"I can see Sunsets"HOME Canberra FM/CFS Page Library Contents
"I can see Sunsets"observations on having CFS, by Clytie
[ Denial ] [ Guilt ] [ Anxiety ] [ Pain ] [ Fear ] [ Courage ] [ Gratitude ]
[ CLYTIE'S FAMILY PHOTOS (139k) ]
The difference between what I could do in my "normal", madly active life and what I can do now, is more like living in another dimension than "just" being ill.
Yet one of the worst problems for me with this illness, my worst barrier to recovery, was not being able to realise how sick I was. I had just become used to it. Even when I was hospitalised, somehow I told myself that was just a bad spot. I don't think any of us wants to know we’re sick -- to face losing our job, our income, our ability to be useful to those we think need us. But we don't help ourselves by soldiering on.
Doctors can’t be relied on to tell us to stop, either. They might admit we’re in pain, but as long as we’re 'coping', why should they do anything (I think that's the reasoning)? What they don't realise is that people with the "push on regardless" mindset eventually run themselves down and out, and are then much worse off than if someone (preferably themselves) had intervened and "done something" to change their lifestyle.
Because to cope with this illness, you have to change your lifestyle in a fundamental way. You have to compare yourself with a "healthy" person, and realise how sick you really are, how abnormal it is to feel this way.
It’s hard to read the early warning signs early enough, though. I find that by the time I'm overextended, I am too tired to have the judgement that would tell me to stop. But I am gradually learning.
[ Contents ]
My children don't want to know about my illness either. I'm all they have, between them and the wide, cruel world of reality. They need, want, to believe that I am OK, that I will be there, strong and reliable, and that nothing can take me away.
So I get a lot of guilt trips from the kids about all the things I don't and I think they sometimes think "won't") do for or with them. My teenage son, until recently, accused me of "making it all up", "lying around doing nothing" etc.
I created some of this myself, by trying way too hard to "keep things normal" and "not worry them". Now I am learning to give what I can afford, and otherwise tell myself that if I overdo it in trying to be what they want, they won't have a mother at all, because I will be in hospital again.
They don't like this assertiveness, they've tried to manipulate me emotionally by talking about my "selfishness" and not caring about them, they give me disapproving looks and tell me "you've changed ..." - as though change is a bad thing and I’m no longer a caring parent. In return I’ve tried to tell them that the ideal in a relationship of any kind is for each person to assert their own boundaries and go after what they want, as equally as possible, and with constant negotiation.
It's a whole new world for me, having personal power of any kind. I wasn't allowed to have boundaries, as a child. As a 38-yr-old, I'm gradually forming and defending them. Takes a lot of doing, because if people are used to being able to trample over your boundaries and take all you have, they will resist it.
It's sad that our training (particularly for females) as toddlers, when we discovered No! and were trying to assert our boundaries, was that saying No! was impolite, not allowed, and that asking for what you wanted was "selfish" (actually a word which literally means concerned with the self, as we need so much to be).
[ Contents ]
It is certainly not paranoia to be concerned about your own day-to-day survival. When you are a worker, you have certain rights with your employer, which make it reasonably certain that you will be paid for work done. You have your professional and technical experience, which means that your actions and comments are respected.
On the other hand, as a patient with CFS/ME, unable to work, you are dependent on both doctors and insurance companies, and have no recognisable rights (a) to be paid or (b) to have your actions/comments respected. You meet with doubt and straight-out disbelief. It's very disconcerting.
My insurance cheque didn't arrive this month. Now, if personnel forgot to pay me (and they were good at that), at the worst I could borrow from them until they got the figures sorted out. I had done the work, and I would get the money. If someone didn't pay attention to my work or comments, I got support from my colleagues, and went through channels of communication (I did, really, although some of them might be considered unorthodox) to get my point across.
I rang up the insurance company today, and felt very anxious, because I know that they could decide, just like that, not to pay me, and I would have very little come-back. I paid my policy, and according to medical reports I am certainly very ill and unable to work, but depending on guidelines into which I have no input, I may be classified in some way, and lose my claim. I have certainly run across doctors who make snap judgements, which jeopardise my position.
I think what I'm trying to say is that we are much less powerful people now. We don't have earning power or rights to particular help, and we don't have credibility.
That's enough to make anyone anxious. It turned out that my insurance company had just somehow forgotten to post the cheque, but how anxious I felt, helped me understand how difficult it is to be so powerless. Before, when I needed money, I went out and worked for it. If I needed information or help, I went after it. Now, I can't do those things.
So I think someone in our position who wasn't anxious, would be unusual.
