With chronic fatigue syndrome the easier days are hard and the hard days are hell. Sometimes I can predict when I’m going to have a ‘tired’ day. If I am very active the day before I might overdo things and cause a burn out though I’m bettering my understanding of my limits and expanding my limits themselves. I can control that to some extent. What I can’t control is my diabetes on a day to day basis. I try my best and I follow all the rules but the fact is, not everything to do with diabetes is within the control of the diabetic in question and my body is notorious for not following the diabetic rule-book. If it wants to give me a bad day it will and as a result I am probably going to be fatigued the next day and possibly the day after that and if I keep having bad diabetic days I will keep having bad fatigue days and my family know this because it was horrific last year and led to me hardly being able to get up or stay awake for more than 4 or 5 hours at a time.
Except, now I’m doing better and I’m finding that when it comes to how I’m treated and as a consequence how I react to said treatment that is not always a good thing. I guess that sounds strange because when I was worse off with my fatigue I was under a lot of strain to magically fix things overnight. Now, people seem to think that I have, for the most part, found a way to manage it. It isn’t a perfect result but my ‘normal’ circumstances have been ‘accepted’ until I get insulin pump therapy and thus have more control over the biggest outside factor on my fatigue. Then I will be pushed to improve further even though all my medical peoples are perfectly aware that this might not happen. Only 5% recover entirely but I ‘can’t think like that’. What, realistically? Anyone seeing issue yet? Yeah me too.
The thing is, I don’t have to meet the standards of the people I live with. I don’t but they like to think I do and then they like to deny putting me on any pressure when I question it thus putting even more pressure on me because I’m made to feel like THE problem rather than someone who HAS a problem. I’m doing the best I can and that should be what is accepted but instead when I do need a sit down or something I just get one of those looks. I’m sure any PWDs know the one; the ‘urgh, really? again. why don’t you just try harder?!’. No words are said but it is there and you know what it means because it is the same look you see when those words are thrown in your face.
Then for me personally, and I don’t doubt many others with CFS, there is the comment I got this morning; ‘I thought you’d be up earlier’, that goes hand in hand with other favourites such as ‘are you STILL not up?’, ‘do you not think you should be getting up now?’. As someone who deals with many other endocrine gremlins that include depression of all things, that isn’t really the thing I need to hear when I’m crawling out of my safe place to challenge the world again. I instantly feel a failure. The thing is, I need my sleep and I’m not lying in my bed for 12 hours for the hell of it. I’m doing it because I can’t function without enough sleep and because if I did get up I’d be in bed again before bedtime having a nap and that does more damage to my recovery overall than an extra hour or two in bed. It wasn’t like I had neglected my duties. I was up at 5am to take insulin and then 6am to take my dog out for a wee. It isn’t like I enjoy sleeping my mornings away but if I get up too early I feel ill, I get a sore head, I’m tired, my limbs feel heavy, I get snappy and my diabetes spirals further out of control.
It is very hard to just think you’re not having a great day when everyone else’s actions imply you’re just failing, not trying hard enough, being lazy. It is very hard to remember that I do everything I can to manage this illness, that I follow all the instructions, do all the invasive tests, answer all the questions and take all the medication without complaint. Plus, when I’m already tired and mentally drained the last thing I want to do is have to put my metaphorical war-paint on and defend my illness once again and state again that I’m trying. I don’t want to sound like I’m complaining but I don’t want to just let people treat me like I’m a lazy fool either. I support the renaming of CFS entirely because of situations like I faced today and the comments that come every time I need that extra hour. People just don’t seem to understand that CFS is real and very serious. I’m not just tired. I’m not just lazy. I am trying. I am ill.