Thursday, April 19, 2007


Awake in the small hours again, just me and the birds and the sun coming up as it does this time of year, as though we’re living in the first days. “Blackbird has spoken, like the first bird”. With me again, my old companion migraine, not the full-blown thing but the beginnings, which I knock on the head with a couple of those lovely pink pills. Drugs, eh? Reasons to be cheerful, as if I needed to look for them, can be found in any number of chemical substances that enhance the quality of my life by blocking or modifying nasty symptoms that are part of the package that is M.E. A respectful nod in the direction of homoeopathic and herbal products that have a significant place in the house of Signs, but what I really have in mind is the magic bullet effect of allopathic substances that go to work predictably and immediately. Of course their effects are temporary and they cure nothing, but they and I have an honest relationship. I do not ask for more than they can deliver. I am particularly happy that Co-proxamol, a combination of the humble paracetamol and an opioid called dextropropoxyphene, has been granted a temporary reprieve, having been withdrawn from the market. What they give is a few hours respite from muscle pain, and the difference this can make to how one manages a day is hard to describe. I don’t want to give the impression that I am a pill-head. It’s just good to know they are there for the times you really need something more than inner fortitude.

There are things I want to do in the next couple of days: another poetry café event to be prepared for and attended, a whole day’s workshop on the poetry of Sappho and some writing to get done for a workshopping session on Monday. I won’t manage all this without drugs, caffeine and sugar and yes, the system pays for it later. But it is, as I have said before, worth it.

Speaking of substances, I have been reviewing the hair colour situation and, though not exactly chickening out of my recent decision to let the grey shine out, I have put it on hold by using a bit of temporary colour while I mull things over a bit. It may be that for a while I will be neither one thing nor the other before I properly come out or it may be that I carry on being in the closet for a few more years. I know this sounds lame after my brave words about doing cold turkey and possibly starting a revolution but the Signs character is inclined to be fickle in some respects and is, in this season of strange, exuberant and unnaturally warm spring, not inclined to be wintering down just yet


nmj said...

Signs, I am glad you are fickle in some repects.

Re. medication, if it works, gobble it, that is my view. I never got much joy from co-prox myself, I used it for menstrual pain, and one time they wouldn't give me a repeat prescription, saying, it had been withdrawn - later I realised that people had been killing themselves with it. I felt sad for them.

The physical pain of ME is much overlooked by the CFS lunatics. I used to refer to ME/CFS on my blog, only because it is more universally recognised as CFS, but I never myself refer to the illness as CFS, as that is not what it is. I read Hummingbird the other day & got enraged all over again. Probably the best ME specific blog I have seen. So now I have taken the CFS out of mine.

Sorry to be ranting, I hate it when PWME go on, and here I am going on.

I hope you manage your poetry events.

cusp said...

Thanks for the welcome back to blogging. Sorry to hear the pain is bad. As NMJ says it's something that's overlooked and it's hard to describe how the pain is all encompassing: when absolutely everything hurts.

I think the move from labelling our shared condition as CFS to ME is jsut another part of the journey in acceptance and in eductaion of other people e.g. I used to say I felt tired. Now I tell the truth and say I feel ill. I used to try and cover up how I was if people were visiting ---well dragged up to put others comfort before mine. Now I just excuse myself and say I have to go and rest.

nmj said...

'I think the move from labelling our shared condition as CFS to ME...'

Dear Cusp, Sorry, I don't understand your comment - the illness was known as ME before the CFS term was coined! Please forgive me if I have misunderstood, I am quite good at not absorbing things properly. I suppose I believe that CFS & ME are two different illnesses - you will often find that those who refer to themselves as having CFS have made a kind of recovery after just a few years, where they can at least work part-time, and fatigue seems to be their main symptom, they don't have all the weird immuno neuro muscular stuff going on. Or maybe, as some believe, they are related illnesses on opposite sides of the spectrum? But CFS seems to me far less debilitating (in terms of years lost & severity of symptoms) and more treatable (if the CBT/GET zealots are to be believed). I am not trying to diminish the suffering of those who have CFS, but it is surely not the same illness as ME?! I often think of the young woman I met years ago at a clincial trial who told me having 'CFS' was the best thing that had ever happened to her, it had made her stop & re-evaluate - she gave up her stressful job and after a year out started a law degree (full-time). I can't imagine anyone with ME saying it was the best thing that had ever happened. It is easily the worst thing that has happened to me and to those I know with ME. And 'fatigue' goes no way to describing the exhaustion of ME, that is why it is such a dangerous term. Sorry, Signs, I am hijacking your blog.

