We are right in the heart of autumn. Most of the leaves have fallen and I always am grateful to see the late-blooming trees in Spring are still peppering landscapes with a bit of gold and amber. I look out my patio window and see half the trees barren with their fallen leaves covering lawns. It is a time of year if you are lucky and it’s warm enough and sunny, you will be walking to the sound of crunchiness underfoot…gosh I love that sound!
# It has been unusually warm for this season up to last week in the Montreal area and we seem surprised to feel the brisk damp wind force us to wear hats, scarves or at least a good lined raincoat with a hood. I prefer the hooded coat since an umbrella keeps only my upper body dry and is it such a…
I had just started studying at Concordia University. I had already earned a certificate in Gerontology and worked as a personal support worker in home care.
Married 16 years, working part-time, raising 2 children in elementary school, the typical life of suburbia…2 kids, 2 working parents, owner of a bungalow, a summer camp, catamaran (not noisy motor boat), except we had 2 small cars and not the station wagon and 2 small dogs and not the huge canine. It was just plain old suburbia.
I earned just enough to pay little extras, my car, my tuition, books and personal expenses. My going back to school was a bit of a prickle, my family was somewhat inconvenienced at times.
Life was pretty good. Summers were a nice break as school was out for Mommy and the children. I had 4 weeks’ vacation, the children’s father had 5 weeks, so we would share the time together making 7 weeks where the children could stay at the lake more often, with one parent always there.
I was diagnosed with osteoarthritis in my neck, since I was 32, most probably genetic. Doctors first said, it was a neck sprain from leaning my head forward too much for all that extra reading after a day’s work; they said, lawyers, doctors and other professionals suffered this same problem. {Well, gee! somehow that took part of the pain away to know that people with PhD’s suffered the like!…kidding of course!} In the meantime, I have added little tiny round mirrors over the side mirrors, on both sides of my vehicle to view better, my blind spot which prevents me from turning my head too quickly…ouch!
…I was a court transcriber/typist at home when the children were young. {Basically, in those days, if you wanted to earn money homebound you either had a sewing machine or a typewriter. Remember those big boxes with a keyboard set on the top? Those were typewriters.}
I would work when the children were napping or asleep until the wee hours of the night. It paid as much as you could put out; I got $1 a page; and it’s with those hours that I purchased my little 1984 Renaud V, 4 speed, in 1986. It was all paid up by 1987. Working at this job enabled me to have my own pocket money … I could afford to bring the kids to MacDonald’s {don’t you go up in arms now with how unhealthy it is to eat there. It was a fun outing for the kids after a picnic at Fort Chambly, a long bike ride, dip in the wading pool and across the street was McD} So all that combined, it WAS a healthy day both physically and psychologically.
Working as a support worker which meant some strenuous work albeit labours of love and compassion, plus all my other roles (family, community, school, academia), all came to a peak.
I am sitting in the doctor’s office and waiting for his diagnosis for the symptoms I had presented, insomnia, feeling emotionally drained, tired, and achy joints, lower back pain, upper back tension and headaches, joint pain in elbows, wrists, knees too. I thought it might be just overextending myself as many of my peers were subject to…family life, going back to work once the kids were in school, school committees, school board committees and the list goes on.
“You have Chronic Fatigue Syndrome”, he says matter of fact like. “You may have caught a virus at some point and never quite healed…here is literature you can read {he hands me over 4 sheets of paper stapled together} that explains this condition along with Fibromyalgia. “What the hell is that?”I thought, “Is he trying to tell me in a nice way that it’s psychosomatic but they have a new name for such things now?”
“You might consider joining the FMS Association,” he adds, “I can prescribe anti-inflammatory medication for you,” and he writes up a prescription. My doctor knew how hard I worked, and volunteered for years as a breast-feeding consultant, my school and community involvement as well as returning to school. He was treating my whole family, and I had been at this same clinic since 1974. So why wouldn’t I believe this bomb he was handing over to me?
