This disease is not known to people. I’m not bald as you would be with cancer treatments. I can look perfectly well but be in absolute pain. Vasculitis would be so much more acceptable if you had caused it or done something to deserve it. It’s a fight you can’t describe, you can’t control it and as much as you try to not let it define you, it’s the hardest fight of my life to date. But I’m still here breathing (not great) and I’m giving it my all to keep my fight going…
LCTF has been my lifeline for over 9 months now.
Vasculitis is so isolating – but now I have a family of people like me, who understand completely. We hold each others hands throughout our pain, frustration, hopelessness, fatigue and the grief of losing who we once were.
Your life will never be what it was and by god, I lived life to the absolute max. It makes me thankful I did, but it also makes this harder, too. You’re mourning you, basically.
Without the LCTF quite simply people like me may have given up with the diagnosis, let alone what it can do. Loss of hearing, skin sores, loss of speech, nose collapses, kidney failure, loss of movement in limbs. The list is endless. You never ever think at any age, let alone 32, this will happen to you – and don’t, as its horrific!
But it can – this can happen to you – and this Foundation helps you see a life (not as you had) and gives you the chance to see past the bad days. You’re never alone because of it. I could write a novel on LCTF, but that first point is enough. I hope everyone supports me in some way to support LCTF, whether you join me walking, abseiling, doing the strangest of fundraisers. And I hope you never find your health deteriorate as we do. It doesn’t matter who you are, your salary, job, house, car – there’s no one who can change illness, and it’s the only thing that matters in reality. Take care of yourself and know your own body. I had to fight for diagnosis!
I went through months of oh it’s diabetes, hypoglycaemia, b12/folic/anaemia, kidney problems… I lost 3 stone, but was eating for a village. I was fatigued as hell – to the point that a day at work required a nap. You know when something’s wrong – don’t ever let it rest if you do. Diagnosis is key in any illness, especially incurable such as this.