Reality & frustrations of a chronic illness.
‘I don’t know how work looks for you in the future yet.’
THE hardest words to hear. Nothing has compared to hearing that. Medical professionals are only telling me the truth, they have to, but I don’t like hearing it.
‘Poorly is determined by change compared to your previous life. You are really quite poorly and disabled by this Victoria.’
A Dr once told me this when I basically was trying to validate my own inability to work/resume a normal life/need to feel like I have to justify my lack of abilities. It is difficult to explain how unwell I am in a simple ‘How are you?’. That’s not me not trying hard enough to explain, rather the invisibility of the illness lends itself to questions, doubts and in-depth descriptions. Whether that is because I feel the need that I should justify myself or whether it is the reality, I don’t know but for some reason the lack of visible illness makes it feel 10 x harder to carry.
I try to put into words what Long Covid really feels like, what I face on the daily, what grinds my gears, what sends me to the sofa and to bed but it is exhausting. The fact that I still have to explain to Dr’s that I really did have COVID twice, both with symptoms & positive PCR tests, despite the fact that it is recorded on my notes, is really quite tiring to say the least.
Phoning the Dr’s surgery 27 times, yes 27, to extend my sick note, not even talk to a Dr, but 27 times because the phone queue was always full.
Doesn’t sound like much does it? Not really an onerous task you might think…Why couldn’t you just put your phone on loudspeaker ringing and leave it on beside you whilst you do something else…that’s what most would do wouldn’t they? Yeah, thing is with Long Covid cognition difficulties, chronic fatigue and breathlessness (only 3 of 29572995 symptoms) all mean I can only focus on one thing at a time.
Put it this way…I’d rather be knee deep in an Ofsted inspection. Sounds absolutely crazy doesn’t it? It’s my truth though and I really do mean that. Hand on my heart, it is true, that is how I feel, how boring being chronically ill is. It is relentless. I’d do anything to be teaching, happily tired and just busy living a normal/manic (my pre-Covid) pace of life. This is the hardest adjustment and not currently being able to teach is possibly the hardest fact of it all for me, at the moment that is anyway.
I know I am ill, but it sometimes feels like I am not quite ill enough, to justify the time off work (even though we all know that is ridiculous because I’m not currently fit to work) or to justify the rest and restorative days. I feel like I have to justify my blue badge when I’m out and about — but actually this has really, really helped my independence and my ability to visit certain shops or towns — it really supports my limited walking abilities. I know I deserve it, the council authorised & issued it to me and I couldn’t do certain day-to-day activities without it, yet I still doubt my need and feel like I should justify myself.
I am now 5 weeks away from it being a year since my first COVID infection, at 329 days since that time so I am feeling frustrated. It’s been nearly a year since I first became unwell.
Whilst dealing with all of this, there are aspects that I am still finding extremely frustrating;
- not being spontaneous- having to plan EVERYTHING including resting before & after just an hour of activity
- having to pace even the good stuff — seeing friends, reading, painting, drawing, being outside
- I just want to have a coffee without the consequences of palpitations & my body shaking
- feeling like I need to explain myself all the time
- wanting to explain myself, so that people can better understand my challenges, but not having the energy
- my job. I miss my job like you wouldn’t believe
- postponing skiing and not being able to book any holidays
- I really miss walking outdoors for long distances and not needing to worry about time & structuring my day for rest
- constantly feeling like I am waiting for the next month to pass, to reach the next milestone, for another day or week. Just waiting and waiting…
@mindfullyevie (check out her instagram, totally incredible) wrote so perfectly in her book ‘everything is always changing’ the clearest thoughts which rung home so many accurate depictions of chronic illness, some of those thoughts which I just couldn’t put into words myself.
@mindfullyevie writes ‘Chronic illness is not enjoying time off work. It’s being heartbroken that you can’t work.’ — Just this. In a nutshell, this.
As well as…
‘Not being able to work doesn’t make me less valuable than those who can.’
‘Please don’t think the reason I’m still sick is because I’m not trying to get better. I’m trying so hard.’
Basically @mindfullyevie, thank you for writing your beautiful book.
And what we all really need to do, ill or not, as @mindfullyevie says ‘stop accepting the idea that you are worth more when you can do more.’ — because aren’t we all really just overworked, stressed and chaotically trying to conform to societal norms or at least juggle an unachievable life/work balance? That quite honestly, anyone who cares about us doesn’t actually give a shit about. They just care about us being well. (Note I’m deciding it should be life/work balance NOT work/life)
A question I have been asking myself for a while now is — at what point do you accept this is a long term illness and just try to build a different life around it?
At the end of the day, this current state isn’t permanent, but at the moment it is really quite tough.
That is reality and it is okay that, that is quite rubbish.
