Maggsbunny

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8 years, MS.

with 5 comments

It was in the back of my mind that there was some significant date in October which I was supposed to remember but I couldn’t think what it was.

Maybe my granddad’s birthday, I thought to myself. But no, it was something else.

Today, it dawned on me. My anniversary of being diagnosed with MS had passed on the 17th and for the first time, I had forgotten it.

8 years since diagnosis. Another2 years added on since my first medically documented symptom (optical neuritis) which tallies up to 10 YEARS. Hectic.

I was told that most people with MS are in a wheelchair after ten years with the illness. And look at me today! Not doing marathons, but sure as heck not in a wheelchair, either.

I was actually in a wheelchair 4 years after my diagnosis for a year. But through the Grace of God and Solu-medrol and Fingolimod, today I am able to walk normally and go where I please. Big nod to those persons in the white lab-coats. If I had had MS before the advent of corticosteroids, I would surely be dead today, so fast and aggressively was my MS progressing.

Anyway, life has gone on and I MISSED MY ANNIVERSARY.

I have been meaning to do a post on acceptance for a while now. Accepting a chronic, life-altering disease like MS.

When I was first diagnosed, I read about this thing called acceptance.

How it could take years and years.

How stupid, I thought. I accept that I have MS. How can I argue with an MRI scan, a lumbar puncture and various other diagnostic tests that had showed I had MS.

Actually, at the time the overwhelming feeling I had was relief. What I was feeling had a name and I was not going nuts. It was not all in my head.

But yes, I accepted that I had MS. Scary sounding, grown-up disease. I had it. Me.

Not for long, though. I read books on how people had reversed MS with alternative life-styles, healthy eating, exercise, supplements etc. I could do it!

I read up on MS all day. Went on chat-groups, made friends with other MS-ers. It was on my mind all day long. It became my identity.

I was floored when my extremely dedicated attempts at reversing MS failed. I got relapse after relapse after relapse and fell into a void. Before I could wipe out my eyes, I was wheel-chair bound, bed-ridden, mostly. Legally blind. It went rough there for a couple of months.

I thought to myself, well, this approach sure hasn’t worked very well for me.

I took a new approach. IV cortisone and LOTS of it.

(By the way, I am extremely lucky that IV cortisone works so well for me, because there are some people who get no relief from it at all).

I had always taken the corticosteroids for a relapse, but I started taking more than was medically advised. Way more.

One is only supposed to have an IV course once every six months. I started taking them every month. I had to switch doctors to even get away with it.

Thankfully, I didn’t get a serious opportunistic infection, which could easily have happened.

That vague term opportunistic infection didn’t scare me at the time, but subsequently I have found out that it can be a death-sentence.

Then came the Fingolimod trials. Best move I ever made and I remain convinced to this day that it was the Hand of God that directed me to the trials. I remember breaking down crying and pleading with God to show me some way… and He did.

I have come a long way since starting on the trials back in 2007. It has happened so slowly, so gradually, that sometimes it is difficult to look back and see the huge progress. Somehow, I am starting to block out the wilderness years. The memories are not at the forefront of my consciousness anymore.

(I remember, for years I coudn’t even walk in my dreams. It was so sad.)

Fast forward to 2009.

I decided to break free of the mold that MS has cast me in. I wanted my life back, even if I did have to make a few adjustments.

That is why I did my grade 7. It was an ambitious dream, having lost quite a lot of feeling in my hands, but I guess it was my way of giving MS the finger. (Pardon the pun).

Now I dream of turning it into a career. The lost career that I have shed big crocodile tears over in the past. I so want to be financially independent.

Not independant of Michael, but bringing in my share. Paying my way.

I plan to start giving tuition in music as soon as the school’s exams are over. And I’m hoping that this will pay the way for me to further my studies in music. Maybe even a teacher’s licentiate in piano and a BMus.

I’m excited about it.

Have I accepted MS? I  think I finally have.

These days, it’s not an all-consuming desire to get rid of it. I am living with it. I have learnt how to manage it better.

I have a healthy respect for MS. I know it can throw a curve-ball that I will battle to stand up from.

But battle I will. In some ways, it still affects a lot of my decisions, especially the big Will we have a baby one.

But it doesn’t rule my life anymore.

I know that the reason I have come to this place of acceptance is because I have recovered so hugely. Even though I still have plenty of remnants from my various attacks, I am living a normal life today.

I know I will have more relapses. I am having one right now. And that is okay, too. I will cope with it. It is not the end of my world, as it once was, just an (extreme) inconvenience that has to fit in with the rest of my life.

I used to think that accepting meant giving up hope and being apathetic.

Now I see that that is far from the truth.

I still want to get well, be as healthy as possible. But in the meantime, I’m not sacrificing my life for it.

I no longer read all I can about MS. I am frankly a bit bored with the topic.

My symptoms are my symptoms. They are what they are and I can live with them.

That is the bottom line – I can live with MS. And I will.

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Written by Maggie

October 23, 2009 at 12:40 pm

Posted in Uncategorized

5 Responses

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  1. Wow that was powerful and strong. You sure have come a long way and yuo have coped marvelously and your attitude and tenacity are commendable. I am so glad you are able to focus on more fun and interesting things now. And that it is now just a part of your life.

    Well done and keep at it!

    JaneW

    October 23, 2009 at 1:53 pm

  2. Maggie, I feel so honored to have followed you on your journey to acceptance. Without your desire to fight, those meds would not have made a difference. Kudos to the white lab coat people. They helped but YOU DID IT!

    You are an inspiration!

    Courtney

    October 23, 2009 at 3:27 pm

  3. What an amazing post. It made me incredibly sad and incredibly happy at the same time. Somehow, I never knew how bad your symptoms were at one time. Your attitude, your strength and your reliance on God are so apparent! I feel so blessed to somehow have “met” you even though we live on opposite sides of the planet.

    Laura

    October 24, 2009 at 8:03 pm

  4. We are so proud of the way you are handling this Maggie and we know it isn’t easy.

    You go girl.. !!!

    Love

    Mom

    xxx

    Mom Archer

    October 24, 2009 at 8:54 pm

  5. Sjoe, 8 years already. You know, I often think of how you have recovered. How you went from being wheel-chair bound to where you are now. Living a normal life. I believe the medication had a big influence but I know too that your attitude towards it has pulled you back into a normal life.

    You are amazing

    Melany

    October 27, 2009 at 9:54 pm


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