Posts by Julie Fairey
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Also I should have said when I mentioned losing fingerprints that it is totally untrue and you do NOT lose your fingerprints. Sorry, hope I didn't freak anyone out the way I freaked out when I read it all those years ago.
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As others have mentioned, I found getting a doctor who would make the diagnosis absolutely pivotal. At the time I started to get ill I was a student and had no GP. I was reliant on Student Health, where the doctors were variable, and I seemed to always, randomly, get this same woman who just thought I was lying about lots of stuff (like that I didn't drink, wasn't taking any drugs and was rather unlikely to be pregnant - sending me for tests for stuff that I was quite clear it was not possible for me to have, just not telling me that's what the tests were for, nice).
My mother-in-law recommended a woman doctor that she knew who turned out to be fantastic. She is still my GP now, a decade later, and even though I have to travel a bit to see her I will keep her for as long as I can because she knows what I've been through and she gets it. At my first visit with her she diagnosed depression and/or CFS. She was quite upfront about not knowing much about CFS, but she had a leaflet on it, which she gave me, and referred me straight to Rosamunde Vallings (iirc), who happened to be at a practice close by and was one of the NZ experts. That got me on the right path at an early stage.
While the internet was v helpful for contact with friends and feeling generally useful, it was a minefield of misinformation about CFS which I quickly gave up on. I stopped reading books about CFS (and depression) too because I would find once I'd read about a symptom I wasn't having I would often start getting it. I was terrified by the general information I saw several different places that I would lose my fingerprints. Somehow this just went to the core of me, it seemed such a loss of identity and self. After that I stopped reading stuff.
Like Lilith I found supplements, recommended by a chiropractor of all people, helpful. Co Q10 was one of the ones she put me on, which was a difficulty at $50 a bottle. I laugh now when I see it in an advert for face cream.
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Showers are hard! I would go days without washing my hair because I could not lift my hands that high. On the plus side it also meant I couldn't hang out the washing ;-)
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That's an interesting idea, about pregnancy offering a reset for some. My own experience tends to fall in line with the theory that for some with CFS it may be the result of a form of brain injury suffered during glandular fever. Maybe some of the preggy hormones did the final job of healing it?
The basic idea of this theory, if I remember correctly, is that for some people who have had glandular fever it does this thing to your brain that puts your immune system into hyper drive, kind of like sending Super Man every time someone doesn't contribute to an honesty box. This of course stuffs everything up. Your body acts sick when it is well, and then when you are actually sick it acts like you are on your death bed. That matches my experience, but I know that it manifests very differently in different people, and there are theories that CFS covers a bunch of stuff we can't tell apart yet (kind of like how "cancer" is actually a multitude of different kinds of tumours I guess? don't know much about medical science I must confess).
Once I was officially well, but still had to be v careful, I found that where someone else might need a day or two off work for a cold I would need a week or more. Once when I was travelling I was hospitalised with a v high fever and the doctors couldn't work out where the infection was. In hindsight it was still this extreme over-reaction, probably to a sinus infection from a cold.
While my pregnancy with my son started out with extreme morning sickness (lost a stone, went on for 12 weeks of unpredictable vomitting, etc) after that things improved.
I can look back to a point in time 10 years ago when we went on our first holiday together as a couple and I never even made it out of the campground we were staying in. The following time we visited I made it to the beach. The time after I climbed up a hill. Two years ago we went back with our son and I felt no particular physical weakness, although I was still breastfeeding him once a day. I think when you have CFS you have to look at your progress not day by day, or even month by month, but year by year. Even that timeframe may not be big enough for the many who are sick for decades.
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I too struggled with describing it. The closest I came was to say it was like feeling like you needed a lie down when you were already lying down. Just feeling so heavy that you couldn't get out of bed, despite weighing less than 60kg. For me the most frustrating part was having brain fog so bad that I couldn't even follow conversations on the telly.
I've been so lucky to be sick for such a short period - 3 years of intense sickness (and no FM, thank goodness) followed by a couple more years of general poor health. For some strange reason getting pregnant helped a lot. I've heard it does the reverse for others. The warning sign for me is eczema on my the index finger of my right hand - when that starts I know I gotta back off big time.
I lost friends during those three years. A med student who was always trying to diagnose me with something else, friends who relied on me to drive our social contact, people who gave up when I was too sick to follow-up their invites for a few months.
The internet and my partner and my parents saved me. The internet gave me new ways to keep in touch with people, and to do stuff on my terms (often in the middle of another night of insomnia, which seemed like a cruel cruel trick). I remember getting keyed up waiting for 8am so I could reasonably ring someone about something once, and another time getting a rare burst of energy at 3am that I spent by going to the 24 hour supermarket and doing the food shop. Email was a lifeline - I couldn't do phone conversations and I so rarely got to see people face to face.
I was so lucky to have the support of a partner who had the misfortune to start a relationship with me three months before diagnosis (i.e. as you outline, I was already sick when we got together just didn't know it). He's still around, and I'm still lucky.
Ok, I'm going to stop now. But thanks.
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Dylan, the only commonality I was proposing between Trotter's post on abortion and Lucia writing about the Haden stuff was that I wasn't reading either of them right now cos I don't want to get any angrier than I already am. Having not read either of them I can't really comment fairly on any comparison between the two, and it wasn't my intention to conflate them, beyond the personal impact reading them might have on me. It is All About Me sometimes after all! ;-)
However I did read (parts of) this stunner from PC's erstwhile stablemate Mr Lindsay Perigo, entitled Andy Haden - One of The Few Honest And Courageous Men In NZ Public Life.
I am intrigued by the possibility that within me somewhere is an internal chastity orb. I thought part of all this fixation on women having sex was about __discouraging__us from having foreign bodies inside us?
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Apparently sex is this thing I have, possibly in some kind of box.
Tupperware?
Definitely see-through, right?
Thank you Emma, I like your analogy a lot.
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Is "don't argue with these people, you'll just end up driven to drink" a new perspective?
Thing is, they came over to my place and started the fight. I'm not supposed to argue with them at my own blog?
I'm not going to read Lucia's post, just as I'm not going to read Chris Trotter's rant about abortion. I know that that way Bad Things lie. I'm very glad though that people have been debating with them in their homes, albeit I suspect that visitors from here to theirs will have been much better behaved, and much less deliberately offensive, than they have been at mine.
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Thank you for this post Russell. I've been having, or rather attempting to have, a v frustrating debate with a couple of the bloggers from NZ Conservative who have defended Haden on a post I wrote yesterday about the matter. I think we have basically got to a simmering rage-filled standstill, so new perspectives are most welcome.
As for Haden having the highest profile. Well he has in the last couple of months. Maybe all publicity is good publicity in the eyes of Deaker, even when it's racist, sexist and bringing rugby players and the game itself into disrepute.
(Sorry forgot about no html, fixed it now - J)
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Simon Prast has said he is apolitical and thinks the mayoralty should be apolitical. WTF? Sounds like he should put his hat in for CEO, not a position that is democratically elected and will have an incredibly politically important impact, especially given the relative power balance with Central Govt.