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    • Eddieb

      Anyone else here living with it?

      I've just past my 6 year anniversary and am probably a lot better than some, but nowhere near where I used to be before it.

    • Chris
      Chris MacAskill

      Oh man, Eddie, I'm really sorry to hear this. Did it start with a viral infection? What are your symptoms?

      I had a sister who battled it for more than 20 years. I don't think we ever understood how she came to have it or the best way to minimize its effects. She lived next door to the NIH and they made a case study of her, but we had no way to tell if what they were doing was effective.

    • Eddieb

      We can trace my beginning to a particular weekend where I led a bunch of riders on a 4 day relatively intensive (Motorcycle) ride, 10 hour riding days with no more than 30km of seal per day and some fairly lumpy riding off seal. I got home feeling pretty wiped out after all the riding and not much sleep but didn't think much of it.
      The following weekend, feeling a bit better but still not great I attempted to do the same 22km abandoned railway pushbike ride I'd cycled the weekend before the motorcycle ride, and where I hadn't broken a sweat. This time however I got 2km in and passed out on the track. After almost an hours rest I only got back to the car because the 2km had been up a 1:30 incline, just enough to coast back down again. Another half an hours rest in the car and I was just able to drive the 20 minutes home where I went to bed and pretty much stayed there for months.

      After a million tests for everything under the sun, including bloods and things like ENT, brain stem, Vestibular balance issues using false ground and horizons and MRI's, all of which I passed with flying colours I was eventually diagnosed by New Zealands' only recognised CFS expert, Ros Vallings.

      After 6 years I am still light headed to some degree 90% of the time and get moments of movement induced vertigo at least once if not 3 or 4 times daily, particularly from moving my head up and down, plus the usual extreme lack of energy CFS is known for.

      I can function at a basic daily level though am still wiped out at the end of each day but even 2 minutes of even very mild exertion can render me bedridden for days. I still hold down a full time IT Analyst role though my employer has been very supportive over the years and given me a lot of leeway around when and where I do the work. At the start I couldn't work at all for well over a month and after that it was 2 hours a week , then 2 hours a day working from home for quite a while. I think I was also lucky that I was fairly fit at the time so that may have helped my recovery at the beginning. If I'd been in some sort of physically active role like a labourer/plumber/electrician I'd have been unemployable for the past 6 years, and still would be.

      Fortunately I find road riding very subconscious and natural so I can still do a decent road ride but the next few days I'll be pretty worn out and not good for much, any 'adventure' riding beyond a smooth gravel road is basically out. On Saturday I started giving the DR650 a big birthday so took the tank off, pulled the plugs and did some re jetting of the carb and after that I was couch bound Saturday afternoon and all of Sunday. Doing the chain and sprockets, oil and filter and fork oil will have to wait for other times I have some energy and nothing else scheduled that I have to ration my energy for.

      The only way to manage it really is to take care of yourself with what you eat and when/how you sleep, be aware of what your capabilities and triggers are and sometimes decide whether the activity you would like to do is worth the impact it will have on you over the next day/week(s). For me a good ride is worth the week of not being able to do much afterwards.

      I also find for me it's a bit of a case of use it or lose it regarding the energy, while a walk for pleasure may exhaust me for days I find if I am not active to some degree regularly my ability to be active diminishes fairly quickly.

    • Chris
      Chris MacAskill

      Ugh, that's so awful and sounds really serious. Only a few minutes of exertion can leave you bedridden for days? I can't imagine what that would be like. I got mono as a 20-something and was pretty tired for half a year, but nothing like this.

      My older sister, however, had bouts like that. She would join us on trip by flying in and getting a hotel room, and then be down and miserable for days. 😢

    • Eddieb

      It's certainly changed my lifestyle in a big way as I used to be pretty active, mountain biking twice a week, walking a minimum of 5km over lunch time every weekday etc.

      It has meant the cross outback Australia ride I was planning didn't and won't happen and riding through Vietnam might not but at least I can still do day to day things and have some quality of life. Some people are bedridden for 20 years or more.

    • Eddieb

      Drove 2 hours to a beach Saturday and chilled out there for the afternoon and evening. Sunday morning drove home again and was in bed by 2pm. Monday I had to leave work 2 hours early and was straight to bed.

    You've been invited!