Living Life, Within the Limits of Chronic Illness

My Reality.

Generally I like this blog to be a positive take on life with M.E. but for me there’s no escaping the reality of this illness and the impacts it has on my life. I choose to focus on the things I still have and can do rather than the things I’ve lost. But I guess for all those folk lucky enough to have little or no idea of what M.E is, me focusing on what I can still do may not show the real impact of this illness. With this in mind I have decided to do a post on the things I can’t do. The stuff I generally avoid focusing on. I don’t like to dwell on what the life of a normal 21 year old is like, it only serves to make me realise all I’m missing out on.

At 21 I imagined I’d be graduating from university, regularly be out with friends, have learned to drive, perhaps even have a job too! But for me that isn’t the case. For M.E. has taken that away from me. I lost my teenage years to this illness and I’m still unable to lead a normal life.

There’s no parties for me, I can’t cope with the noise, the lights, the crowds. Alcohol is almost a complete no go these days, I’ve never been able to drink much but last year’s relapse has left me almost intolerant of alcohol; just a small glass of wine leaves me dizzy.

I rarely go out, and when I do it’s only to local places at quiet times. Again going places when it’s crowded although possible makes me very ill afterwards. I always dreamed I’d rarely be home when I was 21 but instead it’s the total opposite! Much like my teenage years.

This year most of my friends are graduating from university. Something I always dreamed of doing. And it’s something I will do…just not at the ‘normal’ age. I’ll be few years behind them. But I’m lucky I’m able to study at all. At one stage the thought of doing a degree was unimaginable. But thanks to The Open University I’m able to study from home, part-time, making it possible for me to do my degree. Albeit slower than my peers and with a lot more obstacles in my way!

I had always imagined come 17 I’d learn to drive, yet here I am at 21 and I still haven’t managed it. When I was well enough to in 2010 I didn’t have the funds and since then I’ve relapsed and to be perfectly honest even on my better days now I wouldn’t trust myself to drive. It’s a dream of mine to learn in the future, in an automatic since that should make it easier! But for now it’s another thing that’s been put on the back burner thanks to the M.E.

As for a job. Well I always thought even in the early years of being ill, that come 21 I’d be able to have a small part-time job at the very least. I’d be earning a living and able to pay something towards living with my parents (if I hadn’t already moved out). But alas my life took a different direction and I’m unable to work, heck I only just manage to study at times!

And then there’s all the other things almost every healthy person doesn’t think twice about, things that pre-illness I didn’t think twice about either.

  • Standing in the shower, even having the energy to shower!
  • Washing and dressing.
  • Walking unaided.
  • Running.
  • Trips out.
  • Holidays.
  • Lifting a kettle or even cup of water.
  • Brushing your hair.
  • Sitting up.
  • Shopping for food & essentials.
  • Doing the washing.
  • Cooking a meal.
  • Enjoying the sunshine.
  • Being out in the fresh air.
  • No pain.
  • No unrelenting fatigue.
  • No constant headache, sore throat or brain fog.
  • The strength to open a bottle of milk/get the lid off of the toothpaste/open a crisp packet etc.
  • Able to tolerate the sound of opening a crisp packet!
  • Being able to hold a pen to write.
  • Climbing the stairs.

Having to choose between studying or having a shower; washing up or getting changed. These are everyday decisions for me. If I do one I often can’t do the the other. Or I can do the other as well but it will make me very ill in the following hours and days.

I could go on but this really is getting a bit depressing for me. These are things I either can’t do at the moment, haven’t been able to do for a while or are everyday struggles for me. Struggles that often no one sees because they happen behind closed doors. These are things that no healthy person has to think about, they take them for granted. I’m guilty of that too. It’s taken having M.E. for me to realise how precious these things actually are.

At this point I’d like to make it clear that I don’t begrudge any healthy people of all they can do. For making the most of their lives. I admit, I occasionally feel a little bitter and sorry for myself that I can’t do all a healthy person can. Especially if it’s something I dream of doing. But for the most part I’m happy for them. They have the abilities and opportunities I’ve been denied through no fault of my own, and they’re making the most of them. That’s the way it should be.

I don’t want my friends to feel they can’t discuss their lives with me, at times their stories are my only connection with a ‘normal’ life. I don’t blame them for excluding me from events because they realise I won’t be able to cope with it. It hurts a lot to have to turn down an invite to go out because of my health, it hurts more when no one understands why I’ve had to say no. Luckily these times are few and far between nowadays as my friends begin to understand.

I don’t think a healthy person can ever truly understand how hard it is to accept you can’t do things, everyday things, when you have a chronic illness like M.E. but I’d like to think that by writing things like this post, providing an insight into life with M.E. and the decisions that have to be made, things will change. A basic understanding will be had.

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  1. Anita

    Thanks for your post. It made me cry, which is something I need to do for my 16 year old son who is now 11 months into his ME journey. I hope that he can have a positive view on this in the future like you.

    • Clare

      I am so sorry you are going through this with your son, I really hope that given time he can have a positive view on things. I know it took me many years to accept the way my health is, and learn to look at the little positives, the things that often get forgotten about when you can manage them without any trouble. Please know I am thinking of you & your son, and I hope you can find ways to see the positives in each day, no matter how small.

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