In our weekly spot on the site where we chat about things not being quite wrong, the challenges and demands of a long term condition.

Hello, and welcome to our weekly spot to check in and have a chat. We hope it finds you all well and dandy.

It’s strange to reflect that Coronavirus has been causing havoc for a full year. We’ve been under restrictions, bounce backs, optimism, pessimism and, on occasion, downright denialism for twelve months. The casualty figures are horrendous. But we are also at a stage where there is a ray of light ahead, thanks to vaccines beginning to make a real difference.

Contracting Coronavirus appears to be a lottery that swings between the ultimate loss, that of life, and those who are symptom free. Some people become very poorly, but recover well after a few weeks. Others are not so lucky. These are the people who develop what is being called Long Covid, or long-haulers as they have named themselves.

For these people, there is no quick recovery. The original infection has passed, but they remain in a grey fog of existence, in which tasks and exertions that were done without thought pre-Covid become exhausting. Onerous. Impossible.

A year down the road and this group are looking for answers. They are desperate to be well again. There are questions as to why symptoms linger, sometimes grow, and often manifest in distressing ways.

I can’t answer those questions. What I can give these people my utmost sympathy, from the perspective of another long hauler. Because post viral illness isn’t new. It’s just a great deal more front of focus now, due to the sheer number of people struggling to recover post Covid.

I caught an enterovirus three years ago. A different beast to Covid-19, it stripped my body of minerals and vitamins. In doing so it triggered what I now know to be Postural Tachycardia Syndrome (POTS), and a related condition, Mast Cell Activation Syndrome (MCAS).

POTS sets my autonomic nervous system on fire, from where it screams strident alarms that overheat my neurological, cardiovascular and digestive systems. MCAS provokes severe intolerances that can include anaphylaxis to anything containing sulphates and salicylates. Both conditions are confirmed as being virally triggered by that enterovirus. They will be with me for life. POTS also interrupts my sleep, so I’ve the added bonus of Chronic Fatigue Syndrome, something Covid long-haulers may be becoming horribly familiar with.

Post viral illness is medical minefield. I stood on so many mines that blew me off path while I sought a diagnosis. My only solace was an engaged GP, determined to find answers. Many people don’t even have that.

However, this is not a pity piece. Rather, I wanted to share some thoughts with anyone who is struggling post viral, and who may be feeling overwhelmed at what to do next. As I’m not a medical practitioner, the first point is vital.

Seek medical help

If you are suffering what you suspect is long Covid, speak to your GP or health provider. They should be your first port of call. Be aware you may have to contact them repeatedly to get an onward referral. At the very least they should offer you a full blood screen to rule out other health conditions, such as diabetes or thyroid issues. It will also highlight any dietary deficiencies. But what if all the tests come back negative?

This is when it gets hard. You know you’re ill. You know you’re not imagining it. Yet doctors are telling you it’ll clear. That the mind fog and exhaustion are normal, and you just need to get out for a bit more exercise. You try. And you feel like hell on legs.  This is when you need to be your own advocate. The better prepared and informed you are at each appointment, the more confident in pushing for support you can be. Don’t take no for an answer.

If you’ve had Coronavirus you can request a referral to a Long Covid Clinic. The fact these exist is a real sign of progress in getting help with post viral illness. It’s yet to be seen how they operate in practice, but do take up a place at one if you can.

Listen to your body

Monitor your symptoms. Check your heart rate, your breathing peak flow. Record everything, no matter how insignificant it seems. The breakthrough in my own diagnosis was my noting repeated nausea that signified the start of  a multitude of symptoms that seemed random at first glance. They weren’t. By diarising them I – and my doctors – could see there was a pattern.

This is important when you have post viral fog or exhaustion. You can be fine one day, then the next you open your eyes and your floor has turned into a river filled with golden stars (neurological disruption is sometimes a bit trippy). By keeping a regular symptom tracker going, I don’t forget to mention anything important in the precious 25 minutes I get with my consultant. And you will forget things. You might minimise how you feel. Don’t. Tell it like it is.

