Covid Struggles

It's been about 3 weeks since my last post and I felt it's time for another update. I've been trying to keep things mostly positive, partly for me but probably mostly for other people, and this time I've decided to be a bit more open about some of my struggles as I just need to vent them out a bit.

The first 2 weeks seemed to go pretty well, I was managing to average around 5 hours of work a day, felt like I was learning to manage the fatigue pretty well and overall felt like I was ever so slowly improving with my physical symptoms. Then on the Friday afternoon and evening I had a flair up of some of my physical symptoms, feeling totally wiped out with chest pain and some difficulty breathing. Things weren't as bad as they were a few months ago but it was a bit of a wake up call that I had obviously been pushing myself a bit too hard lately and I needed to get in some serious rest and recovery.

So after a very lazy weekend (they nearly all are at the moment to be honest) spent doing very little and just doing my best to recover I decided I would try to work as close to 'normal' as I could but with extra rest. I think I mentioned last time but the best rest for me is lying in bed, eyes closed and listening to white noise to give my senses and brain as little stimulation as possible. I call them naps but it's only sometimes that I will actually sleep during them. SO this week I went up to 2 naps a day rather than the usual 1. The week started ok but by Wednesday I was really starting to struggle.

I went to bed around 7 and had struggled to stay up that late and a couple hours later I had a really scary episode. I woke up unable to breath, my throat muscles were spasming and syliva was running down my throat and felt like it was drowning me. It only lasted a maximum of 5 seconds and in hindsight I can hold my breath a fair bit longer so I was never really in danger but it scared the hell out of me.

That was the start of a sort of relapse with my fatigue, neuro problems and other physical symptoms ramping up quite a bit. I only managed 30 minutes of work the next day which was pushing it and just went in to major recovery mode. I started looking a bit more at my obs and they were raised a fair bit, my blood pressure was up around 134/96 and my resting heart rate was 100-105. Things have been steadily getting better as I've been recovering more and my blood pressure is now back to it's post-covid normal of around 125/85 (pre-covid it was around 95/65). It's now Sunday and my resting HR is 80-85 so still a little way to go to my post-covid normal of around 65 (pre-covid it was 55) but it's heading in the right direction.

Some other struggles I haven't talked about much

Something I haven't talked much about is my struggle with eating and losing weight. I have a very small appetite at the moment but have been making an effort to eat meals as my body obviously needs nutrition. Most of the time eating is really hard. Chewing is often super tiring and sometimes I'll have problems swallowing too. After my episode on Wednesday night I had trouble eating a stir fry as I couldn't swallow the pea pod things properly and choked on them a few times. I think my throat muscles had some kind of weakness but I think that's getting back to normal now. I've had issues digesting food for a few months so can't eat large meals and I'm not snacking too much either. I also can't eat much that's sweet, if I lick the knife after making a (fake, cheap) Nutella wrap for Kacey (out of habit rather than by choice) I basically screw my face up as if I just had something super sour so I can't even eat sweet stuff for extra calories. And lately I have a weird thing where when I've been eating a meal for a few minutes I start to get a burning smell in my nose. It's nothing to do with the specific food or the usual covid change of smell/taste. It's just weird and quite off putting. I've lost about one and a half stone over 3 and a half months. It's nothing crazy, I still have some excess body fat and the rate at which I'm losing it has slowed so it's not a big worry but is something I'm aware of and keeping an eye on.

The ringing in my ears seems to be getting worse lately, especially when I'm lying in bed and trying to sleep. So far I'm just making the white noise a little louder which seems to help most of the time. It will sometimes go to a really high pitch and hurt but thankfully it doesn't happen too often or last longer than about 10 seconds.

My weak/sore eyes are still an issue. The opticians has checked them out and says my eyes are fine but things are still a bit blurry and I often have quite a bit of eye soreness/pain. I'm having to use my old computer monitor for work that has a lower resolution and makes everything bigger to make it slightly less work for my eyes. From what I've read covid can weaken the muscles around the eyes and since my eyes are healthy I'm guessing that's what the issue is.

I'm still not able to walk much without struggling and suffering consequences for it. I definitely seem to have a circulation issue that gets worse when I walk but the medical professionals basically aren't interested in that since my fingers and toes aren't falling off from lack of blood. With my blood pressure and HR still being quite a way off from where it was pre-covid I do worry about the long term effects on my heart as things obviously aren't working correctly but aren't severe enough to seem to be of concern to the pros. I also get a fair bit of pain in my lower legs and it often feels like I'm wearing compression socks which I put down to inflammation which is a commom problem from covid.

The weakness in my left arm and hand is an issue and I need to be a bit careful and aware of that pretty much whenever I use it. I also don't sime to have as good control over it. I can do things like type almost normally but my hand just feels strange and a little less controlled. For instance I can't even do something as simple as wave properly with it, it moves way slower than my right even though I'm trying to move them the same.

