Hello everyone, it’s been a few months now since I wrote my last covid post, so I thought I would update you on how things are progressing.
What is Long Covid?
Long covid is something that is being talked about more and more in the media these days. The term relates to symptoms that either do not go away following a severe bout of covid as in my case, or symptoms that appear weeks or months after getting a mild case of covid.
These symptoms include fatigue, muscle pain, brain fog, breathlessness, chest pain, heart problems, hair loss, smell or taste loss, insomnia, depression, and something called covid toe which is chillblain like purple patches that appear on the feet.
My Long Covid Symptoms
As you may know when I came out of hospital back in July I was still very weak and could only walk very short distances with a stick. My sense of smell and taste had largely come back although there were things I still didn’t like such as coffee and peanut butter.
At first my recovery seemed to be going well, week on week I was able to do a little bit more, although this was still a fraction of what I was able to do before.
My first ‘new’ long covid symptom came about a month after I had come home, shortly after I published my second covid post. I began to notice more stray strands of hair about the place than normal.
After about a week it was so bad that if I ran my fingers through my hair I came away with handfuls of hair. I’m not going to lie, I was mortified. That probably sounds rather vain and a bit selfish seeing as my hair loss wasn’t the result of chemotherapy. But to me it was another kick in the teeth from this bastard virus and my hair has always been something I loved showing off with bright colours.
I ended up having a lovely hairdresser come to my house and gave me a really short haircut to disguise the loss (I was begining to look like a witch with straggly hair). All my friends said it looked great and suited me, but I hate it. I hate that it is something else that has been imposed on me against my will.
The good news is that 4 months later I can see signs of it coming back. It will take a while till its back to its proper length, but watch out because after Christmas bright colours will be happening again.
Aparently hair loss is quite common after prolonged stays in hospital and is probably due to shock rather than any specific effect of the virus on hair follicles.
Another symptom that I have that is fatigue. It is hard to explain to someone who hasn’t experienced it just how extreme this can be at times, but this is an example that might highlight it a bit. A couple of months ago I bought a new coat. A beautiful red coat with a lace up back and fur edged collar, it is very steampunk.
When my coat arrived, I was desperate to try it on and show the world how beautiful it was. The issue however was the buttons. The coat had 4 buttons on the front, and no matter how I tried my arms and hands were just too tired to do the buttons up. It’s frustrating and so incredibly stupid. Nowhere in my adult life did I think I would ever be too tired to do up a coat.
I read somewhere once that eskimos have 50 different words for snow. I think that in the future long covid sufferers are going to have to invent different words for all the types of tired you feel. Tiredness that starts at the begining of the day, the one that builds during the day, one that hits you like a train coming out of nowhere, brain tired, achy tired, sleepy tired, not able to sleep tired……
Boom and Bust
As my balance and muscle strength came back I was able to do more for myself. The fist time I was able to push a hoover round the living room and make a simple bung it in the oven dinner were proper causes for celebration.
I was still very anxious about going up and down stairs on my own, so stayed in the flat during the week and only went out at the weekend when Mr A was there to watch me on the stairs.
This lead to my first experience of the boom and bust syndrome. This happens when a recovering patient does too much in one go which leads to a setback in their recovery. For me it occurred because I tried to fit in as much as I could at the weekend when Mr A was home and then felt like shit the rest if the week due to fatigue.
The thing about post covid fatigue is that it’s a sneaky little bastard. It doesn’t gradually build up as you do more, but hits you like a wall 2 or 3 days after you have had a period of extra activity. So I was finding on Saturday while I was doing stuff I felt fine. On Sunday when I was prepared to feel tired there was nothing, so I did a bit more. Monday wouldn’t be too bad, but by Tuesday I felt horrendous and could barely get out of bed. It took me quite a while to recognise this pattern of boom and bust.
Taste and smell
As I’ve documented before, during my time in hospital I had an awful problem with eating and drinking due to loss of smell/taste, and then an altered sense of smell/taste as I became better.
For the most part I’m able to eat and drink normally now, but I have accepted now that my sense of smell and taste will never be normal again.
