Sunday, December 24, 2017

The joys of ME/CFS and fibromyalgia

I'm scared. Scared of how my body is restricting me - of how little I can do before there is fatigue and pain. Scared of how easy it is to withdraw and further isolate myself. Scared that I'm not going to get better and of the slow deterioration (feel my heart racing after something like hanging out the laundry). Scared of how I want to be able to go out and socialise, but also how much I know it would not be worth it (drive across town and manage maybe 20 minutes and then crash because the noise is too much, there are too many people?  Yeah, not really worth it, and such a downer for everyone involved).

Scared that I can't see the good in me which others do. Scared of the depression which is pulling me down. Scared that words are coming out wrong. Scared that a lot of the time, talking or writing is too hard. Scared that this will become too much. Scared that I'm too needy.

Frustrated that I can't do what I used to, either physically or mentally, not by a very long stretch. Frustrated that I'm constantly cycling through stages of grief. Frustrated that my world has shrunk so much. Frustrated that I feel I'm letting friends and family down.

Tired of being tired. Tired of medical articles which maybe have new clues on what's happening in these illnesses, but no treatment. Tired of having to plan and pace everything. Tired of inexplicable aches and pains, and the feeling of having deep bruises all over. Tired of the near constant headaches. Tired of suddenly having foods become inimical to my digestive system. Tired of rarely being able to hold a conversation, a sentence, a thought, of having to struggle to be able to focus.

Sunday, May 14, 2017

Why yes, I'm still alive and kicking!

Digital silence to the contrary.  Just... feeling overwhelmed, so pulled back.  Sad stuff, like the death of our beloved bullmastiff, Molly. Tiring stuff, like Rosie the Great Dane (oh my gods, why do I take on puppies?).  And just not enough spoons for creative activity after taking into account daily chores and paid work.  Right now, I can't wait for retirement (4 years, 1 month and counting).  Mind you, I've also fallen down the rabbit-hole of Harry Potter fan fiction, to a somewhat obsessive degree.

It was ME/CFS awareness day recently (in case you were curious about why structures were lit up with blue, there's your answer). I managed to put up a MillionsMissing infographic to my Facebook page, but that was it.  A more nuanced, personal post of what is missing from my life is just too depressing to do. Clothes that have gone because I no longer need office-appropriate attire, and fibromyalgia means that comfort is paramount. Frequent bouts of dizzyness (orthostatic intolerance) and swelling feet/legs (because my heart, like all my other muscles, is affected by CFS and operates sub-optimally) mean no more high heels. Activities with the dogs - gone. Gardening for pleasure - gone. Reading anything of substance - yeah, mostly gone. Embroidery - mostly gone. Socialising - very small doses, very carefully planned.  Spontaneity - gone. Working in an office - gone (technology allows me to work from home, for which I am grateful). Sleeping well - gone. Being able to visit art galleries - gone. Being able to play with cars - gone.  And so it goes....

On the plus side, I have gained food intolerances and weight.  Never let it be said that ME/CFS takes without giving😀