My crusty nose. I don't have a blocked nose but I've had snot all the time for almost 4 months. It's not a big deal but can get pretty annoying needing to blow/clear it so much.

The fatigue and neuro issues remain the biggest issues and are pretty much unchanged since the last update apart from the relapses lately so there was no significant improvement before then. I do still think I'm improving with managing the fatigue but it's effects are still massive and I have to be careful with everything I do.

There's plenty of random bits that come and go such as skin problems, numbness, tingling, strange nerve impulses and muscle twitches, bruising easily, muscle and joint pains, feeling dizzy, trouble sleeping and a bunch more I can't remember right now but to be honest they are all becoming pretty normal and I don't think about them too much.

Doctors visit

I saw the doctor on Monday morning. It was basically just to run a few tests and refer me to the long covid clinic, we didn't even speak about most of my problems or how any of it is impacting me. He listened to my heart and lungs and said all was fine (basically no hear mumur and no lung infection) which is good. We didn't talk about the problems I have breathing from time to time but I've thought for a while that's more of a problem with my muscles than the lungs themselves.

He also done a couple of tests on my left arm/hand and he thinks I may have carpul tunnel syndrome or another nerve issue with it. Normally he would refer me to some specialists to help with that but says he can't until after I've seen the long covid clinic as that is the protocol for anything that may be covid related. I have no idea how long I will need to wait to see them but know in some parts of the country it's taken over a year for people to be seen after their referral so I will probably be in for quite a wait.

Mental health

Although all this physical stuff is quite a big deal it's impact on my mental health is probably the hardest bit to deal with. I'm really struggling with not being able to do what I want to do. Not being able to walk much and being close to house bound isn't the greatest and I look forward to being able to get out more again but that's almost a minor issue at the moment (although I didn't realise until recently how much I had used running as my self care and therapy so it will definitely benefit me to even get out for walks again). I can't really pinpoint one issue as being the biggest, it's more a combination of things. The fact everything is just so much hard work just seems to slowly grind me down. I can't even do much housework as even standing to do the dishes is hard (it's like a slow jog used to be to my cardio system) and will need extra recovery.

At the moment my biggest priority is working, even above my recovery although there's no proof that if I rested even more I would get better any quicker, so I basically spend 95% of my time working or resting with just the occasional time spent doing something different and helping out so I can feel like quite a burden. So not being able to do fairly straight forward things that used to be easy or I wouldn't even think about as any real effort is pretty hard to wrap my head around. Especially not knowing when or even if it will end. As with most things the not knowing is really hard. I try my best to keep things balanced and not to judge myself but that takes energy which I don't always have. I'm still moving forward but to be honest sometimes it can be a real struggle.

Communication

I can hold a face to face conversation for quite a while without it effecting my energy too much. Sometimes I'll get lost in the middle of sentences or forget words completely but other times I'll be pretty normal in my speech. If the other person is giving me a lot of information (like some parts of the doctors visit) then I'll often need some time after they finish speaking to continue to process things as my brain can only seem to take in so much information in real time. I may or may not miss some details but do my best to try and figure out the important bits and may not even fully process/hear some words. I'll usually remember responses or questions I had wanted to ask hours later. I know that's not entirely unusual but the amount of it and the fairly basic level of some of it is.

Phone conversations are fairly similar although I find it slightly harder to process things and I just don't like talking on the phone anyway. I think with my communication issues I just prefer having the extra information/feedback that you get face to face rather than just the words said (I could go on a whole rant about words and language being difficult). Talking about communication issues I'm also totally comfortable with silences so can be talking/standing with someone and then happily stand there in silence when we end a certain topic. I know some people can be uncomfortable with that or see it as some level of disinterest or something but I don't ever mean it that way and can often find it difficult to actually initiate conversations.

Written communication I'm just not a huge fan of either as there's even less info on the context of the words than on a phone, you have to make up your own tone when you read it and I find things can often be mis-understood. At the moment I can write ok although reading is much harder with a combination of my sore eyes and my limit to how much information I can process. So I don't really go back and check much that I write now and hope that it has come out ok and I struggle even more with messages and things so try to limit how much of those I send so if I'm slow responding or even don't respond please don't take it personally, it really is me and not you.

Balance

I am struggling but I'm also away my troubles are very much in the medium range of things. I am lucky for what I can do and know they could be a lot worse and are for many people. I can only empathise with those people but also need to acknowledge and accept my own struggles with my own problems and that isn't something that's up for comparison. My experiences are as big or as little as they feel to me, some of it I can change and the bits I can't I need to do my best to accept.

I'm lucky to have my life and my life is a real struggle.