It’s hard to describe exactly what the difference is. Foods have a subtle chemical/metallic smell to them. I have learnt to ignore the smell and most foods taste fine once you actually get them in your mouth. There are some that still have a strange after-taste. Meats are the worst, it hurts me to say I have lost all love for the humble roast dinner.
Non-food stuff can smell funky too. Washing up liquid and shampoo smell particularly chemically.
Another thing is this as a symptom that ebbs and flows. Some weeks I hardly notice it at all, other weeks it is really bad.
Long Covid Treatment
I consider myself to be a lucky sufferer of long covid. Because I was hospitalised I have brilliant follow up care from the NHS. I know other people who are suffering as badly as me now who have no support for their symptoms because they had milder covid symptoms that didn’t require a hospital admision.
In October this year I was invited to attend a post covid clinic. It was being run by some of the doctors, nurses and other specialists who had saved my life months earlier and was open to anyone who had been admitted to Gloucester Royal Hospital CCU with covid.
I was very excited about going, to see the people who had been my world months earlier. A very good friend of mine came with me, and said she found it really emotional too, as the nurses were nearly as emotional as me (I hadn’t noticed as much as I was trying/failing to keep my own tears in check).
The clinic had a serious aim beyond making people cry happy tears. It was for the team to gather evidence on how well former CCU patients were progressing and to offer help in various areas.
Mobility and breathlessness were still a big issue for me. I was using a walking stick at the time and couldn’t go far without becoming breathless and tired. For this I saw Mark one of the CCU physiotherapists and the man I credit for teaching me how to breathe again when I was in CCU.
Mark set me some basic strength tests and a walking test and said I was progressing well. He suggested I sign up to a fitness tracking program called Kiactiv.
Kiactiv uses a fitness tracker similar to a fitbit to monitor peoples activity, but where it differs is it analyses the data and uses it to set a range of person based fitness goals based on percentage of the day being active, calories used per day, minutes per week of moderate activity etc. They then offer 1-1 telephone sessions with participants to support them to find ways to increase activity in their everyday lives.
So rather than saying you need to go to the gym, or do 10,000 steps a day, they look at the actual activities you do in a day and where you can increase them. For example getting things out the fridge one at a time rather than all in one go when preparing a meal to increases the amount of times you walk to and from the fridge.
For me we identified that when I listen to music I like to dance. Even though I’m sat on the sofa I actually get quite movable when I start air drumming and thus I have found a fun yet effective form of exercise for myself to do during the cold winter months.
Alongside the referal to the Kiactiv program Mark also emphasised strongly the need to pace myself when doing stuff. That even when I felt I could do more in a day, to remember that I would suffer for it days later if I did.
As well as the Covid clinic, I also had my first follow up appointment with the repiritory clinic in October. I saw a lovely doctor who had seen me while I was in CCU. He listened to my chest and sent me away to have a range of tests to see how well my lungs and other organs were doing. This included a lung function test, a CT scan, a heart scan and multiple blood tests.
I went back to see him last week for the results of the tests and everything is looking remarkably well. I have some residual scaring on my left lung, but nowhere near as bad as it was 3 months ago. My lungs are functioning at about 90% now. While not perfect, given my size its probable that this is back to my pre-covid levels.
My heart is working exactly as it should be. I have slight anaemia and low vitamim B12 levels which could account for some of my fatigue, but this is easily fixable with iron and B12 supplements.
I need some further investigations into an issue with my throat. Where I had the tracheotomy I feel like there is something always there in my throat (like a bit of phlem I can’t clear). It makes my breathing noisy, irritates when I lie down to sleep and makes me cough a lot. This is possibly due to a narrowing im my windpipe, but need further scans to confirm this.
But overall things are looking up. The fatigue is something I’m learning to manage although it does frustrate the hell out of me. And in more positive news Mr A and I will be moving in a week or two after Christmas. We have been offered a sweet little bungalow.
The lack of stairs and having out own garden should mean I can get outside more in the spring which will help improve my physical and mental health.
I’m hoping the new environment will help my symptoms improve, but I would not be surprised if some of them are a permanant feature now.
Have you had any experience of covid or long covid?
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