My two year MS anniversary

This was post republished with permission on Uninterrupted on 17 December 2015 YouShare on 8 February 2016.

 

Two years ago I could not have foreseen what MS would bring to my life. And no, I am not deluding myself with mindless positivity. I despise MS, although I have grown used to it. My surprise stems from the fact that I am a much happier person now than I was before my diagnosis.

I have received such support. And I know who loves me. That is not a childish comment – I mean that I have learned a hard life lesson, and I now value it as such. Some people stick around, some don’t. And some people… Well, I don’t want them to stick around. I realised who I love when I think about who I want to visit me at my worst in hospital. Old friends have returned, and new ones have walked in the metaphorical door.

I am a better person (that sounds trite, but it also happens to be true). More compassionate, more empathetic, and with a far greater tolerance for people who are struggling. I have turned into an advocate.

But I also have stricter boundaries. I have no patience with incompetence, shallowness, lateness or half-truths. Those who know me in person know I was never great in this regard… But now I just don’t care. I may be in hospital tomorrow (or tonight, it has happened that way), and I no longer choose to spend my time with people who waste it.

I have something of a prejudice against lifestyle diseases… If you have your health, for God’s sake make the choice to look after it.

And I know for a fact that it is possible to know more about MS than the doctor or nurse you happen to be speaking to – even in a country with a decent health system like Australia. I have corrected doctors and negotiated with them. And I admit, I have shouted at them. I have no doubt I will do all three again.

I settled into some hardcore medication, albeit with the occasional hiccup (note to self: forgetting to take the tablet for 24 hours is a bad idea).

I experience MS pain in my hands and major joints. There is no rhyme or reason to it, no cause and no cure. It is horrendous. I lose hours when it happens, which tends to be in the early to late morning. I can’t predict it, I can’t stop it, and I sure as Hell just can’t take a handful of Ibuprofen and work through it (trust me, I’ve tried). When it happens, it is debilitating.

I changed my diet. I am largely processed food free. It sucks. But it also rocks: I am quite a bit lighter and my skin has never looked so good. I hope to Hell it helps the MS too.

I failed to exercise… And I don’t have an excuse. My neurologist laughed at my ‘I do incidental exercise’ approach.

But I do have an extremely high tolerance for risk. MS gives me complete uncertainty… So I find myself willing to take my chances on things I probably shouldn’t.

I am persona non grata with the financial powers that be. Insurance agencies won’t touch me, even with a risk premium. Aside, of course, to provide me with Death Cover (which I now have). Technically, I am eligible for the NDIS when it rolls out, meaning the Commonwealth Government classifies me as disabled. But I am not eligible for any disability benefits from the State or Commonwealth Governments… Go figure. I have a decade of professional public policy experience and I can’t figure the rules out. But consider it a lesson learned: go get your income protection and life insurance now, don’t wait for whatever magical date you have in your head (I was waiting to draw down my mortgage and roll it all up together).

I now have a will and three different types of Power of Attorney. Yes, there are three types – medical, financial and guardianship. Go get them. Seriously. Once you take the time to think though the ramifications of not having one (and yes, people like you sometimes need them), it isn’t so hard.

I quit my career. They say most people with MS stop working within ten years. I skewed the average: I walked out in less than a year. But I am building a new one. Writing, advocacy, storytelling. And damn, it feels good.

I have a partner, who I met me after my diagnosis. Two months after, when I was still recovering from my first episode and the methyl prednisolone that knocked me around for weeks. I shudder to think at how I looked and acted when he first met me. Looking back, I realise how sick I was. I used to grow tired just leaving the couch at that point. But he saw through the sickness, and I am forever grateful.

And finally, while it has nothing to do with MS, a quirk of fate has made me a de facto grandmother in an ever-expanding American family at the age of 34. Who knew.

Anything can – and does – happen.

 

19 comments

  1. Dear Astrid,

    My name is Ashlee. I’m co-founder of the Youshare Project, with the mission to connect people around the world through true, personal stories. I recently stumbled across your blog and read the above post entitled “My Two Year MS Anniversary.” It’s so honest, beautifully written, and compelling. I think it would make a wonderful youshare, because as you know sharing your own personal story helps others living with MS or even newly diagnosed with MS know that they are not alone. It also offers friends and family members of those diagnosed with MS understand what it’s like and the challenges their own loved-one may be facing.

    If this sounds interesting to you, I would love to email you directly with more information and formally invite you to share your story with the project. You have my email address and website. I hope to hear from you soon.

    Best,
    Ashlee
    http://www.youshareproject.com
    ashlee@youshareproject.com

    P.s. I saw on your personal website that you’re reading “On Writing Well,” by William Zinsser. That is my all-time favorite book on writing 🙂

    Liked by 1 person

  2. Thank you for being so candid and open about your reality with MS. I find your blog very inspiring! I, too, write a blog about living with MS/TM and I’d love for you to come visit me at heyyoudontlooksick.com I look forward to reading more~ ❤

    Liked by 1 person

  3. You are doing much better than many people I know after 10, 20 years…being honest about it. I always say it is a journey, not a destination, and you have so aptly described that. I really appreciated your comments about boundaries. You are spot on! I just had that conversation with my husband last night, and I have been dx’d for 18.5 yrs.

    Liked by 1 person

    1. Thank you Overwhelmed By Joy.
      I agree… MS is random and changeable and nothing ever stays the same… And so life with MS is downright challenging.
      I find setting those boundaries helps me: It just takes a little stress out of life. 😉

      Like

  4. I read this and burst into tears. I am attempting to be a writer but financially I’m on my own. The emotional support from friends and family is great, but the invisible symptoms means that everyone thinks I’m so damn capable. I have quit my career, a year after diagnosis, with all around me encouraging me to pick it up again. And I might have to. I haven’t had any luck getting any financial assistance – my appearance is of someone capable of full-time work.

    A semi-blind friend and a friend who is wheel-chair bound (neither with MS) both told me that my limitations are in my own mind. I admire them both so much for their determination in the face of discrimination and adversity, that I failed to realise how unique different disabilities are. I wouldn’t say one disability is preferable to have than another. But there’s something so terrible about invisible symptoms. It makes me feel like I’m not taken seriously. I worry that support will only arrive when/if I get significantly worse.

    I’m getting lots of ideas and inspiration though through your blog posts, Astrid. Thanks for your honesty. You’re very talented and the MS community is all the better for you being here.

    Liked by 1 person

    1. Many thanks Sabine.
      You are the second person to tell me you cried… That was not the intention! But I will take it as a compliment.
      Writing is not a brilliant choice if one thinks of the finances: I understand that all too well.
      I also understand the problem of looking well and not being well. It is a diabolic catch-22 that is hard to overcome. I don’t have the answer… Although my current approach is to ignore the reactions of other people and do what I need to do (and I also wear a Medic Alert bracelet and flash it around if I think anyone is giving me a dirty look).
      I wish you the best of luck, with your writing and with your MS.

      Like

  5. Congratulations on getting to two years and still having a positive attitude. I was just logging on to think about writing a post as it was my 1 year anniversary just a few days ago. It gives me hope that I will still be positive at the next anniversary! I hope you’re still positive at your next one as well!

    Liked by 1 person

    1. Thanks Jennifer.
      MS is weird… I’m not conscious of a positive attitude towards MS, I just happen to be quite happy at the moment.
      Congratulations on your first year… I found the second year much less traumatic than the first, so hopefully you will as well.

      Liked by 1 person

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