When my MS symptoms first struck and I was in limbo, not knowing what the heck was going on with my body, I was desperate for the aches and tingles and numbness in my legs and feet to cease. I would lie in bed at night silently screaming for my legs to just feel NORMAL. The delay between each hospital appointment in the lead up to my diagnosis would send me loopy with frustration – ‘HURRY UP AND FIX MY LEGS,’ I would inwardly yell. Zip ahead to the day of my diagnosis, the pain and numbness was still there and, I now knew, would always be there – forever and ever and ever.
It’s a tough ol’ thing to get your head around. Was I seriously never going to feel my feet again? Were my legs always going to be this heavy and uncomfortable? In one of my early clinics with my nurse I remember asking if I would ever feel normal again, her reply? “This will become your new normal” – Urgh… I don’t want a new normal – I just want my normal to be normal!
Zip even further ahead to the present day and it mortifies me to admit this, but my nurse was right – this is my normal now. I’ve completely forgotten what it is like to feel ‘normal’ by most people’s standards. What is it like to feel light and springy and unencumbered by an invisible weight? I’ve no idea! What is it like to feel the ground beneath your feet when you walk? Not a clue! Yes, it still gets me down sometimes but, you know what? That’s ok. I’m still living an awesome life with awesome people in an awesome city.
Besides, who wants to be normal anyway? It’s way more fun being different… right?
Just read this between appointments at Queen Square. You are so right! Haven’t felt my feet or hands for 11 years so it’s normal now. I like to think I’m special to have this, after all we’re only given what we can cope with.
Keep the posts coming, I’m sure you’re helping masses of people with your positivity!
Caroline x
Sent from my iPhone
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Yes I agree best to be different ,by the way love reading your blogs
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Now I’ve transitioned to SPMS heavy aching legs is the norm but very occasionally I feel like I used to and I feel elated for a few hours then I go back to the painful feet and stiff legs again. However I’m still Happeeee and get taken out by my loving husband and see friends and I will not let this bar steward disease beat me. MS in many ways makes you stronger and puts your life in perspective about what really matters, which is not having a tidy house but having experiences and having good family and friends. Love reading your blogs Wibbly😊
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Normal ? What’s normal ? Normal is not being able to feel my finger ends, but my palm being so sensitive I can’t touch it. Normal is having a leg encased in concrete. But ….it could be so much worse !
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Absolutely Emily, if one thing MS teaches you is how we manage to make the best of life with our wee friend MS 🙂
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