Where to start…
I was blessed, perhaps, with ignorance when I was young. I had pain in my spine, hands, knees and hips from a young age (my earliest memory was at nine years old) but didn’t think much of it. I come from a family where we lived by the moto ‘no blood, not sore’ so I just got on with it. I did many hikes, mostly in the Drakensburg, but Otter Trail and others, and often wondered whether others had terrible burning in their feet after a days walk. But there was no blood, so it was not sore. I also swam for my province and participated in most school sports. I think this kept me mobile and positive.
I only really started to think my pain was ‘different’ in my 30’s, but I was told that there was nothing wrong. I was even given opioids to control the pain but ‘nothing was wrong’. When I was in my 30’s I also discovered I had other auto-immune diseases (Poly Glandular Auto Immune type II, with Addison’s) which affected my adrenal gland, thyroid, skin, blood pressure etc. I just thought it was ‘normal’ to feel exhausted all the time. As with many who suffer from Ankylosing Spondylitis, I was incorrectly diagnosed with Fibromyalgia. It was only when I saw my twin sister’s rheumatologist in Cape Town about 5 or 6 years ago, that I was correctly diagnosed. My twin Jeanne Livingstone, is my most understanding supporter because she totally understands! I am very blessed to have my twin in my life and am grateful that we can share our AS walk.
I am happy to say most days are good. I am on the biologic which has made a world of difference. My other auto immunes are also being treated which helps with the fatigue, pain, depression etc. that most of us feel from time to time.
So what is my moto – never give up! Go and do the impossible, because then it becomes possible! I am now a PADI Master Instructor and free diver. My chest has already fused so I did not think I could manage free diving – I did the impossible and it became the possible! I now regularly do free diving to de-stress.
I walk, enjoy each day as much as possible, and love spending time with my grandchildren. I choose to be positive, not because it makes me better, but because life is worth living. On those really dark days, I intentionally ask for help – I am blessed with a wonderful husband, children and twin sister who understand my diseases. I don’t sweat the small stuff, I spend time in my faith in Christ, I love my Great Dane and try and find times in the day for myself.
There is no quick fix and no healing, but life is wonderful!