When I started this blog, I made a decision that I was always going to be open and honest about my battle with MS. I find I have good days and bad days and sometimes feel deep despair, but mostly I feel positive and optimistic and look at ways to overcome challenges rather than letting them stop me doing what I want to do.
Today I am having a really bad day, both physically and emotionally.
Last night my lovely friend, Beth and I went to see the wonderful Billy Bragg at the Ritz in Manchester. Billy was fantastic and inspiring, as always, but I discovered that managing my wobbly legs, in a crowded space, with a walking stick, in the dark is really tricky! Luckily we managed to get a spot right next to the lighting/sound guy box and I was able to prop myself up for at least some of the evening.
I had lots of realisations last night – I love live music and was previously a frequent gig goer, but I have been doing a lot less of it recently. I much prefer to be in the standing area, as the atmosphere is better, but I can no longer tolerate standing up for so long. By the end of the evening I had shooting pains in my legs, hips and lower back. I found myself wishing for the last song to come and was upset with myself for feeling that …usually I don’t want the evening to end.
Beth was dealing with her own challenges (fibromyalgia) so between us we felt ancient!
Other minor problems I encountered were other people tripping over my walking stick (one person literally kicked it away, almost causing me to fall) and the Ritz being an old building, so the toilets were down some rickety stairs – not good when your legs aren’t doing as they’re told! At one point, I went to the bar then realised I wouldn’t be able to carry two drinks and use my stick to get back to Beth. Thankfully she had realised this too and had followed me to the bar. Thanks Beth xx
The journey home was also challenging – going from the heat indoors to the cold outdoors compounded my pain and the bumpy bus ride didn’t help either!
I sound like such a whinger, don’t I?! Hopefully normal service will be resumed soon.
Today I hurt all over and I feel exhausted. I could have been going for a walk in Macclesfield Forest with Niamh, Sophie and my favourite dog, Odin, but I’m just not up to it.
I hate that this disease is robbing me of life’s simple pleasures – going to gigs, buying a round, going for a walk. I hate having to think about what I’m doing on one day as it can impact on what I’m able to do the next (starting the day with a spoon deficit isn’t good!). I don’t feel ready or willing to succumb to this way of life.
Anyway, I’m going to have a hot Epsom salts bath, then spend the day on the sofa, watching TV and cuddling with my cats …hopefully tomorrow will be a better day.
