The mental side of Fibromyalgia and Chronic Fatigue Syndrome is more frustrating than the physical. People can weigh and measure the physical. Most people have hurt themselves in one way or another and can empathize. They don't always understand the long term weight of chronic conditions, but they can see the cloud. But still if you say "I feel tired" they don't understand. If you say "I always feel tired." they really don't understand.
I don't get restful sleep. Ever. I am awake every twenty to forty minutes. Typically its a matter of get up, go to the bathroom, go back to bed and rinse repeat till I can either no longer sleep any longer or until I'm just too irritated with the whole process to keep doing it. I'll go through a string of days where I don't get more than three or four hours of interrupted sleep, and then I'll have a couple of days where all my body wants to do is be in bed. It never quite gets the memo that it won't ever get restful sleep.
I have constant physical and mental fatigue. The mental side effects are difficulty in focusing, trouble concentrating, decreased creativity, difficulty in problem solving, a skewed time sense, and severe memory issues.
I can tell you right now the memory and time sense issues are the biggest problem. If I do not write something down, I will not remember it. If I have an appointment on the 15th for something, I have to make a mental effort to tell myself over and over that it's happening, I have to write it down at least once, and even then I've been known to not remember. Often the only reason I know what day of the week it is because of my boyfriend's work schedule. I have only the vaguest awareness of the date on any given day. I can be told someone's name fifty times, but until I have seen it written, I will not remember it. I sometimes completely lose track of what year it is. I have also been known to forget my own middle name. Granted, its rare that I use my middle name, but still, you'd think it would be something I wouldn't forget!
The focus issues are what prevent me from getting much of anything done even when my pain is at an 'I can ignore it' level. Even if I've gotten a shot of torradol to deal with pain, I still have issues getting much of anything completed. I'll have it in my head, I'll have the motivation, but then I'll sit down to get something from brain to paper or keyboard and there's a misfire somewhere along the line. I might get it started, but I'll almost be guaranteed to not get it completed. Blog posts tends to be about the limit of what I can do in "one sitting." (which, in reality, is me coming back to it four or five times before I either wrap it up or leave it dangling.)
I have developed the attention span of a squirrel on crack. I am easily distracted, slow to get back to what I was doing and slower still to pick it up each time. I find it hard to concentrate on someone talking, after a while I just start to drift and have to yank myself back to the conversation at hand. It's not that I'm not interested, it's just its hard to concentrate for longer than a certain time.
I used to be a very creative girl. I would write pages and pages of fiction on a daily basis. I would read a book a day. I'm probably down to reading a book a week and if I get a short story finished every couple of weeks, I consider myself lucky. Its not that I don't have the ideas, even if they float around in their own little clouds, never really quite connecting, but getting them out, connecting the scenes, doing the 'beyond imagining' just isn't happening. I can't even remember, most days, the backbone setup for a story. I tend to use Freytag's analysis for story writing - five stages; exposition, rising action, climax, falling action, resolution/denouement. I can typically get through the exposition and sometimes start the rising action, but rarely get any further.
Problem solving is hard. You present me with a situation and give me five choices, I'll probably choose one and it will probably be the right choice. You present me with a situation and no real pre-formed answers, I tend to curl up in a little ball and take five times longer to choose an action or answer than it should take me. Its not so much problem avoidance as it just takes that long for my brain to sort through it all and spew out an answer.
When you take stress, mental interruptions, physical issues, isolation and a lack of sleep and social interaction you have pretty much the perfect recipe for clinical depression. I call my depression type 'anger without motivation.' I'm frustrated, I'm restless, I'm irritable, I'm easy to anger, slow to calm down, everything is a big deal and my brain just will run around screaming with it's proverbial hands waving in the air whenever anything goes wrong. My coping abilities have become next to nothing but trying to work up the enthusiasm to do anything is just too difficult.
