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!