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| National support | About MS | Get Involved | Life with MS | Research | Resources | News | About MSIF |
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In July, it will be ten years since I was diagnosed with Relapsing-Remitting multiple sclerosis. It was mid-June of 1994, when I developed a severe headache one night. The next morning I woke up with the left side of my head numb. Within a few days the entire left side of my body was numb. A few days later, my speech became slurred and completely garbled. I developed double vision and involuntary eye movement. I lost hand coordination and couldn’t write or feed myself. I couldn’t walk without help. I experienced loss of taste, a desperate feeling of being trapped inside my own body, and a rollercoaster of emotions that ranged from sadness and anger to euphoria…to name a few symptoms. I was admitted into hospital on July 1st. The doctors thought I might have a tumour, MS, or… “something else”. They started running tests: blood tests, CAT scan, carotid doplar, EEG, evoked potentials and MRI. After about two weeks, I was diagnosed with MS and was visited by a psychiatrist, social worker, physiotherapist, occupational therapist and janitor. I’m kidding about the janitor…it just seemed like every person who worked in that hospital was being marched in to see me. A dark picture was painted of what life with MS would be like. Provided with information on how I could modify my home to make it suitable for a disabled person, I felt no hope. I was released from hospital in mid-August, after being there for a month-and-a-half. I was told that because of MS, I could no longer pursue a career in Hotel and Convention Management, the program I had been studying for the past year…for it would involve long hours, shift work and stress. My neurologist at the time very strongly advised me to avoid stress, so I stopped going to him! I was told that fatigue, stress and even heat could cause my MS to flare up. The first four years of my life with MS were hell. I was paranoid. Whenever I had a headache I panicked, thinking it was the onset of a relapse. I lived in fear of having relapses, of doing anything that might trigger a relapse. I was depressed and I obsessed about MS, it was all that I thought about. I had frequent problems: weeks of double/blurred vision, hands that didn’t work, tripping, clumsy legs, dizziness, eye and back pain, diminished peripheral vision that led to my bumping into people and walls, etc. Then I was introduced to a series of self-discovery, personal enrichment courses. I was able to begin looking at life beyond MS, and to start putting some distance between myself and all the feelings of fear, anger, sadness and depression. I started pursuing a dream of becoming a stand-up comedienne. I began a practice of looking for the funny in every experience I had, especially the bad ones, and I felt joy again. I started setting little goals for myself and for my comedy, and I began feeling excited when looking at the future rather than fearful as I had felt for so long. Every so often when I was feeling strong, I’d push the envelope a little bit further by setting myself up to do something completely out of my comfort zone, like agreeing to perform a set of stand-up before an audience of over 1,100+ people…and I’d feel so alive…before, during and after that challenge. For me, MS fatigue is the most overwhelming and debilitating symptom of multiple sclerosis. I think it is one of the most bizarre and cruel symptoms, because no one but the sufferer seems to understand how one can look so well, but feel like death personified. Waking up after a restful night, only to feel completely worn out soon after. Having to stop in the middle of a short flight of stairs because my legs suddenly feel too heavy to move, and I’m so exhausted. Not having the energy to pick myself up and get off the bus at my stop, even though I’ve been sitting down for the entire trip. Getting ready to go out, and suddenly being so overcome with tiredness that I have to stay at home and rest instead. Everyone experiences fatigue differently, and I expect our methods for re-charging may be different as well. I know that I need short naps throughout the day to keep me going, and I’ll take them wherever I can. And yet at other times, I feel so energized as though I could run a marathon! Over the years, I have found myself having strange allergic reactions to foods (nuts, MSG, dairy products), jewellery, and even certain fabrics. Sometimes the reaction is visible, like a rash. At other times, it’s a horrible burning sensation, as though my skin is on fire. Most of my symptoms are non-visible: blurred/double vision, dizziness, eye pain, back pain, extreme fatigue, severe headaches, frozen feet, nausea, numbness, tingling, memory, weakness, skin ‘burning’ sensation, seeing ‘flashes’ of light, etc. Sometimes my symptoms are visible and/or audible: trouble swallowing and gagging on even a bite-sized morsel of food; thinking one thing and saying another; words slurring together. Two years ago, I had four falls. I didn’t trip over anything, I was just standing one minute and flat on the ground the next. My neurologist said that those falls were relapses. I have never been on any of the drug trials. I was placed on Prednisone when I had my initial ‘attack’. Two years later, I had a relapse while on holiday in England and was given Prednisone again. In the beginning, whenever symptoms resurfaced I would rush to my doctor and/or neurologist. I’ve since learned to wait the symptoms out and to give myself lots of rest when I have flare-ups. Before MS I took life for granted, and I neglected the physical, spiritual, mental and emotional parts of my being. Since MS I have become so aware of just how important each of these areas are to my total well-being and quality of life. I never truly recognized and appreciated the love and support of family and friends before MS – but it has become so tangible, so real to me after MS. How special kind gestures, helping hands, encouraging words, warm smiles, beautiful sights, colours and sounds are to me now. After having experienced numbness in my hands, I marvel at how precious ‘touch’ really is, and I can now give a ‘mean’ handshake. My mind set has changed, and with it so has my outlook on life. Changing my focus hasn’t made my MS go away, but it has made it easier to accept and live with, and it has helped me to feel so happy. When my mind is laughing, happy, positive and hopeful, even MS can’t bring my spirit down. |
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