Why it's hard to have plans when you're chronically sick and I feel marginalised

For me, one of the hardest aspects of living with chronic sickness (particularly M.E.) has been the difficulty surrounding making plans. It doesn't matter whether they're short term, medium term, or long term either, they all have to be 'subject to change'. The problem with plans is that ideas and intentions set in stone do not co-exist well with the fluctuating nature of chronic sickness such as M.E. and other illnesses. Of course this has an impact on my life in a way that is so hard to quantify and describe - yet it is far reaching.

Recently, as I have started to talk about here, I have been deeply thinking about my future: work and career, relationships (both friends and love), children, housing, my current family... So much of my thoughts about these things are dominated by my resignation to the fact that I can't make plans...

I have tried and tried, and I feel as if I constantly hit a brick wall. I tried so hard at one point, that I feel as if I burnt out my own soul, to the point where not an ounce of desire or motivation was left, just an empty shell of dreams. No one can accuse me of a lack of action in previous years, yet I find myself accusing my 'self' as if I have let 'me' down. I feel my lack, and then I feel guilty for feeling it because I have a bed, a home, food, clothes and things that people the world over struggle for daily - just basics - and I have even beyond that. Yet somehow in this first world country, having the basics and more stands for nothing when you did not achieve it or earn it, and when it is not topped with a partner/husband, children, a house/car/tropical holidays. It does not mean anything. Meaning is given to achievement, to accolade, to titles/prefixes/letters after your name, to being able to state the make of your car and the names of your children, or the carats of your diamond and the value of your property.

At the same time, I am aware that there are other people like me, and there are people who even if not like me do not put so much (or any) stock in these aspects when defining a person's worth. Yet those people are hard to find. I am not surrounded by them. I live in an affluent area, I go on FB (the spawn of the devil) and I see what I don't have, and then I lie awake at night panicking... wondering how I can be here, in my early 30s, with a life the total opposite of what I wanted. It is almost like a cruel joke, where I was offered a wish and somehow accidentally wished for what I didn't want.

I am left feeling as if I cannot move forward, because all forward movement requires an assumption of health or energy or ability, and I just don't know what the next 6 months will be like, or the next year or any useful amount of time. All plans are risky and I feel so much pressure to be well enough if money is involved in making those plans. I want to retrain in a vocation, to be able to work a job or set up my own business, and to be able to 'live' and not just exist, as I do now, lurching from one episode of pain, fatigue, non-working body part, to the next. I don't know what is physically too little and what is too much for me. Even if I knew, how can one fit the ways of the world to one's sickness schedule or one's limitations? You can't. There is no place for me.

Looking back, I remember facing this at college. By my third year, I was wailing on the phone to my friend in Wales (a way away from London -no help!) that I just couldn't see how to do it (the overall studies, the living by myself, the walking/movement required to get myself where I needed to be, to procure books and to work to save for a computer on which to write my dissertation) as I was falling apart at the seams. At the time, I was frightened and felt stuck. I felt no hope. I just took a day at a time, ploughed on and eventually finished a lot sicker than when I had started. Was it worth it? I don't even know now. I always believed that I went to university to 'read', to better myself, to become more educated, not to find myself employment - the emphasis on self improvement rather than a glittering career at the end. I did that, I got that and I came out the other side with an inquiring mind, with a depth of knowledge that I felt was worth the effort it took to acquire. When I think about it now, I just don't know... It hasn't gotten me anywhere because no one cares about my education or my mind/brain, because the body doesn't work the way a body needs to work in order to fit into society.

I feel like that now, except all my friends are in different places to me - not just physically, but mentally and lifestyle-wise. I am like the maiden aunt, the verging-on spinster... Not because I chose a career over another type of life, but because sickness grabbed me and made a choice for me...

Meanwhile, I keep making plans. I just don't know what exists if I stop making plans.