Pompe Everyday

Having traveled my entire life, having lived on three continents, and having to add more pages to my last passport means I’m almost always looking for my next vacation get away. Too bad I can’t ever take a vacation from Pompe. Pompe is with me everyday, there is no packing up and leaving it behind like you can do with most problems like work, stress, or those “crazy” family members.
 
Pompe touches everything I do from the moment I wake up in the morning to the moment I fall asleep – and it doesn’t stop there. Pompe effects how well I sleep too. I thought I’d take some time and highlight how challenging it can be to live moment to moment while fighting Pompe. Notice I say “fighting” and not “suffering from” because that is how I approach everyday life with Pompe. I fight.
 
Rise and Shine.
 
When I wake up in the morning, I can’t just pop out of bed like I used to. I have to carefully raise myself out of bed to a standing position. This can be a slight struggle, but it is something I have gotten used to. I then have to gain a sense of balance before I can start to walk and hope that I slept correctly so I can avoid those ever so common Pompe morning headaches.
 
Stairs and Chairs.
 
I can struggle and pull myself up a few steps here and there, as long as there is a handrail. I almost never go down stairs because the risk of falling is too great and it would be a huge set back in my treatment plan if I were to injure myself. Chairs present an interesting challenge – like snowflakes, no two ever seem to be alike. While sitting is a nice break from standing, which I can’t do for too terribly long, if there is not a “decent” height chair for me to rest in – I usually just tough it out and stand. I then hope that I have not tired myself out too much when it comes time to walk again. This is one of the reasons I spend a lot of time out in public in my scooter as I never know what the chair situation will be in any given situation. I have however gotten really good at judging the height of chairs and can tell just by looking at them if I’ll be able to get out of them, but sometimes an overly soft chair will fool me. Bad chair.
 
Time to Dine.
 
I have to think about everything I eat – I wrote more about this in an earlier blog entry. Because I am on a high protein, low carb, low sugar diet I can’t just grab whatever is convenient. Meals and snacks take some planning. If I am eating in a restaurant, not only do I have to consider the chairs, I have to choose my entrees carefully. When in doubt, I talk to the chef. I try to think of it more of what I can eat, rather than what I can’t eat. And really, there is a lot that I can eat even when dining out and sometimes it gives me an opportunity to try something new.
 
Beauty Babe.
 
Because of the weakness in my shoulders and upper arms, I now have trouble washing and styling my hair. I have to bend my head down so my hands can just barely reach my head to shampoo and condition it. I can’t really put my hair up anymore without a struggle, not even in a simple ponytail. If I’m sitting in certain chairs that support my back, but also allow me to lean my head back, I can usually manage a kind of sloppy ponytail, but even that seemingly simple task can take a lot out of me. Luckily I have no problems washing my face and applying make-up, so I’m not likely to leave the house barefaced and scare little kids too much! I’ve taken to using an electric shaver on my legs as trying to balance on one soapy leg while holding a sharp razor next to my skin is not really a good idea given my current strength level. And sitting on the edge of the tub is not really an option as I’d never be able to get back up again.
 
Fashion Forward.
 
Shoes and outfits have to be carefully considered and not just for the usual girly fashion diva reasons. No more heels for me as balance is an issue and I don’t need to up my level of difficulty just yet. Also, heels tend to be slick on the bottom, even with those non-slip pads. No matter how much of the that stuff I put on the bottom, just the tiniest bit of heel can slip and down I go. Many of the cute flats present this same problem so I have to go with shoes that have great grips – Converse Chucks and decent flip flops are my shoes of choice right now. I’ve also been avoiding skirts and dresses simply because of my fear of falling and, well, flashing people. Luckily an 80s trend has come to my rescue – leggings. With leggings I can now sport fun and flirty skirts and dresses with my Converse and flip flops no doubt! Please don’t call the fashion police on me just yet – I’m working on it.
 
These are just the highlights and new situations will bring new challenges. But as you can see, Pompe really does touch everything I do, every moment of every day. I start physical therapy this week, which will help me improve my movement and strength, but I’ll almost always have to use creativity and tenacity to accomplish day to day tasks that I used to take for granted. And physical therapy, like Myozyme will not “fix” me overnight – it will take a great deal of time and effort to see improvement. Whatever happens, somehow, I’ll manage. Pompe may have won the battles, but I will win the freaking war!
 
What are your day to day struggles, and how do you tackle them?
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7 comments

  1. I can’t believe how fast Pompe “attacked” if that is even appropriate to say…last time I saw you which I believe was in 2007 it didn’t seem like things were this bad. 😦 I knew that you were challenged by the 3 flights of stairs at the apartment but goodness-I am at a loss for words.

    All I can think of is how much you amaze me. I have always loved your strong will and desire to put up a fight!!

    Luv ya!
    genie

    1. You’re right Genie – it wasn’t as bad a few years back. I really went down hill in 08-09. But now I at least know what I’m fighting and hope to grow stonger slowly each day.

      Thanks for the support and hope to see you soon!

      “Monick”

  2. Monique,

    I love how you put everyday life into words. People need to realize that it’s a minute by minute struggle though out our days.

    As I have said “it’s exhausting being me”.

    Nina

    1. Thanks Nina – love your quote about it being exhausting being you. Keep fighting – every single day!

  3. I have Pompe and the past two years have really been a battle for me. I have lost alot of energy and my diet has done a real change. Walking has also has become a serious issue for me I can’t walk freely without somekind of help!

    Christa

    1. Christa:

      Are you getting treatment? I have found that with ERT, diet, and exercise I’ve been able to make small improvements. I know it is so hard to need help with something as simple as walking, but it is better get help than to fall and really hurt yourself. Pompe really is an every single day fight and you have to fight. Please keep fighting and keep me posted of how you are doing.

      Monique

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