Posted in Archive, August 2021

Pacing; Using A Wig

Moments ago I quickly signed off a Facebook live as my partner walked through the front door, home from his evening gym session. Normally during my lives I’m very good at opening up and sharing my concerns but tonight I struggled. They are superficial to say the least.

Yet as Damon sat down I burst into tears. This seems to have become an evening routine. I’m physically struggling at the moment so I’m cutting corners where I can to save energy and reduce pain. This is starting to really bother me. Things like washing my hair is something I do as little as possible as it’s painful, energy drainage, and often leads to a flare in pots, eds and dystonic symptoms. Yet I don’t want to look unclean. The solution I have in mind I’m not to sure of. I don’t know whether to go for a drastic buzz cut and wig wearing while it grows back; the difference being I would follow the no poo method which would result in less physical stress on my body, or just to try to wig wear on days when I’m struggling.

Trying a wig for the first time to explore the idea

I’m still exploring my options. I’m not reaching for the razor on the back of feeling emotional no matter how tempting it may seem. The plan currently is to reach out to hairdresser’s first for advice on the above idea but also on the issue of hair loss which I currently have in certain patches which gets me down. I’d love to hear from anyone whose done similar.

Posted in September

Another fierce battle for control

Today i decided to attempt the dangerous  task of straightening my hair. A task that to most is rather simple and requires very little brain power. For me it involved a fierce battle between myself and the alien, both of us fighting for control of my face, right arm and hand.

Have you ever tried straightening your hair, whilst your arm and the hand that you would normally use is stuck in a painful spasm behind your head? For those of you who are fortunate enough not to have experienced this, i can assure you it is not an easy task. After a long twenty minutes I gave in to the little alien, feeling rather proud of myself. My hair was not great but I had made a darn good attempt. A small win over the alien.

So far the alien is winning the majority of our frequent battle, but I am slowly catching up.