It’s five weeks to the hour since I was sat in the ED of our local hospital. Much has changed.
My diagnosis is now definitive, and all experts (including me!) are in agreement about its cause, if not about the precise mechanism that it worked through. I have bilateral Brachial neuritis, caused by an autoimmune response to a Hepatitis E infection. Whilst this response has pretty much done its job, and I have comparatively little pain now, I am left with damage to the nerves between the brachial plexus in both arms to parts of each shoulder, arm and hand. I won’t go into details, of which muscles are affected, ask me if you’re that interested. What I will say is that it could have been a lot worse. I briefly joined a Facebook group of people also with the condition. Whilst I really sympathise with the posters, many of whom had been significantly affected far more severely than me, I had to leave the group. I didn’t feel it was conducive to the mindset I need to adopt.
I have a reasonable chance of a long-term full recovery, an excellent chance of a partial recovery, and a possibility that parts of the function may be impaired forever. This latter point is mainly in connection to my right thumb and forefinger, but I’m not worried, I’ll still be able to brake and change gear, even if I can’t write with a pen or do up buttons. Different bits will recover at different times, the speed of this is determined by three things. First, the distance any muscle is from the brachial plexus, the further away, the longer the recovery. Second, the extent and type of damage to any given nerve, (ie is any given nerve simply demyelinated and to what degree, or are the axons destroyed - the former takes a few months to be repaired, the latter could take a couple of years to re-grow). The third will be all about the quality of the conditions that I can create to effect the best possible recovery.
This last part is largely down to me, and although it is not an exact science, there are lots of things I can do to optimise my convalescence. Fortunately I was only mildly impacted systemically by the Hepatitis. I actually saw a Consultant Hepatologist this week who told me that I’d been very lucky to have had virtually no other symptoms of the infection, besides the autoimmune response and raised resting heart rate, blood pressure and liver enzyme function. These are all either back to normal now or very close to it. No fever, no jaundice, little fatigue. His view was that my pre-existing health and fitness had protected me from anything more serious. I’m counting my blessings.
Cook your sausages properly everyone.
But my recovery will fall into three broad phases, the first of which is optimising the conditions for nerve re-growth and repair. This process, apparently, is like growing very delicate flowers in a greenhouse in Winter. So I have to do some moderate aerobic exercise, but NOT to the point of fatigue, eat plenty of fruit and veg, as well as other unprocessed foods that contain Vitamin B12 (I’m allowed a steak a week!), but limit processed and refined foods, particularly chocolate. I also need to get plenty of sleep, eradicate stress, and do what I can to maintain joint mobility.
The second phase will be to re-build the muscle function as the nerve connectivity is established, and it’s important not to do this too soon, otherwise there is a risk of damaging the motor neurone again before they are fully established. So it will be the lightest of exercises on my arms to begin with. Once I have a bit of muscle strength I’ll be able to do indoor cycling, but not too much to cause fatigue.
Finally once the recovery looks well underway, I will be free to resume more challenging training, but again, being careful to build it up slowly, so thoughts of audaxes and multi-day rides are firmly on the back burner for now. I haven’t set myself much in the way of timescales, just doing the traditional “take it one game at a time” approach. I am positive I will get back on my bike and ride it as well if not better than I used to, and I hope that comes soon. But my priority is restoring my health, so I’m not going to risk that by being impatient. No, really.
Thank you to everyone that has been kind enough to send support and love in what is a difficult enough year already, I do really appreciate it more than these words can convey.
And I learned new things such as how to get dressed using contortions I would never have thought possible, as well as learning to tie my shoelaces without the use of a functioning thumb. Every day is a school day. To top off this very unusual year my beloved Irons are in contention to actually qualify for Europe, on merit. I’m not getting excited, but it does cheer my spirits to see us playing with skill and heart.
My main activity for the next few weeks is going to be walking in the countryside as much as I’m able to. So the end of lockdown is a welcome sight on the horizon, I need to find new vistas to see and paths to tread. Not that I don’t really value the beauty all around my home and thank my lucky stars for it every day. I think we are all ready for a change, and I for one see the lights In front of me