186 days – my misadventures with Long Covid

186 days. Not far off half a year. That’s how long it’s been since I first had Covid symptoms.

We had tried very hard to avoid it for 26 months, but our son going to a Marina and Diamonds concert in Dublin at the end of May was always going to be a high risk endeavour. Within days we were all suffering. At first I was the best off of all of us so I was running round after everyone else. Then on 5th June, I could barely get up.

The salutary tale from my experience is that if you are election agent for multiple wards in your local area, get your expenses done immediately after the election. Mine were all done and signed by the candidates before I became ill. I just had to print off my declarations, sign and submit before the deadline on 10th June. I could, thankfully submit them online, but that simple task was herculean and broke me on several occasions before I finally managed it.

Since then, I haven’t got that much better. The cough may have disappeared after a month, but I have yet to manage to spend a whole day out of bed, and if I overdo it, the punishment is vicious. Eight days ago, I went out for a special family lunch. I did get home a couple of hours  later than I’d planned but I didn’t recover from that until midweek. I had a meeting to attend online on the day after but I couldn’t speak reliably. Words were getting lost somewhere between my brain and my mouth.  I had to message someone else and ask them to make the point I needed to make.

The crushing, all-encompassing fatigue is the absolute worst, but it has a backing chorus of pain, nausea, dizziness, breathlessness and gastric issues which, seemingly randomly, throw themselves into the spotlight on any given day.

I reckon that on a good day, I’m operating at about 25-35% of my pre Covid capacity. On a bad day, I am flat out.

Being able to do something one day is absolutely no guarantee that you will be able to do it the next. Some days I can write well in small bursts, but there was one day recently when it took me an hour to put up a relatively simple post on here.

I managed to go to Scottish Lib Dem conference in Hamilton in a very limited capacity at the end of October. I made it as easy as possible on myself – an extra night in the hotel, taxis to and from the Conference venue, taking lifts rather than stairs. By lunchtime each day, I was exhausted and had to go and rest for the afternoon before emerging for an early dinner. I never even made it to the Conference bar when I have almost always been one of the last out until now.  By the end of the weekend,  I was really struggling and a few days after I got home, I came down with Shingles. That put paid to any progress I had made and I’m currently scrabbling up the hill again.

Alex Cole-Hamilton asked me to summate his motion on Long Covid. He and Layla Moran have been brilliant champions for the millions across the UK who are suffering.

The Scottish Government have been stupendously rubbish, spending just £15 per person on Long Covid, compared to £100 in England and £83 in Wales. I’ve had more help from the Long Covid support groups on Facebook and from the Chest, Heart and Stroke’s Long Covid helpline than from the NHS itself. Alex’s motion called for comprehensive range of measures from a network of dedicated Long Covid clinics in every health board to changes to the social security system and guidance for employers in supporting affected workers.

Alex had many in the hall in tears as he introduced the motion. His 9 year old constituent, Anna, has Long Covid and he talked about her struggles.

During the debate, East Dunbartonshire candidate Susan Murray and former Convener Sheila Thomson highlighted the importance of local government,  community groups and social prescribing in helping sufferers – but stated the obvious – that this work required funding.

Highland Councillor Trish Robertson spoke of the need for mental health support as Anxiety and Depression are common amongst Long Covid sufferers, something I can definitely attest to. We are very good at gaslighting ourselves, pushing ourselves too far and suffering the consequences.

Shetland MSP Beatrice Wishart said that we owed it to our young people to do more to support their recovery.

This is the speech I made when summating the motion:

Conference

152 days. That’s how long it has been since I caught Covid. And it has well outstayed its welcome.

I could tell you about all manner of weirdsymptoms – the nausea, the joint pain, the gastric issues, the brain fog. Short term memory is a disaster area as is the ability to concentrate. I have managed to read one whole book since June – when I’d normally be reading at least one a week. There are times when I can’t get the words from my brain to my mouth – alarming for someone who likes the sound of her own voice as much as I do.

The worst thing though is the fatigue. Now, that is not about being a bit tired. It’s an all consuming, crushing, exhaustion. I never thought that I could feel worse than when I had Glandular Fever in 2009. That was a walk in the park in comparison.

There’s a path near my house that I’ve walked for 20 years without thinking about it. It came as a huge surprise to discover that it has a slight gradient. It feels sometimes like I am climbing Ben Nevis.

Washing my hair is something that I have to plan because it basically takes up all my energy for the morning.

The unpredictability is frustrating. Being able to do something one day is no guarantee that you will be able to do it the next day. And overdoing it comes at a price. Post exertion malaise is a common feature of long covid.

And it’s isolating –

I reckon that on a good day, I’m operating at somewhere between a quarter and a third of what I could do before. On a bad day, all bets are off.

All the evidence suggests that most people recover within a few months, but staying positive and hopeful is not always easy.

And a few weeks ago, a cold put me back almost to square one. No wonder I am nervous about catching Covid again – or anything else – over the Winter.

