Recently I took part in the MS Society’s #KissGoodbyetoMS campaign for #MSawarenessweek.
I was off sick from work, full of cold and struggling with my chronic MS fatigue. I desperately wanted to take part in this awareness campaign so as soon as I was feeling ever so slightly better, I put on some lippy and took a photo.
Unfortunately, this photo demonstrates one of the most frustrating things about having MS; it’s an invisible illness. Anyone looking at the photo wouldn’t think that I had shooting pains in my left hand and was so overwhelmingly fatigued that I was on the verge of tears. I look fine so I do understand why people can be sceptical and maybe don’t believe I wasn’t well. It’s a shame that unless I’m sneezing or coughing, I feel like a fraud and people won’t understand that I’m not well.
MS affects me every minute of every single day. I still work full time but every day is a struggle. A struggle, however, that I will continue to fight for the rest of my life. Luckily I have great friends, family, and a fantastic husband so I’m well supported by those around me. This gives me the strength I need to fight this disease.
My life does somewhat revolve around my favourite place in the world, my bed 😴, but that’s okay! I’ve learned to be happy to restrict my social activities in order to not tire myself out even more. Every Sunday I snuggle down with my weekly planner and write up my plans for the week ahead. This helps me see at a glance what I have on and if I should maybe cancel a couple of things or book in some more rest time.
I’ve learned to prioritise what makes me happy in life and focus on those activities. I try not to put pressure on myself to see all my friends all the time and do all the activities. I also try and avoid having any plans on a Sunday as this time is so precious to me. I sort of treat it like a healing day to rest and recover from the past week, getting ready for the new week ahead.
This now makes me sound like I never do anything apart from going to work then going to bed. This isn’t true. Well, some weeks that can be true Monday to Friday but I do plan my time out to make sure I see friends, even if it’s just for a Saturday afternoon coffee. My husband and I also love our holidays so we plan and pepper those throughout the year. He is so considerate about my MS so we make sure we take each day as it comes and balance our holidays with exploring and having fun but also enjoying a bit or R&R.
I feel like a broken record but being permanently sleepy is the most tiring thing in the world.
I shared this photo on Instagram recently. It’s a thank you to my supportive husband:
So once again, thank you, Joe. I don’t know what I’d do without you!
There might only be one week left in May but there’s still time to take part in the #KissGoodbyetoMS campaign. Whether it’s sharing a selfie as I did, or giving up something for the week – this could be makeup, chocolate, using your phone before bed, anything!
Together we will find a cure for MS. With so many horrible things happening in the world right now, let’s try and focus on the positives and do everything we can to get some happy life changing stories in the news!