For Emily, Sophie, Naomi, Sam, Kelly, Sarah, Elliot, Pauline, Pat, Wendy, Cathy, Lynne, Mags and 250,000 more…
I wasn’t a Yuppie, I was a child. Even if I were a Yuppie, I didn’t deserve to be ruined. None of us did. What do I mean by ruined? Well …
It has taken me 30 years to write this piece. Dealing with M.E. was the bleakest kind of training and endurance. I have watched friends become housebound and bedbound, seen them lose education, careers, marriages and then some have died far too soon.
I had glandular fever at 17 but didn’t rest; I pushed on and overnight my physical health was done in. That meant 12–40 weeks a year in bed, housebound or in hospital for the next 20-plus years. It meant no holidays, hobbies or anything resembling a normal life. I crawled through a part-time degree and a tiny life but I was lucky; I had loving parents and a safe home. I learned how to manage my tiny life and keep my blessings at the forefront of my mind. But ~ and this is a big but ~ it was still horrid. Now here is the really nasty sting that makes this all worse: my parents have also had a ton of illness to contend with. Today all my work is about making some loving purpose from my life. That’s why I’m an expert in long-term adversity, resilience and finding coping strategies through them. Align that with almost 1,000 loving funeral services and that makes for a mighty understanding of the human soul.
I fear that Long Covid will be just like long glandular fever ~ or plain old M.E. ~ where healthy, busy, hard-working and giving people catch a virus but battle on. This is what sets them apart, they usually press on and don’t allow themselves to rest at the start of the illness. (Dr Strain of Exeter University Medical School has found that many previously healthy young people with Long Covid all had one thing in common ~ when unwell they tried to rush their recovery.)
I bet if you asked anyone with M.E. they will lament on their lack of self-care in the early days. They were too diligent to protect their health. If only they had had a fortnight off work or school to become acquainted with the term ‘duvet day’ then they might just have got away with it. But for me, and many others, there was no getting away with it. No return to normal life because normal life needs normal energy. It needs reliable legs that will hold you up. It needs a reliable stomach that will do its job. It needs a reliable immune system that doesn’t go mad at you with rampant inflammation.
So, what does it feel like? If you’re well then you can’t know, and I am pleased about that. I don’t want you to know. But the closest analogy I can offer is to imagine being in a deep-sea diving suit, filled with sand, in the desert and trying to go for a jog. Then add in having food poisoning, migraine and flu and a load more nasties.
The more you try, the worse you get. Now here is the monstrously bad part. This very bad situation is made worse by the monumental medical incompetence that hits so many people with M.E. If the illness is not bad enough ~ with every physical system in your body going on strike or going mad ~ there is the significant travesty of there being neither test nor treatment.
Abandoned by a medical profession whose arrogance often made them much worse, there are few patient groups that have been treated so badly for so long. There is an horrendous list of people who were forced into all kinds of totally inappropriate treatment, only to end up bedridden and ruined by the assumption that ~ ‘if you just try a bit harder then you will be fine’. We just had to think good thoughts, and we will be fit again. Believe me if trying made you well then the entire M.E. community would be winning marathons! We are not lazy, weak or half-hearted. Look at our lives before the illness to see the evidence of the contribution and care that is now lost because of illness. Look at the courage displayed on an hourly basis ~ the tiny drops of energy used to just get through. Here is the trajectory of most people with M.E. and now, I fear, Long Covid: Left. Lost. Suffering. Trying. Brave. Heroic.
There are some utterly wise medics and scientists who are battling for us but they have meagre resources and not enough academic support. They are finding more and more evidence to confirm the neurological basis of this dreadful state. We are winning in terms of what the evidence and experience is presenting; now we need the education part
Five things that you can do to help:
- Please don’t say Chronic Fatigue Syndrome ~ that’s like calling a motorway a back street. By reducing the name to one symptom it denigrates the rest of the endurance. Everyone gets tired ~ try looking after a newborn baby or doing night shifts ~ but this is in a different league. This is unrelenting and is not put right with sleep or proper rest. You never get a chance to put it right. It is made worse, much worse, by exercise as the energy production is so misaligned.
- If you know someone with M.E. listen to them when they say they need to rest, or sit down, or can’t come on a massive night out. They want to be with you more than anything, but are just not able to do it. You’re living on an energy budget of £1,000 a week and they have a tenner. That is the scale of difference of which we are speaking.
- There is hope ~ some people improve a bit with time. Some people find a key to unblock some of their symptoms enabling them to generate a bit more energy to manage. I’ve improved but not recovered. If I had, then I would have had a tribe of children and would be back climbing mountains and in a canoe! I’ve tried everything to get well. Everything!
- I’ve been seeking a place in the well world for most of my life. Trying to get well and stay well ~ or at least not get worse. Even though I’ve got rosy cheeks, my legs are often frail under me; infection, allergy and intolerance are chasing me and every decision I make (every single decision) is still dominated by the ramification on my energy.
- If you get any kind of infection then please just take a few days to recover. Prevention is our biggest gift to you. Nothing, absolutely nothing, is worth losing all your health. NO event, wedding, work or anything. Health is wealth. Remember that always. Take care of your own and that of those around you. Energy is a treasure beyond measure.
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