Back in 2009 I participated in the Invisble Illness Week 30 Things Meme, sharing about my invisible illness, CMT. Although the 2013 Invisible Illness Week happened in early September, I wanted to refresh my answers in honour of CMT Awareness Month.
1. The illness I live with is…
I have two “invisible illnesses”. I have CMT or Charcot Marie Tooth disease, a nerve condition in which nerve cells lose the ability to transmit signals to the muscles. I also have EDS-H or Ehlers Danlos Syndrom Hypermobility type, which is a collagen disorder in which the body’s connective tissue (collagen) is faulty causing loose joints and dislocations amongst other problems.
2. I was diagnosed with it in the year…
I was diagnosed with CMT in 2004, and EDS-H in 2007, with genetic confirmation of CMT Type 1A in 2007.
3. But I had symptoms since…
Birth, as both are genetic in nature.
4. The biggest adjustment I’ve had to make is…
Managing fatigue. I am a Type A personality and like to take on a lot of things! Both EDS and CMT lend themselves to causing fatigue – neural fatigue because our nerves work overtime to stimulate our muscles as the nerve cells don’t transmit signals properly, and small muscle fatigue as our small muscles work overtime to stabilise our loose joints.
5. Most people assume…
Nothing is wrong with me, as I look totally fine.
6. The hardest part about mornings are…
Getting moving. I wake up with aches. My joints creak. It takes a while for me to warm up. I can feel like Frankenstein in terms of my ability to move in the mornings!
7. My favorite medical TV show is…
Seinfeld. Oh, wait. That’s not a medical TV programme. Well, then, ER.
8. A gadget I couldn’t live without is…
I do not use any gadgets for adaptive living yet, although I think I should invest in a bottle opening device. But since I haven’t, my friends and colleagues are my bottle openers!
9. The hardest part about nights are…
Leg cramps. I can get severe leg cramps in my calves which cause me to bolt upright, awake and in pain. I need to force my feet straight and flat on the floor to relieve the cramping. It is nightmarish.
10. Each day I take __ pills & vitamins.
I do not currently take supplements, although I am considering adding some into my daily routine. Before taking any supplements I seek guidance from my doctors at the National Hospital for Neurology and Neurosurgery, as I am a part of the research pool there and I do not want to remove myself from eligibility to participate in any studies into CMT that are happening. Eligibility in the research pool is why I stopped taking Vitamin C, CoQ10, Vitamin E, and Co-Creatine in 2009. Doctor guidance is what led me to try magnesium to help with my leg cramps, which I’m not sure it does.
11. Regarding alternative treatments I…
I think any alternative treatment that espouses itself as a cure is snake oil in disguise. There is no cure for CMT or EDS. However, I am a big believer in therapy to help alleviate symptoms. I love sports massage, yoga, reflexology foot massage. I also believe that food and top quality nutrition are as important to health as medicine, so try to eat a whole foods diet as much as possible.
12. If I had to choose between an invisible illness or visible I would choose…
Neither! But I do think think it might be simpler to have a visible illness…
13. Regarding working and career…
I have a demanding job and have worked on an executive career trajectory since grad school (so 16 years now!), neither CMT nor EDS has stopped me yet. Although the extensive travel I do can lead to pretty severe fatigue, so I need to manage my health carefully to make sure I can keep my job – health – sanity in balance!
14. People would be surprised to know…
I really only took up sport as a way to manage CMT in 2007, I didn’t transition to a “healthy year round lifestyle” until 2009, and I didn’t start running until 2010 after a nearly 25 year break!
15. The hardest thing to accept about my new reality has been…
Managing the uncertainty that comes with having a progressive degenerative nerve disease. I don’t know how I will be impacted tomorrow, so I can only plan for today.
16. Something I never thought I could do with my illness that I did was…
Run! This is particularly the case with EDS-H — I dislocated my knees so many times when I was younger I thought running would be off the cards forever. I was even told earlier this year that I should stop running immediately because of the structure and damage of my knees. But I am still going, working with rehab doctors and physiotherapists to keep everything in check.
17. The commercials about my illness…
There are no commercials for CMT! Although a few of “Jerry’s Kids” in the adverts for the Muscular Dystrophy Association in the US have featured kids with CMT.
18. Something I really miss doing since I was diagnosed is…
Nothing. I have done more things, reached for new and more challenging goals, since being diagnosed. Find the limit, then figure out a way to beat it!
19. It was really hard to have to give up…
I haven’t given anything up yet, although I should give up alcohol as it is bad for nerve transmission. But I like a good glass of wine. So I’m trying to enjoy in moderation!
20. A new hobby I have taken up since my diagnosis is…
Triathlon!
21. If I could have one day of feeling normal again I would…
Wake up not wanting more sleep, move without aching, run without concern, and laugh every step of the way!
22. My illness has taught me…
To be my own advocate. To never accept a limit but to seek out alternative ways of doing (and thinking). To try new things, even if those things are hard. To love myself. And to take inspiration from those around me!
23. Want to know a secret? One thing people say that gets under my skin is…
During races it has got to be “keep going!” — you may think this is encouraging, but as someone who has lived a life of always being the last in a race, it is actually kind of maddening to hear. I appreciate the need to encourage people, so how about saying “Way to Go!” or just a smile or high five. Also, don’t tell me to “RUN!” when I am racing. Chances are I am in the middle of a run-walk strategy and watching my time carefully. Instead, a “You Got This!” will work much better, because I know I do have it!
24. But I love it when people…
Smile and ask me questions in a non-judgmental way. So instead of exclaiming “Your Limping!” when you see me coming back from the gym, ask me “Have you just been working out?” – much more effective!
25. My favorite motto, scripture, quote that gets me through tough times is…
My dad always said “Nothing Good Comes Easy” – which is very true, even if grammatically incorrect! I collect other quotes and sayings, but this one is mine, my personal life philosophy, especially living with EDS-H and CMT.
26. When someone is diagnosed I’d like to tell them…
1 – Avoid Doctor Google! 2 – Remember, you determine your own future, not some doctor who can’t read the crystal ball any better than you when it comes to a progressive degenerative disease! 3 – Live an active healthy life. You may not be the fastest, but you will always be faster than the guy sitting on the sofa. And a healthy life is also about the kitchen – don’t be afraid to learn how to cook the foods that you love, it is fun and so much tastier than store bought!
27. Something that has surprised me about living with an illness is…
The positive inspiration I find within the community of people who also have my illness. I often think that I am blessed to have CMT, because of the inspiring people I have met who also have it. I feel honoured to be a part of this incredible group.
28. The nicest thing someone did for me when I wasn’t feeling well was…
Just letting me slope off for a nap is the best thing ever.
29. I’m involved with Invisible Illness Week because…
I’m a bit late this year, but I wanted to share about CMT as a part of CMT Awareness Month. I will post on time next year!
30. The fact that you read this list makes me feel…
Honoured – because it is a very long list, your persistence shows that you are patient, interested in my rambling, and I am thankful that you would spend your time in this way!
September is CMT Awareness Month. CMT, or Charcot Marie Tooth disease, impacts 1 in 2500 people including me. CMT is a so-called “invisible illness” because it is a neuromuscular condition where nerve damage does not automatically translate into a physical manifestations of illness. To learn more about CMT please visit CMTAUSA.org. Thank you for your support.