Living with the ups and downs of long covid symptoms.

"Are you better now? I'm regularly asked.  It is a difficult thing to admit that no, since having covid in October 2022, I am still living with on-going symptoms.  My lovely GP has gently told me that four months of symptoms isn't actually that long in terms of covid, which feels both reassuring and frustrating.  All I want is to get better and soon.  But there is no hurrying the process along.   The trouble with not getting better after this length of time is that post-viral fatigue starts to be described as a type of long covid (of which there are a few different forms).

When I first heard "long covid" being applied to my health a few weeks ago, it didn't really help!  Countless hours were spent either worrying about how long this was going to last for or frantically trying to work out what to do.  My sleep became disrupted and every time a new minor symptom appeared, I would worry further. Physical and mental fatigue remain my constant companions.  And some other symptoms fluctuate, including joint pain in my fingers, tingling in my left foot, sore throat, headaches, cough and nausea.  It is hard to know what is "normal" for this stage of recovery from covid and I wish I had my GP on speed-dial.

The fatigue is the thing that reduces what I can do each day.  It is completely different to feeling tired all the time. It is like being given only 20% of normal energy for the whole day and this has to be eked out.  The only way to gain a little more energy is to rest in between each task.  An hour of rest may give back 2% of energy if I'm lucky.  But even more tricky is what happens when I overdo things, draining this small reservoir of energy without realising.  The body then puts itself into partial power-saving mode (like on your smartphone) and you are totally wiped out for hours, unable to even listen to music or move much.  I will also be much more affected by symptoms and feel worse for the next few days, feeling like I've gone "backwards" again.  This is known as "post-exertion malaise".  These constant ups and downs have made life feel more like I am on a small boat in a choppy sea.

We live in a culture where we think we can fix things quickly (and sometimes can).  But from what I know currently, there are no quick cures for long covid.  I am following basic guidelines of nutrition, lots of rest, small amounts of exercise, gallons of supplements and anything else I can find.  Recently, I spoke to my sister on the phone who suggested that I must "get this sorted out" (as if I am not trying to).  I had just told her one of the many examples of over-doing things which involved simply standing on the beach, feeling relatively well while talking to my neighbour for twenty minutes.  When I got home, I was instantly hit by hours of post-exertion malaise which wiped out the rest of the day and limited the next few.  How can just standing up cause my body to "crash" you may wonder.  It is an endlessly difficult thing to manage with brain fatigue being just as problematic.  I can manage anything from ten minutes to 45 minutes per day on the computer with any more leading to further symptoms.

Relaxation is key to recovery, which has felt hard to do while by body constantly changes and does things that don't feel "normal".  I have felt an understandable urgency to try to improve my health through using my limited brain energy to look online for answers (don't try it!).  But now I can see that this is going to be slow.  I am trying to be more accepting of how I am but this is a work in progress.  Sometimes, I can feel reluctantly accepting of this "new normal".  And at other times it feels frustrating, confusing, isolating and hard.  It is very natural for me to be a calm, steady presence when others are struggling with health.  So now I need to try to turn that same sense of patience and care towards myself as I try to find a way to keep steady, however long this takes.

 

“The wound is the place where the Light enters you.”  Rumi.