Christmas was uneventful and relaxed. I thought I could get to like ‘relaxed’.
I was apprehensive about travelling to another country while newly unwell. I joined Myaware, the charity that led on raising awareness about myasthenia in the UK. They offered lots of support to people like me, and had provided me with a health passport, among other things. They told me it was important to add my details to the passport, carry it with me at all times, and let people close to me know about it. This was vital because so few medical professionals knew much about MG, or had even heard of it. It was especially important that if I needed medical help the long list of dangerous no-go drugs was shared. The thought of needing medical treatment in a country where I didn’t speak the language and trying to explain an obscure disease was daunting. Not enough to stop me going though!
I usually took valium to quell my hysteria before getting on a plane. No longer; Dr D warned me that muscle relaxants could stop me breathing. So I practiced meditation even more in preparation.
I realised this wouldn’t be the only unusual aspect of this holiday. My husband and I tended to trek around, driving and walking as far afield as we could, looking for amazing historical and natural sights to see. We tried to relax on a beach holiday once. It was extremely boring!
I doubted I would be able to walk far now though. Although the mestinon had eased the vertigo and double vision, the absolutely draining fatigue that followed me everywhere wouldn’t permit it. I could easily sleep between 12 – 15 hours in every 24.
The outbound flight was uneventful, apart from having to insist my carry-on bag couldn’t go in the hold when room on board ran out. I carried all my medical necessities in my bag and refused to be parted from it. Once we explained to the cabin crew that the medications I carried around kept me alive, they let me keep my bag with me.
Although I anticipated a laidback break, I still wanted fun. My husband and I were foodies and liked going out to eat and drink wine or cocktails. Of the two of us, I especially enjoyed socialising with people. We had plans to go out on New Year’s Eve, a few hours after we arrived, with family and friends.
After a brief rest, I showered and changed. I concentrated on applying my make up carefully. I hadn’t worn any since the onset of my MG symptoms almost 2 months earlier. I applied eyeshadow and eyeliner as usual and squinted at myself in the mirror. I couldn’t see if it was symmetrical. After closing my eyes for a few minutes, I looked at my eye make up again. Instead of seeing my usual neat cat flick eyeliner, I saw one that was almost straight and the other, my badly drooping eyelid, pointing down instead of up. I cleaned it off and started over, this time forgoing eyeliner altogether. Such a small thing. Not being able to wear my makeup the way I wanted to. When I wasn’t going ‘out out’ I didn’t bother with stereotypical feminine decoration. But when I did, I really did. For years I’d thoroughly enjoyed the getting ready part of going out, the pampering, high heels, glitter and sparkle. Decorating my eyes had always been one of my favourites parts of the ritual. I felt half finished. Being a ‘Completer/Finisher’ personality type (that’s official, I’d been psychometrically tested for work), this did not sit well with me.
Finally off we went to our favourite Punta Prima restaurant. We knew the food would be delicious and the service excellent. We would be plied with cocktails on the house at the end of the night, to welcome in the New Year. We’d been looking forward to this with excitement for weeks!
I was so fatigued. I steeled myself to make it to the end of the celebrations and told myself I damned well would enjoy it. I was not the type of person who gave up easily. I strived. I endured. I’d been through some difficult times and survived all of them. My husband liked to proudly tell people that I was relentless. Like it was a good thing! I usually tried to enjoy each moment of life and squeeze the most out of every experience. This was no different.
As one of our party got a phone out to take photos to immortalise our evening together, I suddenly became very aware of my lopsided, droopy eyelids. I disliked having my picture taken at anytime, but I really didn’t want it taken now. I tilted my head to the side, to try to make sure my worst eye wasn’t visible.
We wholeheartedly enjoyed the meal, we laughed and joked, drank prosecco and wine. As it got closer to midnight we moved outside. It was a warm evening, we didn’t need jackets. The manager brought us brandy and limoncello. We got comfortable and waited for the New Year firework display.
As the fireworks started to go off quite close to where we sat, other restaurants and bars also set off their own. Suddenly I felt disoriented and dizzy. The noise was unbearable. My double vision was back in an instant and I couldn’t look at the fireworks spectacle. I moved away and tried to find somewhere quieter to sit it out.
It was all over in 15 minutes but my sudden dizziness and vision problems didn’t stop. I felt very unsteady and had a pulsing headache. My husband looked at me and knew immediately that I felt unwell. So we, the youngest couple of our group, ducked out and headed home to bed.
The next day we mostly spent relaxing. I found that being outside in the bright sunshine caused both my eyes to practically close. Wearing sunglasses didn’t make much difference, so I took to wearing a wide brimmed sun hat to shade my eyes. This made sightseeing rather pointless!
Towards the end of our holiday we had dinner with friends who were staying about an hour’s drive away. We hadn’t seen them for a few months so they didn’t know that I’d been unwell. I was beginning to dread telling people what had happened; was still happening, to me. But I was also quite conscious that in a social situation like this one, people who didn’t know could easily assume I was drunk. If I was drunk I’m sure I wouldn’t mind or notice, probably because everybody else would be in the same state of squiffyness. I just didn’t want others to think I was drunk before the party had even started.
Out came the inevitable phone and we were all instructed to huddle together and smile for the camera. I tensed, suddenly very aware of my lopsided face. The group ‘photographer’ looked at me and said,
Come on girl, smile won’t you!
I bristled. I wasn’t terribly keen on complying with orders, however well meaning they were. Especially a direction from a man, and not even one who paid my salary and therefore had an assumed entitlement to tell me what to do. I was also thinking that my reluctance to smile and look at the camera has been drawn to everyone’s attention. The opposite of what I wanted was happening. Everyone was looking at me. Were they being polite by not asking what was wrong with my face?
My finely honed fight or flight response kicked in and a carefully cultivated ‘fuck you’ facade came to the rescue.
Sod you, I’m not smiling for you, I don’t want to be in your photo.
I folded my arms and slid my chair back so I was out of the picture.
There was no awkward silence. I guessed I had a reputation for being blunt sometimes. Served me well on occasion too!
Dinner carried on regardless, we were having a fun Spanish reunion with our friends from home. During our main course I noticed my bottom lip felt strange. I put it down to alcohol consumption even though I didn’t even feel tipsy.
The following evening, our last before we headed back to England, we went back to our favourite restaurant one last time. Again, during our meal I was aware of my lower lip feeling odd. Not something I could describe, it was just an unusual sensation.
I had an appointment with my neurologist, Dr D, a couple of days after we returned.
Yes, I called him ‘my neurologist’ now. I had a neurologist. A specialist. Only, I didn’t feel at all special. Just unlucky.
I pondered whether my MG was progressing. Whether I was developing new symptoms. And if that was what was happening, was it escalating quickly? How long did it usually take for ocular MG to evolve into generalised MG? It had only been 2 months since this all started.
Wasn’t this too fast?