My charity Wednesday – building awareness…

I started off my blog with the aim of doing one entry a week (Mondays) to spotlight my training, my learning, and my progress toward my goal of doing an Olympic distance triathlon.  In about July I decided to add a Wednesday series, where I would focus on the charity fundraising I am doing.  In August I expanded this to focus on the charity fundraising other people are doing with their triathlons.  And now, this Wednesday, I am going to use my charity Wednesday entry to build awareness about Invisible Illnesses, and in particular my own – Charcot Marie Tooth.

Through Twitter I have connected with Invisible Illness Week, which will take place from September 14th to 18th 2009. 

Have you ever seen someone park in a blue badge parking spot (disabled designated), yet emerge from their vehicle seemingly ok?  Has this raised your blood pressure?  Have you thought “I am going to report that person”!  Well, there is a good chance that person had an Invisible Illness. 

It is worth taking just a moment to reflect that so many people walk amongst us, every day, looking perfectly “normal”, yet with their own personal struggles against diseases, sicknesses, conditions, and issues which they cannot control.

As many of you who read my blog (and who have read my main site) know, I am going to shift my focus from breast cancer fundraising to fundraising for CMT in 2010.  To help you to understand more about CMT and the way it impacts me, and others, I am using the recommendation from the Invisible Illness Week site and giving you my own “30 Things About CMT” list (below).

I hope you will read on, and continue to follow me on Twitter (@donna_de) and support my training and progress toward an Olympic distance triathlon in 2010!

1.  The illness I live with is:  Charcot Marie Tooth (CMT)

CMT, and more specifically my type of CMT, is a neuromuscular disease.  In short, my nerves do not transmit the signals to my muscles, causing gradual atrophy from the periphery to the core.  In my case it is caused by an overproduction of myelin protein, the coating on the nerve cells that aids in the transmission of the signals.  Initial signs of CMT include atrophy of the foot muscles, development of high arched feet, ankle rolling and atrophy of the peroneal muscle (ankle area), small calves…  Also some have impact to their hands.  Others with CMT also have impacts to their ability to swallow, breathe and hear.

In my case I have high arched feet, and although my nerves transmit signals quite poorly, I guess I have other means to compensate, enabling me to be active and relatively healthy.

2.  I was diagnosed with it in the year:  2004 (with a confirmed diagnosis)

3.  But I had symptoms since:  Probably since birth…

4.  The biggest adjustment I’ve had to make is:  None, yet – I am very mildly impacted.  But progression is, well, unpredictable.  So I manage myself, my health, and my fitness to be as strong as I can should that day ever come.

5.  Most people assume:  that because the name Tooth is in the name of my disease, that I must have a dental problem.  I kid you not.  Even my GP’s office asked me that question!

6.  The hardest part about mornings are:  Getting up.  I am not sure if this is because of CMT, or because I just enjoy sleep, or just because my body is recovering from triathlon training – but sometimes it is so hard to get out of bed!

7.  My favorite medical TV show is:  I used to love watching ER.  One day I will get the DVD collection and watch it all from start to finish.

8.  A gadget I couldn’t live without is:  My bike tools.  And after that, for CMT, I would have to say I don’t use gadgets, but I do call on my friends and colleagues to open my bottles of water for me as my hands can be kind of weak!

9.  The hardest part about nights are:  I get leg cramps.  I am seeing if this is related to magnesium at the moment, but leg cramps caused by nerve misfiring are a common CMT side effect.  They can be crippling and cause me to bolt upright, needing to put my feet flat on the floor with gradual weight added to straighten my feet and stretch my muscles out.  The last time one happened was after the swim in the London triathlon – rather than helping me to stand, the volunteer dropped me on the ground and tried to massage the cramp out.  That may be fine for some cramps, but not for *my* calf cramps!

10.  The pills & vitamins I take each day:  None right now, except for the occassional ibuprofen.  And oh yeah, the magnesium experiment.  I contemplate taking a daily multivitamin, but I seem to be ok without one.

Some of the typical pills that people with CMT take include pain relief, as well as drugs like Lyrica or Neurontonin which are primarily medications for epilepsy although they also help to manage pain caused by nerve malfunction.  For supplements, CMT folks tend to take Vitamin C (this helps nerve regeneration in animals and its use in humans is currently being researched), Vitamin E, CoQ10, silica…

11.  Regarding alternative treatments:  I believe that staying fit and strong, if you have CMT and are able to do so, is critical.

12.  If I had to choose between an invisible illness or visible I would choose:  I don’t think choice is the issue – the issue for me is living life fully, positively and with conviction, regardless of what our ailments are.

