Christelle Duminy, 27, is a Rand therapist and her work with brain-injured children is very satisfying for her. Even through the shapeless workout suit her fragile kind of beauty stands out. She’s one of those angels of light: people who make the world a better place with their inspirational optimism so that everyone tries harder and easier to brave.
She first talks lightly about fibromyalgia , over how it affects her. She tells no one knows what is causing it; there is no medicine or cure for it; sufferers experience the fatigue and pain as the worst; you get used to it later; so she watches a DVD at home now, because it gets too painful to watch a movie in the theater; yes, she found ways to live with fibromyalgia; in fact she is okay.
But after a while she dropped that hedge. “I’m only twenty-seven! Such a thing should not have happened to me now. I always dreamed of having my own home. And of children. But now it’s such a struggle to just take care of myself – I can’t. How about an entire household? It feels to me that those dreams can no longer come true for me because I am unable to do so. And that’s not my fault – I didn’t do anything to earn it. “
You feel the crux of the suffering surrounding this disease: that it makes people small and poor in life itself. It strips them of their strength, of their abilities and ultimately of their dreams. It reduces a fulfilling, full life – in which freely given, done with dedication and participation without reservation – to one of painful, mere survival. These losses are emotionally painful, even worse than the physical suffering. Four years ago Christelle still loved to dance.
“Long arm… that was all I knew! But I just can’t anymore. My muscles are too tame and sore. On a bad day, any kind of touch hurts – I want to jump through the roof of pain if someone just touches me. On such days, hugs are a torture. I don’t even have a chance for a movie. I don’t have the power to put on, wash my hair and sit for two or three hours. My body hurts so much that I just want to go home to lie down. “I can no longer just go out to dinner with my friends and order anything as before. Pizza and everything with flour and yeast give me incredible cramps in twenty minutes.
“Your quality of life is changing dramatically. If you are so tired, few things remain. People don’t really understand it. You don’t look sick to them, and when you say you’re tired they think they’re tired at the end of the day and they have a chance to do it – what about you now. “
How did she get sick?
Christelle says she had the flu in April 2005 – at least that’s what she thought because her body was sore. She got better, but the pains in her joints and especially in her spine remained. And she began to sleep incredibly badly.
“I fell asleep easily, but was awake briefly. It was as if I couldn’t find my body – in no way could my body become comfortable and relax. As a result, I was extremely tired.
“Thanks to my background in health, I started to suspect fibromyalgia, but you better deny it than admit it. I waited three more months before I went to a rheumatologist – which confirmed my worst fears. ”
And then began the long road to acceptable health.
“I tried everything. Grace, the list is long. From energy drinks, nutritional supplements, a chiropractor to all kinds of rates.
“At that point, I was hoping for an instant response – a pill or someone to heal me.
“It took me a long time to realize nothing and no one was going to help in itself. My health is in my own hands: I will have to see what works and what makes me feel better and cut out what doesn’t help.
“But I realized that I can get help from different experts. A homeopath taught me how to get my irritable bowel under control; a pressure point practitioner tremendously helps my back pain; with Walk for Life I get the necessary exercise. If any other symptoms occur, I go to the doctor. I work as much as I can and I keep my head positive by focusing on healthy, tasty things.
“Nothing works alone, but together, everything gives me an acceptable quality of life. I don’t really accept the new life yet, but I’m on my way with myself somehow. I am grateful that I was able to keep working – and even staying social. I went to Newlands on Friday and it was a party! ”
Fibromyalgia: the facts
• Anything special or a fashion ailment? No, fibromyalgia is a recognized disease and the most common cause of long-term widespread chronic muscle pain . Strikingly, many sufferers are top performers who push them to the limit.
• There are no tests for fibromyalgia. The disease is diagnosed if it is painful for you to press on at least eleven of sixteen specific points (see the sketch), along with a group of symptoms.
• The 3 most prominent additional symptoms that sufferers complain of are pain (at some reasonably mild, at others intense), that they sleep extremely badly and overwhelmingly fatigue . Many also complain of headaches, irritable bowel syndrome, new food sensitivities, impaired concentration, forgetfulness and the inability to get words and speak fluently.
• The cause remains unknown. Most sufferers associate it with an incident such as a bad flu, or a stressful experience such as a car accident. Presumably, there is a genetic link that is “switched on” by these types of environmental factors. Either way, the body seems to read and / or process sensations incorrectly so that sufferers feel hyper-intense. Normal pain is thus experienced in the superlative staircase.
• The first step towards recovery is an accurate diagnosis , says Prof. Helgard Meyer, lecturer in family medicine at the University of Pretoria. Start with your GP – or look around until you find a GP who is specifically interested in fibromyalgia. He will eliminate other diseases and / or refer you to a rheumatologist. For long-term management, a GP is your best partner.
• There are no miracles , despite the claims. Some medicines work for some people. Test it with an open mind – and if it doesn’t help within a reasonable time, talk to your doctor again.
• Few sufferers get better if they do not adapt their lifestyle as well . You have to exercise, sleep properly and adjust your eating habits to your body. “Exercise” does not mean you have to become a marathon athlete now. Sufferers benefit most from light low impact exercise such as a ten to twenty minute walk. Food that specifically irritates must be cut out, as well as caffeine. (Beware of combination pain pills because many contain caffeine.)
• A regular sleep routine is a must. Go to bed at a set time, sleep as many hours as you need to get up to rest, and not much more or much less and do not cut an owl during the day. Sleeping pills are sometimes recommended for a few weeks, but very rarely for longer.
I’ve learned nothing is going to cure me – fibromyalgia is with me, for life. I accept it heavily but there are things that help, such as:
• a support system . You need people who understand and stand up when you’re having a bad day and can’t get to everything.
• Listen to your body. To me, bread equals pain. So I know my body doesn’t want it. I’d rather focus on things that work for me, like the pressure point technique and Walk for Life. But people are different and each of us has to find our own recipe.
• Get balance . I know now it’s important not to pressure yourself and just work or just rest. You need to balance work, sleep, exercise and relaxation.
• Keep your inside conversation positive . My inability is hampering my self-esteem – I could always do so much. I work on it by making a list of my tasks and ticking them off as I finish them so I can see I’m making progress.
• Get practical help . If you are struggling with a task, ask an occupational or physical therapist what cute patents can help with it. For example, I acquired a wrist splint because my wrists get tired when I drive.
• Rely on God. It’s actually first on my list. When I lie awake at night, I can’t keep my housemates from sleep, but I can talk to God. He is very comforting to me.