Tracey was diagnosed with GPA at 32. She’s had an incredibly difficult journey, both physically and emotionally, but her courage and determination to support LCTF and others is an inspiration.

 

🎶 I get knocked down but I get up again, you never gonna keep me down. 🎶

My song = my life.

It played on my playlist tonight, and by god I needed it this week. Why is this my song? Nothing ever came easy to me, I need to work at everything, and I fail a lot – but, I never ever give up. Failing always made me want it more. If you give up you can only fail.

Vasculitis, you will be no different.

This is a situation I never believed I’d encounter, especially aged 32. Vasculitis is an incurable autoimmune disease which unfortunately can only be managed with steroids and other medications (I still haven’t reached there yet). It’s my life, it’s something that’s happened and I can’t go back or change it, despite what I’d give up to do so.

My type of vasculitis and symptoms have affected my speech, mobility and basically my entire life to an indescribable nightmare I wouldn’t wish on anyone.

Losing your health is hard, mentally, emotionally and physically. You lose all sense of purpose. Easy day-to-day tasks become hard work. You get ill when you try everyday to get better. You worry and stress about the future and your quality of life. Your goals, aims and life plans are literally binned. On top of everything else, I haven’t been able to work full time in the job I worked so hard for and love. Not gonna lie, I feel worse than the looping star at Codona’s right now, up and down like a yo yo.

I have re-gained faith in humanity due to this, but I have also seen the worst.

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.

I’m always brutally honest. But I hope my honesty makes anyone’s day feel better, or even that they’re not alone. Because I know many of us are struggling day to day. We are one team and for Lauren, we fight! I’m usually the most positive and optimistic person out however this is most certainly the hardest thing l’ve ever endured.

My thinking after this song played: I will survive this, it can only get better. And I won’t let it define me or stop me from anything, I will keep the same bucket list – and yeah maybe it’ll take longer and be harder, but I will do it. I will use this bad spell of my life to become something amazing. I feel ready to challenge myself and take a risk, make big life changes, back myself a little more – I’m stronger than i give myself credit for.

And I will help anyone who ever has to endure this in life, I will show them that in true T style you can be down, have off days, grieve yourself, give up a little – but you get one life, don’t let vasculitis determine it or ruin it.

Be aware some major fundraising is about to begin. I’ve raised over £37k for multiple charities, but when it’s a charity started with two inspirational parents losing their 15 year old daughter to the exact same type of vasculitis I have, who since have raised over £1 million to help research, support, counselling and so much more for people like me, it’s so much more important…

You might find this useful:

Wellbeing service Tracey's had to give up the job she loves. If you need advice on work, money and more, our wellbeing service can help.
Fundraising Tracey's a passionate fundraiser, and we need all the help we can get! See how you can fundraise, too.
How to donate Please donate so that we can continue to provide support and help people like Tracey.
Other people's stories Read more stories from other people about their experience of vasculitis.
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