SICKIVERSARY

Today is my sickiversary. As the name suggests, it is the anniversary of the day that I count as the beginning of my experience with ME/CFS. It was sixteen years ago today. Sixteen long years.

First of all I need to give credit to Jocelyn over at the excellent blog No Poster Girl, for coining the phrase "sickiversary". I think I read it first on her Facebook page though it may have been mentioned in a blog post. It struck me at the time as something worth stealing, and here I am, stealing it!

Usually, an anniversary is something to celebrate. A sickiversary is not. Many of us with ME may actually have trouble pinpointing the exact date of the beginning of our condition, and I know for me I could have chosen three or four dates. But November 30th seems appropriate because the day before November 30th, sixteen years ago, was the last day that I can say that I was more or less well. That seems as good a point as any to begin with.

So what happened on November 30th, 1997? I got a cold. Nothing more, just a head cold. The important point was, though, that I had had a year of constant infections prior to that, a lot of sore throats, chest infections, colds. The cold that began on November 30th was the culmination of twelve months of illness.

At the time I was living in Lisbon, Portugal, teaching English. I was twenty-six, just starting to think about what I was going to do with the rest of my life. Pretty much all of 1997 was taken up with being sick or recovering from illness, nothing serious but just these constant nagging infections.

Because of all of the sick days I had to take, I started to get pressure from work, and then began to go in to work when I really wasn't up to it. This exacerbated my health situation, and meant it took me weeks to get over a simple throat infection.

Of course I was living in a foreign country, and so was a bit isolated there, and also really didn't know what was going on. I was young and had high expectations from myself and from life, and when neither matched up to these expectations, I didn't know how to handle things.

Still, I did have periods of relative health during 1997. In fact, from the beginning of the school year in September until late November when I came down with my cold, I had been relatively illness free. Yet something happened with this winter cold I caught, the runny nose and cough went away within three days, yet this crushing, debilitating fatigue did not.

I went back to work, though I knew that I wasn't able, and actually managed to struggle through three weeks of teaching until I could go home for Christmas. I remember those weeks really well now, even sixteen years later. I suppose I felt then similar to how I feel now. I took a taxi into work each afternoon as I couldn't make it to the bus stop, crawled through my classes, and came home and collapsed at night.

Those few weeks are quite clear to me now. I remember one night in particular. I had recently bought the Radiohead album OK Computer, and this evening I again took a taxi home, shuffled up the stairs to my flat that I shared with two other teachers, and collapsed on to the bed. I put on the Radiohead album on low volume and simply lay there, unable to do anything else. The feeling of being utterly drained is still with me, I can still feel what it was like to be totally incapable of moving in any way, along with the questions I had regarding what was happening to me. I had no idea what was going on.

There have been, as you can imagine in sixteen years, a lot of twists and turns along the way since then. I've been asking myself recently, how much of that twenty six year old is still left? I'm not sure I can answer that.

What I am now is in large part what ME has made me. I have now been dealing with chronic illness for almost exactly two thirds of my adult years, and so I can barely remember what it is like to be able to face into a full day of activity, or spend a day without napping in the middle, or to go twenty four hours without a wave of exhaustion assaulting me. I was still in formation back then, still in the process of becoming, and this process never reached a completion.

So in a sense I feel a little stunted. Suffering from arrested development. While my friends and contemporaries were getting married, having kids, buying houses, building careers, being adults, I was living with my parents, working a couple of hours a week if I was lucky, stumbling through life from one crisis to another. ME/CFS has taken a huge bite out of the best years of my life, and I can never get them back.

How was it possible that I used to be a person that got up, and then started doing stuff for a whole day, until going to bed again? How does someone do that, work a full day, and then maybe go out, or to a night class, or go home and talk to their family, and not have to constantly rest just to make it through each twenty four hour period? I have been so conditioned by sixteen years of how I have to live, of the compromises I have to make, the things I have to turn down, the life events that I have missed, that picturing what it would be like to be healthy is almost beyond the scope of my imagination.

