Playing catch-up.

Hectic few days. Will try to recap without leaving out anything interesting.

Tuesday was an out of the ordinary day. In a previous life, I was a hairdresser, of sorts, and I still do the occasional job for my best friend, who has her hair done special four times a year for a recurring social event. I went to bed on Monday night with no memory of arranging a session, and woke up to a text from said friend (we’ll call her Rae for the time being), saying she was on her way over with lunch. Cue panic.

I scooted round the house and picked up as much of the clutter as I could get away with (mostly Birdie’s DS games and my knitting and empty tea cups), and popped the kettle on. Bless her dearly, when Rae arrived, she headed straight for the kitchen, finished the tea, cleared a few sinkfuls of dishes for me, and announced she was making dinner when we were done. I do love her so. If she lived closer, I’d pay her in cuddles and beer tokens to be my live-in awesome person.

The hair took about 4 hours (with many many breaks), and I don’t mind admitting that I was a total wreck by the end of it, although I took consolation in the fact that it looked great, and I still have a gift for fiddling with knotted chunks of synthetic hair. I fell into bed before 10pm feeling like I’d been run over by a truck, twice. Which would’ve been fine, only on Wednesday…

… I had my first appointment with the CFS clinic at the (not very) local hospital. I got a very troubled night of sleep, which at least was predictable, and by 8am I was already ready to call it a day. Only problem being, the appointment wasn’t until 1pm. I struggled, I really did. I needed to leave 90 minutes travelling time, as even though the hospital is only about 50 minutes away, it takes me that much longer to get things done, and I really don’t like to rely on public transport, especially buses. I might have mentioned it before, but I hate buses. They hurt like being taped into a box with spikes on the inside and then thrown down a large hill. It wasn’t fun, not a single minute of it.

I’m not going to go into any depth about the appointment (try to hide your disappointment), since it was a bit of a wash really. I’m pretty sure it went well from the specialist’s perspective; I tick all their boxes, and I’m willing to try anything. But she didn’t tell me anything I didn’t already know, or recommend anything I haven’t already tried or ruled out for various reasons. At the end of the appointment, she wished me luck, and gave me a look that seemed to say: “We know it probably won’t work, but we have to try and so do you.” And she’s right. So I’m going to do another round of CBT, and give the graded exercise another stab, and see where it leads me.

To her credit, she was very understanding; She agreed with me about what triggered the CFS, commended me on my efforts to reduce my symptoms so far, and completely understood that expecting a single mother with severe financial and social problems to “reduce stress levels” was probably a self-propelling airborne porcine situation. But, at the end of the day, it’s one more person who’s offering support, so it should work out to be a good thing in the end, one way or another.

After the appointment, I sunk £15 I couldn’t afford on a taxi home, and then felt guilty for the rest of the day.

I’ve been keeping my head down since then. There’s familial drama on the horizon, just in time for me to spend 10 days at my mother’s over the Easter break. It won’t be a holiday by any stretch of the imagination, and when it’s done, I’ll only have a few days to myself to regain composure before being thrown into Birdie’s last term in primary school, and all the associated nonsense.

The neighbours are at it again tonight with the boombox and the retard with the microphone, and I barely have the will to kick up a fuss. I’ve lodged another complaint with environmental health, made sure the cat is indoors and turned all the lights off. I’m done being a concerned citizen. For this week at least.

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~ by surprisingme on April 2, 2010.

5 Responses to “Playing catch-up.”

  1. Hello,
    I’m no longer under any sort of care for my Chronic Fatigue Syndrome. While I was, the only thing I was offered was CBT, which at the time I went into with an open mind. Retrospectively I feel let down, because that’s ALL they offered me. While the therapist was very nice, and was keen to stress in the early sessions that CBT wasn’t counselling, I still fail to see the difference between counselling and my experience of CBT.

    • I’ve been in and out of various forms of headshrinking since about 1989, so I’m taking it all with a pinch of salt. I really don’t think it’ll show me anything I don’t already know, but it gives me something to do, so at least there’s that!

  2. I think the main benefit of CBT (from what I’ve heard) is helping you develop realistic expectations and learn your limitations.

    Please be super cautious with graded exercise! The studies on it show it often does more harm than good. I’ve heard a better approach is a graded ACTIVITY program, with one of the activities being mild exercise. Gentle stretching … pilates or yoga … nothing aerobic! Keep your heart rate down.

    The only thing that has ever really helped me is pacing. Of all the recovery stories I’ve heard, the one thing they all have in common is pacing. Here’s a good article on pacing, if you don’t know much about it: http://www.chronic-fatigue-community.com/chronic-fatigue-pacing.html

    Good luck with your Easter break. If it were me, and I was facing that kind of stress, I’d skip it. Hopefully, you’ve weighed the situation carefully, and there is more emotional good to come from the visit than stress. I’m sending you positive energy to help!

    Take care, you deserve it!

    • To be honest, I don’t really have a choice regarding the familial visit. It’s a small mercy that I’ve been allowed a few days to myself at the end of the whole thing. It’s a long, complicated story.

      I’ve done a short course of CBT before, and I have to be honest, I didn’t get a whole lot out of it, but I’m willing to give it another go because it didn’t do any harm, and maybe I didn’t do it right or something. As far as the graded exercise goes, I’ll be taking that at my own pace, as I’ve seen the damage it can do first hand (my mother struggled with it for two years before the physiotherapist told her to knock it off).

  3. Hi –

    I;m still trying to catch up on blogs after a 10-day vacation…still far behind!

    Sorry to hear you had such an exhausting week last week, and I hope your family visit went well, though I know how exhausting those are for those of us with CFS/ME.

    I cringe whenever I read about a UK person’s visit to a doctor for ME. CBT and GED are NOT treatments, and GED is likely to make things worse. It sounds like you already know that, but I had to say it!

    You mention on-going sleep problems. That IS a part of ME that respoonds very well to treatment. Have I already mentioned this to you? Pardon me if I;m repeating. I wrote a blog post about treating sleep dysfunction:

    http://livewithcfs.blogspot.com/2009/09/treating-cfs-sleep-dysfunction.html

    That post includes links to two excellent articles written by CFS experts – print them and take them to your next doctor visit. It takes some trial and error but when you find the right medications and right doses for you, it helps so much! Getting good sleep makes everything better.

    Hope you’re resting up from your trip and feeling better soon –

    Sue

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