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True life story

by Rose

Hi I am Allison Katts

I am 47 years old and was diagnosed with fibromyalgia in 1994

The reason I created this graphic was to symbolize our pain hidden behind the mask.

Fibromyalgia is such an invisible illness and many doctors do not believe in it because most test done come out negative and we look good but underneath that beautiful face is lots of pain. Chronic Pain that is unbearable at times and it fluctuate from hour to hour and day to day. We have our good days and our bad days just like everyone else however if we overdue it one day we pay with pain for the next three or four days. For the doctors that don't believe in fibromyalgia. "Walk in our shoes only for one day" and feel our pain then they would not say that it is all in our heads. Fibromyalgia is like having the flu year round. Weather, smell, hot and cold, food affect us especially stress and anxiety add to the pain for people with fibromyalgia. Some of the symptoms are sleep problems, blurred vision, itching, pelvic pain, hearing loss, memory loss. I can go on and on about the various symptoms of fibromyalgia but I am not going to instead I am writing my story which many of us can relate to.

As I look back into my life, I can that my illness began in 1989 after falling down the stairs in Sept of 1989. My mom was visiting and was so desperately waiting to go visit her mom about 3/4 hour away. I was doing laundry and slipped going down. My right arm got caught in the railing and I did a split with my left arm as all the weight went to it. I had three teenage children living at home at the time and everyone was sitting in the front room on the main floor however no one had heard me fall. Even thought I was hurting, my mother still was so anxious to go visit her mom that she failed to see how much pain I was in. I knew then and there how selfish it was of her to think of her own needs.

Because I had been so active and indispensable and able to do anything from housework, baking, cooking, plumbing, electrical, gardening, mechanical, everyone expected me to be okay and had basically expectations on me. My husband was a weekend drinker and so different from night and days when he was not intoxicated, however when under too much liquor he was like a devil and very abusive, demanding, would try to provoke arguments and would put me down. I had very low self esteem and knew only the role of a victim.

We did go visit her mom, my grandmother and the pain were getting worst, and just beard it. We stayed for about six hours. When returning home I took several extra-strength Tylenol figuring, it would go away. In the morning I made an appointment to see my doctor at 4:30 and didn't get to see him until 5:30pm.

He sent me to the hospital for ex-rays and they said that there were no broken but probably torn ligaments in my left shoulders. I was to wear a sling for three weeks. When I got home, it was later than the usual time for supper and no one had bothered starting it so there goes " little me" in a sling making supper with my mother staying with us for a while and a daughter old enough to warm up left overs however she was not interested in learning about cooking or baking. I did everything and were super women. Where I got the energy I do not know? Guess I had spoiled them too much. Who was going to take care of me? Who else but "ME?" It was integrated in me since childhood. I was raised in an alcoholic home and my mother was a caretaker and a victim and jump to his every need or rather to his every "Demands." I have four brothers and one twin sister whom it seemed that I was never better than she and they compared our marks and everything else. I suffered various abuse and basically had enough to deal with by just trying to survive. I went into a shell and my only companion was my cat.

I started therapy to heal childhood memories around the same time that I fell I started having severe migraines compounded with raising three teen which were out of control. It did not help with having their father set an example of disrespect toward me and miss treatment. I tried everything to keep the family from falling apart by getting help from Mental Health and Social Services and attended a tough-love group. However I was the outsider and did not drink or take drugs and as you guessed it I was the """outsider."""

Recovering from childhood abuse was difficult and I had a breakdown in July of 1990. In 1991 I moved out and had plans to move to just take care of me, however the same day that I had went to look at an apartment I decided to talk to my husband that I needed time alone to deal with my recovery. That same day he went drinking with my younger brother and phoned me and started calling me names so I drove to the apartment that I had looked at and asked if I could move in cause my husband was out drinking and there was a chance of him hurting me. I knew the owner and gave him $100.00 and would go see social services for the rest. He was in the process of painting and are very grateful that he still let me move in. In fight or flee I managed to move my single bed and some kitchen stuff. My children were home but wouldn't help probably because they were scared of what their Dad would do if he came home.

In October of 1991 I returned to school and Social Service was starting a program for women who were abused and to prepare them for the work place. The program was called Career Employment Preparation Program. There were lots of life skills and role play and parenting skill and two four weeks on the job training. I was in the course for two years and receive the first year Outstanding Student Award Plaque and the second year Edmonton Northland Student award Plaque and $300.00 bursary toward a trade. Even though I suffered severe migraine, I was determined to be self supportive. Migraines would strike sometimes in school and would need to be driven home. The migraines would be so bad that it affected my speech, my mobility and bedridden for usually three days. I was fortunate that my counselor was also the instructor for the life skill and coordinator for the program and she was very understanding and had seen me with the migraines before when I had to stay at the shelter. She would check on me out of concern and know that if I phoned that I had a migraine that I was not faking and surely would not be seen uptown like many of my classmates were. I was dedicated to my growth and to be self supportive.