I often feel alone, purposeless, restless, and like nothing will ever change or ever improve. I can sort of muddle along if I feel I'm making process towards an important goal (such as getting the right medications, visiting my boyfriend, whatever) but as soon as I feel I'm just sitting in a puddle and flailing, going nowhere, gaining no ground, I quickly lose hope and just start to sink. I don't want to go anywhere, I don't want to do anything, and I just want to sit in my bathtub (don't ask) and hug my knees and want the pain to go away. Of course, it doesn't go away and I get closer and closer to suicidal. I'm fairly lucky in that while I've considered suicide more than once, I just can't do that to the people I love. I may not feel like I can connect to them, or that they're an immediate part of my life, but I also know they'd be wrecked if I suddenly took myself off of this planet. Its still not fun to deal with in any shape or form.
Which leads to - if you can't say something supportive, don't say anything at all.
I, and most people I know with FMS, try to be upbeat. We try to be positive. We'll post cute pictures on Facebook, we'll tell silly stories, we'll joke around. Its very disheartening, however, when people chose to nitpick, or contradict, or argue. I have some friends who love to debate, to over-analyze, and to just dissect everything. Most days, I just filter it in one ear and out the other, but on trying days it gets too much and I just want them to shut up and go away. Its kind of hard to tell people to temporarily shut up and go away directly and remain a polite Canadian. Its also kind of hard to explain why their asking how much analysis is too much analysis is making me want to beat their head bloody when all you want to do is have people to be happy and positive and dance amongst the flowers. To make this even more fun, most days I'm perfectly fine with the brattiness, the refusal to suspend belief and enjoy and general cynicism so people have no way to know WHEN I'll suddenly growl and say "just let it go already."
I've also learned that if I want to post my thoughts on anything negative or grumpy or controversial not to do it on Facebook. I'm not sure what it is about Facebook that makes people turn into debate champions and the royal cream of nitpickers, but I now keep it purely to Blogger and Twitter. Its hard to lose that wide base of support due to the nay sayers, but one does what one can.
However, when people say things like "Well, maybe if you get a job" or "Have you tried yoga?" or anything else that's just bloody OBVIOUS, that we've all heard five thousand times before, its a kick to the kidneys. Of course we've tried Yoga, of course we want to get jobs, of course we want to live lives as normal as possible - that's the thing, we already are. We're already scouring the net looking for answers, we're networking with each other, we're talking, we're griping, we're fairly up on things. "Have you heard about Hatha Yoga?" is a lot more open and less judgemental than a general "Have you tried yoga?" All we hear after the fortieth time we hear a comment like "Have you tried yoga?" is "You're an idiot who is obviously happy wallowing and not improving or changing." Sure, you didn't mean it that way. You probably even feel its a stretch to have it interpreted that way, but imagine if you hear the same thing over and over. It becomes a criticization. We're open to suggestions, but keep in mind, anyone who has had FMS/CFS for more than a year has probably heard the most common ones before. Try to coach any suggestions in as open ended terminology as possible!
When in doubt, "That sucks" or "HUG!" or a simple indication of empathy works so very well. It says "I'm thinking of you, I'm hear to listen, I'm not judging you." Short and sweet.
Being told to "get a real job" is a personal favourite. Apparently people seem to think that it's fun for a grown adult to always have to be begging for help. To put one's pride down, when often pride's all you got, and say "I need help." You need help to pay for clothes, or food, or transport. This is on top of the help you already have to ask for just to get daily life things accomplished. I can't speak for all FMS/CFS sufferers, but I receive $944 a month on disability and $40 of that is purely because I'm celiac and get a dietary allotment. $944 isn't a whole heck of a lot of money.. and if I were married, I would be forever living off the generosity of my spouse and feeling like an anchor around their neck. Its probably the most insulting and hurtful comment I get, and of course, the wonderful judgemental people never actually say it to my face, they say it behind my back.
Here's a life lesson - if you can't say it to someone's face, or at least want the message to get filtered through to them, don't say it and perhaps wonder why you even think it. Look at why you feel that way, look at why your friend is friends with them, and then maybe think about it. It's real easy to say "get a real job" and make a casual judgement, it's not so easy to ever get them to respect or like you again. If high school taught us nothing else, its that rumour-mongering and drama causing always gets around.
And if you can hold down a job when you have trouble remembering your own name some days, let me know your secret and what job it is you do.