Reading the Signs said...

Hi nmj and cusp - For 20 years or so I've used both terms and finally settled on M.E. because it more accurately represents the illness. I think for a while I used CFS because I thought it was more "user friendly" which is ridiculous. Yes, Hummingbirds is a great site, a fantastic achievement, I think.

I gave up shutting up about it, hiding the evidence, so as not to spoil anyone's day. But people are not comfortable with the idea of chronic illness ("but surely it gets better in the end!" etc.). It's tightrope-walking, isn't it, for all of us? And yes, the silver lining "best thing that ever happened" spiel is shit. We develop and grow in extraordinary ways in spite of it all - is all.

nmj, I think some of the coverage about co-prox was misleading. The people who misused it could have as well used paracetamol. I don't take much - but it's imnportant to know it's there.

Anonymous said...

Signs, I am with nmj on enjoying your fickleness. I liked that you weren't with the natural grey and now I like that you have put it off a bit. Be fickle, enjoy it. Make a decision, make another decision.

I cannot imagine your life with ME. It is unfathomable to consider invading one's life, unless it actually does. I laughed out loud at nmjs comment, "Re. medication, if it works, gobble it, that is my view." (Something about the word "gobble" I think.) Whatever works for you, I am certainly glad there is something that allows you some relief.

Best wishes for success with the workshop, and the poetry cafe event and all else. Especially daily life.

nmj said...

Hey Signs, I think it's actually the dextropropoxyphene that is more toxic.

According to this article, that is what kills you, the respiratory failure, not the liver damage of paracetamol.

nmj said...

GT, I wondered later if gobble made me out to be a pill-popper, then I worried it was overly sexual. I actually hate taking drugs & always read the leaflets over & over. But with ME pain, you will take anything to stop it. I just wish now I'd stashed my co-prox before they stopped it. It is def better than straight paracet.

cusp said...

Hi NMJ I think I must have put what I meant rather badly. I'm foggy as usual.

I totally agree that CFS and ME are two different entities. I know too that the term ME came before CFS. What I meant to say was that, given that so many people now use the term CFS for ME (i.e. people who don't know the difference)or use the aristocractic double-barrelled monica, CFS/ME, many PWME had, for a time, also gone along with that and used the double term.

When you get a real hold on the complexities of the illness and all the political/medical guff that goes with it you begin to realise that using the term CFS is demeaning to yourself and the amount you suffer (and let's not be gracious and brave --- we DO bl***y suffer). It also perpetuates the myth that the people with the condition we share are just rather fatigued and tired and laze amount swooning in a delicate 19th century sense.

So when I mentioned '...the move from labelling our shared condition as CFS to ME is just another part of the journey in acceptance and in eductaion of other people ..' I meant just what you are saying: that we should all move to calling it ME and leave CFS in the shade where it can wither and die. Either that or keep it for the other group which you describe --- those who are burnt out etc.

Incidentally, my GP told me I was burnt out 9 years ago. He tells me he doesn't actually believe there is such a thing as ME and inisists on referring to my condition as CFS. On the other hand, after I was referred to the local ME/CFS clinic, the consultant told me I def. do have ME and had probably had it since age 17 ---33 years ago. From that comment, all the struggling of most of my adult life began to make sense.

Sorry RTS --- I seem to hijacked your blog too now but it doesn't seem right to divert the discussion to my blog of NMJ's and I want to set the record straight. Oh dear, two days into blogging again and I'm already floundering about bloggers' etiquette.

cusp said...

Dear Signs....meant to say thank you very much for adding me to your Blog link sidebar. Most kind, my dear --- especially as I've been highligted as new. I am reborne !!.... like I used to feel after a Saturday night bath when I was 5.

nmj said...