For a long time I suffered a lot of regret and sadness about how it has all turned out, though in the last few years - despite some crashes along the way - I have managed to move out of my folks' place, and to work a little more, to get back something of what I have lost.

I am relatively philosophical today, this day of my sickiversary. Part of that, I think, is from the experience of blogging about this condition. For one thing it is a form of therapy, a way to communicate some of the experience of living every day with this thing. A forum for letting off steam.

For another, I have had the opportunity to read about other people's experiences - many of them much worse than mine - through other ME blogs that I have begun to follow. This has put my own sixteen years into perspective, and has shown me some of the things that I should appreciate about what I have, rather than bemoaning what I have lost.

It also helps that I have just come through a recent relapse, one that knocked me back badly, and now seem to be at least back to my old self, or even actually making some progress. I have been using a rebreathing mask, which I feel is now having something of a positive effect, though it is subtle. Some days I have short periods when I feel the clouds clear a little, and feel the crushing fatigue lift, though I am a long way from being cured. However, the increased CO2 I am getting from the rebreathing mask does now feel like it is doing something.

I may write about this more in the future, when things have settled down a little and I am more sure about how I am. I also still have these debilitating periods pretty much every day when it's difficult to keep my eyes open, or when it feels like I am carrying a concrete block though life, though they are fewer, and don't last as long. For now I am trying to adapt to the slight increase in my energy and well-being, and not count my chickens.

Despite this recent subtle improvement, it still seems remarkable to me that I used to be well once. Sixteen years ago I had never even heard of CFS, or ME, and couldn't have imagined what my late twenties and thirties would bring me. I had what the Spanish call ilusión, a kind of mixture of ambition and desire and wonder about the world, a faith in the future.

This faith, this ilusión, has taken quite a battering in the last decade and a half. Sixteen years later I am still here, still fighting against this chronic situation, still trying to understand what has happened, and why. Sixteen fucking years. Happy sickiversary to me. 

DSYAUTONOMIA, THE AUTONOMIC NERVOUS SYSTEM AND ME/CFS

The question of the fundamental cause of  ME/CFS is an intriguing one. It's one that I find fascinating, mostly because it effects me personally, but also as it is something that medicine largely seems to have no answer for. It's like a puzzle, an intellectual challenge. I am only surprised that more scientists haven't shown more of an interest in working out the enigma.

From what we know, and from our experience, the immune system certainly seems to be implicated, but in my own case my symptoms appear to be more closely tied to dysautonomia. Dysautonomia is simply a malfunction of the autonomic nervous system, and something that most people with ME/CFS have, in one form or another.

The next question, of course, is What is the autonomic nervous system? The autonomic nervous system (ANS) is the system in our bodies that controls anything that is not conscious on our part. This includes heart rate, blood pressure, digestion, saliva production, breathing, sweating and temperature control. It's what happens automatically when we're doing something else. It's supposed to run like clockwork.

Most people with ME will recognise the above list, as they are all areas people suffer with. Personally I have problems - like most PWME - with regulation of blood pressure, I can't stand for long periods and feel drained if I have to, and being upright at all can be tiring.

I don't really sweat, even in my sauna at 50 degrees Celsius, I have had problems regulating temperature, I have low saliva production, some digestion problems, sometimes a tight chest, and a heart that occasionally pounds or beats too fast. This is all related to the autonomic nervous system.

I recently discovered the website of a group called Dysautonomia International, which represents people from a wide range of conditions that all suffer from elements of this problem with the nervous system. It makes reference to POTS (Postural Orthostatic Tachycardia Syndrome), which a lot of people with CFS/ME experience, as  a difficulty staying upright or standing, and a tendency to faint.

There is a certain amount of research being done on this area among scientists, and I know that in Breakspear, the clinic just outside London that I am attending, they put quite a lot of emphasis on treating the autonomic nervous system.

They do what they call an Baseline Autonomic Index. To do this they attach sensors to the chest, stomach and heart, and clips on the fingers to measure the blood gases, and also put a band around the chest. And they measure heart rate and pulse, as well as the levels of oxygen (O2) and carbon dioxide (CO2) in the blood, blood pressure and breaths per minute.

