Although I believe I have had ME/CFS for around 3-4 years, it was initially diagnosed as depression only (I did have depression but I believe ME/CFS was there the whole time too). It was only last year that I was officially diagnosed with ME/CFS. So accepting this illness, and understanding what the full implications of it may be, has not been easy. In fact, its very very difficult.
Not only is there the stigma associated with chronic illness, but there is a whole range of emotions that go with it. This aspect of the illness is often poorly appreciated and understood. I regularly experience emotions such as guilt, disappointment, anger, denial, which eventually gets replaced with a sense of acceptance. I dont want to be ill. I never wanted or expected to not be able to work, to not be able to clean my own house, to not be able to do my hobbies, to not be able to socialise whenever I wanted to. I used to be very sporty, and I used to be very hard-working and ambitious. Suddenly, I am faced with the fact that I cant be that person anymore. I accept my limitations and that the only way to get back even vaguely towards the life I had before (whilst believing that I wont quite get back to where I want to be) is to pace myself, to set my sights a lot lower than I used to and to stop saying yes to the things I did before.
So, when a relative says to me "are you free for a family meal next weekend?", it isn't just a case of "am I free?". I have to think whether I will be up to getting ready on time, getting there, what I need to take if anything, who will be there, what level of involvement will be expected from me (I cant very well sit quietly on the sofa if there is going to be a room full of children or a party of adults drinking with loud music on, but if its just a couple of people, I can generally relax a bit more), also how long will I be able to stay for, and how long is it likely to affect my health for (generally speaking a social occasion will knock me back a couple of days at least). And how do you explain all this to people, without feeling pathetic, attention-seeking or subordinating yourself? Its nice to have understanding but no-one wants pity!
Then I have my best friend asking me if she and her young family can come to visit me for a whole weekend. I havent seen her in 18 months but I know this could well set me back two weeks. What do I do? I want to see my friend, and there is no way I can visit her. But my health is just recovering. Then I get a good couple of days and think I can conquer anything so I think "yeah, what the hell, why not", but in reality I know that I shouldnt even contemplate this for months yet.
And then there is work. I want to be at work. I worked hard to get to the point I am at in my career. I enjoy my job and I like the people I work with. I feel guilty for not being at work. But there is no way I can even contemplate work at the moment. The physical and mental demands are too much. So will I recover enough to go back at some point? Will I be able to work part-time? On what basis, what kind of hours? Or is it fairer to everyone to hand in my notice? Would this mean I can be free of one source of immense guilt and get on with some relaxing activities instead of feeling guilty all the time. Of course, the odd 10 minutes in the day that I feel ok, is not the same as sustaining a 40+ hour week with constant demands being made of you.
Whichever way I look at it, there are no easy answers. Just more questions. I try not to think about the long-term but its normal to. And here goes the constant pattern of denial and acceptance, of questions and decisions... none of which are about to get any easier.