13.  Regarding working and career:  I enjoy what I do, although I know that CMT is exacerbated by stress and fatigue, so I am careful to make sure that I am keeping both in control.

14.  People would be surprised to know:  That I have a nerve condition.  Most people just think that I must have turned my ankle which is why I wear an ankle brace when jogging.

15.  The hardest thing to accept about my new reality has been:  The uncertaintly associated with the potential degeneration that I may experience in the future.

16.  Something I never thought I could do with my illness that I did was:  Can’t is not really in my vocab.  I believe I CAN do things, and then I figure out how to make that conviction a reality.

17.  The commercials about my illness:  Commercials?  CMT is the most prevelant nerve disease, yet people don’t know about it.  Building awareness and gaining support for research is one of the greatest challenges the CMT community faces.

18.  Something I really miss doing since I was diagnosed is:  Nothing.  I am lucky that I was diagnosed because I wanted to do more than I had previously done (a walking marathon) and since my confirmed diagnosis I have only taken my fitness and healthy more seriously, continuing to add new challenges into my life.

19.  It was really hard to have to give up:  I should give up all forms of alcohol, as alcohol really messes with nerve transmission.  But I do love a nice glass of wine.  I am trying to practice moderation.

20.  A new hobby I have taken up since my diagnosis is:  Triathlon.  It is a great way for me to stay fit, with variety in my training, and a great community of athletes to be involved with.

21.  If I could have one day of feeling normal again I would:  I don’t feel “not normal”.  But I do wish I could have more energy.  I am not sure if that is CMT related or not.

22.  My illness has taught me:  To be my own best advocate.

23.  One thing people say that gets under my skin is:  Do you still need to go to the doctor?

24.  But I love it when people:  Just let me sneak off for a nap on the weekend…

25.  My favorite motto is: “Nothing good comes easy” – my dad used to say that when I was growing up, and I think it is especially true for people with CMT. 

26.  When someone is diagnosed I’d like to tell them:  Please don’t think you will be in a wheelchair just because you have been diagnosed with CMT.  And please be hopeful that a treatment will be found soon.

27.  Something that has surprised me about living with an illness is:  That my stories can inspire people.

28.  The nicest thing someone did for me when I wasn’t feeling well was:  Giving me a foot massage.  CMT feet – with their high arches and atrophied muscles – can get so sore.  I see a sports therapist who tortures me with release work on my foot muscles every ten days or so, and a friend introduced me to a great Chinese reflexology place that also provides an alternative type of foot torture!  The foot massage may hurt tremendously when getting it, but after I feel like I have been given the gift of mobility!

29.  I’m involved with Invisible Illness Week because:  I found out about Invisible Illness Week via Twitter, and the week complements my own charity fundraising move to support the CMT Association and raise awareness of CMT.  I am happy to be involved.

30.  The fact that you read this list makes me feel:  happy that I could share a piece of me with you.  I appreciate your time, support and patience with my rambling!

6 responses to “My charity Wednesday – building awareness…”

  1. Donna…I feel honored to have you open a window into what you go through on a daily basis.  I had never heard of CMT but now that I have that is one more person, and those numbers will grow with efforts like yours.  I commend your spirit and strenght and continued to be awed by you.

  2. I have gotten those looks before from people when I park in the blue spaces – especially when I hop out of my SUV, sweaty in a cap and running clothes.  It’s not until I open the back door that people realize “Oh, it’s not for HER.” Unfortunately, a lot of the time they’ve already driven past me by then.

  3. We don’t have a car but if we get one, I know I am eligible for a “blue tag”.  This is a pretty tough question to ask myself – do I get one?  Right now, with how mobile and active I am, I think not.  But someday I may look normal but need one.  I hear stories all the time of people getting hassles for using a tag.  I think it is so sad that folks judge before understanding…

  4. Hi Emily, thanks so much for the comment.  With odds of 1 in 2500 having CMT, there are a lot of people out there with CMT – probably many more who have greater challenges than I do (I am lucky to be fit, active and healthy).  I am glad I can open a little window into the challenges of living with an invisible disease.  And of course I totally appreciate all of your support!

  5. I am humbled. This coming from someone who has run from top to bottom in the UK, and who plans to run coast to coast in the US?  Your efforts inspire me!  Thanks for reading my blog Mark.  I am looking forward to training in my Run Geordie Run shirt and supporting you however I can!

  6. I actually got inspired on your post and to your aim. Be a continuing inspiration for others. More power and more happiness to you! Cheers!

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