It’s been a long time since I have written anything for my blog. It’s all a bit of a mess over here and in need of a refresh! I really would like to be writing here again. To do that, I need first to write an update, to bring you up to speed on where I’m at in terms of my chronic illness. Where I am at is an interesting place. I’ve reached a level of acceptance with my health, where although there is still a sense of loss, there is also a much greater sense of peace. Although it seems like strange terminology to use, I feel like I am finally mastering how to be sick!
New Chronic Illness Diagnosis
There are a few reasons why this website has been neglected. The main reason is that my chronic illness has just made it impossible to keep on top of everything. If you’ve followed along with my YouTube channel, (the one thing I’ve been managing to keep going on a semi-regular basis) you’ll know that I’ve added some new diagnosis into the mix. After a change of GP, I finally got referred to a specialist and diagnosed with PoTS. Then, after two years of chronic arm pain, and a ton of medical gas-lighting, I also now have a diagnosis of Polymyalgia Rheumatica. An MRI has also revealed some severe disc degeneration in my neck which I am awaiting treatment for.
These new diagnoses, and new medications, have made managing all my symptoms extra complicated. I’ve had to take a step back from the work I was doing to manage this. On top of this, I just couldn’t write to the standard I like to write. This is because my brain just does not work as well as it once did. ME/CFS and PoTS both cause awful cognitive issues, which make writing incredibly challenging.
Chronic Illness Calls for A Shift in Priorities
I’m now using Dragon, speech to text software, which does help. However, I still have the same low energy and high symptoms, and its this which really gets in the way of doing anything consistently or well. I started experimenting with Substack, to allow me permission to write less perfectly, to take the (self-inflicted) pressure off. It was intended to be a replacement newsletter, and I really enjoyed it. However, I had a switch of priorities at the start of this year. I decided it was time to step away from the last remainder of work I was doing , and instead focus on rebuilding a new life around my chronic illness. This has gone incredibly well, but its taken all my time and then left me no time for writing on my Substack! I do intend to pick it back up again.
Living with chronic illness is a life of constant sacrifice and having to just pick your absolute top priorities. Then, allowing yourself to grieve all the other things you simply cannot do. This is what I have become the master of this year. At Christmas, I decided I’d had enough. I could no longer keep up even the tiny bit of work I was still doing. I had been trying to get myself a life back. Getting out in my wheelchair on my own with our dog Pip, and attending some groups, while still doing some speaking work. This wasn’t working. Every time I did a piece of work I’d then be shattered and my going out would be abandoned. I couldn’t have both, it had to be one or the other, and I know it had to be wellbeing over work.
A Surprising Improvement In My Mental Health
I honestly thought, and worried, that my mental health would suffer, which s why I held onto that last bit of work for so long. Surprisingly, its now August, and my mental health is the best it’s been for some time. I’m attending regular monthly support groups, a pain café and a men’s mental health support group. I occasionally take Pip out on my own too. The feeling of independence from getting myself out on my own is incredible. I have better sense of who I am again, and my self-worth and pride has increased. I also have more available energy for weekends spending time with Chris. Also for when we go away in our new caravan (the latest new exciting addition to our family!)
There is undeniably still a sense of loss. Doing these new things take a ton energy and requires me to rest a lot. This means I don’t have the time to make videos every week. I haven’t written or update my website for months, and I’ve currently abandoned my Substack. My member’s content is also few and far between. I still want to be able to do everything, but it’s not possible for me. I must prioritise, and it makes sense that the highest priority must be the thing that benefits my wellbeing the most. The shift that has happened for me this year, is fully realising and accepting the truth of this, but being more OK about it.
A New Ability To Take Life On Life’s Terms
The best thing that’s come out of this priority shift this year is that I am now less angry and frustrated than I was. I’m more able to see and say to myself, that I simply cannot do it so why get cross? On better days I’ll do what I can, on days when I’m not well Ill save my energy rather than fighting it, wrap myself in a blanket and soothe myself with a film or an audio book. Tomorrow is another day,
I don’t know where I’ll be next year. I’m not writing off recovery; I’ll welcome it with open arms if it arrives. Acceptance is not me giving in and giving up. I very much hope that one day I will have more energy, and my health will improve. However, constantly fighting, getting angry and sad, reminiscing on all I was once able to do and being sad about all the things I now can’t do was doing me no good. Equally, being on hold and waiting to get better was doing me no good either. Right now, this is where I’m at, and it’s OK. Life in the slow lane is OK.
Hello! My name is Finn and I have a passion for creating honest content, that inspires personal growth and promotes well-being.
Buy my Phalloplasty memoir here.
If you enjoy my content and want to say thanks, become a Friend of Finn and get bonus perks!