THIS MUCH I HAVE LEARNED.

I have recently passed my eighteenth sickiversary (copyright nopostergirl.com), the anniversary of the date that I mark as the beginning of this long, arduous adventure with ME/CFS.

With luck, if you have to experience anything for eighteen years, you are going to learn something. And here, in no particular order, is some of what I have learned in those almost two decades. I have to stress that everything I am talking about is related to my own particular experience, and I am not expressing any kind of general statements on the condition. Though of course much of this may make sense to others in the same situation.

A. Doing too little is almost as bad as doing too much

Again, to stress, this is my experience. 

Like with a lot in life, the trick is to find the golden mean, the happy medium, the balance between overdoing things and resting too much.

I have experienced this necessity for balance again and again. One area is sleep. At the beginning of my ME/CFS saga I was sleeping fourteen hours a day, as I was so exhausted I thought that I needed this much sleep. Of course all of this sleep was contributing to the exhaustion. This was pointed out by the first ME/CFS doctor that I saw. Once I regulated my sleep pattern, started going to bed at a regular time, and forcing myself to get up at 8a.m. every morning and not sleep during the day, I began to feel human again.

On many occasions during a relapse I have been so paranoid about making things worse that I have ended up sleeping during the day, and taking every opportunity to lie flat and rest. And over and over again I have found that as the relapse has gone on I have become worse, not better, often taking even more time to rest, even more time to lie down, and have done less and less until it seemed impossible that I could do anything at all.

It was only when I returned my sleep to a normal rhythm and stopped lying down at every opportunity that I was able to get out of the hole I was in and get back to some slight activity. It is clear to me that something about shutting down all activity has a very negative effect on my central nervous system, and somehow causes it to slow down even more.

Of course a return to activity has to be careful, gradual, bit by bit by bit, but it is necessary if I want to make any kind of progress. Doing too much, being too active, pushing myself at the wrong time, these are all dangerous to my wellbeing. But doing nothing, being over-careful, over-resting, is almost as bad, and has led to a kind of spiral of increased disability in the past. 

Getting the balance right is very difficult, but it is important. 

B. Sleep is vital (to feel well, and as a marker)

Naturally, if someone has any medical problem, sleep is important. What I have found though, is that it is important to have a rhythm to my sleep, and to maintain this. In other words, to go to bed at a similar time each night, and get up at a similar time each morning. If this is broken for any reason, then things are going to be that much more difficult.

If sleep is disturbed for any reason (and this has happened on a number of occasions over the 18 years), then I know that something is wrong. Recently, I stopped using the rebreathing mask that had been increasing my levels of carbon dioxide, and which had been helping me for a while.

I stopped it after a particularly heavy relapse that I fell into about six months ago. The mask was only making me feel worse at the time and I thought I could do without it. I did manage to recover, and get back to some work, but I was a long way off where I had been before. My chest was constantly wheezing, and I woke most nights for an hour or more.

Then I went back to the mask, and the sleep improved immediately. The state of my sleep is a pretty reliable marker of how I am, and if I need to change anything.

The other point, as I have already mentioned, is that it is possible to sleep too much. Anything over seven and a half hours is probably excessive, and stops being something positive and becomes more of a drag on my whole system.

I had sleep problems for a long time, and one of the ways I solved them was that I stopped trying to sleep eight or nine hours and instead settled for between seven and seven and a half solid hours. Quality and quantity is important, where sleep is concerned.

C. The importance of Carbon Dioxide (CO2) and Oxygen (O2)

My last two years have been a rollercoaster of relapses and recovery. A lot of it has circled around my use of a rebreathing mask and breathing exercises, both of which increase the levels of available CO2 in my system.

I have written a lot about this before. The CO2 is essential in the process of energy production which also involves oxygen, but the oxygen is useless without the carbon dioxide. From experience I am discovering how vital having enough CO2 is, for me at least. Since restarting wearing the mask I have improved steadily, and am now relatively active, working two thirds of a week and able to go on holiday.

For now at least I have a kind of handle on the CO2 situation, am increasing my use of the mask and still improving slowly.

D. The Autonomic Nervous System (ANS) is key

There seems to be two main systems of the body involved in ME/CFS in general, the immune system and the central nervous system. I don’t really know what role the immune system is playing in my condition, but the autonomic nervous system, the part of the central nervous system that controls the automatic, unconscious elements of the body’s function, is absolutely central in my particular case.

The ANS controls breathing, pulse, heart rate, blood pressure, sweating, body temperature, all of the things that you have little or no conscious control over. If any of these elements are out of balance, it is the ANS that is effected.

Nearly everyone with ME/CFS has some of the following: difficulty standing, palpitations, nausea, sweating, poor temperature control, fast or slow pulse, shallow breathing, light-headedness. These mark a problem with the ANS. It is easy to say this, but harder to figure out why, or to fix what is wrong.

The rebreathing mask, and the increase in CO2 that it produces, is one way that I have been able to tackle the ANS disfunction. In the Breakspear clinic, where I have been treated, my doctor called it “dysautonomia”. Other people have tackled this by meditation, mindfulness, or even HOT.

This last approach is Home Orthostatic Training, and involves retraining yourself to be able to tolerate being upright or standing. It is something I hope to start in the new year, and something I will write further about.

E. Do not despair.

This is the last one, but not the least. And is one of the hardest things to do.

I know how hard it is not to lose hope, as I have despaired on more than one occasion. About four and a half years ago I had a pretty severe relapse and entered into a deep depression. I had had pretty much all I could take, and had lost the ability to keep on coping with what seemed like a totally intractable, insoluble condition.

I just wanted it all to stop, to be honest. The strain of, what was then 13 years of illness had taken its toll, I had lost everything, and couldn’t see a future for myself. I was irrational in my despair, but that was understandable, as I had made so little solid progress in such a long time. In fact it felt like I had just got worse.

The thing was, there didn’t seem to be any way to fix or improve things. And yet, with time and some luck, and the support of family, with patience and perseverance and determination and more luck, I have made progress.

I have just come back from Spain, where I went to do some travelling, spending some days in Malaga and then on to Cadiz. One morning in Cadiz I rented a bicycle and cycled around the edge of the city there, went to the castle and walked around, cycled back to where I was staying. This was all limited by my condition, but with careful management it was possible. I am home now, and feel ok, managed to enjoy Christmas with my family, and have survived the busy last few weeks pretty well.

During the academic year I am working at about 60% or 70% of a full week and have a life of sorts. None of this is easy, none of it is without sacrifices or compromises, and none of it is guaranteed to last, but for now I am more active than I could ever have imagined in the pit of my despair, four and a half years ago.

It is easy for me to say, of course, from my fortunate position as someone who has managed to put some kind of life together. But I do think that it is important to hold on to the hope of improvement, even in the darkest times. Four and a half years ago I was sure that I was done, finished. But we really have no idea what the future will bring, and how things can change.

It is not always easy, but it is necessary to hold on through the dark times, and keep the despair at bay. This much, at least, I have learned.