Also part of the test is a challenge to the central nervous system. In my case the doctor asked me to take six very deep breaths, one after another. Even though I was lying down I felt quite light headed quite quickly. This, he said, was due to a lack of CO2, which he could measure from the sensors. To counter this he gave me a rebreathing mask, which I have written about before.

The mask is worn basically to correct the lack of CO2 in the body. This in turn is supposed to help the levels of O2, which are necessary for producing energy in each cell in the body.

Another one of the therapies that I have been looking at recently is called Somatic Experience therapy. A friend of mine - also with ME - has had good results from it, she says. It aims to engage the parasympathetic nervous system (PNS) - the so-called "Rest and digest" part of the nervous system - and to turn down the sympathetic nervous system (SNS) which manages the "fight or flight" impulse. The difference can be seen here. The SNS is for emergency situations, though what happens in CFS sometimes, is that people get stuck in the "fight or flight" mode long term, thus causing many of the symptoms common to dysautonomia and also to ME.

It is something I may try in the future. Another thing on my list is H.O.T. This stands for Home Orthostatic Training. It was developed, as far as I know, by Professor Julia Newton, in Newcastle University, who has done a lot of work in this area.

The training is quite simple. The patient stands against a wall, with their feet 15cm from the bottom of the wall, and their head leaning against the wall. This creates a kind of tilt. The idea is to do this for thirty minutes, though the vast majority of people with ME will have to build up to this period of time slowly. I can imagine starting at 30 seconds, and increasing from there.

It is important to say that for people with ME/CFS - and especially for those who are more effected - this may not be possible, and may induce a faint, so should only be done with caution and probably with someone else there. They also advise that you discuss this with your doctor, and also have cushions around you in case you do pass out.

The general idea of HOT is to retrain the body to tolerate being upright, standing, maintaining blood pressure. I have actually been in touch with Professor Newton, I emailed her and she kindly responded within a few days. She says that for those who can tolerate the therapy, they have got good results with improvement in energy and greater tolerance of being upright. There is info on a preliminary study here. 

Again we can see that it is about retraining or resetting the autonomic nervous system. It is about correcting what has gone out of balance, getting the ANS to behave as it should.

This is the key, I think, resetting the autonomic nervous system. This is what these  therapies do, and what I feel I really need. It makes me think of my laptop, which at times begins to malfunction. Processes like opening a file or playing a video, that are normally almost instantaneous, become slow and sluggish. The connection to the internet drops, or it refuses to sleep when I close the top, or it doesn't recognise my printer when I connect it.

Whenever this happens, my first instinct is, naturally, to reboot it. Turn it off and turn it on again. Invariably, this simple action improves or resolves the problem. More often than not my laptop is working perfectly again after a chance to reset itself and start again, its central nervous system now in synch.

And that's what I wish someone could do for me, I feel that I need to be rebooted. I need to be switched off, and then switched back on again, to be able to reset. I feel profoundly out of synch, out of rhythm, unbalanced. I am sleepy during the day and sometimes can't sleep at night, my energy runs out way way before it should do, I can stand for a few minutes but then feel the blood draining from my head and brain, and lose basic functionality. I am stuck in this malfunctioning rhythm where things just don't quite work as they should, and where everything is slow and sluggish and out of phase.

And all of these approaches, the rebreathing mask, SE therapy and HOT - as well, no doubt, as many others - seek to help this rebooting process. They may or may not work for me, though I intend to try them all, but somewhere here I am convinced is a key to what has gone so wrong with my autonomic nervous system.

There is a running joke from the British Channel 4 sit-com, The IT

Crowd, about the slightly dysfunctional IT department in a London company. Any time anyone rings them up reporting problems with their computer they get the same reply from the techs there - "Have you tried turning it off and turning it back on again?" This is the full extent of their expertise. I just wish I could turn myself off, and then back on again, and see what happens. 

A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.

 

So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall.