In the 4 years after diagnosis, I didn’t have any full-on relapses. I have symptoms all the time, I often feel like death warmed up, and there are days I can barely put one foot in front of the other. But, I’ve been able to live with it and, for the most part, get on with life regardless.
Winter time is my friend. When its cooler and dark, and I can stay indoors wrapped up and in front of the fire. I usually don’t feel too bad during winter. The worst time of year for me is when spring turns into summer. That time of year when the rest of the country is hoping for heat and sunshine, and to lie out in parks during their lunch, you can usually find me skulking indoors.
This year I started feeling “off” in April. It usually takes me a few days to cop on to the fact that I don’t feel well, but I can remember feeling the onslaught of exhaustion at Easter. My leg was annoying me; my arms were heavy and awkward. I was off-form in general. I was still able to do my normal day-to-day stuff, but it was getting slower and laborious. I wasn’t overly worried, telling myself and others “well, this happens every year” and ploughed on.
Six weeks of feeling unwell later, in the last week of May, a full-on relapse hit me smack in the face. On the Wednesday evening my eyes were unusually sensitive to light. After work we’d headed off to do our grocery shopping and the lights in the shop were too bright for me. I was walking around with sunglasses on, like an eejit, squinting and making faces at everything. It’s grand, I thought, I’ve been busy at work, the pc has left my eyes tired.
Thursday morning I woke up feeling ok. My eyes were a bit sore, but my house is dark and working from home means I can keep the blinds down on a sunny day. I worked all day, feeling a bit uneasy, but nothing I could put my finger on. After work, my husband came in to the room, and when I turned my head to look at him, he was blurry. Isn’t that funny, I chuckled, I can see you in soft focus. The blurriness stayed all evening, and I headed off to bed early.
By the Friday morning, I had complete double vision in my right eye. I convinced myself it was tiredness that I needed a BIG cup of coffee to wake up. I sent the hubby off to work as normal, and set myself up at the pc to start checking my emails.
Two BIG cups of coffee later, and my eyes were still banjaxed. I was sitting at the pc, typing with one eye closed. Not very productive or sensible. I have been told I am stubborn when it comes to my MS, but on Friday 30th May, I gave in. I called the GP, got a referral letter, and packed my bag to go to Sligo. On the Friday of a Bank Holiday weekend. Hey, if you’re going to do it, do it right!
I’d never had Optical Neuritis before, it was a new symptom for me to deal with. It’s a pretty hard one to ignore too. It’s very unnerving not being able to see if something is in front of you. The journey to Sligo was awful. The double vision meant that instead of just seeing cars on the opposite side of the road, passing us, I could also see them coming towards our car at an angle. It also made me nauseous, which isn’t pleasant on a 2.5 hour drive.
I got admitted into hospital for 5 days, I had to have an IV steroid. Once a day, I’d get hooked up to a drip for about half an hour. The rest of the time I slept a lot. I was exhausted from the relapse and from the heavy dosage of medication. After feeling off for two months, it hit me like a ton of bricks. I needed to rest and recover, and as I couldn’t escape the hospital, I took advantage of the time away from normality and rested up.
When I got home after the 5 days, I wasn’t back to myself at all. In fact, I felt worse. My eyes took another week to clear up, and I was still on heavy medication. It’s only now that my family members have started commenting on how much better I look. I can honestly say I didn’t realise how unwell I was until I started to get better.
I sometimes think I don’t have MS, that I’ve imagined it all and that I am spoofing everyone. The relapse made me realise that it’s not all in my head. I had a follow up appointment with my neurologist last week, who said other patients have made similar comments. I guess when we’re all functioning as normal we don’t realise how hard our bodies are working to fight this illness. And sometimes we have to give in.
But, I am a stubborn article, who doesn’t give in easily. So, yeah, I blame the World Cup.