Hey Signs, this is turning into a Periodic Englishman type thread, you know the kind, may I address Cusp, please?

Hey Cusp, I am sorry I misunderstood, I love the thought of reclaiming the nomenclature, but it doesn't look likely to happen without a revolution. Sigh.

Reading the Signs said...

Hi folks - nothing wrong with a Periodic Englishman-style thread - won't he love the idea of it, though? A style of thread being named after him? Best not tell him.

I had a look at the link you gave, nmj - still think there's more to the whole issue. My view is that those who are going to abuse co-prox will simply find something else (and there's plenty) if this is permanently withdrawn. It's a drug that makes a difference to many people with chronic conditions.

You have time to stash - it's back till the end of the year.

goodthomas - I do like "make a decision, make another decision" - it feels nicely Zen to me, and has just the right touch of lightness - like my hair colour, I suppose. I shall appropriate the phrase.

newborn cusp - take it easy in your new blogshoes.

nmj said...

Blogshoes, now that is a lovely concept.

I agree, Signs, people can always find drugs to OD on if that is their wish, I meant more that it is the non-paracetamol ingredient in co-prox that makes it potentially (more) fatal. Had no idea it had had a reprieve, I get co-codamol instead now. So why did they withdraw it, I wonder?

The Moon Topples said...

RTS: Will you be changing the color of your profile sign as well?

I know this probably makes me impossibly ignorant, but from where is the "Blackbird" quote you used. I like it, you see.

I have no idea what ME must be like, but in terms of outsider understanding I think it is infinitely preferrable to CFS. In America, at least, people hear CFS and go "Oh, tired all the time? Well, me, too." It conveys neither the painful aspects of the illness nor sounds even remotely medical.

They have commercials over here for a drug to help with something called "restless leg syndrome," which I am sure is a legitimate problem, but which sounds a bit like a punchline.

Sorry to ramble for so long. I'm glad your pills are back, since they seem to make things more manageable, and I wish you luck with the items on your agenda.

Reading the Signs said...

Mr. Moon, the words are from a song Cat Stevens used to sing (also used as hymn sometimes, I think) - lyrics by Eleanor Farjeon. First verse is:

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the word.

I've been thinking of changing my sign, you know, so watch out! Actually, I'd quite like a sign that says Watch Out. Got one stored on my phone that says "keep off the groynes". Not sure about that. And Mr. Moon - you're always welcome to ramble!

nmj, they withdrew it because of all the above and then there was such a hue and cry from people who really didn't take to co-codamol they decided to bring it back for a bit. I'm stashing.

Reading the Signs said...

Morning has Broken - Enjoy.

The Moon Topples said...

RTS: Now I feel pretty stupid. I usually never forget a song lyric, but even though I know "Morning Has Broken" fairly well, I completely failed to recognize it.

To make matters worse, I only recently shelled out for a 180-gram vinyl repressing of the album from which it came.

Bad maht!

nmj said...

Hey Mr Mahti Moon, In the time I spent in USA off & on between 90& 95, no one knew what I was talking about re.ME, so I did end up saying CFS, but they still often didn't know what I was talking about, it was not much referred to then. Interestingly, the USA is way ahead of UK in its thinking now, but that wouldn't be difficult. They also referred to it as Raggedy Anne at one point cos people felt like rag dolls - I like that, it is sexy - & it is possible to still be sexy & feel sexy during the better times. I feel I must say this as I have been spreading doom & gloom a bit...Not that I am flirting with you, my flirtations are all for periodic pony boy, wherever the hell he is, & I know anyway you have a crush on Anna MR's Madame.

The Moon Topples said...

NMJ: Looking at that picture again, I am struck now mostly by the fact that she appears to be something like fifteen years old. I have a crush vacancy, it seems.

But I know that you were not flirting with me.

As someone in the US, I can honestly say that I had never heard it referred to by any name other than CFS until sometime last year. Maybe we're not ahead after all? Or perhaps I am just not paying attention.

nmj said...

Hey Moon, I think it is also referred to as CFIDS in USA, & also they don't blindly pursue the psychosocial theory that although genuinely ill, we are perpetuating our illness with negative thoughts, that is still the danger here amongst a big proportion of medics.