Multiple Sclerosis
Diagnosis
In my 20's I was eventually diagnosed with Relapsing Remitting MS. I say eventually, because I had had optic neuritis (double vision) before, and a link to vision impairment and MS was not made at that time. A few years later I had optic neuritis again (central vision loss) and the treating ophthalmologist suspected MS right away.
Following an MRI scan of my brain, it was confirmed that I had Multiple Sclerosis.
If you're reading this is likely because you are experiencing something similar, or you now someone that is. The types of MS seem to increase in severity as you go on to Primary Progressive MS and then Secondary Progressive MS.
Relapsing Remitting MS can be mild and in some cases, very manageable. Once I had a better understanding of what was happening to my body, and what this diagnosis meant for my future, I thought I could be one of those cases. I will manage the shit out of this disease.
Denial
This feeling of relief was short lived. I was lumbering around with medication paraphernalia, an intense schedule of appointments, pitying looks and kid-glove conversations with every one I knew. And I couldn't see why. I was a very fit and healthy mid-20 year old. Why was I being treated like I was sick?
Newsflash - look at your MRI. Read the radiographers report.
I suspect that feeling that newly diagnosed people feel, to overcome and survive disease, is quite a normal response. But what I've since worked out for myself, is that unaware, unaccepting response is simply a tarted up version of anger and denial.
Why am I being treated like a sick person? Watch this: I'm not sick.
And this was me, and largely still is. Denial has served me well, as I have found and married a loving partner, bought four houses, excelled in my career, qualified with firefighting and emergency operations credentials (a physical fitness level higher than most people I know).
All of which I'm very proud of myself for, but lets not kid ourselves.
Acceptance
A chronic illness diagnosis is stifling. It’s a forever thing. It’s huge. Sit in that space as long as you need, but don't stay there alone. Read, talk, ask questions, google. You are one of so many, all with our own unique version on a similar theme. Your disease will run its own course, this you can not control. What you can control though, is how you live your everyday.
I have been on Betarferon, Tysabri, Gilenya and Lemtrada. The only treatment pathway left for me now if I relapse is bone marrow transplant. All this sounds terribly serious. And I suppose it is, but it’s just what my life looks like. And maybe yours. And maybe hundreds of thousands of others too.
And by this virtue of the fact there are so many of us dealing with this, versions of, or struggling generally, we cant possibly ever be in this alone, not at all.
No one should have to feel like they are doing this by themselves. Hear what I've been through and introduce yourself to these ways of adjusting. We cant control the disease, it will take its own path. All we know with a relative degree of certainty, is that this is our one shot at life, so take control of precisely how excellent you chose your life to be.
Be ferocious, you are your limit xx
