Well, that’s what I’ve been trying to do anyway.
I recently read a blog post by another CFS blogger which was entitled ‘Nothing’ and it really struck a chord with me. I was diagnosed with CFS 2 years ago after a tough period in work when I was pushed by my overly charismatic but terribly aggressive manager to work 15 hour days whilst also studying for a PostGrad part time. Looking back I don’t know how I’m still alive. I mean that in the way that I’m really not surprised I am in the position I am in now. At the point I left work my CFS was so bad that I became housebound and over a period of a year declined slowly but surely and became bedbound for 6 months which culminated in a 3 month hospital stay.
Although I have suffered with it for over 10 years. It was never as bad as it is now and was always ‘manageable’. Looking back, I am so angry with myself for not going to my GP and fighting for a diagnosis of SOMETHING….ANYTHING. I just did nothing. I accepted that this was just the way I was – I got tired easily and I couldn’t do what my friends could do. I went to live on my own as a result to manage it more easily. To manage working a 9-5 job, I would come home from work, eat dinner and get into bed around 7pm and rest until I went to sleep around 9pm. Entire weekends were spent resting in bed. I still remember the feeling of that adrenalin coursing through my body while I was laying in bed trying to rest which I tried to manage with beta blockers which I realise now in hindsight was the post exertional fatigue. And my body telling me that it wasn’t coping very well. I kept getting ‘ill’ as a result of trying to live a sort of normal life (I still call it that and I’m told off by my Occupational Therapist for not saying fatigued).
Fast forward a number of years and here I am in my 30’s bed bound, unable to work, unable to socialise with friends, unable to wash myself some days, having lost most of my friends due not only to my CFS but to my inability to accept and admit the fact that I have CFS. Why? I don’t like being ill, I was ashamed of being ill. I am ashamed to even write it here. I feel that people would judge me, would look at me differently. To me, illness was a weakness. Evaluating everything I have been through over the past few years there is a positive to having CFS. It has changed me. It has changed my outlook on life, it has changed my values and it has changed what I look for in people who I want to bring into my life.
I recognise in hindsight that the people that left my life due to my illness were not the best friends to have. Although sometimes the GAD gets to me and makes me worry and dwell on things from the past. Was it me that pushed my friends away? I have noticed that my friends didn’t like me talking about my CFS. Nobody knows what to say. They look at me, uncomfortable. I feel uncomfortable. I dont know what to say. I find myself making a joke so that the uncomfortable period will pass. So I don’t verbalise how terrible I am feeling inside. That I cried most of the morning. But that’s too much information anyway. Do I expect too much from people? Do I not expect enough? What is a friend? I’ve realised that my idea of a friend, and how I would behave if one of my friends told me they were unwell is one of complete support. When then my friends don’t behave that way to me, I get upset. Although I don’t say anything because I don’t want to lose the friend I have now, however unhappy I am with the way they are supporting me. But then I worry, I spend a lot of time worrying that perhaps I said something wrong in that last interaction we had. When she asked how I was and I could clearly see she felt uncomfortable but I also felt upset that she was behaving in such an awkward way and making me feel uncomfortable, I said that I’m not getting any better. But did I say this in a passive aggressive way? Oh no, she’s gone now, that was so awkward, what if she hates me and I lose the friend that I have.
I guess this is the problem when you have GAD and OCD. They warp things, make you dwell and generate unnecessary periods of increased stress and worry. Like right now. Part of my rational brain knows that it was just one of those uncomfortable situations, my friend hates asking me how I am because she doesn’t know what to say. I pick up on that and then act like everything is ok because I want to avoid the uncomfortable situation and she behaves like there is something wrong with me. Other friends take me at face value, I am LK and my illness doesn’t define me.
During these moments of mental weakness, I try and stay mindful and know that it will pass.