Tuesday, 10 April 2012

More flaws and handicaps

I have updated the post about having flaws and handicaps as a younger person as I thought of some more. One of them is a woman related to me, a horse stepped on one of her fingers so bad it had to come off. I think it was quite hard for her back then, she must have been a teenager when it happened but I imagine she has learnt to live with it. At least she survived. Horse accidents can be fatal.
At the patient weekend recently we watched a really wellmade DVD that the patient association created about Lymphedema and living with Lymphedema in order to bring attention to Lymphedema and enlighten patients, doctors and others. One of the patients interviewed, a strong, beautyful woman in her late 40'ties, I imagine, ended up with Lymphedema after cancer, surgery, chemo etc. and it made an impression on me when she said something along the lines of "I got Lymphedema and it sucks but I survived, I still have my life". That makes sense. Mine is Primary and came out of nowhere so it is a little different. Still – and when others told me this in the beginning it would piss me off so much – it could be much worse. It could be better too though.
The last one on the list so far is a man in my Qi Gong/Martial Art class. He suffers from a condition that gradually is narrowing his sight and he is going blind. I think it might be Tunnelvision. He can only see things that are in front of him, he can't see things from anywhere near the corner of his eyes. I feel sad and frustrated about him loosing his sight. He is only 41 or 42, I think. When I learnt I got this urge for him to make the most of his sight before it is too late and see as much beauty as possible. Well, he does see me two times a week, but still... ;-)  Just kidding.
Life is liveable with Lymphedema too. We must live while we can, who knows what's ahead.

7 comments:

  1. Hi, I am 42 and also have primary lymphoedema (left leg). It took a long time to be diagnosed (over 6 years) as at the time the swelling appeared I was diagnosed with May-Thurner Syndrome and a dvt. It was assumed at the time that the swelling was due to those factors. My leg got worse and worse and further investigations discovered primary lymphoedema also, that was two years ago. My husband had died not long before all this and frankly I felt sorry for myself. I hated everything about it, I hated wearing thick hot stockings (I live in Australia, and they are very hot in 38 degree celsius heat, trust me), and would cover them up with long pants etc.....making myself hotter and more distressed. Only in the last year have I ventured out in shorts. And you know what...most people don't even notice my stocking! Those who do either look at you in a strange way (says more about them) or actually ask why I'm wearing it. All that time hiding away only made me suffer. After my husband died (he had cystic fibrosis, then a double lung transplant which he rejected several times...dying two years later after years of illness)..I found a note he had written to himself. It said "pain and suffering is life, misery is choice". He knew more about pain and suffering than most, yet he would always be as positive as he could be. Primary lymphoedema is awful, I can't do things I used to do. I fall over a lot and my life has changed because of it. It is life changing. But its all relative...there are lots of people with much worse than me. And I grateful for what I do have. I can breathe, I can walk, I can talk, I can speak for myself and be independent. I'm lucky. Also many thanks for your blogs, I enjoy reading them. Its nice to know you are not the only one with these things. J

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    1. Hello :-)
      Thank you for sharing your story. You really have had your share of tough times, I feel sad by thinking of how hard it must have been when at its worst.
      Interesting, and food for thoughs, how your husband handled things. It is often those with the biggest challenges who handles them best. It is inspiring to read how you appreciate the things you can do and that life is precious and liveable even with a cronic disease.
      I think you are really brave for wearing shorts, showing your leg. I am so not there yet, but I am learning that this is a journey and that in say five years from now I am in a different place. Already I am in a different place than two years ago.
      Thanks again for writing, and for reading my blog :-) So true, good to know one is not the only one with these things :-)

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  2. Trust me, I wouldn't be wearing shorts if not for the heat! LOL it's hardly a fashion statement. I guess I just feel it is easy to fixate on things others don't really pay attention to. Enjoy your walk, sounds great. I manage to walk around 6km a day ( I have two dogs that I walk daily on the beach). So you're a bit of an inspiration. Jen

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    1. I still think you are brave ;-)
      Thanks for saying I'm an inspiration. I hope my big walk will go OK. 6 km every day is quite a bit too!
      Liz

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  3. Hi: I've had primary lymphedema for 51 years. It covers my whole body and yes, my face swells too. I used to be in worse condition when I ate everything but now I (mostly) eat only real food and my condition is so much better. My problem right now is the edema in my belly and though I exercise, by afternoon the belly is back. I read that lymphedema is very debilitating, getting worse as time goes by. I got this when I was 16 and am getting tired of it. Helen

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    1. Hi Helen.
      Thanks for writing :-) 51 years is a long time having suffered from Lymphedema, I wonder how you have coped over the years – you must be a very strong person, I imagine. I guess one gets used to it. I think I am getting used to it, but yours sounds much more serious than mine.
      It is great news – and very inspiring – that eating real food makes the swelling so much better!
      Hang in there! Thinking of you.
      Liz

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