It’s been a while since I last wrote here, but recently I thought the time was right for an update. Partly because I still receive messages and comments from many of you, which is lovely, but also sad because it reminds me that Long Covid is still very much a part of people’s lives.
There’s another reason, too. For a while, my symptoms seemed to be improving, and I began to feel that perhaps I was finally making some progress. Unfortunately, several relapses since then have brought me rather firmly back down to earth, which is very common with Long Covid.
My main symptoms remain much the same. My energy levels fluctuate enormously, ranging from what feels like zero to perhaps 25 per cent of what they once were. I still experience aches and pains in my legs, alongside regular bouts of cold-like symptoms that seem to arrive every other week. Some days are better than others, but the unpredictability remains one of the most frustrating aspects of living with this illness.
Fortunately, after five years, I now have what can only be described as a small fleet of mobility aids! I have an electric wheelchair, a larger mobility scooter and a specially adapted van that allows me to take either of them out with me. They have made an enormous difference to my independence, giving me opportunities to get out of the house and enjoy things that would otherwise be difficult, if not impossible.
Yet a few weeks ago, something happened that reminded me just how complicated using these aids can feel.
I was out on my mobility scooter, walking my little dog Hank, when a man stopped me. I cannot remember exactly how the conversation began, but I definitely remember his assessment of my situation.
“That’s lazy.”
He was referring, of course, to my decision to use a mobility scooter rather than walk.
Now, I understand that it can be confusing for people to see somebody walking perfectly normally one day, only to find them using a wheelchair or scooter the next. I am an ambulatory wheelchair user, which simply means that I can walk, but not necessarily very far or without consequences. Some days I can manage considerably more than others, and there are times when walking a short distance might be perfectly possible.
But being told that I was lazy for using my scooter was not particularly helpful.
At the time, I did the very British thing of laughing politely before carrying on my way. I didn’t challenge him or attempt to explain the complicated business of managing a chronic illness to a complete stranger. I simply smiled, laughed and continued walking Hank.
Unfortunately, the comment remained with me long after the encounter.
It reignited an insecurity about using mobility aids that, if I am completely honest, has never really gone away. Somewhere in the back of my mind, I still carry the uncomfortable feeling that perhaps I am not doing enough to combat this illness. That I ought to be trying harder, walking further or pushing myself a little more. That using a scooter or wheelchair is somehow taking the easy way out.
Of course, on a practical level, I know that isn’t true. My mobility aids are sometimes the only reason I can get outside with Hank, enjoy some fresh air or do something that resembles ordinary life. They also allow me to conserve what little energy I have for other things, rather than spending it all on getting from one place to another.
The complication is that, on some of those occasions, I probably could walk Hank. I could leave the scooter at home, put his lead on and walk around the neighbourhood. I might even manage the whole thing without appearing to struggle very much. To anybody watching, there would be little reason to suspect that anything was wrong.
What they wouldn’t see is what happens afterwards.
Walking Hank might use up most of the energy I have available for the day. It could leave me struggling to do anything else, or worse, trigger a relapse that takes considerably longer to recover from. That is one of the cruellest aspects of Long Covid and ME/CFS. Being physically capable of doing something doesn’t necessarily mean that doing it is a sensible decision. It also makes for lovely discussion with mobility welfare assessors.
Yet despite knowing all of this, I sometimes find myself choosing to walk rather than use my scooter, simply because I don’t want to attract attention or invite another unwanted comment.
I know how ridiculous that sounds. I am potentially making myself more unwell because I am worried that somebody might think I am not unwell enough.
But there it is.
I suspect this is something many of you will recognise. Living with an illness that fluctuates, particularly one that is largely invisible, can leave us feeling as though we are constantly having to justify ourselves. We become unusually conscious of how we appear to other people, sometimes worrying about what they might think before they have even said anything.
And perhaps the hardest part is that after a while we begin to question ourselves.
I wish I could say that I have reached the point where other people’s opinions no longer bother me. I would love to tell you that I simply ignore such comments and carry on without giving them another thought, and it looks that way to most people. Unfortunately, that would not be honest. I am still learning to accept the limitations of my body, even after all this time, and some days I am considerably better at it than others.
For now, I am trying to remind myself that using a mobility aid is not an admission of defeat. It is a practical decision that allows me to make the most of what I can do, without unnecessarily sacrificing the rest of my day.
I don’t always manage to remember that, particularly when somebody makes a thoughtless comment, but I am working on it.
Anyway, I wanted to share this little update because I know many of you are navigating similar experiences. However this post finds you whether you are enjoying a better spell, struggling through a relapse or simply trying to get through another difficult day; please know that you are not alone.
I also wanted to reassure you that Life with Long Covid is still very much here, even if I haven’t been particularly good at keeping it updated recently. All the podcast episodes will remain available, and I hope to continue writing whenever I can.
I would also love to hear from you. If you have an experience, reflection or something you would like to share with the wider community, please get in touch. I am always happy to consider submissions, and it would be lovely to give more of you an opportunity to tell your stories.
Thank you for continuing to read, comment and keep in touch, even during my rather extended periods of silence. It means a great deal.
Hank doesn’t seem to mind whether I walk beside him or follow along on four wheels. He is just delighted to be out.
Perhaps I should take a little more notice of him.
Paul
Thanks for the update Paul. I am in a similar position, and very much relate to this. I have made some progress, but not that much, the main change is getting better at living with my Long Covid through pacing. Its bad enough my own sense of guilt and desire to do more, leading to a tendency for boom and bust. The thoughtless comments of others, and all the general ignorance and misinformation which is still around, can be a real drag. We need to keep doing what we know is best, not waste our energy on such fools!