Tuesday, 12 May 2015

Chronic Fatigue Syndrome--7 Things I am Tired of

I am a sufferer of Chronic Fatigue Syndrome, one of over 400 000 Canadians, yet in this day and age of awareness, many of us suffer in silence, disbelief, or confusion. To be quite honest, I am 'tired' of that. I am tired of a lot of things actually. Take the name, for example--Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome/Myalgic Encephalomyelitis/Systemic Exertional Intolerance Disease--I am already 'tired' of writing that. Hereafter, it will be referred to as the BEAST. So today, being International ME/CFS & FM awareness day, I thought I'd drop a #May12BlogBomb and take some time to let you know a little about what it's like to live with this condition. And the best way I can think to do that is this list...

Chronic Fatigue Syndrome--7 Things I am 'tired' of...

1. I'm tired of lying-- Do you/Have you had a debilitating, chronic, medical or otherwise condition that you lie about? I do, and I'm tired of that. Of course this is my own choice, and these are almost entirely lies of omission in that I simply choose not to share the details/existence of my condition with people, but read on!! Perhaps you will understand why...

2. I'm tired of the lack of medical and personal support--Medical support. Pfft (farting noise).... that's all I have to say about that. As for personal support, there is no shortage of wonderful and supportive people around me, some who know, some who don't, but there's this...To look at me, you would never know there was a damn thing wrong with me. People who suffer from this condition are often at the mercy of 'good days' and 'bad days', and our physical appearance generally won't belie what today is, so the only way to let our support people to know how we are feeling is to complain. Isn't that awesome? But, I say this humbly, I am not doing this to be whiny, I do this because, on the 'bad days', I need a lot of understanding and sometimes a little help, the same way anyone else with a chronic illness would. There are a number of people in my life who on random occasions ask how I am doing, and I am SO thankful for the special occasion where I am just answering a question rather than complaining.

3. I'm tired of people saying, “Everybody is tired”--OOOOOooo, this gets me more than anything. I was a mom for four years before I got this illness... I knew tired. But this is not that. Try this. Find the heaviest comforter in your house, douse it with a fire hose until it soaks up every possible drop, drape it over your head taking care to obscure your vision somewhat, and carry on. If you're feeling particularly ambitious, take three kids swimming. Then sleep 12 hours and repeat, and then sleep another 10 hours and repeat again, then take 4 naps and do it again and again and again and again.

4. I'm tired of people suggesting that I am depressed, anxious, etc--I am not a person who lives in the dark ages of not acknowledging the existence of mental illness. I am well acquainted with it actually. Mainly this annoys me because if it were one of these things, I would happily pursue treatment, and, though illnesses such as these may overlap with the BEAST, they are not one in the same. Spare me this suggestion, and the next time you tell me you have lung cancer, I promise I will not tell you that you have bronchitis and should treat it with antibiotics.

5. I'm tired of the lack of scientific evidence/research--Google anything. Google ANYTHING. And you will get a world of answers, and, in the case of medical conditions, the top 5 reputable sites will all tell you similar things. Google this condition? Your head will spin. From diagnostics to symptomology to treatment to its very existence, the cohesiveness of information is shocking. Also, good luck in your search because they can't even agree on name for the BEAST, and that is just the beginning of what 'they' can't agree on. So if they can't agree on it, it must be all in my head right?? WRONG.

A little rant on this point...I don't exactly know what it is about the BEAST that so confounds scientific/medical communities. Is it the broad range of experience from sufferer to sufferer? Because surely no two cases of breast cancer or MS are same. Is it the lack of response to conventional (and unconventional) treatment? Because this is not the first untreatable illness. Is it the lack of known cause? Because there is no known cause for the continued success of Maroon 5. Still real. But I digress...

6. I'm tired of being tired--'Nuf said.

7. I'm tired of negotiating with the BEAST--When you have Chronic Fatigue Syndrome, you are in a CONSTANT game of negotiation with your illness. And this illness/opponent is merciless. There is a universal component of the BEAST known as 'post-exertional malaise.' Basically, this means if you engage in any rigorous physical or mental activity today, you feel like all kinds of a$$ tomorrow. So if you think you are going to have a late night out (just one), or maybe run around with your kids at the park, or do some snow-shovelling, go for a run (HAHAHA! Yeah, right), or binge watch Downton Abbey until the wee hours, stay up for a New Year's kiss, or have any hobby that involves participation after 7pm, think again. And those are the small things. Consider for a moment the narrowing of your career options when a 'good day' of functioning is 10 hours, with no physical exertion, frequent rest breaks, naps, and the running of a household and family of 5. Keep in mind that I said 'good day.' Here I go complaining again...

The good news is that I am NOT dying and that this illness can be managed much like a snowball. If you start rolling your snowball in nice fresh clean snow (i.e. resting, maintaining a consistent and plentiful sleep schedule, CAREFULLY managing exertion, etc.), symptoms can get improve and improve to the point where you can even build a pretty decent snowman. No Olaf/Frosty spectacular snowman, but a snowman nonetheless. On the other hand, if you start rolling that ball in the wrong direction (staying out late, not resting during the day, overdoing exertion, etc.), watch out... The malaise/tired symptoms will build and build until you have don't have a snowman at all, but a $hitman that looks like Meatloaf on a bad day. That is the nature of the BEAST I'm afraid. Will it go away, you ask? Will it improve over time? Your guess is as good as mine.

There it is folks...No more lying! Now, I find chronic illnesses in general to be rather dull and depressing myself, so I figured if I could include a snowman metaphor and a few chuckles, it would make up for the barrage of complaints and painful education you just endured. We're even?? For real though, THANK YOU for taking the time to 'aware-ify' with me today. One thing sharing this illness has taught me is that everyone has their own struggle and a little bit of awareness and understanding goes a LONG way.