Sunday, September 30, 2007

Give me your opinions....

WARNING! Long winded and possibly depressing post follows… if you can't bring yourself to read it, please go straight to the poll on the right, just below my profile and let me know what you think! Thank-you!

Well I am home from my holiday and it was really lovely to have the chance to relax and not to feel that there were literally dozens of “things” that needed to be done. I made it to "Books 07" and will be posting some thoughts about that a little later.

One of the scary things about holidays is that I always seem to spend some of the time doing a “life review”. I suspect this habit was developed in my early 20s when holidays were often spent with a dear friend. Her partner commented that we spent the whole time “dilemma-izing”, but really we enjoyed indulging in some cooperative navel-gazing, discussing plans for our careers, for travel, buying houses, whatever came up really. In those days I guess things were going in the right direction and it was pleasant to rake over it all and daydream of our successful futures, and how we might attain them!

Life is a little different now some 20 years later, and this type of “navel-gazing” can be a risky business. I have been thinking that I really need to diarize more fully my experience of living with CFS. The reason for this is that although I have been ill for over 16 years, I really feel that I still have not come to terms with the fact that I am a person living with a chronic illness, for which there is no known cure. Well, I accept that as a fact, but what are the consequences of that?

Of course, I have accepted it on some levels. I gave up work. That was forced on me very early in the piece. I applied for and was granted a Disability Pension. That was difficult psychologically and certainly seemed to be a step towards acceptance, outwardly at any rate. I have become much better at judging my limits and not over-committing myself as I hate letting people down. I have found a supportive doctor and other health professionals and I am “a good patient”, in that I follow their advice for the most part, and am diligent about taking my medications.

All these things are small details really and that’s why I can do them without necessarily coming to the natural conclusion that my prospects are severely limited. I suspect it was always the case, because I’ve always been a perfectionist, that I have become a “small detail” person. It’s not that I don’t set long-term goals, I do. (Perhaps even too long - when I first left uni I had a 10 year plan for my career as an occupational therapist!) However, I have to ask, are the goals realistic? I suspect they are not and even worse, that I am setting myself up to fail and making my day to day life much harder and more stressful than it needs to be.

Of course, there is a benefit in setting these sorts of goals even if they are unattainable – it gives me worries which equate more with the sort of concerns my friends have and keeps me from having to face the real issues of accepting and adapting to my CFS.

As I look at the sentence I have just written, I have to admit that this is a recurring pattern in my family. Even those of us who do more than bury our heads in the sand when faced with a reality we don’t like, often seem to get busy solving a tangential or associated problem, rather than attacking the core issue.

For a long time, while realizing that it was unlikely that I would recover completely, I always “hoped” I might get quite a lot better. Well enough to work part-time (and I don’t mean a couple of hours a week) and have a successful career, pretty much on terms of my own choosing.

In some ways this is understandable. After all, I have always wanted to be successful in a career. I saw it as the mark of my worth. I never dreamed of having children, a family. Being brought up almost as an only child (my brother and sister were married and left home before I was 7 years old) I didn’t experience a family as such – there was always just the triad of my mother, my father and me. And I think I was a bit like the pet who doesn’t realize he isn’t a person, I didn’t really think of myself as a child. So children never came into my calculations of my future.

A career however, was something which was always highly regarded, and as a child growing up in the 70s, the era of feminism, and doing quite well at school, a career was, well, a given. Issues with perfectionism and low self-esteem only made success in a career all the more necessary.

As well as my need for a career, I have to say that for a long time, the hope of a recovery was peddled to me. In fact, I don’t think any health professional has ever said those words: “you might never recover” to me. A lot of professionals talk about their previous successes with patients with CFS and the wackier they are, the more they shift the blame to you when you don’t recover, but that is another issue entirely….

So…I have spent a number of years studying for what I hoped would be my new life. However, over the past four or five years, the consequences of having a serious medical condition for over a decade have had an increasing toll and I have started developing other conditions actually caused by the damage the chronic infection is doing – first hypothyroidism and then diabetes insipidus (DI).

Despite the correction of my thyroxine levels to “the normal range”, my energy levels have never recovered to the place I was in prior the onset of hypothyroidism, 5 years ago. As for the DI, that has taken quite a while to understand and get under control (nearly a year) and I suspect that it will only add to factors which can be so easily knocked out of their uneasy equilibrium.

This has been a very long post, and if you have made it this far and not fallen asleep I’ll be greatly surprised! But if you will bear with me a little longer, I’d like to ask your opinion/s on whether I should include this sort of post in this blog? I believe I could benefit from the input of others dealing with similar issues, so I’d like to put them in a blog, rather than in a private journal. The question is as regular visitors, would you rather this sort of post was coralled in a separate blog, so that you don’t come upon it when you were just checking back to see how my artists book is going, or whatever…

Anyway there is a poll over on the right, just under my profile, so if you would be kind enough to give me your thoughts on this before you go…I’ll shut up!


