So many people are now searching the old www for long Covid advice and that is because as more and more people have become infected, the numbers of people left with ‘Long Covid’ is increasing.
Now first off I want to say that I am sorry that you or a loved one has been left with Long Covid or as sometimes called ‘a long hauler’, it sucks and trust me, I fully understand.
The truth is that there should be a far greater understanding of what you are going through, Consultants, GP’s, Nurses and Physios etc should be better equipped in helping you understand what is happening and how to help.
That is because what you are going through although it is a new term ‘Long Covid’, the symptoms are far from new and I myself have been struggling with the same thing since 1996!
I fell ill in December 1996, I was previously healthy and had in fact the day before been to work, cycled there and on the way home cycled to my in laws to help them move a shed and cycled back home.
And then the next day ‘BANG’, my life changed!
I had been vaccinated for Hep A & B for work, that is the only thing that seems to make sense as to why it happened. Suddenly I was in cardiac care and when I was discharged, my batteries were running low and they would not recharge.
In 1997 I was diagnose with ME (Myalgic Encephalomyelitis) or Chronic Fatigue Syndrome as it is now often referred to and it was back then also called Yuppie Flu.
Even though it was known about by the medical profession, many of us have received awful treatment from so called medical professionals who often believed it was psychological and we needed just get up and get on with it!
It has taken a lot of work and campaigning to get to where we are now where there is more understanding of Chronic Fatigue and yet there is still a long way to go.
It is severe fatigue after exertion and that doesn’t necessarily mean a workout, I can sometimes be left needing a nap after having a shower and it isn’t just physical fatigue.
I struggle to handle the cognitive dysfunction caused from ME, it is horrible and it can hit me quickly leaving me unable to even look at a screen or handle a bright room. The only thing I can do is to sleep and recharge the best I can.
And I think the best way to describe what is happening as having rechargeable batteries that no longer hold a decent charge and take longer to charge.
Whilst it is important to find a good physio who truly understands and can help you with advice, it is also important that they don’t prescribe the exercise yourself healthy treatment.
Even though many doctors were convinced this was psychological, eventually research has shown that this is a biological illness and comes under neurology as it is a central nervous system disease.
It is debilitating and symptoms can be as bad as those seen in MS (Multiple Sclerosis), Rheumatoid Arthritis and even Congestive Heart Failure.
And for me the turning point of it being understood better and no longer being seen as a psychological problem, was when ME patients were no longer allowed to donate blood.
So for 25 years I have been learning to cope with the symptoms of ME and I hope that some of my experience may help you or your loved one.
It hasn’t been easy, I have often failed to follow obvious advice to pace and still to this day I will overdo it gardening or going out and pay for that for several days.
That is because whilst it is very important to pace and this is a very hard thing to learn, because you go from being healthy to having to make decisions about everything you do or want to do and calculate if you can manage it and if so, how long it will leave you laid up. It is important to still try and do some of the things you love.
I will often be prepared to have several very bad days in exchange for doing something and yes that includes sex (so worth it).
So pacing means that if you have a dinner invite (yes we will do that again one day) or a trip out, you have to make sure to rest for a couple of days before and allow for days of recovery after.
Even though I am a lot better than I was in the early days, I still suffer from a wide range of issues that make life difficult.
The Physical fatigue is very difficult to cope with and learning to adjust is very hard. As I said the mental fatigue for me is harder than the physical fatigue.
When I am having a bad day it isn’t just feeling tired, it is being drained of every ounce of energy (read the Spoon Theory). I suffer from hypersensitivity, where I am very sensitive to noise, I can’t handle a lot of foods and will want easy and basic food.
I wasn’t keen on this at first, I thought it was all a bit hippy but it has been a vital tool in journey with ME. Resting the mind is just as important as resting the body and so is keeping a healthy mind.
There is no shame in struggling mentally, what has happened to you has been hard and with Long Covid, it continues to be hard and it will drastically change your life and the lives of those around you
Do not be afraid to tell people you are struggling mentally and please if you are let your GP know and seek help sooner rather than later.
You will probably become less tolerant, my family call me Grumpy Gramps and that is because when you feel that low on energy, it is harder to handle noise, visitors, decision making and so on.
Yep sounds weird but learn to be honest.
Be honest with yourself and others. You are going to become very unreliable and at the moment during lockdown and the world the way it is, being at home and not going out is life for everyone, but when life does return to normal, you may not.
Most of us with ME/Chronic Fatigue have let people down on many occasions. You accept an invite to a party or an offer to go on a night out or down the pub and then bang, you have no energy despite the fact you have rested up.
Tell people why, do not make an excuse!
I am sorry but you may lose a few friends along the way as they resume their lives and yours is put on hold.
Prayers & Miracle cures
We have all had many offers of prayers and been sent links with cures that involve consuming a spice or herb (not that) and this is done with good intentions.
I have lost count of the amount of times my Mum has given me a newspaper clipping with a miracle cure on it or bought me some Vitamins or Minerals saying her next door neighbours sisters, friend knows someone who heard someone had recovered from snorting Ginger whilst standing in the bath at 5pm on a rainy day!
This does help!
I heard about D-Ribose many years ago and it is a component structure of ATP, the main energy source for our cells. It isn’t cheap and it is often marketed for body builders but it really does help.
It has been proven in trials to increase energy, improve mental clarity, help with sleep and improve general well being.
I took tablets for many years but now I use the powder and that can be added to Tea or Coffee, put on cereal or in a cold drink and it is the one thing that I can’t do without for my ME.
As it is so similar to ME/CFS, check out the ME Association for more information and advice.
Speak to your GP and sound them out, if they don’t seem to be understanding or helpful, find another GP because having a medical professional who understands is vital.
Speak to people on social media who have ME/CFS, their collective knowledge is often greater than many of the experts I have spoken with.
Get advice on benefits, you may not be able to return to work and so sorting out benefit payments is urgent. Falling behind with bills etc will affect your mental health and that will also not help your health.
I realise that much of what I have said paints a very grey picture, the truth is life has changed and admitting that to yourself helps.
Again, I am sorry this has happened to you. There are many of us who do understand and the ME community (the spoonies) have helped me more than I could have imagined. We understand each other and that is comforting.
Please leave a comment if you have any questions. You can follow me on Twitter and catch up with many other Chronic Fatigue patients on there as well.