I think too in finally starting to admit that I do have this debilitating disease that has affected not only my life, but that of my children living with me has been like I can finally breathe and be honest with myself and everyone around me.
Putting a smile on my face day in day out has been exhausting, there have been days I have laid in bed crying with the pain, knowing I have to get up just to go to the bathroom, but having to spend so much time working out just how I'm going to swing my legs out of bed, maneuver myself up and then actually stand on my feet and take that first horrendous painful step, it's soul destroying, then having the kids worry about me, makes me angry at the universe, at myself, at this disease, it just all took it's toll and losing my sister was just the straw that broke this camel's back I think.
She too had lymphoedema but of the right arm. When they took her lymph nodes out and her breast, it resulted in lymphoedema and I'll never forget further down the track when she hugged me and apologised for all the times she thought I was "faking" or exaggerating the pain as she now realised in a very tiny minute way a sample of what I had been going through every day.
But now she's gone and I've lost my big sis, my friend, my confidante, my lymph buddy, my rock and it hurts... more than I ever thought it would.
Mum, well, she doesn't understand, never has and doesn't want to, she was so understanding of Lynne and her lymphoedema, but mine?.. cause mine wasn't cancer caused, she doesn't believe it really is anything, I can't explain it, but I just wish she'd hug me and let me know she might not understand but she respects me and supports me in every way, but as Lynne used to tell me, Mum is Mum, she's never going to change and I have to agree.
See Mum and Dad were both there the day the doctors and their teams after months of tests, biopsies, hospital stays etc finally came to the conclusion that I not only had primary lymphoedema of both legs, but also Lipodermatosclerosis and Elephantiasis (lymphatic filariasis) which meant my legs would "turn into upside champagne bottles with really thin ankles and feet, my legs would constantly break under the weight, absesses, weeping sores eventually leading to gangrene and amputation".
They said there was nothing they could do, go home and deal with it the best I could till the end. I was too big, too hard to help and that my file was being put into the "too hard" basket.
Those words, sentences above, broke my parent's heart and mine and to this day, my mother won't get past it, just tells me that it's hopeless and I shouldn't keep pushing to be able to achieve things as it wasn't going to end well.
So every attack of cellulitis scares me, I'm worried that this might be the attack to finally make things irreversible.
This disease has taken so much from me and I've been quiet about it, I know people don't know what to say and that's ok, I just need support, encouragement, a hand to help me get up after another bout of cellulitis, an ear to listen, a voice to tell me to stop whining and get up and try again, and most of all, friends to help cheer me on, laugh with me, cry with me, and let me be me in all my glory, damaged legs and all.
Maybe if you all can accept me as I am, then, maybe I can too.