During my CBT session this week we talked for a little while about the fact that it’s almost three years since I got sick and flew home from Dubai. It’s funny because leading up to the 1 year/2 year milestone I was very hung up on dates and times whereas this past year I have focussed very much on the here and now, taking each day as it comes. But it just naturally cropped up with something we were talking about and it really felt like someone had punched me in the stomach.
Isn’t it funny how such a small thought can up root so many feelings and emotions? I mean, nothing is going to change just because it’s coming up to three years, it was just saying it out loud felt like it was a really long time. And it is. However, this time, I had a little tear over it but was able to chalk it down to, yep, it sucks but you know what, it is what it is and time passes whether you feel sad about it or not.
The thing that I am struggling with at the moment however, is feeling like I have to justify myself a lot more. In my CBT session we talked about how someone had asked me recently if I felt like I was getting better. People, see me out or posting online, see me smiling and happy and coping slightly better with things that perhaps I wouldn’t have a few months back. But, I honestly didn’t know what to say. Yes, I feel like I am taking steps forward but am I feeling ‘better?’ No, not really. And that’s why I love my CBT sessions because my therapist was able to explain something in a way I hadn’t thought about it before.
She totally understands my life living with ME. She doesn’t think it’s in my head, she doesn’t think I’m a weak female and she’s always honest with me. She’s never ignored the fact that it is a chronic illness, one that has no known cure or treatment and one which I will live with, most probably, for the rest of my life. However, when we started talking about me ‘getting better,’ she explained it like this: She has asthma. She can live her life because she’s put things in place that help her to do this i.e. medication, exercise and a healthy diet. If she were to take these things away, her asthma would become worse and she wouldn’t be able to manage her symptoms and wouldn’t be able to continue with her daily life. This is the same for most chronic illnessess. I am able to manage my symptoms better now. I am kinder to myself and follow my set targets to the letter because I know that if I push those boundaries, I am going to suffer and I am going to suffer badly.
If I were to take away all the strategies, medications and methods I have in place, I would be back at square one. Well, maybe not square one but pretty close. My life has changed forever, I will always have to be aware of stressful situations, not pushing myself too much and keeping a very close eye on what my body tells me. That doesn’t not mean I am lazy. That does not mean I don’t want to work. That doesn’t not mean I don’t want to be independent. That doesn’t not mean I want to miss social events. It means that I am managing my chronic illness on a daily basis in order to live an improved version of the life ME took from me. But, as always, don’t always be fooled by my smile and the words, “I’m fine.” I push myself and I show up because I refuse to let this illness beat me,that doesn’t mean I’m better.
It’s funny, some of you may know that my eyelashes are growing back and, even if I do say so myself, they are pretty damn gorgeous! But to some people it has indicated that I am on the road to full recovery. Nope. My alopecia is unrelated to ME. Yes, it is an auto immune disease but just because my body is producing hair again does not equal me recovering from ME. Indeed, it most certainly makes me feel better in myself and has grown my confidence but it hasn’t stopped my constant fatigue, joint and muscular pain, light and noise sensitivity, pins and needles, insomnia… do I need to go on?
I’m not complaining here, I think I am more at peace now with my situation than I’ve ever been. It doesn’t stop me from having hours, days or weeks where I feel utterly devastated by what’s happening to me but this is my life. I only get one chance so therefore I need to appreciate it, smile and ignore the people who question if I’m still ill or not. I posted a quote on my Instagram the other day which struck a chord with me: It doesn’t matter if your glass is half full or half empty…be grateful that you have a glass and that there’s something in it.
Have a fab weekend.