Beware toxic positivity

You go looking for answers and support. You find an online community, and they are broadly knowledgeable and supportive. And that’s great. But beware the positivity creep. The ‘eat kale and be cured’ crowd did it for me. I’m allergic to kale. I’d stop breathing. Point that out, and the wrath of the righteous vegetable pickers comes down upon you. Eat enough kale and your allergy will be reversed! It’s your own negativity holding you back!

Then it’s your own circle of family and friends trying to jolly you along, or worse, disbelieving you have a physical ailment. A member of my own family spent the year before I was diagnosed telling everyone I was imagining my illness. If you hear that repeated often enough, you begin to wonder if it’s true. That’s why keeping a symptom diary was so important for me. I did not imagine my ankles turning blue and swelling up with pooling blood. No amount of positive thinking could will that away.

Being ill is exhausting. Being told you’re to blame because you won’t take the snake oil cure is exasperating. And there will always be someone telling you that exercise / minerals / mindfulness will cure your physical ailment. That you need to be more optimistic. That your daily struggle will be cured by positive thought. Mute them. Look for the realists with the practical solutions.

Reframe your expectations

This may sound harsh, but I’ve read a lot of long hauler interviews with headlines proclaiming ‘I just want my life back!’. The problem with post viral illness is that this may be your life from now on. And it’s horrible to accept that, I know. If you do get a clinic referral, take up the counselling on offer to help with the anxiety and stress being ill causes.

I’m three years into this, and there are days when I hate it. I hate being me. I hate the things I used to love but can no longer do. I’m not employable in the traditional sense, because I don’t know what days I will be functional. There’s a 50/50 chance every day when I wake up that my spatial awareness has left the building. I can try to avoid triggers, I can live a very gentle life, but I can’t cure my underlying syndromes.

Recently I’ve tried to look at this in a different way. What can I do? I can’t swim for exercise any more but I can do physio prescribed Pilates. I can touch my toes, for the first time in my life. I bend!

I can’t work for long spells of time. On a day when I wake and open my eyes, and think, oh hello, the world isn’t rollicking about, I try to maximise my output. It can make my work disjointed, and I limit what commitments I take on. But I’m finding a new pattern that works for me.

I build pacing days into my diary. I’ve written about spoon theory here before, and pacing days are essential on weeks when I know I’m going to set the cutlery drawer alight. And I avoid triggers where I can, even if sadly that means no more alcohol or nights dancing until the small hours. The resulting two-week kickback is not worth it.

Have a home care package at hand for the bad days

There will be bad days. Make sure you are always stocked with appropriate medications. If there is anything you know helps your condition, have it to hand. For me it’s water, salt and compression tights. Aided by feather pillows, a well-stocked to-be-read shelf, and Netflix. There are days when you really need to listen to your body, and if it’s screaming for a nana nap, then listen to it if you can.

I might have railed about toxic positivity, but there are some amazing souls out there in the post viral community, who will provide a shoulder when you need one. They get it. Reach out to them, both on your bad days and their bad days. Celebrate your good days together. Sometimes we really need a friend.

Finally…

My apologies if this seems gloomy. The truth is, life is different when you have a long-term health condition. It is harder. The upside is that most people will hopefully recover fully, though it may take longer than anticipated. Some – like me – will be left with life-long conditions. These can be managed, though getting to that point may take time and a lot of perseverance.

But remember that your life today, in this very moment, is just as important as your life pre-covid. You might want it to be a year in the future, when the bad days have passed. Fingers crossed it happens quickly. But you have to get through the next few months first. How about you make them as palatable as you possibly can?

Slow down, enjoy that walk. It doesn’t need to be a run. Look around and appreciate the beauty out there. Spend time nesting with your loved ones. Take stock of your blessings. Your life is still your own. Take good care, and enjoy it as much as you can.

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