In the fall of 1993 I attended college for Office Administrative . I struggled every day and was again an outsider because of the dysfunction and was made fun of. Instead of working as a group I had to struggle on my own. They were more into the competing thing and I was not about to bend and lower myself down to their degree cause of always having to match up to my sister. I would not share my marks and for that I received Lamp of Knowledge plaque from the mayor of our town. I was the scapegoat, someone to pick on which added stress and in turn suffer migraines. It was a two-year course compacted in one. However, I was determined to get my degree. I graduated in June 1994 and had my son and daughter and three of my counselors that I had seen in the years of 1988 to 1993 attended. It was so fulfilling to be praised and have them be proud of me. I was in my glory and I was shining with delight.

In the summer my illness progress even more and my doctor sent me to see a rheumotologist and that when I was diagnosed with fibromyalgia. I just could not understand "WHY ME" as I asked myself from time to time. I would be awakened with excruciating pain and cramp in my legs. As the days went, I suffered more disa bating pain and the migraines got worst but I was all alone to deal with it. No support from family and friends because they were used to the super woman that did everything for everyone else. The hardest part was that I wanted to be able to use my knowledge in the work place and be self-supportive and here I was having to rely on Social Assistance with the help of my doctor. Having a degree and being sick especially with Fibromaylgia which is an invisible illness did not gibed with the worker so I had to get a medical report from my doctor every month.

I moved to Ontario in 1996-1997 with a boyfriend and his kids which ended up a big disappointment because the weather affected me and the dampness. Some of his family did not approve of me and did not understand my illness and were saying behind my back that I was lazy when I didn't want to go anywhere because I had a migraine. Little did I know that I was moving from one terrible situation to another . I thought that if I started fresh somewhere's else then I wouldn't have the pressures from my mother to visit her even though she knew how I did not like going there because of the fact that my father is responsible for my tmj (jaw disalignment and did not grow the right way) and it was a constant reminder of the abuse that I suffered from the blow of his monster hands. Seeing him treat my mother like dirt just tormented me and she has to use a walker and yet he won't get up to get his own glass of milk from the fridge. It just frustrate me that he is healthy and walking and yet uses and controls her like a slave.

The dampness flair up my illness even more and the irritable bowel syndrome kicks in. I used to joke about it that I have to go uptown and get my laxative lol. But sometimes is was not funny trying to find a bathroom so I soon learnt where they were and would go shopping where I knew that it was available nearby. I did eventually move out on my own once I was accepted for disability. I was refused several times and writes letter pleading my case and getting more doctors medical report. I received my first check in December of 1996. It took me from June to December to get it. I had tried in Alberta in 1994 only to be rejected.

I joint a support group which helped me not feel so alone. Luckily I had my daughter and grand-daughter also move to Belleville to be close to me. As time went on, I needed more sleep and when I was able to we would go for long walk along the lake. I often had to tell my daughter to slow down and would run out of energy very quickly. I really did enjoy the sound of the water, the peacefulness and seeing the joys of my grand-daughter as she would dance along the path enjoying the beauty that surrounded her. Various parts of my body began to tingle and then sometime numb. My neck and shoulders were like a tight knock in a rope. Luckily my daughter would messages my neck and shoulder and that would ease it some. As each day went by my body was getting more sore and tight and my mobility was worsening.

I was seeing so many doctors and feeling unheard and they kept trying different medication and treatment me mostly for migraine. Well the migraine pain medicine did not help because the pain was caused from the tmj and all the nerves on my left side of my face are damage but I guess I can say thanks to my father for that :-(. I did eventually find a good doctor that was familiar with fibromyalgia and he is the one that finally convince disability along with a mental assessment that I can not work or will be able to work in the near future because of post-traumatic stress disorder along with the different symptoms associated with fibro.

I returned back to Alberta in Aug. 1997 and applied for disability again. I had to wait three months before it was approved as I had kept all the reports from the doctors and the assessment. Every province gives different amounts in regards to people needing disability.

I felt tired most of the time and was having non-refreshing sleep, and waking up stiff and feeling unstable and unable to make plans cause of never knowing how I would feel. I felt I was losing myself and no longer was reliable or available for friends and family. My hands hurt so bad and could no longer crochet or do lots of my crafts. It was a whole new adjustment and changes that were hard to handle. I was losing friends and seemed like no one understood my pain. I began isolating myself and wouldn't answer the phone and just had no desire to continue however fortunately my son bought me a computer in April of 1998. I had lots of knowledge on computers and it help distract from the pain. I started learning about the net and met a beautiful lady on icq who creates beautiful web sites and we time learnt with some of her guidance how to create them too. I bought a book called "Creating web sites for dummies." Well that dummie book was the best investment that I ever made. Through my making web pages and putting my writing out he helped heal some of the wounds and made friends and little did I know that there was lots of interest and it did help others. My creativity began again by my buying paint shop pro and using my artistic ability. I felt more human and so proud of my graphics.

