Bring It On!

When I wrote my last blog in February 2021, everything seemed to be looking up. However, within 2 weeks of writing it, everything came crashing down around me and I had my biggest and worse relapse yet.

Crash

There are many factors which contributed to this "crash" but it was mainly triggered by the 2nd vaccine dose.

This relapse meant I was off sick from work for 6 months, the longest time I've had off sick during my time with Long COVID which I know is relatively short for most people living with Long COVID.

What do I do now? Everything that had slightly improved was now worse than it had ever been. I felt faint every time I moved.

I had to do a lot of accepting, which perhaps is where I was going wrong all of this time.

I spent most of 2020 denying and pretending that I wasn't ill as I wanted to be "me" so badly that I just ignored and pushed through. Something that I now know was the worst thing to do.

Pacing

I upped my pacing game and started planning my weeks on a mini whiteboard and also started heart rate monitoring which is quite difficult when you have POTS but I did find that it helped my fatigue. I also became stricter with the POTS lifestyle management strategies (upping fluid/salt intake and also supine exercises being aware of PESE of course) to see if this helped, as at this point, I still didn’t have a formal diagnosis.

As an Occupational Therapist, I thought I knew about pacing but I was very wrong. Pacing is incredibly difficult and I definitely underestimated this before I had to do it myself.

I feel like Goldilocks absolutely everything has to be "just right" - temperature, fluid/salt intake and physical/cognitive/emotional exertion. There are very fine limits and you really know about it if you dare to cross that line.

Acceptance

I was diagnosed with POTS in July 2021 and this was helpful. I knew what I was dealing with and although there is no cure there are medications and strategies that I can try to help improve symptoms and quality of life. My life became trial and error. Another thing, that makes managing all of this so difficult is that when you try and tell people all that you are doing to manage these awful symptoms, they think that this is just anxiety. They think that actually I’m doing the worst thing by paying so much attention to it all, the good old “mind over matter” school of thought, I tried that in 2020 and look where it got me.

Many people brush Long COVID and POTS off as anxiety anyway, so when I say "I'm using heart rate monitoring to help manage fatigue". I can see their eyes roll like here she goes again. As if I'm frantically checking my pulse every 2 minutes (which clearly, I'm not). It's like the dreaded "how are you" or "are you feeling better", if I say "I'm the same" or "not great" people look genuinely annoyed or disappointed and assume that simply I’m not trying hard enough to get better, when I have literally never put so much effort into anything in my life.

I think that is another part of the acceptance journey. Some people will get it and some people just don't. I used to try and justify and explain everything I was feeling and doing because I was so desperate to be believed.

I don't do this anymore; it is a waste of my precious energy. Unfortunately, what is hurtful about this is that these are people that I've known for years. How can they just dismiss me as anxious when they know the old Helen? Ouch!

I’ve had many hospital appointments this year and a couple of them have been in central London. I decided to use a taxi to get there as part of pacing and also because I wouldn’t be able to walk around the underground stations and the biggest issue, what if there wasn’t a seat and I’d have to stand up!

This was also a big moment where I realised how much my life has changed. Pre-Covid I would spend every weekend in London, I’d always be on the underground and now I don’t feel able to. The taxi driver was lovely and we got talking as you do so I was telling him about Long COVID. When I saw him again recently, he said “Helen, I’ve been telling people about you and Long COVID but they just look at me as if I’m crazy, I can only imagine how difficult it must be for you”.

It is quite something when the taxi driver who you have met twice gets it but people who have known you for years don’t!

Returning to Work

I was eventually able to return to work on a phased return in October 2021 with reasonable adjustments in place. Again, I'm very lucky that my employer has been supportive, however my career in neurological rehabilitation is still very much up in the air. Will I be able to do it, who knows? Will I have to reduce my hours? If so, how will I manage financially? The uncertainty is never ending.

Returning to work brings new issues that I hadn’t considered. For example, people assume that because I am back at work, I am better/recovered and can do more. No, it means that I have to do even less because I have to rest when I am not at work to make sure that I can stay in work. Returning to work is overwhelming. Suddenly, all of the lifestyle management strategies were extremely difficult to implement. I felt like I was spinning so many plates and it felt near impossible to keep going. I’d have to lie down as soon as I got home because of the fatigue and also the coat hanger pain, thanks POTS!

It is frustrating to have an effective management plan in place and now all of this had to change. More trial and error when I had just found my limit.

Booster jab

Unfortunately, I then experienced another blip after the booster jab which set me back quite a bit. I'm still not quite at pre-booster level, but I'm nearly there 8 weeks on. I kept going around in circles when trying to decide whether to get the booster because they do not appear to agree with me, but I discussed this with my consultant and we decided it was the right thing to do. I encourage everyone to get the vaccine but it is such a huge and difficult decision for some people. It is a total catch 22 and a horrible position to be in.

However, the booster blip highlighted how much that I have learnt this year. I knew what I needed to do. I took a week of annual leave after the booster as a pre-emptive measure and it was one of the best decisions I've ever made. It eliminated the stress and guilt of calling in sick. I didn’t try to push and pretend I was ok. The jab made my POTS so bad that I couldn't sit upright in a chair for 5 days so I just stayed in bed because that's what I needed to do. Finally, acceptance!

Despite the setback, I have still slowly managed to increase my hours and made sure I scaled back on everything else. I am still not in my full clinical role and I am not doing anything physical at work at the moment but I guess we will see what happens in 2022.

My phased return ends at the end of the year and I will be using annual leave to shorten my weeks. If I am unable to fulfil my full clinical role I will most likely be redeployed but I'm trying not to think about that too much. I need to focus on the here and now.

Count Long COVID

There is a lot of talk at the moment about how the new variant is “mild”. It is giving me March 2020 vibes, the whole idea that if you are young and healthy you will be fine. I believed this and I am now disabled.

I, like many others had "mild" COVID in March 2020 and my life has not been the same ever since. I am a shadow of my former self & I really miss the old Helen. The term “mild” is being used to mean that someone was not hospitalised or survived.

COVID didn’t kill me in March 2020 but I’m not exactly living either.

I don't live, I exist. My life has no spontaneity.

I have not had a symptom free day since March 2020. I have not been able to work in my full capacity since July 2020. I have never recovered. Is that really “mild”?

I spend my Sunday evenings planning my week and filling my pill box, I take 8 tablets before I get out of bed in the morning and more throughout the day. I spend my day, tracking my fluid intake and trying to keep my heart rate below 100 which, when on some days it is 128 from having the audacity to just get out of bed is no small feat.

I have to do this just to stay afloat and to reduce the debilitating light-headedness when I'm standing/moving. I can't walk around the block or go shopping. I barely see or speak to my friends.

I am one of the lucky ones, my symptoms are nothing in comparison to what some people are experiencing. I’m also rare in that I have a supportive medical team and employer. I am currently able to work to some extent. Many people have lost their jobs and are not able to work at all.

I'm not trying to sound dramatic; this is just how it is. I’m not sharing this for fun, I just don’t want anyone to go through what myself and my new Long COVID friends have been through.

Please take care and precautions. You do not want this; I assure you nothing about it is "mild".

It would be great if the numbers of Long COVID were included alongside the daily reporting such as new cases, hospitalisations, deaths, and vaccination rates, but unfortunately Long COVID continues to be ignored alongside most other post viral illnesses including ME/CFS. People with these conditions, including Long COVID, are treated as an inconvenience and told they are mad. This is not acceptable and cannot continue anymore.

If more time and attention was previously given to these conditions then perhaps, we wouldn’t be in this mess now. It is time for change.