[ Contents ]
Nobody likes having to take medications - let alone pay for them. When I was last in hospital I had a disagreement with my specialist about diazepam, alias Valium. "I'm not taking that, I'm not a neurotic housewife, no way!" Doctor: "It's a muscle relaxant, your muscles [including fascia, I now realise] are very tense and we have to get your pain under control so you can sleep". He was right. 5 mg diazepam twice a day, muscles untensing, better sleep. Don't you hate it when other people are right? Though I suppose it's a good thing when your doctor knows what he's doing.
Antidepressants in general don't just address depression. Many of them combine with pain killers to improve pain coverage. Anyone with pain is dealing with pain and depression in a vicious circle: pain is depressing, and being depressed lowers your ability to cope with pain. Antidepressants are worth it for that alone. The ones that sedate a bit also help with sleep.
But without effective pain medications as well, taking that literally unbearable edge off, I cannot survive. I was on 2 Panadeine Forte, 4 times a day for a long time, and that meant going up and down (in pain and moods) four times a day. They are really best for occasional use.
My CFS specialist put me on Kapanol, which is slow-release morphine sulphate. I believe that one of the legal and admissible grounds for prescribing this and other so-called "dangerous drugs" is "severe and intractable pain, unmanageable otherwise, severely affecting the patient's quality of life" or something like that.
It takes a few days to build up to effective coverage, but then it covers the pain really efficiently (meaning it takes enough of the agony out of it, mostly) 24 hours a day, completely evenly. It has definitely been better pain control for me, but I am aware of the risks and side effects of taking any narcotics, especially long-term. And I can understand doctors being loath to prescribe narcotics, both from concern for their patient, and from fear of the government.
I used to be so worried about being dependent on morphine, although my specialist - who also works with addicts and knows a lot about it - has told me I personally will be OK. Supported withdrawal doesn't worry me. What really frightens me is the thought of something happening to my specialist, or whatever, and I'm helpless in the system, or in hospital, and some idiot decides just to cut the medication out, all at once, no doubt in my "best interests". I had it happen once before. It was the worst - absolutely the most soul-wrenching - nightmare. I could never have imagined anything that bad.
There are "natural" non-drug methods of dealing with pain. Being incredibly bloody-minded, not to mention emotionally frozen, for most of my life (now I'm just bloody-minded!), I kicked against all these things whenever the pain control people talked about them. Me, go inside myself to learn something, help myself? When was I ever into looking after myself, let alone at myself, waaay too scary, mate.
But I did get around to doing some digging, and you can find a lot of strength inside yourself (not just moths and stuff). It surprised me, how much relaxation, auto-hypnosis, yoga, or whatever you could do at the time, could help with pain control. Not to mention misery and panic in general, which can happen without even any physical pain. I recommend a set of yoga exercises, very gentle, which I picked up at my kids' karate class, the Motoyama exercises. They are great for joint pain, and for keeping the flow of energy more regular in your knotted up, half-paralysed body. Yoga breathing, in through the nose and out through the mouth, or in one nostril and out the other, is very calming and oxygenating.
[ Contents ]
One of the few possible "indicators" that have been identified for getting CFS, is a certain kind of personality. People who come down with CFS tend to be hard workers or high achievers, conscientious, responsible and productive - the sort of people who are the very foundation of our Western way of life.
And in the past decade or so, every government, every monetary system, has been demanding that the people who make up the structure, who pay the taxes and produce what is needed, do more with less. Much more with much less. And now lots of these people are getting sick.
Does anyone dare to think of the incredible wastage of material and personnel due to this illness? Of increasing numbers of people unable to produce, but refusing to die? It's worse than the Baby Boomers getting old, and having to be supported by the active and productive generation... because this is the active and productive generation that is getting ill. Seriously, lengthily and possibly incurably ill.
Nobody wants to know about this illness, because if the people who are the most flexible, who solve problems and deal with crises, who keep on going when things got tough, if those people fall to the disease, it’s too frightening. It's like trying to hold back the tide. You can’t control what you don't understand.
Nobody wants to know about this illness, because if they did it would mean that this could happen to them. The truth, like that of AIDS, is too frightening. I think until those in power can give "the people" some good news, such as preventative measures and massive research (as for AIDS), or some criterion which limits the disease to particular groups of people, no-one is going to want to know about us.
Everyone, even our loved ones, would find our situation easier to handle if we either died of our illness, or stabilised at some known and understood point, as a paraplegic might. The unknown is frightening. Diseases that seem to come from nowhere, and take away people's strength and independence, are frightening - the stuff of curses and plagues.
