Posts by Julie Fairey
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Have second child arriving approx 6 weeks from now and I have to say Ben you are not selling it to me.
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Snap on the walking across rooms to turn off alarm clocks in my sleep. I can still do it, I've discovered in the last few weeks but I think that's late pregnancy rather than CFS. Once when I was sick I answered my phone, had a brief phone conversation and hung up without waking up. It was v surreal for the caller apparently. I had no recollection at all.
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I think I probably was sick when we were in the same space/time George, but my memory of those years, and the years beforehand, are pretty patchy in parts. I was diagnosed mid 2000 and pretty sick from then until about 2004 when I started to really come out of it enough to work full time. Since then my health has improved a lot, with the odd set backs which have mercifully got shorter and less severe. Now I think I'm probably as well as I can get, which is no where near the level I could operate at before but then that was frantic and if I hadn't got sick with CFS it probably would have been something else that snapped.
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My escape plan was basically always ensuring I had enough money to catch a taxi home (or to my parents or to the hotel I was staying at). I spent the extra and stayed in a hotel when friends were in backpackers or at mates' places most of the time because wherever I went I knew I needed a room I could just crash in if necessary.
I also would buy myself some really lovely pjs as a treat whenever I was in need of a treat. Sussan is good for medium priced ones w lots of different designs.
Of course all three of these things rely on having sufficient income to do this. I had the good luck to have enough.
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Yes! Yes! What Ngaire said about pants!! Sounds like we had quite similar experiences in general.
I would have incredibly vivid dreams and be unable to tell whether they were real or not. Not the end of the world when I dreamt I'd had a conversation with someone about something and got confused when they had no recollection. Bit trickier when I dreamt my partner was cheating on me, or that there was someone in the house about to attack me.
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This:
Also, exhaustion and brain-fog does not lead to clear decisivie defiant thinking.
I remember having many discussions with my partner where he was totally bamboozled by my thinking processes and how I had got from here to there. Looking back now I can see it was the effect of the brain-fog, and the depression I had at the same time. I found doing some counselling focused on that very helpful (and still do). I'm not entirely sure what I did was CBT, but it may have been. It basically gave me the ability to assess my thoughts more objectively, so I could tell when it was the disease(s) talking, rather than my true thoughts. I'm not explaining it v well, sorry.
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What helped me:
1. Good luck, by way of:
- supportive doctor who knew her limits and referred me to an expert
- supportive partner, family and friends
- having financial support independent of the benefit system (I'm sure I would have been sicker and likely would still be sick had I had to deal with the Sickness Benefit hoops and/or not had the family financial support to cover whatever health stuff I needed eg special diet things, supplements, chiropractor)
- getting an early diagnosis
- being able to focus on getting well (no kids, parents and partner well, able to quit work & study etc)
2. Day to day stuff:
- lots of sleep
- avoiding physical exertion and accepting I just couldn't leave the house somedays
- using the Internet to keep in touch with friends and the broader world - this was before FB but that would have been great
- trying to keep my body clock roughly in sync with the ordinary world - the worst times were when I could only be awake in the middle of the night
- chiropractic care
- counselling for dealing with the depression element
- measuring progress by large timeframes (months, years)
- keeping supportive people close, and being quite ruthless about cutting out people who were draining
- the NZ book called iirc Understanding Chronic Fatigue (yellowy cover, came out early 2000s)
- having a warm comfy bed in a room which was dry and a lovely dressing gown -
The advice thing is something I get particularly tetchy about when I'm pregnant. Especially when the advice is along the lines of "you shouldn't get so stressed" or "calm down", or, in one memorable case, "chillax." Has anyone who is genuinely upset about something ever felt better for someone saying to them "chillax"? Particularly when it is framed as "chillax, you need to think of the baby." Because it would be ok for me to be stressed and upset if I wasn't pregnant would it? Maybe I could just be happy and relaxed for the benefit of me, myself and I?
Ahem.
I read in a Kaz Cooke book once that when someone gives you advice it is often more about them than it is about you. I find that quite soothing.
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In terms of the genetic issues, my mother's family has some immune stuff going on. I can't remember the name of it but my mother and her father both had a specific gene thingy (anti-trypsin or something like that?) which if present gives a much higher probability of developing a number of conditions given exacerbating environmental factors. I'm a bit foggy tonight but the one I can recall is v high chance of getting cirrhosis of the liver if much alcoholic consumption. I didn't know this until quite recently, and v fortuitously never really started drinking. Phew! I think rheumatoid arthritis is another illness more likely with this gene. My grandfather had that and his form of self-medication meant he got cirrhosis too. There's a test, which Mum had had, but I'm not sure.
So it's a complex weave, these bodies of ours and how they work. Parts of the pattern we can't even see yet, but our grandchildren will spot clearly and be amazed we missed. -
On the positive thinking lark - I agree with others who have said it doesn't seem to work. My own health experiences, and the sudden death of my father only 2 weeks after diagnosis with what looked to be a curable cancer, back that up. Dad was so positive (although I'm sure he was also v scared) that the last thing he did before going into the surgery he never woke up from was to tell the surgeon a slightly dirty joke.
The other stuff about cancer in particular which soundly pisses me off is all the battle talk. As if if you die you didn't fight hard enough or you weren't a good enough soldier whatever that means. I heard some stuff on the radio recently (no link sorry) that showed that the biggest indicators for survival from cancer were what type of cancer, and how early it was treated. In other words: largely luck (at an individual level, there are of course systems that a society can put in place to eg increase early detection of certain types of cancer, make sure there is capacity to start treatments asap etc. )
I'm pretty sure we're past the exercise derailment now. Which is a relief - I composed a long rant about it in my head this morning, which is now, I hope, unnecessary, which is just as well cos I could do with a lie down instead ;)