In 1983, at the age of 31, I was diagnosed with insulin-dependent diabetes mellitus (IDDM) – a life sentence of daily blood testing and injections to keep me alive.
Six years later, my husband and I applied to adopt. Within 12 months, I began suffering from terrible anxiety and crippling physical afflictions, especially in my upper abdomen that would tighten into a painful and disabling knot for no apparent reason, as though it had a mind of its own and wanted me to know ‘it’ was in control. Of course, I blamed everything on the massive stress of going through an adoption, with constant high pressure visits from social workers. After all, what else could it be, I kept telling myself?
In 1993, we were over the moon to welcome our two children into the family. But my body adamantly refused to share my happiness, symptoms became even more extreme, with constant lower backache and a left leg that really did think it had a mind of its own and caused me endless pain and discomfort.
Things rapidly degenerated and soon I was almost living at my doctor’s who would have been forgiven for thinking I was nothing more than a hypochondriac, so inexplicable were my symptoms.
Finally, after 4 more years of pain and frustration, my diabetes consultant concluded it must be a neurological problem. My next referral was to be to a neurologist, someone I chose because my mother-in-law liked him. Serendipity was on my side for he turned out to be one of only a handful of specialists in the UK who actually knew about the syndrome, and after a physical examination, he confirmed that I was presenting with a condition called stiff person syndrome (SPS). But he added: “It can’t be that as I have never seen a case before and it’s too rare”.
As I know now to my ultimate cost, he was both right and wrong – I did have SPS (more commonly called stiff person syndrome these days) and his subsequent tests proved it.
Once diagnosed, at least I did not have to make any of the former excuses I had used when people asked why I was walking in a strange way, although a bad back was one answer that turned out to be true! IDDM and SPS are both autoimmune conditions. About 48% of SPS sufferers also have IDDM. Most sufferers have at least one other autoimmune condition. I scored my hat trick when I was diagnosed with hypothyroidism.
In 1998, in my attempt to raise awareness of this little-known syndrome, I set up a support group with the only other five people I could unearth with SPS in the UK. After that, with plenty of awareness-raising wherever I could, the group’s numbers increased, and on the back of this success, I was able to get charitable status in 2003, which would prove an invaluable tool in fighting the good fight.
From day one, I have kept a diary, which these days is housed on the charity’s website (www.smssupportgroup.co.uk). It reveals in intimate detail the ups and downs, the laughter and tears and the constant love and care that surround me. Anyone who reads it from start to finish, such a marathon task, should be rewarded with one of my chocolate cakes for their stamina and endurance.
My sister told me my gravestone should read: “Here lies Liz, who always stood on the grass” by which she means I do not always follow the rules and I guess one incident springs to mind that illustrates this rather nicely.
Once, I went to spend a few days with a fellow SPS sufferer. My mission was to help her find life just that little bit more interesting and worthwhile. With her on a three-wheeled walker and me with a wheelchair, we struggled down to a nearby yacht club that I thought would be a great place to start fund raising.
I headed towards five lifeguards who were at the marina and bluntly told them I was going to fine them. “Why?” they asked. “Because you are wearing shorts, and I don’t think it’s warm enough”, was my reply, after which, I showed them my charity card and all five laughed as they emptied their pockets.
Then I saw a guy coming out of a public toilet while zipping up his trousers. Card in hand I boldly confronted him and insisted it was an offence to do that – but if he would make a donation, I would overlook it. Confounded by my audacity, he paid up! His wife, who was waiting for him burst into tears of laughter.
Moments later, I collared two guys walking toward us, both with a pint glass in hand. Naturally, I asked if they realised it was illegal to drink in public. “Oh no, I’ve just been fined for drink driving”. Card shown, cash handed over, result!
Several more “victims” later, we returned, shattered and exhausted, to my friend’s house. But we had learned a valuable lesson – that it is possible to make a difference and have a lot of fun doing it!
Finally, a professor once said: “When you hear hoofbeats, think of horses. If you can’t see them, look for zebras”. In other words, once the more common conditions are eliminated, find the correct diagnosis somewhere else. And that is why our charity has a zebra ribbon as our logo. I even have it tattooed on the inside of my wrist.