  1. Well this is a truly fascinating and worthwhile post and I, for one, am really pleased that you put it down on'paper/screen'.

    You sum up the dilemna of chronic illness and some sort of recovery very well.

    In the early stages one is so ill that all one can think about is getting through the next moment. If you're lucky and, maybe too if you're a 'good patient', you may come to a place where you begin to have some sort of life: not the same as before but some life. Being alive is enjoying the now but also looking forward, making plans, dreaming dreams, having something to work towards. That being so I don't think you're at all wrong to have set yourself goals and then tried to have pursued them.

    When the Masters is over you may well have some sort of new career. It may not be the sort you originally envisaged and may not be the one other students on your course are able to pursue but if you stay aware and inquisitive, as you are, then some opportunity will present itself and you will be able to take it in if you wish.

    You know that we have many things in common: the OT'ing, the switch to Art, the constant juggling of a chronic illness and trying to maintain some sort of creativity. In addition I am an only child --a 'real' one ;-)) ---. I always wanted children and, for me they are the best creation I have ever been involved with, but I never wanted siblings. I was part of a very happy triad. Part of the drawback, however, is that only's often grow up with a sense of responsibility for their parents ---as if the three are all adults together and that seems to seep in to every aspect of life after childhood: a feeling of responsibility for making things better for other people.

    What I think I am learning (and I've been diagnosed for 7 years nwo but ill much longer) is that you cannot rely on any therapy/cure/whatever to make you well again. You are as you are NOW. You/we have had a new way of being in the world foisted upon you/us. That means that everything else is in thrall to that new way and if you want to maintain remnants of the old life it usually will not be possible to do so in the old way. You have to find a new way and accept that that way is not inferior --- just new and different.

    Given this way of understanding a life with chronic illness, it means that, however abhorrent, the illness and its repercussions are integral to your day to day existence and your creativity: it will leave its mark no matter what you do. So, if you are writing a blog and you want it to reflect your life you must mention your illness in a way which reflects your day to day other words it will crop up 'as and when' and that means I think you should carry on as you have been doing.

    The blog is fine as it is and the balance of writing about illness, other evryday stuff and creativity is fine.

    Upward and onward !!!!!!!!!!!!

  2. Thank-you cusp, for your thoughtful response. You have reminded me of some insights that I had forgotten. I guess the most important one is the "one day at a time" thing, which you summed up so well in "You are as you are NOW".

    As a goal-setter and a planner, this has never come naturally to me. The thing I find tricky about chronic illness is the whole question of short term pain for long term gain. It just doesn't apply, because it is quite unlikely that you will be able to capitalize on the long term gain. The whole of society seems to be hell-bent on working so hard for some "long term gain", and with my well-entrenched protestant work ethic, I find it incredibly difficult not to jump on this bandwagon, even as it whizzes past me at speed!! I do TRY to focus on the now, but am often unsuccessful.

    I have just re-read what I have written and have realized that perhaps short-term pain for a PWCFS is actually DOING NOTHING!!!OMG! That is painful! AND it usually does provide long-term gain...maybe I can be on the bandwagon after all, it's just that the "work" of being ill is quite different! Hm, interesting! I'll have to give this some more thought.

  3. Amanda, your struggles, of whatever kind, are part of what makes you the person you are. Your struggles with your illness affect all aspects of your life, including your art. As such, I welcome seeing posts about how you deal with your illness, to the extent that you feel comfortable writing about it in a public forum (as you must, or you wouldn't have written this one.

    And if doing so offers you support from others dealing with the same issues, or simply from others who care to reach out, all the better.


  4. I often think about this too Amanda, it's really a personal choice and one that you should make but I do agree with cusp and bookgirl's comments, so I wont add anymore as I feel that they both have made valuable comments.
    In my opinion, you should keep your blog just the way it is.

  5. I like this sort of post, it's nice to feel that I'm not alone as an artist with CFS. I also think there needs to be more understanding of the issues of long term illness and what it's like having to face up to the idea that you might never recover. My experience with CFS is that acceptance and understanding comes in stages and it often feels as though I'm constantly having to relearn stuff ("ooh, pacing AGAIN?")

    "the more they shift the blame to you when you don’t recover"

    Arg, this one drives me nuts too. I stopped going to one reflexologist because she was giving off this subtle 'I can't understand why you're not better yet, are you sure you're really ill?' vibe. Finding people who genuinely
    understand is crucial - my current massage therapist is amazing, she really supports the idea of recovery but constantly encourages me to accept that it's going to be a long, slow road and that I need to be gentle with myself.

  6. Anonymous11:12 AM

    Hi Amanda,
    Its important to introduce mainstream folk to the idea that life wont always allow you to move along at a pace dictated by an accepted social formula. Like working out the depth of field in a photo, the focus needs to be tweeked.
    Soo good one and post away.