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Living the 'Half-Life' With ME/CFS

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Today marks three years since my formal diagnosis and the world is now a very different place than the one it was prior to that – well, it is for me anyway. Three years or 1,095 days to be exact. It’s strange I should consider this date significant as it was not the start of my illness, just the date which marked the end of a journey to discover what was actually going on, and I finally got an answer, if not a cure, as to why I was always ill and so utterly exhausted, and why over the period of the previous two years I had appeared to be getting less and less well and more and more fatigued.

It is no secret to those who know me well that I always struggled health-wise and with sustaining energy, and in hindsight perhaps the clues were there all the time. The little dots which the medical profession and I failed to join up. It is difficult to say whether things would be as they are now had I received a diagnosis earlier. Perhaps I would have spotted the warning signs and stopped to ensure my body didn’t free fall into the dark, strange abyss that only those of us with ME fully understand.

My condition is only considered moderate. I have some semblance of a “half-life,” or maybe it’s just a third of one when I look back at my color-coded calendar (some of which is attached to this post). There are others out there who experience far worse than I do. Over the last 1,095 days I have spent 210 days bed-bound, which equates to three days short of seven months. Those days have literally been lost to me in a haze of intense neurological pain, physical joint and muscular pain, intense vertigo to the point where I find standing difficult and acute nausea. The only way I can ever describe it is as if the oxygen supply has been cut off to every section of my body and my body is swelling, including my head, to the point of explosion.

It is still very difficult to predict when these days will come. Most often they will appear after my body has used up all its energy supply, when my ATP production has not kept pace with the rate at which I use it up. Private medical tests have shown I deplete ATP twice as fast as I make it. To this end my life has shrunk and pacing has become a way of life, as I try to ensure I don’t use up more than I can make.

The big issue for those of us with this condition is we don’t come with a gauge that tells us how much is in the tank or how much an activity will use. Some days, having a shower and washing my hair will be enough to send me back to bed. Other days, I will be able to go for a walk, go and collect Harry and be out of the house for two or three hours before I will require a rest. These days are considered my green days, which I will move on to shortly. My red, or bed-bound days, are very hard to cope with, not least for me but for Steve, Harry, my parents, my sister Judy and my parents-in-law who invariably pick up the pieces I am literally and physically unable to hold.

At 88 and 81 my parents are amazing, and despite me hating to ask them, they are more than happy when they are able to pick Harry up from school, likewise with my sister and my mother-in-law who often with little notice come to my aid. That’s another issue with this illness – a day can seemingly start well and in the matter of minutes can disintegrate into a haze of pain and inability to function.

Throughout these red days it is very hard to find the positives, amidst the intense pain, nausea, diminished cognitive function and the guilt. But slowly over time I have begun to relax into them more. I spend lots of time trying to meditate to focus on my breathing and accept that this too will pass… eventually. There is a misconception that everyone with ME sleeps through these days. That is not always the case. Sleep is sporadic and because our central nervous systems are not working properly, we often sleep for only short periods of time before waking. For example, one night I woke 24 times, having slept only 12 minutes at the longest stretch.

So what of the days when I am not bound to the bed but when there is still a catalogue of issues going on? Sometimes there is neurological pain and or dizziness, sometimes there is cognitive dysfunction and brain fog, which may or may not be coupled with exhaustion and/or weakness and sometimes it is all of these things combined to varying degrees. There are the days where life is compromised due to illness where I may only be able to leave the house for an hour or so but where I have to watch with extreme vigilance what I do so that I do not expend too much energy or tip the invisible balance scale that myself and others like me live on.

In the 1,095 days since diagnosis there have been just over 650 of these days. That is 21.3 months or a year and a half on top of the six months in bed of not feeling great, of having been in pain or feeling fuzzy or weak or tired. You may well see me on one of these days, aided by the wonders of makeup and a hairbrush and hair straightener. I will look fairly normal to you, not even the slightest bit unwell, but these days are not easy – these are the gray half-life days. Where everything is clouded in a haze, where living is an effort if I leave the house. These are the days many of those with ME endure day after day after day. Yes, I can leave the house on some of these days, I can even drive, yet on other days of this color I can’t. It’s random and I never know what kind of day it will be until I am in it.

So where are the positives in these days? They account for a year and a half of the last three. These are the days when I am predominantly on my own when isolation can and often does kick in. These are the days when sometimes I long to be part of the world, to be back in the classroom, to be alive and to feel alive rather than existing in this half-life, but where talking can be exhausting as can noise and light.

But this half-life has brought some benefits. There is the newfound luxury of not rushing and living life at 150 miles an hour. There has been time to pursue creative endeavors such as my book folding or painting, meditation, time to catch up on 25 years of TV series missed. Time to think… time in which I have learned a great deal of science and can sit alongside any medical professional and speak more adeptly and with more knowledge and insight about this condition than they can, for the medical world is far, far behind those of us who live with it.

And what of those green days? The holy grail of days! The days where my head is clear, where pain is minimal, where the energy is better and my body feels joined up as a whole and not disjointed like separate pieces, where things are working together cohesively. However, I need to add that this is a good day for a person with ME – these days are not what you might consider normal, good days where you could keep going for 15 hours nonstop. They are days when my tank “feels” a little fuller and the notion of bouncing the boundaries is more possible. These are days I cherish and absolutely do not take for granted now.

Resting and stopping and meditating are key parts of these days. Being mindful of what is going on is key to ensuring that I do not exceed my body’s capacity, for overdoing it is a real issue for those of us with ME. There is an art to taking it slowly and carefully on a good day. In the early days of diagnosis, I tried to make up for all the days missed on a green day. Invariably this would lead to another two red days afterwards as I had completely overdone it. The positives of green days are not just the ability to be me again, but the awareness I have of the preciousness of life in all its glory, where I can take the world in, where I am not sensitive to every sound or light, where for a period of time I can be me and smile and be free.

The last three years have been hard, I won’t lie. I have been pushed to my limits and it has been exceptionally hard for Steve. We have worked hard to ensure that Harry has remained as unaffected by my illness as possible but inevitably we can only do so much. I try hard, very hard, to remain as positive as I can, as I live out what appears to be a custodial sentence with no release date. I think back over the three years thoughtfully and with a heart full of sorrow and gratefulness considering what I have lost and gained.

Three things stand out as the greatest losses during that time: A career I loved that gave me fulfillment and pride along with people I once thought of as friends, and, most importantly, I have lost the freedom to live without compromise. That said, the gains (including the weight, which is now starting to come off finally thanks to a ketonogenic diet) have been no less significant. I finally gained time to assess my own achievements and not to belittle them, something I always did to see and accept myself for who and what I am without excuse. I have gained a very real and true appreciation of life when days are good and a greater appreciation of the value of those people who have stayed true to me and are still there.

So this brings me to an early resolution – I intend every day for the next year to post one positive thing on Facebook. I only say to do it on Facebook because I know that will give me a focus to make sure I do it.

It is vital for me to find the positives in the majority of my days. There is often little obvious there, but I will look for them.

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Photo via G_ on Getty Images

Originally published: December 26, 2017
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