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"I wish I'd known....."

Updated: Jul 24, 2023

Recently I was recording a video I'd been asked to do, and one of the questions I was asked was "what do you wish you'd known at the start?"

It got me thinking.

I think those of us first wave Long Haulers had a rough deal in many ways - we've been ill for a long time, the majority of us had absolutely no medical care initially because mostly we "weren't ill enough" - it's hard to remember that far back isn't it, but in March & April 2020, the message was STAY HOME. And if you were seriously unwell, you were unlikely to be "seriously unwell enough" for hospital, because there were SO many people worse off. So we were alone.

I know I still deal with the mental impacts of feeling abandoned and terrified.

But those starting down their Long Covid journey starting now can see what they might be facing - potentially a 2+ year illness.

If I'd known that at the start, I'm not sure I'd have had the strength to go on.

But that also got me thinking - we now know a lot more than we knew then. Although the concept of post-viral illness wasn't a new one even in 2020 (we should have learned lessons from the ME/CFS community, of course), now Long Covid has been around in itself for a couple of years.

Those with persistent symptoms following a Covid (or suspected Covid) infection now can learn from the mistakes that we made. And boy did we make a lot of mistakes - I know I did!!

The public health messaging around Long Covid has been appalling. I know I have a very one-dimensional view of potential risk due to my experiences (I can't understand why anyone would go to a pub - is a pint really worth potentially being disabled for life?)

But people need to know that this is a risk. That anyone can become seriously unwell or develop Long Covid following a Covid-19 infection.

Being young, fit, healthy and vaccinated does not excuse you! Long Covid is indiscriminate!

And if you DO continue to be unwell following an infection, what do you do? Many GPs are excellent, but many are not. In some countries & areas there are no treatment pathways, no messaging, no guidelines - or not any that are worth the paper they're written on. And the waiting lists are sky-high.

So this got me thinking too - when I first realised I wasn't getting better - what do I wish I had known? What would be good advice for someone starting down this road?

So I played around on Canva - because who doesn't like a good graphic?! And I made a post for Instagram. And that sparked off this blog - because the sooner people can start doing some of the right things, the better. It doesn't mean you'll be fixed straight away - some people may need more. And of course I'm not a medical professional. I'm speaking from my own experiences and the benefit of having interviewed plenty of wonderful specialists.

So this is what I wish I had known back in March 2020. 28 months ago. (Text only is at the bottom of this page)

Feel free to follow me on Instagram if you wish - and if you do know anyone with a recent Covid infection who has lingering symptoms, consider passing this on to them.

Text Only version of the above graphics:

Don't feel right after Covid?

Do you have Long Covid? What can you do?

Long Covid persistent symptoms following a Covid (or suspected Covid) infection lasting for 12 weeks or more.

However, if you have not reached the 12 week mark but still have any symptoms, I'd recommend implementing these strategies straight away.

1. Rest, rest, rest

It sounds a bit simple, but this is really important. Your body has had a battle with a nasty virus and needs to recover.

Build in real deep rest (Yoga Nidra is brilliant for this) - watching TV or reading is not resting!

Do not push through if you have any symptoms.

Learn about Pacing!

2. Hydrate

Hydrate properly - especially in hot weather, and consider adding electrolytes to cold water.

Dr Boon Lim recommends 2 litres before lunch, and a 3rd litre by 5pm.

3. Do your research

What is automonic dysfunction? Could it be MCAS related? What are your triggers? What helps you?

It's never too early to understand your condition.

The Long Covid Podcast may be somewhere to start -

4. Get support

There are lots of support groups which are good for asking questions (or searching what is already there).

Support may make you feel less alone.

Side note - doom-scrolling can make you feel worse - so limit your support group time!

5. Find some joy

Being ill is awful, especially when it drags on.

Make a list of small things that make you smile.

Often it's the small things - a comfy blanket, a nice candle or a cup of hot chocolate - that can make the biggest difference in a bad moment.

6. Ask for help

You're going to need to rest. Ask for help, and don't feel bad about it. Let your partner do the chores. Can someone else help with the school run? Get your groceries delivered.

Outsource and de-stress as much as you possibly can.

Those around you may want to help, but what they think you need and what you actually need may be different.

People will mean well, but might need guidance. Don't be afraid to say what YOU need.

7. Be kind to yourself

This isn't your fault. You didn't ask for it.

Be kind and patient with yourself as you heal.

8. Eat well

Think about what you put into your body. You want to create the best environment to allow your body to heal.

Eat real fresh food where possible (cut out the processed stuff).

Are there certain foods that trigger your symptoms?

9. Look into what you CAN do

So much out there will feel out of your control, but there are things that you can do.

Improve your breathing, do some gentle Yoga (if you can), do regular Yoga Nidra or meditation, eat well, hydrate well, etc etc.

Although much is NOT known, we know a lot of things than CAN help with Long Covid.

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