Ok, so I haven’t written any blog posts for a while. This isn’t because of a lack of ideas; there are quite a few half-formed ones in my head. Rather, it’s a lack of energy to put these into a coherent form.
The main reason is that early in the year I developed quite a bad throat infection, which pretty much knocked me out. I’m still not fully over it, as shown by the fact it takes as much energy as I have just to do things that have to be done, leaving little or nothing for anything else.
I have M.E. I’m fortunate in many ways, as most of the time this is on the mild / moderate end of the spectrum, of the range of disability that this illness causes. I’m not bedbound; I’m not housebound. I can take care of myself, do some of the housework, even the weekly food shopping, go for short walks, and go out to external activities, mainly associated with church.
At least, I can do this most of the time. But during a setback or relapse, as I’ve experienced over the past couple of months, things get worse. When I wake feeling quite energised, but after showering and getting dressed I’m done for the day; when I try a short walk that has to be cut even shorter because I’m feeling dizzy; when attempting to read anything at all just makes my brain go fuzzy – at times like these I know I’m not up to even my usual self, and I get a glimpse of what it’s like for those whose ME is severe or very severe.
Only a glimpse, though. It’s one thing to have a really bad day every now and then, but quite a different story to live like this all the time, so that even getting dressed is an achievement to be celebrated.
I’m lucky in other ways, too. I’m 59, and I’ve had a good career. I might complain that it has been cut short, and that in the last few years I couldn’t do as much as I really wanted to do; but it was good, enjoyable, successful, worthwhile – and long enough so that I could retire on a reasonable pension and don’t have to go through the stress and frustration of applying for benefits.
But what about those who are struck down by this plague early in life, who can’t hold down a full-time job, or in severe cases even a part-time job, who have no pension, who rely on benefits to survive – and who may be faced with the prospect of this for a long time?
Because there is no cure for ME. There are hundreds of scientific papers exploring just what is going on in our bodies with this disease, but so far nothing that is recognised even as a practical diagnostic test, let alone any therapies that can cure or even alleviate all the symptoms. In the UK and many other countries, it is often regarded as a “psychosocial” syndrome, conflating it with “CFS” which in turn gets confused with “chronic fatigue” as the major symptom from a varity of causes.
ME is not simply fatigue, tiredness, and the range of symptoms needs to be understood so this illness can be treated effectively.
So I’m going to do something about it. I can’t do a sponsored walk (unless it’s a very short one!); I certainly can’t run a marathon or climb a mountain. So what I’m doing is resting and sleeping. In May, I will be taking part in the Big Sleep for M.E., an event (or non-event?) to raise awareness of this disease, and to raise money to help cure it.
And although I’ll be physically on my own, I’m going to be doing this as part of a group of amazing people that I have met through Twitter. Many of them are younger and/or more severely affected than I am, yet are great at supporting one another in our worse times. They are really enthusiastic about being able to take part in something, and have decided to dress up as princesses for this event, inspired by stories like ‘The Princess and the Pea’ and of course ‘Sleeping Beauty’.
So I am proud to be a member of “Team Princess”, and hope that you can support us in our valiant efforts. If you would like to donate, please visit the team’s “Just Giving” page.
Now, where did I put my tiara …. ?