…and, are you on any medications?

April 26, 2013

“Are you on any medications?”

When you’re healthy, when you’re not on any medications, this question is a fast one with an easy answer and you might not even realise how often this question gets asked.

When you have a list of medication as long as your arm, you not only have to reel them off, you also have to spell them. It takes time and it’s embarrassing. You can see them wondering what you have and why you’re filling your body with that much medication, when you look like a normal, healthy young woman.

And so they ask.

When I get a blood test – obviously they ask. I wish they’d keep it on record so I didn’t have to try and remember every time.

When I want to buy pain killers – they ask.

The other day I went to get laser hair removal – they asked. Once I’d reeled off the long list – and I nearly always forget one – I found out that the fact that plaquenil and methotrexate make me sensitive to light stops me from being able to get laser hair removal.

This week I went to the Snowy Mountains for work. A beautiful place, gorgeous scenery and so many exciting outdoor activities from mountain biking, hiking, fishing, horse-riding and of course skiing and snowboarding in the winter (see I’m doing my job at every turn).

However, for someone who has limited capacity for strenuous activity, it is a constant reminder of what I can’t do. Especially when everyone asks you if you mountain bike, if you ski – where does your outdoor passion lie?

I had politely refused a number of activities but when I was told there was a shorter walk from the top of the chair lift up Mt Kosciuszko and that I should definitely do it and they would put me on a tour – I agreed.

So I woke in the morning, and on this day my pain decided to settle in my left hip and my shoulders. I stamped around trying to stretch my hip and get rid of the discomfort, not wanting it as an excuse not to go on the walk.

I rugged up and headed up to sign in.

“…and are you on any medications?” So I explained it all and then went to meet the guide. We jumped on the chairlift and as we sailed over the green slopes I was fighting the tears back. I had been under the impression the walk was around 1.5 hours each way but as I met the guide she said it was 2.5 hours from the top of the chair lift and about 1.5 hours back plus the chair lift ride.

I honestly didn’t know if I had the strength, if I would lose it half way through and what sort of pain I was going to be in the next day. But I just didn’t want to give up or quit without giving it a shot.

Once we got to the top of the chairlift, the wind was so icy and strong. We were walking against it. I looked at the young family with three little kids, I looked at the couple in their sixties and I put my head down and started to push against the wind. I’m 29! I should be able to handle this if they can.

But after about five minutes, the realisation that I would have to do this for more than four hours panicked me. I told the guide I have a chronic illness and that this was more challenging than I’d anticipated. She encouraged me to do the first 2km (of the 13km round trip) and see if I wanted to go on.

I lasted about 1km and then, with my frozen fingers under two pairs of gloves, thanks to Raynaud’s Phenomenon, and my legs already weak from the stress, I turned around and let the wind push me down the mountain.

Under my sunglasses, my borrowed beanie and my scarf, I sobbed my way back to the chairlift and all the way down the hill. Crying with humiliation, crying at my failure, crying at my frustration. Crying because I have to live with Mixed Connective Tissue Disease.

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7 Responses to “…and, are you on any medications?”

  1. Kirsty said

    Dear Naomi, there are so many things in this world we have no control over. Unfortunately for you, how you’re going to feel from one day to the next is one of those things. The message I got from your blog today is to be always grateful of good health and mobility and make the most out of each day. I think you should be proud of yourself that you tried and that you did the very best you could given the particular constraints of that day. I am very proud of you. Your an inspiration to me – even if you are hairy 😉 .xo

  2. Colin said

    Nomsie, now I have a tear in my eye (must have been the wind). The important thing here is not your failure, it is the fact that you tried. Keep going. Never retreat, never surrender. Much love x

  3. Beverley said

    uuugghh, and aaargh for you. exersise in pure frustration. :o( it’s a case of waking up one day, and you’ve lost your old self, and a new one has been substituted without your permission. uuugh. aaaargh!! and, some days are diamonds, and you can fake it ok, and other days are pure shite, and it’s just not possible to get a good roll on the fake-take?

    wishing you bucketloads more “diamond-days”……….. :o)

  4. Julie said

    I so know what you are talking about, I used to be so active, rode horses on our ranch, wrestle calves for brandings and numerous other activities. Everything has changed so much, its depressing and its makes me sad that I lost the person I am to a disease that isn’t going away. I mourn for the old me. Now I go to work and home, thats it, lay on the couch and just do the necessities. It seems if I do something out of the norm, I pay for it in the end. I feel for you and me and anyone who has MCTD. We do have to at least try so I am proud of you for that. I also know your feelings of being stressed out just trying to decide to do something. Can I , Can’t I !! I normally don’t even try anymore and no one gets it or understands how crappy I feel 24/7, year after year. I’m Tired!! Its been so long I really don’t remember what its like to be normal without MCTD. that makes me sad too..Love all of you who are struggling with this, and yes, I do understand and feel your pain..

  5. Marleen said

    I understand so well how you must have felt…the arg and ouws are really on their place.
    But I want to be positive…fact is you’ve tried, and this is also very positive.
    Living with this disease is a daily struggle between do’s and don’ts, and we have to find a good equilibrum in what we can and can’t do.

  6. Sara said

    I understand how you feel! I also have MCTD. I was googling “MCTD and burns” and I stumbled upon your blog. This post
    reminds me of something that happened in my trip to Turkey. We were entering a historical building Mosque/Church (Aya Sophia) and we were required to take off our shoes. The weather was cool with little rain. It was crowded at the gate and everyone was taking off their shoes. All my family entered while I stood still struggling to take off my shoes at the gate. Because of Raynaud’s phenomena, I couldn’t untie my shoe laces..I couldn’t feel my fingers! No matter how hard I tried, I just couldn’t. My finger tips were all frozen.(They were ankle shoes so no way I could take them off without untying the laces) So there, I stood helplessly and started crying because who would thought one day I’ld have trouble in doing something so simple such as untying my shoe laces. Anyways, my mom noticed I wasn’t with them and came back for me. I got so angry at her and my siblings for leaving me there all alone ,but in reality I was just angry at my helplessness.

    Nevertheless, I believe we’re far better than other people. So stay strong dear.

    • I can just imagine how humiliating that would have felt. Such a small thing but a reminder that you’re sick and even little things can be hard. Thanks for sharing Sara.

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