So, right now I’m lying in my hospital bed writing this, well actually it is still the 18/03/2020 23:15 but I imagine this blog will take till the end of the week to actually write and finish so I’ll continue writing it as and when I can, but I’m starting it tonight. Though already I can feel my eyelids closing, my brain shutting down trying to remember how each letter goes in front or one another and my eyes are blurring as the words jumble up on the page.. ok, I’m not going to lie, I did just fall asleep for what felt like forever.. but it’s 23:30, it’s only been 15 minutes. I keep nodding off.. that’s the life of chronic illness, not just in hospital but at home too and that’s what I’ll be talking about in this blog. Oh and again..
Ok I need to rest and restart tomorrow.. well once I’ve had some sleep!
It’s now a new day, the 19/03/2020 11:31am and I’m determined to finish this blog!
I’ve wanted to write something since the COVID-19 virus outbreak started in Mid-late Feb happened but I haven’t known where to start and I wanted to write something that made sense and had a purpose to it. Then with everything stepping up a gear and the new guidelines being written stating that everyone who is elderly or with long standing health conditions that could affect them fighting this virus/compromised immune systems should be starting to self isolate for not just two weeks now but being advised 12 weeks and it’s causing lots of concern for lots and lots of people. But whilst this is a shocking to a lot of people and lots of new Gifs and Memes keep popping up joking about the difficulty, loneliness and hardship of this struggle and the awfulness of being board of it all after just a few days? Well, I’ll be honest. Although I absolutely sympathise with everyone suffering in isolation right now (me included in that, though currently I’m isolated in hospital not home, not due to the virus don’t worry, due to my ongoing conditions and recent emergency surgery needed, but once I am home I too will be in self isolation, in the countryside, with my parents). But with all this talk of self isolation and the huge shocks and struggles it’s bringing on people, I have to admit I can’t help but lie back and laugh to myself a little, not at anyone or anything in particular or at the awful situation we are in with COVID-19. Of course not.
But instead at how the world is finally seeing a little glimpse of what life is really like for us. For the unseen, the chronically unwell, the bed and house bound, the invisible ones not seen for weeks or months at a time and having to cancel, postpone and plan appointments and outings like a military operation. For most of you this is the extreme, the unusual, the unprecedented. Everyone is in it together and that I stand by, 100%, we definitely are in it together and we should be helping each other out as much as we can, (and from what I can see we are and it’s wonderful to see). But I also just had to write a little post talking about “the other side of it. The side people don’t see”. Because although this is unusual for a lot of you, that isn’t the case for all of us. For a bigger majority than people realise, this, this is our normal. We are the hidden numbers, the hidden statistics and now we are being shone a light on and finally being noticed, whether intentional or not, we are being see and for once I am glad.
The whole of the UK and world is in a panic and feeling constantly worried right now. But I just had to post something to say, although the virus is new, this 24/7 worry isn’t, well for me it isn’t, as for myself and many others this is how we live with compromised immune systems every single day. These are the worries we face every day, the tiny minute germs we have to avoid every day, the simple coughs and colds which don’t harm the healthy individual out there but for me (and others like me) it can make us extremely poorly. On top of that there’s lots of allergies I have to be careful of and the smallest things could set me off. But all this is something I’ve faced for years and had to be careful, for years, long before Covid-19 came, myself and many others included in that but again we were hidden, we were in the darkness and now because of Covid-19 we are being brought back into the light.
Still 19/03/2020 on Wednesday, in March 20202, but this time it’s 20:48 and in between the last time I wrote this I’ve had two naps, half a dozen intravenous medications, inc antibiotics, antifungals, steroids, anti emetics, fluids, pain relief, then half a dozen medicines through my feeding tube, drained half a litre of bile, two dressings changes inc the big one with the surgical and trauma team and then more physio/breathing treatments and more and more..
Exhausted just thinking about that? Me too.
You may be thinking well at least that is just in hospital, not at home right? Nope. All this continues at home, the treatment is less aggressive to what I’m on now and there is slight changes of course, yes and things are always done differently at home so different yes but stopped no.
I have had to be aware of my surroundings for so long now and with my very lack of immunity the last 18 months especially. That simple cough or cold you get and so easily pass around without battling an eyelid, well that simple cold has left me in HDU (High Dependency) fighting for breath and with complications added on top that can leave me ending up in intensive care fighting for life.
Now I of course don’t expect everyone to look at me and suddenly read mine or anyone’s mind, know every single illness out there both visible and invisible (as lots are actually very invisible you wouldn’t realise) and never go out in public with a cough and cold again. All I’m asking is that we remember this feeling right here, right now and just for a moment remember the fear you have right now about Convid-19 and the adamant feeling you have to constantly wash your hands, gel whilst out, being so careful of people, germs and surroundings. All of those feelings, just for a moment hold on to those and imagine that 24/7. Once all this is managed and better the majority of people will go back to normal and all the above won’t matter anymore, or as much. But for people like me it doesn’t go away, it never does and that fear, worry and checking is constant. All I ask is while we deal with what we are right now we just take a moment to remember those like myself who deal with these fears day in day out and you may be thinking, “ok, that’s awfully sad but what can I do to help?” well good thing you asked because no you can’t fix my condition but you can do some very simple things to help and it’s as simple as it says on the tin and what you are already doing.
- Washing your hands properly, thoroughly and most importantly regularly with hot soap and water.
- Using hand gel (when the above is not available to hand).
- If you know a loved one, a partner, parent, a friend, a school friend of your child who has a condition/illness or is immune compromised or you think might be then “just ask and if they say yes, ask what you can do to help to minimise the risk.
- Stay home and practice social distancing if you are infectious.
- Never be afraid to ask, we’d much rather you did than did not.
YOU can help though. You can. You may think “how can just washing my hands help?” But I’m telling you can it will, it can and it does and its proven. Then there’s the simple thing of communication, yep, talking to one another. Being honest, listening and understanding that when someone tells you their child, mum, dad, brother or partner has a low immune system, needs to be super careful around germs, coughs and colds etc that we listen and respect that, not just gloss over it. I wish it didn’t take Covid-19 to do that but I don’t, well I hope no one will ever just “gloss over” anything like that now, now they’ve had a glimpse in our bubble it really does show a world and frightening reality like they’ve never seen before.
So, there it is, my personal ramble blog on Covid-19 for tonight, ooh look I am finishing finally, only took me two and a bit days and it’s 19/03/2020 (just!) 23:46. I hope this has been a good read and a different blog to all the news stories out there. Sometimes I think its important to look at things at a different angle, perspective and I definitely think this blog does that!
It’s now 23:23 and no I haven’t magically gone backwards in time (though that would be pretty cool! Avid Dr Who fan right here! But alas not that). Instead it’s 24 hours later, 20/03/2020 and I’m back to finishing this blog, only taken me three days but I will finish before midnight!
So if you’ve got to the end of reading this and all my rambles, firstly, thank you and do let me know what you think, and for all those self isolating I’m with you in spirit (in hospital) but fighting all the same and together we can and will get through this. Keep sterile, keep safe, keep busy, look after yourself and very importantly your mental health too – my next aimed blog is on self isolation and mental heath/self care/things to do, so keep an eye out for that and any other blogs or things you’d like me to write (or video/film as I can do that too) then just let me know! But for now I hope you enjoyed this little ramble and it reminded anyone reading it that no matter what or wherever you may in the UK right now that you are not alone, I hear you, I see you and together we can get through this.
We’re in this together. One day at a time.