I try and stay positive, I really do. When I shared that I’d recently been confirmed as having secondary progressive multiple sclerosis (SPMS) on my blog and on Instagram, everybody was absolutely brilliant, giving me so much support and praising me for working hard to keep going, despite the dark diagnosis. And I am generally positive. As regular readers will know, I do try to keep as healthy as I can be through diet, exercise, and meditation and I truly think that doing that helps to keep my mood stable to some degree. However, as positive as I can be, I can also be downright miserable and grumpy and sad and scared (just ask my husband). It’s not something I like to share too much on social media; it makes me feel so much better when I share uplifting content rather than depressing content. But that’s not the true face of MS. The truth of MS is not just in damaged myelin, strange symptoms and tiredness, it’s also people feeling happy one minute, even optimistic, and then completely down in the dumps the next.
The truth of the matter is, I hate that I have MS.
I hate the fact that I walk with a limp, that I drag my foot so that it makes an annoying shuffle sound and that it feels like I’ve got a sandbag attached to my leg 24 hours a day. I hate that I have to use crutches and a scooter. I hate the fact that my disability impacts on every area of my life – work, relationships, hobbies, social life. I hate the fact that I can’t run anymore, that I can’t do heart pumping exhilarating exercise. I feel jealous of friends doing the Great North Run, or attending fun Clubbercise classes.
I hate the fact that I have to plan everything – I have to check to see what access is going to be like, whether there will be a place to sit, or whether the street will be so cobbley that I can’t use my scooter. I hate the fact that I have to plan my days around my need for a nap and that going out just for an afternoon means that I have to spend the whole of the next day recovering. I hate that I can’t just hop onto a train and go out for the day without having someone with me to help with my scooter and I hate that so many lovely areas (beaches, cities, forests, stately homes etc etc) are inaccessible to people with mobility issues. I hate the fact that I adore London, but have not had the guts to visit it since my mobility has worsened, as I have heard so much about how the Tube is inaccessible for the most part.
I hate the fact that I haven’t felt rested for a good couple of years now. I hate that I wake up in pain despite taking drugs to try and stop the crippling cramps and spasms of my legs and toes. I hate that my husband can’t cuddle me in bed easily because my legs go into spasm.
I hate that I can’t go down to the water when I go on a beach with my kids and that I can’t paddle through the surf because of lack of disabled access on most beaches. I hate the fact that I can offer to help out at my daughter’s Brownie class but that I have to be sitting down for most of it and that I can’t carry things around. I hate that I have to ask someone to help me with opening doors when going to watch my son swim, or going to work, because of a lack of disabled access doors in NHS premises and leisure centres.
I hate that I can’t even clean my house easily by myself. I just want to be a ‘normal’ person who is able to carry out every day boring and mundane tasks and activities with ease. I resist the urge to get a cleaner; not because I don’t want a tidier house, but because I want to make the choice to have one not because I need one but because I simply want one.
I hate that MS is degenerative and unpredictable. That I have no idea whether this level of disability will plateau or whether I will continue to decline, just like I have over the last 6 years. I hate the fact that I won’t be able to dance at my children’s weddings, if I even live that long.
I hate the fact that I have to choose between my work and my quality of life.
I hate the fact that I am almost 40 and still rely so much on my Mum and Dad and my husband’s family too. They all offer so much help and support, I am so, so lucky and appreciative. But I don’t want to have to rely on them (or my husband, for that matter). I want to be able to help my parents, not have it the other way around. I want my husband to see me as the able, independent person he married, rather than a woman who keeps having problem after problem that impacts not only on my life but also on his and the children’s.
I hate the fact that my kids don’t know the real me, that they will never remember me as an able mum who can easily do what they want to do and go whether they want to go. I’m sad that they sometimes have more responsibility than other children their age because of my difficulties.
You see, there is so much I hate about MS. I’m so sorry for the depressing post. I have written before about positive things MS has given me but I’m feeling a bit melancholy today and I want to get it out there that just because I often share things that are encouraging and upbeat, it doesn’t mean that I always feel that way. This is the truth about my MS.
Really hoping that everyone out there is feeling a bit better than I am at the minute, I guess the confirmation of SPMS has really has knocked me sideways even though I suspected it. I’ll be back to my usual self soon – thank you letting me splurge it all out