Living with MS

I don’t have Multiple Sclerosis but I know someone who does.

Abigail has been in my life in various forms for nearly 10 years. The first 6 years or so she had almost no affect on my life, but in the last 4 she has been somewhat of a bitch. She’s lazy, she’s obtrusive, she does little or nothing to contribute to our family and worst of all there is almost NOTHING I can do to rid her from our lives. She’s not alone either; she has gathered a group of like minded friends and they’re all interrupting my family’s life. It’s like having a troop of hormonal teenagers invading your home.

Abigail is a lesion.

Her and her friends have taken up residency on my wife’s brain.

My wife Marlo was diagnosed with relapsing remitting Multiple Sclerosis in 2004. She moved over to the UK from New York to pursue a career in music and fashion with her then husband. We met after I auditioned for her live band. An audition which I nailed by the way 🙂 I won’t go in to too many details, and there ARE details, but we ended up getting together after her and her husband separated just over four years ago. After receiving her diagnosis Marlo decided the best, immediate course of action was to head to the pub and order a stiff drink, Gin and tonic I believe. There is something wholly British about this simple act. Diagnosed with life changing disease? World turned upside? not to worry, we’ll pop to the pub for a quick drink. Spit spot, spit spot tally hoe! But I shouldn’t be that surprised, although she grew up in New York she was raised by an Irish mother, an Italian father, Depeche mode and The Cure. She loves tea and half pints of Guinness…She’s probably more English than me.

MS affects around 2 million people and is twice as common in women than in men. There are a whole host of symptoms, but for Marlo she suffers from blurred vision, sometimes doubling, numbness in the left side of her body and pains in her face; which she once described as ‘like someone has stuck a knife into eye and then moved it down the inside of your face’. She also suffers from fatigue. MS is degenerative disease of which there is no cure…Yet! She has to have a monthly infusion of a disease modifying drug called tysabri which significantly reduces the progression of MS, but it’s not without its risks (please see link)

She’s an absolute fucking hero. She is the kind of woman who on discovering her house had burnt down she would calmly say ‘Ok, it’s fine. I’ll call the insurance company while you book us into a nice hotel. Oh it’ll be so cozy’ but she freaks  out when I forget to take the bathroom rubbish out and lectures me about the importance of draining the baby’s bath water BEFORE I take the baby out. She get’s up four maybe five day’s a week and commutes into central London where she works as store manager for Donna Karan, where she puts in a solid 12hr day and is rarely home before 8.00pm. She has also written a book called Awkward Bitch, does talks for various hospitals/clinics/universities, writes and records music, is a mother of two, is in the process of writing her second book AND takes out the bathroom rubbish and drains the baby’s bath water. She never looks for sympathy and never asks for thanks. This is what I admire about her most.

There are times when I forget she has MS, and I’ll sometimes ask too much of her or I’ll snap at her because I’ve been watching the children all day and she comes in from work and has to take a nap, leaving me to make dinner. For that I’m sorry.

In short, she gets on with her life and is determined to fight this fucking bitch tooth and nail and not let it stop her leading the life she wants. She does it with breathtaking confidence, a gorgeous smile and those damn 4 inch heels. I truly do not know how she does it.

I’ve heard people say that life only asks of you what it thinks you can handle. I say that’s bullshit. I say life will chew you up and spit you out, and it it doesn’t give a shit. So you had better be on your guard.

T

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6 thoughts on “Living with MS

  1. Its so refreshing to read this as it reminds me of my late wife Vicki, she had MS nearly 30 years. The last 6 years were very difficult I don’t think that I would be as patient as Vicki was, last year because she went to size 6 she asked me to buy a dress from Boo Hoo it was pink long and matching 6″ heeled shoes, sadly she only wore the shoes in bed. Thankyou for your blog.
    David

  2. Thank you for your perspective. I was diagnosed almost a year ago. I have read your wife’s book and it amazed me. She is a true hero. I applaud you and the men that stick through their loved one having MS. My husband is my rock. We couldn’t do this without a support team. This blog was a great read. You and your wife are inspirations to me. Thank you.

  3. Another inspiring, honest blog post – which pulls hard at the heart strings without ever dealing in syrupy sentimentality. With much love to everyone in your house. Keep up this excellent blog.

  4. She sounds like a wonderful woman and no mistake.

    I have one of those.

    Almost killed by internal bleeding caused by an undiagnosed DVT rupturing her main abdominal artery a few years ago, Elaine now has to put up with constant pain, a lifetime of Warfarin dosing (and therefore no drinking, flying or eating many foods) blood tests and compression stockings, and despite this manages to stay positive, be as active as she can and umcomplainingly put up with the ineptitude of so many medical “professionals”.

    I salute you Marlo, and all those like you who humble the rest of us as we moan about our petty aches and pains.
    Thank you for continuing to put life in perspective.

  5. I fell in love with Marlo through reading her book! It would be so lovely to have a sister like her! I agree with you, she is an incredible woman!
    I was diagnosed with MS in 1997, my husband sometimes forgets too. Lol! Rock on you two! Being parents now gives you both a bigger mission! All my best to you both. 😉

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