One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms … Continue reading Kicking it old school: Payback is a b***h
Like yesterday, today was a beautiful spring day with glorious sunshine, very little wind, not too hot or too cold, and not a cloud in the sky. The last week has had a lot of those, so I'm making the most if it while I can... read: totally overdoing it while I feel ok. We … Continue reading Adding life content: happy father’s day
I'm fortunate enough that my ME is currently only in the 'Moderate' range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have … Continue reading August 8 – International Severe ME day and my ME heroes
I really hate menu planning and eating on said plan. I can see the benefits, but I have never been a fan. When I was younger, and on the weight watchers points system I never used their weekly menus (although I liked some of their recipes), preferring to stick with my natural "what do I … Continue reading Look at these overflowing cupboards… I have nothing to wear/eat, I tell you, absolutely nothing!
I have read many descriptions and metaphors to describe what it's like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of … Continue reading Spoon theory vs Energy Bucks
Yesterday I buried a friend, Lois. Well, I didn't literally bury her, I left that to other more able bodied people, but I was there when it happened. She died on Monday, both suddenly and not. She had cancer; an aggressive form of pancreatic cancer which was only diagnosed, at stage 4, earlier this year. … Continue reading Growing around my grief
Take 1 bout of flu (substituting a cold may not work as well) Add 1 weekend on feet running a stand at an expo, Mix in a dash of terrorist attack and fear for Muslim friends. Mix well. Fold in an MMR vaccine and sprinkle with bronchitis. Allow to rest for 5 days, applying heat … Continue reading So… My boob exploded. That was fun.
If you’re interested in what it’s like to live with CFS/ME then this might be a useful read. Fair warning though, it is Loooong. This is part of the appeal submission when my Disability Benefit (SLP) application was declined. The full appeal document was over 10,000 words long. I’ve edited it, added bits that I … Continue reading What it’s like to be me, living with ME/CFS