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” 1
I read through the material when I got home. I did not have access to the internet…come to think of it, who did at that time? It was not until the 1990’s that most “ordinary” people did…that I knew of anyway.
I worked at a CLSC which is community access for medical and psycho-social and community services. Quebec has many spread out across the province. They are the pivotal hub accessing various services both in physical and mental health along with community services.
The doctors at my work often gave me medical journals they received in English. They knew I was a medical information junkie. I learned more and more about FMS and CFS and it was not too encouraging. Most doctors understood very little. Diagnosis was not a perfect science…it was almost like it was ‘hit or miss’. No x-rays to prove anything, just the patient’s word for complaints of constant pain!
Later on a social worker and nurse at the CLSC, started a support group for patients diagnosed with Fibromyalgia and most of those who attended had multi-disciplinary diagnoses. Many had psychosocial concerns as well as chronic ailments. Honestly, I did not want to be part of such a group…my lord! The stigma associated with this was huge!! I was also working and living in the same community, hence, there would be little anonymity or confidentiality. Let’s face it, I lived in a very small town and did not see much relief or support in the near future!
I tried to explain to a few close friends and family but most had no clue what it was so it was difficult to be sympathetic. My mom tried to understand but if there was no cure she just worried and I could tell it upset her more, so I tried not to talk too much about my aches and pains.
I am not too keen on hearing complaining either. My mom did complain a lot most of her life…depression, chronic ailments as well, my grandmother too. Being raised by both women, I had had my fill of hearing them complain. I know they suffered but I also remember hearing and seeing reactions of friends and family. It was never very pretty.
I had a childhood friend who criticized me for complaining too much. I had not realized that I too had openly complained so much. Boy oh boy did that teach me a lesson, to put up and shut up more.
I started having migraines at 14 years old and this friend and I became friends when I was 13, so by the age of about 20, that’s when she told me I was annoying. I guess I was to her. Lucky for her she never had to endure the ailments of any of these invisible conditions.
Let’s face it. If you have not experienced it, you don’t really know. So, I don’t fault anyone for not understanding…I don’t fault anyone for disbelieving but I do wish there were more compassion…just a little.
Some friends and work colleagues who later suffered with FMS suddenly understood me…sort of; but mostly there were comments I could live without.
“But you don’t seem to suffer as much as I do. You work every day. You don’t take strong pain killers like I do. You must be a rare case with little symptoms. Maybe the doctor made a mistake.”
Even my best friend does not quite understand since people she knew talk about their debilitating pain regularly; one of her friends has been accepted on disability.
A friend in Toronto finally got accepted for disability but…To get on disability, you basically have to live on welfare for over a year and maybe it will accept your condition.
Some friends and colleagues have said to me: “Well you don’t really have a strong case of FMS. You mustn’t have it that bad.” That is like saying to someone who suffers with Schizophrenia, “Well if you aren’t talking to yourself out loud, wandering the streets, you mustn’t have schizophrenia that bad.”
I was getting so fed up of people telling me how I felt! I rarely admitted and even today, rarely do as well acknowledge my FMS…why should I? Admitting you have CFS or FMS is like telling someone you have genital herpes or warts! No one gives a shit…really! Not that I do have herpes or warts but I sure do empathize anyone that does (and a lot more do than the public cares to admit…but that’s another topic for another time… the stigma of STI’s).
My family in Toronto does support me, however. My uncle is a speech therapist and worked many years in homecare…he gets it. He explained to his wife and my cousin…so they have an idea that I do suffer, and they do have compassion. They never judge me and often ask, “How are you managing your pain?” There is feeling of comfort when someone gets it.
When I worked in Toronto at the same help centre for youths, I was hired the same day as another woman. She was about 15 years younger than me. She was a slim, frail woman. She has rheumatoid arthritis. I could only imagine how long it took for her to get ready for work. How I admired her. She could easily have gone on disability. She explained once, that it took her several hours to get ready to come to work, yet she did and chose to. I had worked in home care and knew how debilitating this disease could be.
