Wednesday 18 June 2014

Life for a Cripple, before the Internet

A friend of mine today got me thinking about just how much the internet has brought to my life, particularly with respect to coping with my disability.

The condition I have (CMT) is mostly a hereditary condition, so even if people with CMT don't have "friends" to talk to, then there is usually at least 1 other person in the family with the same condition.  However, I am adopted and until I joined Facebook I felt so totally isolated, living in an outdoorsy family, not able to join in the family fun (even to this day I sometimes feel like that in my family, they don't intend on isolating me and indeed they do try to be inclusive, but that's a conversation for another day).

Facebook brought to me a world of new "family" members, others with CMT.  I have not met a lot of them, indeed some are not even in this country, but having them to talk to and compare notes with is invaluable to me.  The internet also brought me to CMT United Kingdom, and in turn to the Annual Conventions they hold each April.  I've been to 3 (or is it 4) of those now, and they are the time I look forward to most in the year.

But what if I didn't have the internet?  No doubt I would still be feeling all alone.  I wouldn't be armed with the wealth of knowledge that being part of the CMT community brings me.  I wouldn't have the confidence to lead the management of my condition where it needs to go, and I wouldn't be under the wing of an awesome Neurologist at a leading Neurology center (thank you Dr R)!

I would probably still be reliant on the half-arsed doctors at my local hospital.  Worse still, due to the lack of knowledge and confidence the internet has given me, I would probably be unaware that the local neurologists didn't actually know much about CMT (for I had to correct them myself on several occasions, which they didn't appreciate!). 

But luckily I do have the internet, and I have so much to thank it for.

In addition to friends with CMT, I have also found friends with other illnesses.  I feel it is important to have those around me who understand how difficult it is just to live life.

So, if you are out there, reading this blog and you have CMT, then join the various groups on Facebook, particularly the CMT UK one.  Similarly if you have any illness, the internet can form part of a wonderful support network.

CMT UK's tag line is "Together We Are Stronger", and this is just so perfectly true.


  1. Hi Sam, it's good to know that you are able to craft. It is strange to think how it would be for me too without the internet, it would in no way be possible to meet and socialise with other crafters, for example. It's nice to here that there are even more positive good things in that you are able to not feel isolated. I suffer with drepression so can relate only a little. I like all the crafty bits you've been doing, you are soo talented and creative!
    Peace, Maxine xx

  2. Through the medium of the internet and blogs etc, all are on an equal playing field, which is brilliant. I think it must be a huge lifeline for many people. Elizabeth xxx

  3. The internet can be a great resource to crafter's of all abilities. I am a member of several groups and some days its all that keeps me going. It has also helped me to find information about my own illness i have fibromyalgia, carpel tunnel and chronic migraines. Glad to hear it helps other too thanks for sharing

  4. I am so very glad that the internet is your link to the world outside your own body. I too can tell you that I feel that way at times. I have a neurological condition as well (epilepsy) which of course is way more common, striking about 1% of people across the world. I was not treatable with medications becoming "intractable" and taking over 5 meds a day at maximum dosage which eventually led me to having two brain surgeries. Crafting is what kept me happy. My life before was engineering. I have had an amazing recovery now since the brain surgeries. I put my story on my blog as an outreach to others who have epilepsy and other neurological conditions....

  5. I am housebound due to illness so know exactly where you are coming from, the internet is an amazing place, I have made some lovely friends. Happy to meet another crafter, thank you for stopping by my blog :) x

  6. I am so happy to hear that through the internet and making and meeting "friends" you don't feel so isolated. Thank you for your comments on my blog and for sharing this blog post too.
    Linda xxx

  7. Hi Sam the internet means the world to me too hun know how life through disability can be so isolating - you are a lovely woman and it is a pleasure to know u hugs Judith xxx


I really appreciate the time taken to read my posts and leave a message. It means a lot to me.

Thank you,