It’s all been a bit crazy since that first day of the New Year came peeking from behind that cold, frosty door. It’s now an icy, jaded Saturday morning in the north-west of Dublin, and the RBS Six Nations rugby tournament just started.
Utter bliss so. Red cheeks from absolute delight.
On Monday, I have a new appointment with my neurologist, and with two separate eye doctors in hospital a few days later. Somebody should let me hire a very fancy suite in the hospital, as there’s no point going home and back again twice afterwards, especially since my energy supply is limited.
Am I dreading my neurological checkup? In a way, yes. After 8ish years on my DMD (Disease Modifying Drugs) Copaxone, it just doesn’t work anymore. The four-month relapse last year was proof enough. The idea of relapsing again is a scary one indeed, so I aim to find the right words and ask for an upgrade of my therapy.
So… New, oral meds please instead of being my own sniper looking for the right target on my skin every single day. It now resembles a needle pillow of plunging a syringe into my fair skin the last eight years, so it deserves a bit of a break. In those eight emotional, painful, adventurous and often tiring years, I swore, wept and wished for something better because in all honesty, I eventually just felt despicably bothered by “the” unsuitable needle.
No more, so.
Too much going on. Trembling in my boots of fatigue. Not quick-witted anymore, I now let someone else say snappy, appetizing and cheerful MS jargon.
Never say so that the life of an ill early-retiree is dull or devoid of any activity. In fact, I’m so hard-pressed for sleep at present that I feel like I am walking on a tightrope between hospital appointments when I should be doing, well… not much really aside from some online advocating and writing.
I’ve simply crammed so much into the first five weeks of the year that I need to keep checking my calendar and agenda to recall what exactly I managed to squeeze into it so far. If I try to squeeze in anything more before the end of this month, I’m afraid there will be a massive brain bomb coming unto a very unsavoury finale. Time to pull the plug so on several ideas.
I can hear you all think, “Well, just sleep then!”
If only it was that easy.
Trying to give myself permission to sneak in extra bits of sleep often makes me feel guilty. Being worn down from waking up to going to bed does take its toll as you become cranky, eat whatever you can get your hands on and feel like disconnecting from society altogether. Scheduling off-time seems the only thing you can think of but when the time arrives to unwind, you feel guilty.
You might feel like a disappointment to certain people because they say you’re now a different person with new responsibilities to take care of. You feel like a liability when you used to be quite independent with a strong mind. You feel ashamed for not “being you” anymore.
But why feel this way? I torture myself for something I do to myself but in return, need to give to myself. When excruciating pain happens, it stops me dead in my tracks. Hence, I want to achieve what George Bernard Shaw so aptly said, “I enjoy convalescence. It is the part that makes the illness worthwhile.” I bet he wore a Superman suit when he wrote this quote because I try to enjoy convalescence, but simply want to keep on showing the world that I inherited superhuman strength from my mum.
Nevertheless, the fact is that being chronically ill changes your life, and there are hidden benefits of perspective to being ill. Since they are mostly an unknown factor, I don’t think of them that much. It is worth noting though that people at the end of the day, are just human, and nobody is ever 100% perfect.
Ergo, the benefits of having MS is that I met my other, weaker self, and I learned how to be strong and wise before my own eyes, and at the speed of light. Even E.T. couldn’t follow me on his BMX bike. He tried, the little fella, but lost my phone number. Go figure.
Because of wising up while not having one grey hair on my head yet, I literally became my own doctor, psychotherapist, pharmacist and every so often, nutjob. I gathered more wisdom in one year with MS than I did in seven years of employment in a foreign country.
Saying it was an amazing period full of entertainment would be a lie, but being an eternal optimist, I try to squeeze every bit of sunshine out of every situation. In the last five years so, I genuinely grew as a person: I found myself and found my place in the grander scheme of things. Believe me, there truly is a “grander scheme of things.” What’s even more important, I am happy and at ease with my now five-year-old new life.
Philosophically speaking, it was a mental manifestation on a ginormous scale, and I might not have experienced it was it not for getting MS and being retired at the age of 36.5. If trigeminal neuralgia (TN) would have sought out a different person with MS, I might still be as goofy like Homer Simpson, but I had to learn how to tiptoe around being chronically ill. Remember Homer literally being caught between a rock and a hard place in the Simpsons movie? That’s what life with MS, and especially TN can feel like.
But, as unscrupulous as MS and TN is, as wonderful can stretching out my legs in a cold bed be. Or standing in a shower with soft-falling water drops massaging my head while avoiding my face. Or talking with close friends and family who know everything about me, but still want to be around, no matter what.
As time goes on, the combination of the words “better” and “MS” hardly guarantees a happy, problem-free long-term relationship. I try to improve my life, and to get what I aim for and love. You just have to try that little bit harder every single day.
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with a MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
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