A year. One whole year.
A year ago I went to work feeling under the weather, cried when a colleague asked if I was okay, left at lunchtime to do my PPA at home, felt progressively worse through the afternoon, got my partner to drive me to Plymouth for a PCR & didn’t go back to work for two weeks…
And that’s my (not very) exciting story of how I came to test positive for Covid a year ago and am now living with Long Covid.
Let that try to sink in, even a little bit, A YEAR. Not days/weeks/months, a whole entire year. A year of unknowns, a year of trying every self-help method/medication there is, a year of trialling different tablets because ‘it is all so new, we are at the point we can just trial anything really’. I’ve said it before but it’s weird being a bit of an experiment; normally you have a problem or become unwell, you go to the Dr’s and they’ll have an answer, a test or a medication that will resolve your issue.
Not this time. They ask when I’ve had Covid…it’s on my record and yes, I have had it twice — if you’re doubting that, it was confirmed by symptoms and both positive PCR’s. But I explain it over again and that I understand we all know it’s unknown but I would like X, Y or Z… To at least try. It’s been a year of trying. A year of trying ANYTHING that may help to alleviate symptoms or lead us to a clearer understanding of why I’m still not better. Although I have been told I’m ‘ahead of the curve’ with everything that I’ve tried, it’s still hard plodding on and keeping motivation up when it’s knocked by the daily symptoms which just don’t want to give my body a proper rest. I sleep but it doesn’t refresh me at all — I wake up feeling rougher than when I went to bed, I take paracetamol but it doesn’t ease any pains, I do everything I can I’m really trying.
A friend was explaining the level of challenge to another friend recently and said ‘when I’m talking, Vic’s resting’ and it’s as blunt as that — I am resting my body, catching my breath & steadying my breathlessness and processing the conversation (at a slower pace than most) whilst others are speaking. Hearing that reminded me, who is living it every single day, just how bizarre it may seem to others.
It’s the most supportive thing people can do for me is to make simple plans on my behalf, understanding my better parts of the day so I don’t have to explain myself too many times, giving me lifts so I save energy on driving and just generally not expecting too much of me — you’re all lifesavers even if I don’t tell you, thank you.
Friday 13th — the day I tested positive for the first time. I’m not necessarily superstitious but believe me that’s not my favourite day. (Neither is 10th July — Covid for a second time, ugh!) My sister also tested positive the following August on Friday 13th — weird?
The good news is that there are trials, tests and investigations ongoing which will hopefully support further recoveries and as well as us Long haulers, to also benefit the CFS/ME communities. I know there are many people out there who will be welcoming any news from those when it comes. I have invested in physio support to help my Dysfunctional Breathing Pattern Disorder which has helped with some breathlessness at rest, I hope this will continue to improve during any movement. Slowing down and calming my nervous system has helped to rest my mind and alter my lifestyle which I hope this will soon support my body in recovery.
It’s been a year of my body not being right and 9 months off work. Going through the motions of half terms, holidays, beginning/end of terms when you’re not in the thick of it, is sometimes challenging. Just because I want to be doing it as well. I’ve begun to process many aspects of being chronically poorly and have adapted my lifestyle accordingly, but not teaching is one aspect that I miss. That does make my heart hurt. I know it’s temporary but I miss leading children’s minds through the busy curriculum, I miss listening to their imaginations out at play time, I miss the crazy days, the lead up to Christmas, practising, practising those nativity scenes. I miss the responsibility and buzz of a busy job. I miss telling people about my achievements when they ask how I am or what I have been up to.
My full time job has been recovery; appointments, referrals, research, informing, understanding and amongst those — trying to rest.
I wish I could answer when people ask how I am. I want to give them a proper answer, update them on where I’m at (because I hope they care and it’s important to me) but I worry people don’t have time for the answer or don’t know what to say — which is totally okay. I think it would be much easier if there was a telepathic way to update people around me on where I’m at, what kind of week it’s been or what are the latest treatments that I’ve tried, but without me having to explain myself or bore people. I really wish I had more to update people with, more interesting things that I had been up to or interesting things to share about myself. It’ll come back but it’s hard trying to find other purposes for the time being.
This post may be repetitive of my previous writing, quite like my days — they ebb and flow, peak and trough but ultimately things feel a bit repetitive at the moment. It will pass.
Some of the hardest moments recently have been not being at my MA graduation and dropping my netball dress back. Albeit hopefully temporary measures these have still been hard to accept and process. I’ve been missing the interactions amongst these groups, the conversations and togetherness of writing a dissertation, the spirit of a team game, achieving, completing or contributing towards something. The feeling of ‘we’re all in this together’ basically — but I have that in a different group for now and that’s okay.
Fresh air is good.
So are family and friends.
Laughing.
Good food & hot chocolates never goes a miss either.
