In my first post I mentioned that I had been dealing with a number of health issues for the past....ooh 10 years I suppose. While some of the conditions I've been dealing with have been life threatening, it's Chronic Fatigue Syndrome that has had the biggest impact on my life. As my health has continued to improve these past 3 months or so, I'm finding it increasingly difficult to remember just what it was like to live with fatigue. Having the flu has triggered my memory and I thought I'd get it down before I start to forget again.
I was diagnosed with CFS in 2001 after a long time of struggling with fatigue, brain fog, and a host of other transient and seemingly unrelated symptoms. Before my diagnosis I'd heard very little about CFS and was not sure if it was really even real. It took quite awhile to be diagnosed as I was already dealing with the physical effects of a mosquito borne disease and a pair of auto-immune diseases. Both of these can also create the symptoms that I was experiencing. When I talk about fatigue I don't mean really, really tired due to being overly busy or from having performed some marvelous feat of physical endurance. I mean fatigue, debilitating fatigue that doesn't go away no matter how much you rest or how little you do. I'd go for months and not be able to stand up in the shower because it took too much out of me. I would shake, get heart palpitations and sleep like the dead for 3-4 hours after bathing because it took so much out of me. Sometimes I couldn't get myself off the toilet I was so tired and weak (thankfully I always got there in the first place!). The worst was when I couldn't unscrew the lid on the milk bottle. I'd have to wait for my neighbour to come down to check his mail so he could open it or even worse, I'd have to wait until Jeff came home from work. Imagine not even being able to make a cup of tea for yourself (I obviously have milk in my tea :)).
The level of fatigue that I am talking about impacts every little aspect of your life. Holding a conversation with someone is exhausting and can leave you 'bottomed out' for days on end. Doing the housework, driving the car, doing the grocery shopping, preparing meals, having a life all become a HUGE struggle. Some days I would be so tired that I wouldn't even bathe because all that is involved took energy that I simply did not have. When you are healthy you don't think about the energy involved in simple acts like bathing. You need to go to the bedroom and get fresh clothes then head to the bathroom. Then you need to take your current clothing off - this requires lifting your arms above your head and bending down - these require more energy. Then you need to get in the shower and do more of the arms up, arms down business = more energy. My God, then you have to get out and use a towel which by this time feels as heavy as lead to your fatigued muscles. Finally you need to get dressed which requires bending up and down, lifting legs, fastening zips, buttons etc. Let me tell you on some days it is just impossible to do.
Being so exhausted and having such little things total you effects you in a number of ways. I found I lost all spontaneity. Being spontaneous requires energy and that was something I obviously didn't have. I found that I had to plan everything and to micromanage my life in order to get the most out of what energy I had. Life becomes an endless stream of compromises e.g. cook a healthy dinner or be able to take a shower; talk to a friend on the phone or pay the bills that are waiting. You rarely have energy to do both. Something as normal and as simple as going for coffee with girlfriends becomes overwhelmingly impossible on some days and always resulted in days of being totally wiped out and unable to do anything but sleep. As a result you become socially isolated and disconnected from the things that you once enjoyed doing. I love to paint, draw, sew and do a variety of crafts but I was able to do very little and had to learn to do things in 5 minutes sessions, sometimes less.
All of this sleeping and lying around on the couch watching DVD's of course contributed to my weight gain. How do you exercise when you can't even bathe? Having come from an active background I knew how important exercise is to maintaining health and as part of the recovery process. No matter how tired I was I tried to do something every day - this needed a huge adjustment in thinking and I needed to redefine my idea of what exercise was. Previously I'd walk for an hour or swim or cycle. Now a walk consisted of trying to get out to the mailbox and back or to make it to my back fence. Weight lifting turned into doing 1 or 2 moves but minus the weights - just taking my muscles through the range of motion. Stretches were given to me by the physio and were done in bed. Exercise was only done on 'good days' and I needed to learn to see any movement and any ability to string together consecutive days of movement as a huge success.
As I learned to manage my life and home more effectively (thank you Flylady) I became better at managing my energy. I wasn't always successful of course. I'd get excited on a good day and do too much which would send me back to bed. I'd have crashes (where energy bottoms out very badly) at unexpected times and for no apparent reason. But I persevered and kept my mind focused on the good in my life. I think one of the most beneficial things I did for myself was making myself have forced rest every day between 12 and 3 whether I felt I needed it or not. This helped my body to build up some reserves and my new respect for energy made me use these reserves wisely.
I've found a pretty good description of what I'm talking about at Spoon theory. Check out the link, it's a fantastic description to help you understand anyone dealing with a serious illness, not just chronic fatigue.
Fatigue is a significant barrier to well being and weight control. But through trial and error, perseverance and the passing of time I am starting to win the battle.
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