I also started making characters for ms chat and became famous in there too as people would ask me to make them a character and as a surprise I would give them the gift of some characters which has twelve emotions. I really enjoyed it and would spend hours working at it. With practice I became better at it and learnt from a friend how to publish them. In m ms chat I am under the nick of whiteswan52. Please say hi if you are in there. I have over 100 characters that I made and now with my wrist it is very hard for me for coordination with using the mouse.

I search the internet about the disease I had and was in other chat room for chronic pain. I found Delphi in August of 1998 and have been attending regular at the beginning then once I moved to Edmonton in the end of Sept. 99 to August of 2000 I was so depressed that I lost all contacts with my INTERNET friends and isolated myself. I had lost interest in the computer all together. Having so many financial difficulties, I was not able to follow my diabetic diet and gain twenty out of the 40 lbs.  had had worth so hard to love upon being diagnosed with type 2 diabetic in Feb of 99

Now I feel that I must write my story of living with fibro and basically it is like writing a journal. Many of us can relate with each others pain and have empathy for them. Often reading other people story it can help put our lives in perspective and realize that we are not alone.

Fibromyalgia affects the muscles and sometimes a glass of water seems so heavy and other time my grips it too hard because we lose our lack of mobility. The body does not have the ability to transmit sometimes from the mind and body, and not being able to feel my own activity accurately.

I was referred by my doctor to seen a tmj specialist in Sept of 1999 and stayed at my doctor. The tmj specialist send me to receive physio for my jaw. The mouth is supposed to be able to move 5 cm from each side however mine was two.

With lots of physio therapy and exercise that I had to do at home I was able to reach a 4, however the excruciating pain was still there because of all the nerve damage. I was put on neurontin for the pain and it was to control the pain signal from my nerve damages. I felt like a zombie and could hardly drive and he wanted me to reach the point of 2,400 mg but I stopped at l800 and then went back down to 600 at day instead. Every third day I was to increase it till I reach the 2,400mg. All I wanted to do was sleep and has no energy.

Living in Edmonton created way too much stress for me as my mother would worry about me and yet still would want me to go visit her even though I explained to her about feeling weak and suffering migraine. It was too dangerous to get behind the wheel and I just could not handle having to be around my father. My mother put quilt trips on me with the big word "OBLIGATION" OR "DUTY" and would say to me "I WANT TO SEE YOU SO WHYS DON'T YOU FORGET WHAT DAD DID TO YOU" Not that easy when the pain of all the "BLOWS" to my jaw and left side of my face damaged. I found it very difficult dealing with my mom because of the unreasonable demands and would find it difficult to say no to her. With her constant demand and Denial by not accepting my illness, it did not help matters at all. Also her complaining about things my Dad had done to hurt her made me hate him more and also felt anger.

In Sept of 1999.I was to receive physio treatment on my jaw upon request from my tmj specialist so I moved to my daughter which was fine for a while but eventually the honey moon stage was over. I became more ill because of added stress and I felt that there was not respect in regards to them trying to be quiet when I tried to get some rest. I did not feel like I have the source of support that I needed and depression kick in. My daughter was very envious of me because my eight yrs old grand daughter would often confide in me and not her. There was a big argument over it so I felt I had no choice to stay in my room that was about 8 X 12 and withdraw from everyone and most of the time. I felt very depressed and unloved and distance myself and most of all looking at ways of getting my own apartment. The only thing in my life at that time was spending time with my grand daughter and waking her up in the morning for school with kisses and having breakfast together. I treasured those times very much and she seemed to thrive from it. She seemed to understand when grand ma said "Grand-ma was tired and needed to rest.

In December of 1999, I moved into my own apartment which was very difficult because I had very little money for food and was hard preparing meals for myself because of the pain. With being type 2 diabetic it wasn't healthy to not be able to follow my diet because of financial reason and the depression that I was feeling. It was a very noisy corner apartment with being so close to the main door and the driveway was very close to my apartment and the noisy vehicles. Living with acute chronic pain I was giving up and limited myself to many of my former activities like my friends on the computer. I lost contact with them and went into a shell. Being told by doctors to "just put up with it and not given any pain medicine. I felt like the world was bleak and that I was all alone in the forest with no one around to help me. My body ached and I felt despair and hopelessness and would force myself to go walk my dog. That was the only thing that kept me going and her comfort. Getting up to the bathroom sometimes I had to brace myself on the walls or crawl and if I sat on the floor I had a very hard time getting up cause my hips would lock. I have very bad wrist and have to wear wrist band so it was twice as hard bracing myself to something to get up. 

I was scared with living alone and with the strong medication that I wouldn't be able to get help. I would sleep a lot and she would lay down with me and seemed to know that I needed her affection. I was hoping to sleep forever and that I would just die because the pain was just too overwhelming and had totally given up on Doctors. I just could not even enjoy life cause with money I couldn't go out and do things. I would only use my car to go shopping for the little grocery that I could afford which was maybe 100.00 a month and sometimes less. Hard to follow a diabetic diet that way. It created lots of stress for me and the depression was to the point of feeling suicidal and so much hopelessness.