Long Covid Journey: Activity

 Long Covid Journey: Activity

Well, hasn't the definition for this word changed over the last eighteen months!  I won't list what I used to do because of the demoralizing effect of such reminiscence, but I used to be fitter than most, considering that I was living with osteoarthritis

There is a line between what might be considered a 'normal' level of activity for a grown up human in fair health.  That line is definitely drawn in sand and the tides of life make it necessary to redraw it on a regular basis...  Whilst most new lines will be redrawn in exactly the same place in the sand, some tides will make it impossible to reach that same place again for a long, long time, if ever.

Those who suffer from Post-Covid Syndrome have to learn to draw that fresh line again, in a different place, after every tide, and be grateful that they are able to draw at all!

Indeed, the Chronic Fatigue experienced in most cases of Long Covid is intense, unexpected, relentless and crushing; in simple terms, it wipes you out!  So it may take months to accept that the previous line has been erased for good.  It may take even longer still to be able to grab the stick with which one may attempt to draw a new line, in a place where it may or may not turn out to be viable...  And many times, the new line, which took a massive effort to trace, will either melt away as the sand is too damp or be washed in front of one's eyes by a fresh wave of unbeatable fatigue!

It does feel like Sisyphus' Task.  

It does mean that the whole mindframe must be reset to accommodate the parameters of Chronic Fatigue.  

No-one knows what it is like to be suffering from this syndrome unless they are confronted with it themselves; WRONG!  No-one pays much attention indeed, since it is not often discussed therefore a common widespread level of understanding is not easy to find.  Furthermore, it has been stigmatized for eons and likened to malingering...  This makes it difficult for any sufferer to share their experience and contribute to the growth of a general understanding of the condition and some ensuing well-needed compassion.  Gaslighting is hurtful and many had rather not risk it than try to explain how they are affected...

I have learnt in the past year that fatigue is not 'in one's head'.  I may be linked to a neurological issue, but is certainly not something that anyone would claim to have in order to malinger.  It wipes out any chance of challenging oneself to making any valuable contribution to society but also to merely enjoying a decent level of everyday life activity.  It is literally crippling.

It may be useful to present here a breakdown of what 'activity' really means when one is crippled with Chronic Fatigue.  Activities worth considering productive are only accessible at a certain level on a scale of 1 to 10.  I personally have not experienced any fatigue level lower than 6 for over a year, so I shall describe what this may entail:

Activity at level 10 of Fatigue:
Lift head off pillow, struggle to shift position in bed, get up only when absolutely desperate for the toilet - preferably use a urine bottle; give in to sleep several times during the day; know that a whole day has passed and no decent level of activity has been achieved; too tired to even feel depressed or hungry.

Activity at level 9 of Fatigue:
Manage to get up and wrap a blanket around shoulders in order to visit the toilet; hopefully have enough energy to pop into the kitchen and prepare a cup of tea to take back to bed with a banana for breakfast; day in bed, only getting up for essential activities such as brush teeth, use toilet, grab some easy-to-consume food; drift off to sleep two or three times and still go to sleep easily at night.

Activity at level 8 of Fatigue:

Feeling markedly more alive upon waking but may find it hard to keep eyes open after breakfast then wash & dress; regular periods of rest necessary in between activities, falling asleep at least once during the day; some low/medium-energy level activities, possibly one high-energy level activity instead.
Often pushing oneself to do more in order to not feel useless; resulting in migraine attacks.

Activity at level 7 of Fatigue:

Waking refreshed and able to stretch; planning a day with both low and high-energy level activities, carefully inserting adequate periods of rest in between; possibly one short nap.

Activity at level 6 of Fatigue:

A rare occurrence: Unable to stop oneself enjoying more activity, all/any energy levels, but paying for it later or the day after...  Pacing and planning rest is arduous on such days, but absolutely crucial to avoid relapses (return to days on end of extreme fatigue, possibly bed-bound for several days).

Spring 2023 list of possible activities:

Low energy level activities:

reading, watching on-demand TV, cuddling the cat & pet care

Medium energy level activities:

brush teeth, toilet, wash, nail care, foot bath, emails, social media, diary, online shopping, singing, crafts

High energy level activities:

shower, shampoo, hair styling, moisturizing, getting dressed, cooking, cleaning, tidying, going out with rollator, collecting prescriptions, phone calls (CAB/work/medical), socializing (Knit & Natter group)