I'm generally a very bubbly person, I have a full time job and I like to socialise. I often hear 'you don’t look tired' or 'but you look so well'.
I don’t blame people for thinking I'm fine and maybe even a bit dramatic when it comes to describing life with MS. But I'm not overreacting. When I do explain, many people are sympathetic and say, 'I don’t know how you do it, I couldn’t!'. I tell them that either I fight this every day and make sure my life is the best it can be, or I give in. The latter will never happen.
Relapses and flare ups
Since I was diagnosed aged 19, I've had a variety of relapses. From barely being able to walk, feeling like I’m trying to wade through treacle and looking drunk as a result, to double vision resulting in extreme nausea and hardly being able to stand up or walk in a straight line.
These were some of my more extreme relapses that could only be helped with a course of steroids. There are many other symptoms which flare up every now and again to keep me on my toes. Explaining them to others can be hard – so I’ve described them below to help make them more visible.
Power surges in my body
Shooting nerve pain often flares up in my left arm, especially when I'm feeling particularly stressed. I can be sitting in a meeting at work then suddenly wince as my left hand is seized by sharp, lancing sensations, like an electric current surging from wrist to fingertips.
Itching and scratching
My body can be suddenly overwhelmed by an intense itching sensation from my head to my toes, leaving me vigorously scratching and rolling around in pain. Usually if I get dressed as quickly as possible, it can help relieve it as my clothes are touching my skin and gently itching. I also use a dry towel to scratch the affected area rather than my fingernails.
Due to weakness, my limbs often feel like they have weights strapped to them. When I’m already struggling with fatigue, trying to drag my cumbersome arms and legs around is not helpful. I look incredibly clumsy as I trip over my own heavy feet.
Typing with gloves
When I first started dating my now husband, I was on steroids to correct my left arm, which was completely numb. This made it very difficult to work as I use a keyboard frequently. The best way to describe it is like trying to type with three pairs of thick woollen gloves on your hands.
My brain feels like it's shrouded in a thick fog, making it difficult to think of even simple words. I’m sure other people don’t notice as much as I do when this happens, but it leaves me feeling a bit incapable, especially at work. My mind goes blank and I can’t seem to find anything in it.
Tired all day
The best way I can describe my fatigue to people without MS is to think of when you woke up with a terrible hangover and struggled to lift your head off the pillow, as you’re overwhelmed with unbearable tiredness. This is how I feel all the time. I wake up tired, I’m tired all day and I go to sleep tired.
I work from home some days, and have learnt to be very careful during the week. It’s important that I rest a lot and balance busy times with downtime – sitting on the sofa with my husband binging on Netflix and playing a board or card game. Luckily, I’m very happy doing this!
Although it's frustrating that people struggle to understand how I'm feeling, in recent years I’ve changed my mindset to focus on the positives in my life. I'll continue to fight my battle and raise awareness and understanding of MS in order to help others.