Life with MS. No - my life is not terrible.
The last few weeks my MS has been getting quite bad. My daily routine is waking up feeling like I've had three hours sleep (similar to that of a new mother), my hands feel cold and not quite connected. I stand in the shower for probably longer than I should, we have a tight schedule, three little girls to be up, dressed and out of the house by 0715. My three little monkeys, full of beans and experts at distractions and prevention techniques. This morning my eldest thought it was the perfect time to tell me the minute by minute detail of her birthday party that she hoped for next June. To be fair she had thought it all out, including the parts where she had kept the cost to a minimum to save money. Hope is a precious thing, so fragile yet so far undefeated.
Apparently it's called 'crash fatigue'. I can start feeling it only a few moments before, it feels a bit like jet lag, or being really drunk, trying to think and pronounce each word at a time. And suddenly it hits you, my limbs feel like cement, ugh, so heavy. Keeping my arms connected to my body pulls down on my shoulders and back, if I rest them on a table it feels like they might fall through the surface so I try and bear some of the weight. It's difficult. My eyes want to shut but that is antisocial and would make people worry or think that had a heavy night the night before so I use my last bit of energy to try and keep them open, but not in a scary way. I am cold, really cold. I want someone to scoop me up, keep me warm and blow energy and Oxygen through my body. I feel like all the blood in my body has poured out leaving just cement.
Most people are wonderful and thoughtful and frequently overwhelm me with kindness and love. A few are not, they don't understand and make assumptions and judgements, which they cannot be blamed for. I cause them more work, I am not a fair 'team player', I do not contribute my share of work and quite possible do the opposite. Twice this week my husband has had to drive me home from work at lunchtime, I've had to make the usual phone call to explain that I need to go home and that I am very sorry but I am unable to work. I walk past everyone else on the way to the car, they are moving tables, setting up displays, working together, getting ready for the open evening. I am walking to the car trying to look as normal as possible, must not fall over. I feel like I could possibly collapse at any point. Breath, breath, breath. I feel like I'm walking out of life, a life I can no longer be part of. My body won't let me. Must smile.
"You must have been someone really terrible in a past life, so many terrible things have happened to you".
No.
I have three totally amazing kids who astonish me with their strong personalities every day, so different yet all the same. They love life, they laugh, they love, they play, their imagination and creativity astounds me, and it never stops. Hugs, "cuggles" (my baby has just turned three and she is especially cuddly), they have a remarkable sixth sense, they know when I'm feeling even remotely down and jump on me and attack me with kisses, cuddles and tickles. They ooze with so much love and passion. They feed me their love. They keep me smiling.
My husband is my favouritist. He keeps me shining brightly, and lets me be me. He makes me laugh and feel so loved. I am so lucky. Surrounded by awesome friends who are bonkers/weird/beautiful/spirited/fun/kind/smart/genuine. And they love me.
So no, my life is not terrible, it is incredibly magical, full of wonder and love and warmth. We all have challenges and sometimes I find it really difficult like I'm getting beaten down with a stick and before I have even opened my eyes I get another whack, but all it takes is one morning kiss, one cuggle, hearing one laugh or seeing one smile, and I get back up again.