One in a Million??

Hello all

Firstly, wow, thank you so much for all of your love and support ! The last time I sent out a blog listing I was in the IV suite, since then I have had one hell of a scrap with the side effects of the treatment. For those that don't know a lot about this illness and the treatment (which includes me and my family) I am currently a medical case study !!

There are 16 areas of the body it can impact, these include nervous system, bowels, joints (rheumatoid arthritis)

I happen to be that one in a million that has all 16 symptoms!

Vasculitis is the cheese on the top of a pizza. There are 16 pieces of peperoni on the pizza, each one with it's own little attitude problem.

Vasculitis is an autoimmune disease. The red blood cells are inflamed. The virus creates an enzyme that acts like the ghosts from the Pac Man games, it doesn't stop until its eaten all of your white blood cells.

Over the next 16 blog posts I will explain how each of the little cowards work and impact your body, your livelihood and your chances of survival...

Oxygen. Kind of important this isn't it

The body needs white blood cells to transport oxygen through the motorway of veins using your blood as its taxi. White blood cells transport goodness to and rubbish from the bodies major organs. The Ghosts from Pac Man eat the white blood cells. So no oxygen to the brain, the lungs, through the blood... what does that mean?

Our blood is pumped around our body in the veins, I see these like the London underground. For the sake of this imagine they are the size of smarties tubes.

My red blood cells are like a tennis ball, so to ram them home the heart has to graft that little bit harder ! Resulting in low oxygen levels to my brain (which means no concentration, poor cognitive memory)

As in, I get up and go into a room and by the time I've got there I've forgot what I was doing.

As in, not being able to find Aldi last week which is on the main road from my house, it took me 20 minutes to remember where it was.

As in turning up to the hospital ready for a business meeting - when I wasn't due in hospital and ended up half hour late for the meeting.

As in feeling guilty all day valentines day that I'd not realised or remembered, only to find at 23:35 that night while looking for something completely unrelated, I had ordered a present and card, that were delivered and hidden, 5 weeks ago knowing what my memory is like !

As in going from a Fitness PT, training in the gym 5 days a week, rugby training twice a week with a game every Saturday. Average steps a day c19,000. 100 mile road races in the rugby off season aswel as climbing the 3 peaks...

Reduced to a frail blob of pity getting out of breath walking from the car to the supermarket entrance. Having to lean on the trolly for support. A guy that cant walk his dog without stopping to catch a breath. A guy that now has to wear a sports watch and heart rate monitor 24/7 as an alarm rather than a fitness tracker where goals were set.

The challenge has changed from a 7 minute mile to being able to walk the dog 3k without stopping to control my heart rate and focus on breathing. !

I'm going to end this on a high as I always do. What you have read above happens to me and others with ANCA Vasculitis every day. You may think we're looking better after treatment, or a few days rest. BUT you only see what we allow you to see.

Everyone, and I mean EVERYONE creates their own theatres, they then chose what the act is and who the audience is. The act can change to accommodate the audience. With ANCA there is only one way to deal with it to ensure the cast don't get burnt out from too many productions..... keep the curtain open.

For me, opening up to my closest friends was one of the hardest things I've ever done. How do you tell your best mates your dying??? And then not worry about the impact this will have on them? I went on Social media and started a charity announcing my illness, which not only went public but was also the way 90% of my friends and family found out. WHY???

Because my purpose is bigger than me. My illness is more than just using my body as a suitcase. I've experienced too many of life's pot holes for this to burst my tyre. This was put here for a reason, and I am not philosophical by any means, but I've been shown, by a great team, a group of people I will never forget, that this was meant to happen. And what comes next will be nothing but magical.

I'm still having treatment.

I'm still classed as terminal / critical / life debilitating

Disabled

BUT - I'm still telling them - YOUVE NEVER DEALT WITH A BEAST LIKE ME. And I don't mean in a savage kind of way, I mean as MY DAUGHTER, MY WIFE, MY FAMILY, have been through enough! I will not add to that, neither will I see them in any more pain.

Good Luck ANCA.GPA/Poly + Tuberculosis + = come out of the shadows and lets see what you've got.