There's a lot of superstition that stands between the "healthy" and people who get sick and can't, or won't, get better. Ignorance; a perception that nearly everyone in the community is healthy and OK (seriously ill or disabled people being largely invisible); weird atavistic (perhaps) feelings of judgement (remember when AIDS only happened to "perverts"?); and above all, the fear of the unknown, the unseeable, something you can't get out there and fight.
Maybe too late, the people who can do things will realise that it's up to them to join us on the front line and face this illness wherever we can. Before it costs all of us more than we can afford.
[ Contents ]
My grandfather and his three brothers went off to the great adventure, the Great War. My grandfather was 15 at the time, and had only one lung. He got someone else to take the medical for him. Being a bloody-minded person by nature, and a boxer by training, he spent the ship journey over there, fighting anyone who was interested. Good practice, I imagine.
His brother Cecil died at Gallipoli. His brother Percy was in the fledgling RFC, survived being shot down and crocked up twice (no parachutes, remember) but the third time he died. His brother Alan survived the trenches in France, largely, he said (and there was independent evidence) by avoiding promotion, and by slugging an officer or going AWOL every time he was promoted. He had noticed that the bloke who said, "Follow me, boys!" never came back. He came back. My grandfather survived too. He took his M.A. and went bush to teach bush kids. Again, he said his boxing training was the most useful.
My grandmother survived him by over twenty years (no mean feat, he was a mean bugger by all accounts) until her death at the age of 96. At one stage the Victorian government granted all surviving WW1 widows (now there's a cheap effort!) a free travel pass on public transport. My grandmother, who had survived not only my grandfather but the Depression, insisted on travelling all over Victoria by bus and train, to anywhere at all, wherever it was possible. She was a lady of great spirit and determination. "I'll see them out yet," she said, "and I'll make sure I get my money's worth!"
She also went around the world in her "declining" years, and as a young girl went up with Kingsford Smith when he flew to Australia. She never had a sick day in her life, and told me she envied me my trips in ambulances, because she had never been in one. She was a small woman with a large bust, and told me the "flapper" fashions were hell, because you had to bind your breasts flat somehow. She showed me her grandmother's faded, copperplate-written recipe book, and tried to teach me to make flaky pastry.
I don't think there's much danger of us forgetting the people who taught us about courage. After all, where we are now, we need it so much.
My father had one abortive go at a Tandy TRX-80, I think, then swore off the medium, so I was very impressed recently when he said that he had read this (anyone who wrestles with Netscrape or Internet Exploder deserves a medal). Pete’s father has also recently launched out into computing and email. Dad said something about people of his age losing any credibility or respect, but you have to hand it to the post-WW1 generation, who have lived through, and are taking on and learning from, so much change since “The War to End All Wars”.
If you're out there, and you're thinking today: “I’m too old/dumb/useless to do X,” think of all the changes you’ve already taken on in your life, and best of all, think: “What the hell, it could be fun”. But I digress.
My father, while giving his usual generous appreciation of my writing, did point out that some of my details on his father’s and uncles’ war careers were skew-iff, not that they change the sense of the story, but I do apologize for my erratic memory. It turns out that both Percy and Alan survived Gallipoli before going to the trenches in France, and that one of the difficulties my grandfather encountered in trying to join the army was that he didn't have a trigger finger (that’s another story ;-). Apparently he “went up” in an air force biplane; composed as they were of sticks and fabric, it’s no surprise that he had to leave a deposit of £5, to bury him in case the joy flight failed to give satisfaction ...
I think in the end, people regret not so much the things they did, as the things they didn’t do.
[ Contents ]
Recently one of my children got into crisis, and I had to use energy I didn't have, trying to respond. Somehow, the thing that sticks in my mind - and I'm not all that visual - is that while I was driving through the darkening day, with a confused and scared child next to me, and the drugs and the illness complicating driving to a critical degree, and I was going into a bad situation, somehow right now what comes into mind is that somebody up there put on the most stupendous sunset for me to drive towards.
It was miraculous, great streaks and delicate featherings of living pink and orange, set off by the deadened black of the silhouetted trees and landscape. It brought tears to my eyes, tears of gratitude. Being alive might mean CFS, pain, debility and despair, but I can see sunsets like this.
When I was working, I never looked at the sky . . .
[ Contents ]
See Clytie's family photos (139k)
email Clytie at clytie@riverland.net.au
HOME Canberra FM/CFS Page [ Library Contents ]
Canberra Fibromyalgia and Chronic Fatigue Syndrome Page
http://www.masmith.inspired.net.au/
Moira A Smith - Canberra, Australia
last revised 12 February, 1998