Chronic Illness and Covid Round Two

I have been saying over and over for weeks; I must get my blog started again, I’m going to write a blog post today, I need to get my ass in gear and other various half ass attempts to start writing again. It’s hard to say why I’ve been quite so demotivated recently and maybe it doesn’t require analysing, it just is what it is.

Anyway, so here we are still trying to navigate life through the delight that is Covid. This week I was supposed to treat my Mum to her Christmas present from her three kids; I was going to meet her in Crawley, see the family and then head to Brighton the next day for a meal and to see James Blunt, someone she was very excited about seeing live. However, as luck would have it, on Monday both Mother Hen and I tested positive with Covid, over 160 miles away from each other and having not seen each other in months. Seriously, you can’t make this shit up! There’s been a lot of chat about how mild this variant is and how many people are barely symptomatic, so I thought I’d share my experience. It sucks monkeys balls!

My girls keeping me company on a Friday night

I started with a very sore throat and painful ears, and then progressed onto heavy cold like symptoms and what I can only describe as a heavy lethargy, my eyes just want to be closed but I can barely sleep. it seems to come and go in waves; last night I was feeling pretty perky and thought oh good this must be the end of it, then I woke this morning feeling like hell again and struggling to move out of bed. I’d describe it as worse than a heavy cold but not as bad as flu. It’s currently day five so I did a test anyway and it, of course, came back as positive so early release seems unlikely at the moment. On the plus side though my Mum’s test was negative today so hopefully that means she’s on the mend, as she’s been feeling pretty crap too. I am triple jabbed and thankful that the symptoms are not a lot worse, I am also thankful that so far, somehow, my partner has avoided contracting it.

I initially caught Covid at the beginning of January 2021, so it’s been just over a year. January/February seems to be when my immune system just gives up, if I’m going to get ill it quite often seems to be in these months. In the year since having Covid I have struggled more and more with severe fatigue, it’s hard to know whether this is a consequence of Corona Virus or whether it is to do with my diagnosis of FND in December of 2019.

How can you not smile when you get these cuddles?

What does concern me now is the recovery time from this second bout and the effect it will have on my body and other conditions. It’s easy to forget how long I was out of action last year, and it’s only really the Facebook memories that remind me what a slog it was getting back to work and trying to get back to ”normal” I question what normal is for me now on a regular basis, but I will address that more in my next post.

Sleeping Poochy pic because, well, why not?

On a positive note it seems that being ill again has motivated me to restart this blog and now I’m determined to continue blogging with all the things I’ve wanted to say and have been swimming around in my head for the last six months. I’m annoyed at myself for letting it slip but trying to give myself some slack. We find ourselves in strange times, and on top of that we have our normal lives and worries to contend with. As such I think it’s a case of do what you can, when you can and lets try not to put too much pressure on ourselves. With that in mind, and the fact I’m struggling to keep my eyes open, I shall leave it there for now and endeavour to get my next blog post up in a more timely manner.

Finding Comfort and Tolerance in the World Around Us

Let’s always remember to have empathy, compassion, and humility.

I’ve been struggling with my pain levels for sometime now. it used to be that I would have flare ups of Fibro, whereas now it seems to be a constant normal. One of the things that comes from this is that you slow down, you have too. I used to zip around everywhere, up and down escalators at work, I’d whizz around festivals getting us drinks, often zoom through a crowd in London leaving my partner buried amongst strangers, much to her disdain. However, I can no longer physically do that, I have to pace myself particularly now that FND affects my coordination and my ability to get up and down stairs. As frustrating as this enforced pacing can be, one of the massive positives of pacing is that I notice so much that would have otherwise passed me by.

The other morning I was taking my pooch for a toilet break when I saw this blob of white paint on the road; it’s little paw print shape created a big smile on my face. Such a simple thing, but something that can really heighten your mood. I loved it so much I had to take a photo, and it got me thinking about how much I must have missed when I was rushing around everywhere.

I went on to consider how important it is to take the time to appreciate, not just the natural world, but the people around us. Recently I was chatting with a friend of mine who works for the NHS. They were telling me how some medical professionals refer to Fibromyalgia as ”Fuckoffmyalgia” insinuating that they don’t see it as a real condition. This made me somewhat sad but didn’t surprise me. I have heard of some terrible experiences people have been subjected to, and the way that they have been treated is unacceptable. However, there are also a lot of positive experiences, where people are supported and receive whatever help is available. Unfortunately that help is somewhat limited when it comes to conditions such as Fibro and FND because, as my Neurologist put it, they are very complex conditions, and no one experience is the same. As frustrating and disheartening as it can be for us as patients, I do think that we as a collective need to be more understanding and empathetic towards others. I know this is going to be contentious and not everyone will agree but this is how I see it; When it comes to medical professionals they are used to treating what they can see; if you have a broken bone, they will do what is necessary to heal it, if you have a clear psychological issue hopefully you will receive the medication/therapy you require. So when patients have conditions that don’t easily fit under these brackets then it can be very tricky to know what the best route is. Yes, unfortunately some people will think, well there’s no physical cause for your pain so it must be all in your head!? My answer would simply be, isn’t all pain in our head? doesn’t it all stem from messages our brains and nervous system are sending? Therefore a communication breakdown between our brains and nervous system is completely feasible; the wrong signals are being sent and pain is occurring where it shouldn’t be.

To give another perspective, I have found some who suffer from chronic illness are full of negativity and, I hate to say it, self pity. Please don’t get me wrong we all feel sorry for ourselves sometimes, believe me I’m no exception. Chatting to others who have similar experiences can be fantastic for supporting each other and communicating with those who understand what you are going through. However, that doesn’t mean that we should stop empathising with those who do not suffer chronic illness, or should belittle what it is they are going through. I have heard people voicing frustration about others saying they are tired or in pain, making comments like they don’t know what pain is. I think it is important for us to remember that no one knows what anyone else is going through or feeling and we, as a ”chronic illness community”, need to not lose that humanity and compassion for others. There has been a lot of discussion about Long Covid recently and how a lot of the symptoms mimic that of Fibromyalgia. Rather than the posts I have seen, which are somewhat angry in tone suggesting that those with Long Covid get help yet those of us with Fibro are just left, wouldn’t it be great if we reached out to our fellow humans instead of creating a them and us divide and doing exactly what has been done, by some people, to those suffering from chronic illness. Shouldn’t we be offering empathy and support rather than exclusion? It may even end up helping to create more awareness of invisible and chronic conditions.

Look up, enjoy the view.

So yes it is tough, but please let us not get into this bubble where that is all we concentrate on. Let’s take some time out, look at the small things that make us happy. Take some time for a different perspective and not forget that everyone is battling something, regardless of the form that battle takes.

Chronic illness Corona Virus Covid Covid19 fibro Fibromyalgia FND FND awareness Functional Neurological Disorder letting go Nuclear Races Obstacle course racing OCR reinfection Rocket Race RRDW

  1. Love this sis (not that you’ve been unwell) but great your back blogging! Look forward for the next one 😊

  2. I relate to this whole thing so much. Never cause of hair but many other things. Mine wasn’t even as…