Walking 4 Life and Freedom

Ok everyone... Some of you, but not all of you, know my story. I’ve been ill for over 2 years now with an autoimmune disease that’s been attacking my joints and connective tissue. It meant I had to give up my work in Thailand and return to the UK for treatment.

It started rapidly over a period of about 3 days; increasing pain, stiffness and inflammation in my knees, hips and shoulders (to begin with) to a point where I could no longer stand up unaided, walk or lift anything. It was terrifying. 

A stack of blood tests revealed several problems; including a CRP level of 467 (normal range between 0 - 5) The CRP test shows the amount of inflammation in the body. The doctor in Thailand immediately injected me with steroids and placed me on a daily dose 90 mg of the steroid prednisolone. Any of you who may have taken steroids will know that 90mg is not a level ever prescribed in the UK - it’s a massive dose and I inflated like a balloon. I don’t consider myself a vain person but I was horrified when I saw my reflection in a mirror. I took this photo in October 2018 and have never shown it publicly before now:


I returned to the UK in August of 2018 and I’ve been looked after by an incredible team in the Hammersmith Hospital Renal/Renal Rheumatology Department. 

During these two years I’ve had ups and downs as they’ve  tried to find the right combination of drugs to manage my condition – they discovered I’m atypical (of course!) and my case is further complicated because 10 years ago I donated one of my kidneys to a friend so some of the drugs normally used were subsequently not safe for me. At one point I was hurriedly admitted into hospital When a blood test revealed my creatinine level (measure of renal function) was 352 instead of around 100. Following a kidney biopsy and even more blood tests, it turned out the cause was the humble drug Omeprazole (which I was given to avoid damage to my stomach by the steroids) had managed to put me into renal failure!

More recently my blood pressure has started playing up - or should I say down - it always used to be around 120/70. But since the start of lockdown it’s been randomly dropping for no apparent reason 78/57 at one point. I managed to lose consciousness on the stairs one day in May and ended up at the bottom with a very deep straight cut bang in the middle of my forehead! Which meant another speedy admission to hospital and various scans etc. Luckily the little bleed on my brain they spotted on the first scan was confirmed as a result of the fall and not the cause of the fall - that was a huge relief. They let me come home after three days my dear sister Anne came to look after me for a week, to check that I was ok to get around and relatively stable on my feet.

My condition seems to be stable at the moment with a combination of treatments, including Sarilumab, a specifically targeted biologic immunosuppressant. A biweekly injection so expensive they had to apply to PHE directly for permission to use it on me. It took about 2 months earlier this year to be approved but within 6 weeks of starting the injections, it felt like a miracle for me. Though not a ‘cure’, my symptoms are now mostly manageable with occasional flare-ups lasting days instead of debilitating weeks at a time.

Throughout this time the wonderful doctors have encouraged me, whenever possible, to exercise so as not to lose mobility. This is a photo of me today, 23rd August 2020.

The emergence of Coronavirus meant I needed to be ‘shielded’ and to be honest, I was terrified when it began. But no more. I am now confident about my ability to keep myself safe and avoid risks without hiding at home 24/7.

And for me, the upside of Coronavirus is I discovered ‘The Conqueror Challenges’ (aka ‘My Virtual Mission’). And through this website/app I have been ‘virtually’ undertaking walking journeys since July.  I go out when I can and walk, or use my elliptical machine at home. I’ve completed three challenges so far of increasing distances and have earned three fantastic medals! See below...


(If you’d like to join in these challenges use this link and get 10%off your first challenge:
https://www.theconqueror.events/r/SS9614 
And I really hope you’re still reading and haven’t yet fallen asleep because this is the REALLY IMPORTANT bit! 

I’m now on Challenge no.4 - The Camino de Santiago pilgrimage; a walk of 480 miles (or 772 km). 

And here’s where YOU come in... As well as the achievement and enjoyment of just getting to walk this far I’d like to raise some money for 2 causes close to my heart:
1. The wonderful Hammersmith Hospital for the amazing care, treatment and kindness I and countless others receive on a daily basis. And
2. The wonderful Innocence Project (This organisation covers many countries of the world and seeks to free innocent people have been wrongly convicted and jailed).    

So please will you sponsor me? Either  a one-off amount or an amount per mile/I’m. I will keep you updated as to my progress. 

I began the Camino de Santiago on 11th August and have so far walked 53.7 miles (93km), so I still have some 426 miles to go!

If you are able to help me, please contact me in whatever way you feel most comfortable. Thankyou! And I hope you’ll join me on this adventure! 

Sue xx

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