When she learned I had FMS…she always would ask ME how I was…imagine that!!! It seems that many people who suffer chronic pain seem to have compassion for others who do.
One year during our annual professional staff development training, she and I had agreed we would try to exercise more to keep our bodies more supple. We agreed to coach (nag) each other from time to time. I felt honoured to be coached by such an amazing woman. I so miss her today since I transferred to Montreal!
I don’t really talk much about this with my adult children…I don’t think they really believe or understand that it is a real condition.
Between 1987 and 1997 I decided not to publicly acknowledge I had FMS. From time to time (at least one a month) I remember sitting in the living room and just breaking down crying. The kids or their father would ask what was wrong, and I would always reply the same thing…nothing really, I just get at my wits’ end sometimes…so tired of carrying this pain. My neck, upper back and lower back were the worse…I would often lie on my tummy on the foot stool just to take pressure off my back and watch t.v. like that sometimes. No one said anything…family just looked at me as if I were a bit weird but at least they didn’t mock me. Everyone sort of pretended all was just normal and continued watching their show on the television.
FMS is too misunderstood…insurance companies refuse any compensation and at one time I took several months off and my doctor had to mark Situational Depression to make sure I received full benefits for the time off work.
I did have an amazing doctor that time in 1993. She treated holistically…body, mind and soul. She had prescribed a very low dose of antidepressants to help me resume sleep which in turn should ease my pain. It did actually impact on a better (not the best but that’s just me) recuperative sleep. Medical professionals were just learning what they know to be true now, that low doses of antidepressants enable patients to feel less pain. I would go on and off these antidepressants for the next 15 years.
“According to the Mayo Clinic, “The painkilling mechanism of these drugs is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don’t work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate.”2
Moving to Toronto in 1997, I saw various medical health professionals: orthopedics, rheumatologists, physiotherapists, naturopaths, acupuncturists…who all specialised in chronic pain. Upon visiting each one, I pretended not to know what I had…they all came to the same conclusion…FMS.
I finally saw a Shiatsu therapist who told my boyfriend, “You think you have pain!? You do not know pain until you live in your girlfriend’s body…she carries too much pain. It will take us many months to find minimal relief.” He was a gentle, kind man who had been practising Shiatsu for over 25 years! I could have hugged this man…I never told him I was in that much pain…but he knew upon examination, after the scan Shiatsu therapists do over your body. My current massage therapist does not doubt my condition either and does provide some relief.
Namaste
I found swimming in warm water, taking hot baths just immersing my whole body in hot water was soothing, Yoga (changing some positions to be more comfortable) was helpful, Mindfulness, relaxation, Tai chi, massage therapy, stretching exercises were several means of finding some relief.
I took anti-inflammatory meds off and on (that too is bad for kidneys and the tummy, ouch), took sleeping pills to stay asleep for at least 3 hours straight, off and on, but that too was limited in the time I could take since you build a tolerance to it. I’ve tried the natural source of sleep aides like Valerian (yuck so stinky) and Melatonin but they no longer work…I get the most frightful nightmares with them now. I am currently not taking anything except over the counter medication from time to time now and seeing my massage therapist. I have a referral to see an osteopath too…all these therapies are expensive and covering from insurance companies are minimal compared to all the treatment you really need.
In the past 4 years, I have since developed vertigo. The symptoms are similar to Meniere disease but doctors say I could not possibly have that because I would not be able to ever get out of bed…so what do I know?
The first months I got these dizzy spells, I would crawl on the floor to get my grandson ready for hockey…if I stood up, I was afraid I would fall and living alone, you take extra precautions not to get into a bind like that.
I did start this condition following a sinus and chest cold and put the cause to some ear condition. If I sneeze or laugh, it will make the world spin. I used to be afraid to drive…my doctor still said it was nothing. Finally, he said in an aloof way, that it was one of the symptoms of FMS and to just deal with it as were my migraines. And so I do and I have. The vertigo still comes and goes. Tonight it was present. I felt like I was hung over coming out of Starbuck`s getting into to my car. I am learning to just cope with it.
