I’ve had a few years now, of intermittent self isolation, by choice. Purely, because it had become such an anxiety filled event, to even go to the Co op. My list of places to go, had shrunk massively. There were really only two places I could or would choose to go, without my heart thumping, and that is to work and the gym. Home was easier in so many ways, but I was missing friends outside of work and my confidence was low.
With all that mental energy going into focussing on what my feet and legs were doing, there really is not much energy left for function. I think that is probably the best way I can describe how the CMT fatigue has affected me. I am constantly doing mini risk assessments, and even getting out of the car at the shop has become a much resisted event. I've parked up and changed my mind on numerous occasions.
In work I am painfully (literally) aware that unless I’m sat down, I’m actually pretty bad at listening properly. A two way chit chat conversation, can be likened to chucking a ball at the wall; it’s good fun for the thrower but a bit tough on the wall. Standing up, all I can think of is where the next seat is, am I standing on the edge of a paper clip, or 'do I look like I'm just about to collapse? All of my being is concentrating on staying up. It's exhausting.
Yes! It does help to have a sense of humour, even a very dark one on occasion. However, it also helps to be sad, cry, get annoyed. All of these feelings are completely normal, understandable, and in the right moment, very important. It is these moments (or days) that power me on. Sometimes, the only way up is from the bottom! Mentally and Physically. I know myself, I'm stubborn as hell, but actually taking a break for a little self pity is no bad thing.
Some days, life feels dotted with mini hurdles. Give yourself a mental hug for each hurdle you get over, and spend a little time each day setting tiny goals or challenges for yourself, small steps equals big achievements.
Naming the increasing members of my family; each designed to make mobility easier, has actually become a real comfort. Asking my hubby if he knows where “Roy” is, or can he please get “Wilson” from the hall, has not only given us a giggle, it has in fact softened the blow of having to use these metal mobility monsters in the first place. The crutch, remains nameless, however. Being the one device that seems to cause more problems and greater risk to myself. Having performed some quite incredible triple pirouettes, and literally learnt to launch myself like superman, in order to avoid more knee damage. I have had ‘crutch bruises' that could win awards with their colour palettes. I have three crutches, in various places in the house. However, I have decided less is more, and in all seriousness, think, in my case they possibly lead to further weakness and a worse walking pattern. Wilson; the walking frame, may be bulky and screechy, but he's damn sturdy!! And then there is Roy; the wheelchair! A bit ugly, but, inviting and comforting, my key to exciting things ahead maybe ...
Our son is attending an online lecture, upstairs. Daughter is on final dissertation work, pressure on, but happy living with her boyfriend. Hubby is stripping off wallpaper. Both dogs are chilled in their beds.
Our springtime garden continues to blast my senses with magnificent lime greens, purple hues and fresh, still, mediterranean blue skies; the odd transient puff of newly formed cloud blends the whole scene together. The bird song fills the air around me with their divine chorus of melodies.
Meanwhile, I'm more than happy to hear from you if you would like a very unsteady shoulder to cry on . I think, by subscribing to my random updates, you can then email me.
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