NEVER…in a million years!

October 23, 2012 § 13 Comments

Flowers from my garden, that I used to be able to tend, but haven’t for the last year…Next year I WILL be able to

When I was in the hospital the other day, I was looking around at all the obviously ill people, and I thought, dear god I would

NEVER IN A MILLION YEARS

have thought I’d become one of them, one of those ill people, people who look ill and weak, who hobble along because they are in pain, or have weakened muscles, or have tubes coming out of their noses, etc.

But I have, I’m one of those ‘ill people’ you see on hospital visits: Sometimes the whole horrible episode just HITS  you!

Then, the other morning, just for a couple of hours, I could almost taste better. It was like a brief glimpse at what I was, before…this ‘thing’ hit me, this alien thing, this disease, this interloper. It is not me, it is not who I am, but it feels sometimes that I am becoming it.

I have had symptoms for almost a year now and been very unwell since late April, which seems such a long time, but now I’m ready for better please.

Bring it on, enough is enough.

…Watch out non sickos…if it can happen to me, non smoker, fit and healthy, 30 years vegetarian…it can happen to you

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The workers united will never be defeated

October 11, 2012 § 13 Comments

I so wanted to do a blog post today on my Moon Face but I went to work and the floodgates opened.

I’m have hated not being able to work. I did no work at all for about 2 months – which when you consider I’ve not taken more than a few days off at a time and rarely even that, for over 5 years, is a big shock for my system (some may say it’s that kind of work intensity that has seen me end up where I am…I can’t really argue with that). Mind you, I was so ill during those 2 months, that I really didn’t notice it much as I just slept a lot.

But as I’ve increased my stamina and the drugs have worked their magic on me, I’ve wanted to return to work, not just for my own sanity and because I enjoy my job, but also because other people in the micro company I work for, have had to cover for me and that, I feel uncomfortable about – even though they are wonderful and would NEVER say anything about it.

In the last few weeks I’ve worked up from doing a couple of hours here and there, to more hours per day and then today, the floodgates opened and I had to deal with various  issues and concerns and management type problems and I’ve spent hours on the phone and sorting things out. I am UTTERLY exhausted and sore and I feel physically sick. Im not sure how I am doing this post, other than running on some sort of adrenalin, which I’ll pay for tomorrow.

Saying that, I do have a sense of achievement and almost satisfaction. But it scares me, really scares me, that I won’t be able to handle things consistently and will end up having a crash, or worse my disease will flare up – stress being a factor in flare ups. My consultant wanted me not to do this, yet here I am doing it, back to the bad old ways. Another worry is that others will not understand the complexity of this disease (dermatomyositis) and will think I’m fully better, like after a bout of flu or something, and their expectations will, as evidenced today, draw me into the full on, hard core, world of work. I’m afraid, very, very afraid, once you’re on this ride, it’s hard to stop it again.

Why do we make ourselves work when we clearly aren’t well enough. I know I’m not alone in this as Suz does the same thing. It’s dangerous and very stupid, yet I know, If I am able to and haven’t crashed, that I’ll be back at my desk tomorrow. I do have a sneaking feeling that it’s made worse by being a female in a male orientated industry. Oh, I didn’t mention what I do. I work in product development, specifically product strategy and futures and it’s my job to understand where our products need to be, by analysing the requirements and expectations of people like yourself reading this blog. As a woman in this industry I always feel I need to prove myself, therein lies, most likely, the core problem. But thats another long and arduous story.

Fortunately, my desk is in my home, but the stress is just as bad here as in an office I can assure you. I’ll try to rest now, tomorrow hopefully I won’t crash and maybe my stamina will hold out.

After all…the workers united will never be defeated!

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