Reading through literature at the Arthritic Society has helped me somewhat because this huge recognized organization has listed FMS as a valid condition. Reading literature with the FMS association gave me less comfort ONLY because society and the medical environment have not embraced this enough…publicly, I mean.
Don’t get me wrong now. FM does not define me in any way and I don’t want to be labelled as the woman with FM, just a bit of compassion if I may be having a bad day would be nice.
I am certainly no expert on any of these joint diseases, I simply wanted to share my story and how the “stigma” of this disease delayed my getting help and often isolates me as other sufferers, I have no doubt.
Have you ever had the urge to squeeze your eyes shut real hard? Ever had the habit of twirling a lock of hair? Ever have to put a lot of effort to NOT use profanity? Come on, before your kids were born? In high school perhaps, it got you a detention or two or a smack at home? Ever had the urge to clench your teeth together real hard? What about smelling your food before taking each bite…every done that when you were younger perhaps? Did you ever bite your finger nails? Do you still do it? What about that annoying mosquito bite you got at the bonfire last night…do want to scratch it? Ever have your snow suit on, scarf, tuque, boots and then notice you got this annoying itch in the middle of your back. What do you do?
I remember when I was a child…all this was pretty much under 10 years old. I used to clench my teeth so tightly my jaw and neck hurt. I used to get this sudden urge and after doing it I felt a slight relief. I gradually forced myself to stop as I was afraid of wearing my teeth down. I was probably right too. But I had that option to do that.
I remember when I was pretty young…probably 7 or 8 and I used to smell almost each spoonful of food that I ate. My grandmother noticed that one time and made a mocking remark, “Hey, cut that out! You look like a dog who always has to smell his food before eating.” Hmmm, well besides turning beet red, feeling totally humiliated (my grandmother had a border at her dinner table) and I was scared silly she would tell my mom and dad of this little habit I had just started {My dad’s reaction scared me the most}…so I slowly forced myself to bring my food smelling to a hault. But I had that option to do that.
I do remember my grandson doing that with his food for about a year when he was about 6. It took me all those years to realize it was not uncommon for children but it was unusual for those who could NOT stop.
I remember going through a time that lasted a bit longer…maybe 12 or older. I used to squeeze my eyes shut real tight. The completed act would give me a brief sense of relief…until family caught me doing it and I gradually (it took years) stopped. I still will squeeze my eyes today and feel that sense of relief and am so careful not to do it often for fear my habit will come back. But I had that option to do that.
I used to bit my nails and my cuticles and the skin on my fingers. Okay, gross, I know, but I did not even notice I was doing it most of the time. One day when I was about 13 a family friend whom I looked up, asked me, “What are you going to do the day you are engaged and you want to show off that gorgeous diamond ring?” I thought about that and it took me months to curb that habit but I eventually kicked that habit it. But I had that option to do that.
My father in law used to swear like a trooper ALL the time. He swore whenhe was happy, when he was angry and when he was excited or frustrated. And believe me, in Canadian French, you have a WHOLE LOT of CHOICES in that vocabulary…all religious profanity. He was and still IS a teddy bear. Not a mean bone in his body but it was a habit…but guess what? When he went to church or was in public he was able to suppress that habit or say it inaudibly under his breath. But he had that option to do that.
My dad used to absentmindedly smooth his thumbnail over his upper lip when reading with great concentration. I also started that and yep, I still do it. I don’t intend to quit but choose to do that when reading, watching television or listening to music quietly…oh, yeah, even when driving long distances. It is soothing. I suppose I could quit completely…I would still have that option to work on it and stop though, now wouldn’t I?
