At the same time, I know how important it is for my mental health to keep my attention to what I can do. The first task I’ve set myself is to try and design some sustainable working habits that will help me keep writing with my current health issues. I’m already working on a couple of posts related to that and I’m aiming to publish one soon.