While I have struggled for over 10 years with health issues (most of which gut related), my symptoms have not remained consistent. But while there was variation, let up in some symptoms, or come-and-go symptoms, mostly they revolved around my gut and things a doctor could relate to the gut (headaches for one). But this spring, after working hard to find answers, I jumped (whole heartedly) at a (new-to-me) way of reducing symptoms. And it worked. Sort of. My gut symptoms have vastly (VASTLY) improved, but some how, I’ve been left with this sort of lethargy. this heavy, moving-though-molasses kind of tired. Both mentally and physically. And it just kept getting worse. After some soul searching and a hell of a lot of research, I have come to the realization that I have CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis).
The problem with CFS is that there are so many different ideas about what CFS is and isn’t; so many different opinions, and a large lack of understanding. Not helped by the sometimes-contradictory science, the fact that doctor’s opinions vary drastically, and especially since each sufferers experience of it is completely unique.
So I’ve been thinking lately, what is it that I want others to know about my condition? What would I want all my friends and family to know? Surprisingly, it’s not the symptoms (fatigue is, by far, not the only symptom), but rather why I do the things I do, act the way I do, and what kind of support I need that I want people to know.
After a think, I’ve narrowed it down to 5 basic things I want people to know about my CFS:
1. When you see me, I’m having a good day. Or at least it’s not one of my worst. Not even close. Only my husband has seen those days. I can tell you, without hurting too much pride, there are some really awful days. So don’t judge my condition based only on the best of days. Besides, I put a pretty brave face on it, especially in public, due to a personal (perhaps hereditary) over grown (seriously, it’s massive) sense of pride.
2. I appreciate your support. really. honestly. truly. and from the bottom of my heart. Fatigue isn’t just physical. I’ve come to realize my mental fatigue is far, far worse. So if I forget to express gratitude, it’s because I forgot, not because I don’t feel it. I most definitely have emotions and feelings; I just lack the physical and mental strength to show all of them. It is something I am aware of, and I’m trying to work on. In the mean time, Thank you! Everyone who has ever listened, supported, been a good friend- your support has been invaluable, and I am deeply, truly thankful.
3. Mental fatigue prevents me from expressing all kinds of things- not just emotions. Words are difficult. I am not stupid. I have a BA. I am intelligent; I just can’t always express it. I can’t find the word (you know, that THING!), think of the thing I’m trying to recollect (remember the time we did that thing at that place?), or think of what to say in response (I’ll think of it hours later). That blank stare may be me trying to recall something. Perhaps it’s me processing what you’ve just told me. There are times where my mind goes blank. Most of the time its just slow, feels like old connections don’t exist any more, or like large chunks have been cut out. I want you to know, how ever frustrating a conversation with me might be, it is so much more frustrating in my head. Be patient, and don’t rush me. Frustration and rushing make it worse. And please pretend my stupid questions aren’t stupid. What’s that thingie that washes clothes? The washing machine, thanks, well the washing machine is beeping. How to you spell “connection”? that’s right, the dyslexia that was so mild I went through school & higher education without help is particularly bad on bad days (ok, to be fair, I’ve never been a good speller, but it’s just so much worse on bad days).
4. I’m not lazy. To be able to manage the condition, I’m working with a system that calls for consistency. Meaning do the same amount on good days as bad- BUT without ever over exhausting myself. That means not pushing myself on good days. It can seem I have more in me, that I can do more, rest less- but that kind of thinking only stalls progress while I spend the next few days or weeks recovering. So I now walk slow, rest often, offer to help less, say no more often. But don’t ever think that means friendships and social gatherings are now a lower priority- they indeed are not. They are very important, they just might be less active get-togethers, I might be late (while I get used to my new slower walking pace), and I might seem less engaged or more sedentary. Thankfully for my pride, most of you who knew me at my most active aren’t here (in the UK) to see me at my slower pace, and most of you who know me now have never seen me much more active than what I am now. I have realized recently though, that I need to scale back even more. So please be patient while I work out just what is my activity level, know that I may have been capable of something before that I now cannot do. And do know this is NOT a forever decrease in activity, just a temporary one with the hope that by doing this temporarily, I will be able to get back to a much more active pace. I will increase activity slowly once I have a base line figured out.
5. Recovery will not be consistent nor speedy. There is no magic pill. There is no one method with 100% results. Some people never recover from this. Some regain a slower, but live-able life, and others feel “cured”. Recovery will be two steps forward one step back. It might be painfully slow, or frustratingly plateau at times. So please be patient. Please be encouraging, be supportive, and cheer any wins. Also know, I have CHOSEN this method, this system (Cognitive Behavioral Therapy, or CBT) after lengthy research. I have done my homework. I have looked at the options. Please respect my choice. It was not an easy one. Who doesn’t want a magic pill? Who doesn’t want an easier path? I am now at a place where I feel confident about this method. I want to give it all I’ve got. So please don’t tell me about other options, quick fixes. Don’t tell me about people who failed at CBT. I need all the POSITIVE vibes I can get. I need to feel you believe in me, and that includes my choices.