I am far from aloneand I am well aware that others are suffering much more severe symptoms and for much longer.

The World Health Organisation’s research suggests that 10-20% of people who catch Covid will go on to have long term symptoms and women are twice as likely to develop the condition than men. This has a huge impact on society. Data suggests that 23% of people with the condition have not been able to return to work and another 46% have had to reduce their hours. We should also think about the impact on those with caring responsibilities and those they care for especially with the current crisis in social care.

The Scottish Government’s response has so far been absolutely woeful.That they have not already established specialist clinics beggars belief given the extent and impact of the condition. They have let down the estimated 204,000 people who are suffering in Scotland, they have let down the healthcare workers who have what is effectively an occupational disease.

I am incredibly grateful to both Alex and Layla Moran for their persistent calls for action from both governments. They have been the champions the millions across the country need.

This motion sets out a roadmap to tackle this public health crisis. It’s not rocket science. It’s common sense, practical measures that should have been I’m place a long time ago.

Conference, for everyone suffering with this debilitating, life-limiting condition, for Anna, for the hundreds of thousands of sufferers of this horrible, debilitating, life-limiting condition, please support this motion.

Nicola Sturgeon and Humza Yousaf – it’s time to step up.

There are too many of us whose lives have been diminished by this horrible condition and, frankly, we feel that we have been forgotten, discarded as collateral damage as the nation pretends that Covid is over. The truth is that this can affect as many as 1 in 6 women my age. If you think about that impact on the labour market when we are already struggling and on caring, then it’s an issue that all our Governments need to address now.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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9 Comments

  • Suzanne Fletcher 3rd Dec '22 - 2:25pm

    So sorry to hear this Caron, difficult to believe that someone so lively is struck down like this, and you must find it so hard not to be active.
    Sorry if I should know this, but what sort of help is needed that the Government could help with or provide? is it emotional support (which I am sure is needed, i would) or anything else they should be doing?
    Goodness knows how anyone who is a carer, cannot have paid sick leave from work when they are main income person etc can cope. Or anyone unemployed looking for work.

  • Massimo Ricciuti 3rd Dec '22 - 2:47pm

    Take care, Caron. It’s sad that often people and governments seem don’t understand what’s the matter. This is a social desease. Best wishes.

  • Alison Willott 4th Dec '22 - 4:23pm

    Caron, I haven’t got your email address but just wanted to say how very much you are appreciated for everything you do, and I’m so sorry for what you are going through. I’m having something similar, but nothing like as bad. Best wishes for a thorough recovery. Alison. PS I found my VitB12 levels had gone through the floor, and getting injections for that made some difference.

  • Catherine Crosland 4th Dec '22 - 8:34pm

    I do hope you feel better soon, Caron. Don’t try to do too much too soon. Be kind to yourself, and take things gently for as long as you need x

  • Peter Martin 5th Dec '22 - 11:30am

    Is it OK for a Labour Party member to wish Caron all the best and hope she recovers soon?

    I’m sure it is for nearly everyone with any shred of decency in them. However, strange things are happening in our Party. A potential candidate was excluded on the excuse that she’d ‘liked’ a Tweet from Nicola Sturgeon saying she had tested negative for Covid. Who wouldn’t ‘like’ that?

    I guess if anyone from Labour Party HQ is reading this I’ve just messed up any chance of ever being selected myself! 🙂

    https://www.thenational.scot/news/23071525.labour-block-lauren-townsend-mp-race-liking-nicola-sturgeon-tweet/

  • Caron Lindsay Caron Lindsay 5th Dec '22 - 12:17pm

    @alison Please feel free to email me on [email protected]. Sorry you are going through this too.

  • John Barrett 5th Dec '22 - 1:38pm

    I too was sorry to hear you had been going through all this. Hopefully in the weeks and months ahead things will improve, and the medical world will wake up to this very real issue.

    Having experienced a much less severe case after avoiding Covid for over two years, I decided to organise a fundraising concert for Ukrainian families affected by the war and meeting everyone at the door of the venue in late April was clearly where I caught it. It has taken me 6 months feel nearly back to normal, and when I raised the issue of long covid with my doctor, it was clear that he was very much in the dark as to what could be done.

    Having worked to get better support and understanding for those with M.E. who often struggled to get their condition taken seriously, I discovered back then that as with M.E. the medical profession used to doubt the reality of M.S for many years before they accepted the reality of the condition. Hopefully the reality of long covid will result in a much quicker response to develop treatment and support for those who will no doubt suffer for a long time into the future.

  • If there’s ever an argument for a Royal Commission it would be for Covid. It might take years but at the end we might learn something useful. Of course the Conservatives would prefer any enquiry to be over before they leave office. Labour would probably make political capital from its results. I still believe we can occasionally have truly independent reports though it’s a hard ask.

  • David Garlick 13th Dec '22 - 10:17am

    Sorry to hear your story and wisha a full recovery however long it takes.
    Just two days ago two of our household tested positive. Makes reading your case history a difficult/worrying read…

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