I started twirling my hair when I was in school. I was probably bored out of my mind to start with but my hair was short, so I would reach for the longest strand in my bang or at the top of my head and twirl and twirl and twirl. My hair is quite long now and I still do it and I do NOT want to stop. I however, am in the habit of doing it all the time…yep, even when I am driving in the car…it’s easy with long hair! It’s not my fault. I find it soothing. Perhaps it started out of boredom, restlessness or nervousness (as a child life did get pretty tense sometimes) but nonetheless I find it soothing. That is why I never go for those tight curly hairstyles because I like the feel of the softness of my hair. Contrary to what experts say…I am not sending off messages to men I am with…nope, it has nothing to do with them. I am not flirting…I just like the feel of the softness.
I am sure you all have a few little quirky habits that you try to curtail and do only in private. Don’t shake your head there…you do too!
Where am I going with this? To talk a little about Tourette Syndrome…that’s where I am going.
“Tourette Syndrome (TS) is a neurological disorder characterized by tics: involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. The cause has not been established and as yet there is no cure.
Symptoms
The most common first symptom is a facial tic, such as rapidly blinking eyes or twitches of the mouth. However, involuntary sounds, such as throat clearing and sniffing, or tics of the limbs may be the initial signs. For some, the disorder begins abruptly with multiple symptoms of movements and sounds….” Read morehttp://www.tourette.ca/learn.php
Yesterday The Tourette Syndrome Foundation of Canada was using Twitter to help the public see first hand what it was like to live with the condition. You were to Surrender Your Say to Twitter and for 24 hours there would be tweets in your name that YOU have no control over some may be offensive. It’s an exercise to mimic the involuntary and vocal outbursts that people with Tourette Syndrome have, known as tics.
There is a lot of misconception on this condition by those who have just been diagnosed and by those who do not have it. Here are a few myths Shelby Crockett, a paralegal, has published on the websites of The New Jersey Center for Tourette syndrome & Associated Disorders.http://www.njcts.org/tsparents/top-10-tourette-syndrome-myths
More swearing – In reality, only a small percentage of those with Tourette’s Syndrome have obscenity specific outbursts.
They are mentally challenged – Tourette Syndrome is not an Intellectual Deficiency. It is a neurological disorder that is categorized by involuntary movement and speech tics.
It is extremely rare – It is estimated that every 1 in 100 children suffers from Tourette Syndrome. Many of them go undiagnosed and misunderstood.
Tourette Syndrome can be managed with concentration – Because TS stems from a chemical imbalance in the brain, there is no voluntary aspect to it whatsoever.
Only caucasians can get Tourette Syndrome – As with most diseases and disorders, TS does not discriminate.
TS is debilitating – Most people with Tourette Syndrome can go on to lead rich, fulfilling lives and take part in just about any activity as anyone else, especially if they are cared for properly. Listen to the interview below with a friend and former colleague, Virginia Middleton and she will share her experience living with TS.
Tourette Syndrome stems from psychological trauma – This was the prevailing thought but now, sophisticated imaging technology shows us that it is a neurological disorder.
Those with TS can’t do jobs with fine motor functions – Another false truth, famous Canadian surgeon Dr. Matt Doran was able to do complex procedures even though he had Tourette Syndrome.
They can’t be athletes – How far can someone with the involuntary tics associated with TS go in the sports world? For Jim Eisenreich, all the way to the World Series of Major League Baseball in 1997.
It gets worse as you get older – While some neurological disorders get worse with age, it is not generally so with Tourette Syndrome. In fact, many who suffer from it go through the worst during adolescence and can even outgrow their tics in adulthood.
So that is why I made my list of habits you and I may have had or still do but are able to “keep them at bay”. TS is different. As Virginia Middleton states in her interview, it can taper off as you get older. Yes, there are milder cases. And I am sure it can be difficult for those who have more pronounced symptoms. It would make for find “the right fit” for a job for instance as Virginia shares on CBC.
It is not an all or nothing condition…just like any other neurological or psychiatric disorder…the Tourette Foundation has launched an excellent exercise via Twitter, even if it is just to give the general public a brief glimpse of this condition.
Here are some interesting resources if would like to read more on this subject.
© Clr 2014 
Stop the Stigma 