Humans of ME/CFS
I was diagnosed with ME/CFS in 2002 when I was 28. At my worst, I couldn’t even walk to the mailbox. These days, if I am ridiculously constrained, I can manage my lifestyle so I can work part-time, but it is like walking a tightrope and many times I have fallen.
Last year, I got another breast infection (I wasn’t breast feeding), ended up in hospital with IV antibiotics and a week later, the ME/CFS relapsed. I spent two months in bed. Since then, I have been slowly fighting, every way I know how, to regain some resemblance of health again. Some sunny days, it breaks my heart that I can’t go for a walk with my family, but most days I can fe,el content that at least I am here and can sit in the sun with them. As hard as it is, you have to adjust your expectations of life with this illness.
My daughter once asked me if I could take a concrete pill and toughen up? The irony is that I have had to become so mentally tough just to do the little things in life and I’ve had a life time of concrete pills. I am a master at hiding how I am really feeling; people just don’t want to know. I have a few close friends and a husband, mum and sister who are my rocks and without their unconditional love I would hate to think where I would be.
The best analogy I have come up with is a battery. If I rest slowly the energy in my battery builds up, and I can go again for an hour or two, before my body starts literally shutting down again. It takes a lot of strength to stop doing something you love because your body is telling you it needs to rest now.
The hardest things for me have been the loneliness, constant pain, and fight to stay positive in the face of so much suffering. I battle away inside a body that can’t actually do what I want to do. I have so much to give and I am passionate about many different things. Thankfully, I’ve recently been introduced to Yin-Yoga and when I’m well enough it is an activity I love to do.
For years, I hid my illness because of the skepticism in the medical world. Now, I’m out loud and proud! Those who want to judge me aren’t worth knowing.
We all have to fight together for this illness. We shouldn’t feel shame. We need to make people aware in the hope research progresses!
They say ‘what doesn’t kill you makes you stronger’. It breaks my heart to know that due to a lack of understanding many people have chosen to take their lives. I dream that one day ME/CFS will be understood and that people won’t have to suffer anymore with this awful illness.
