Living With Chronic Pain

Hi there, my name is Deborah. I live in a very beautiful city in British Columbia, Canada, with my wonderful husband, for without whom I wouldn't be here I'm sure. I am also very blessed with two adult children, that have given me unconditional love and compassion when I needed it the most. Without the three of them my life would be very difficult.

There are not many people that know a lot about who I am I have kept this as quiet as possible for over 4 1/2 years only telling close friends and of course my family, as these people obviously knew something was very wrong when I had trouble dressing and doing the "normal" daily routine. I have decided that keeping my illness behind closed doors so to speak, maybe isn't such a good idea. So here is what my daily life is like for those of you that do care to know.

First off I will go back to when I actually had a "normal" life. As a child I lived a very fast paced fun, and happy normal life as all other kids around me. Playing hopscotch, baseball, riding a bike, you know the typical things kids do. As I got older, in my teens I started to notice that I wasn't sleeping as many hours as I had when I was younger, but didn't really worry about it. I mean after all as a teen your life tends to be more hectic, and busy with dances and boys (haha), or even the usual job. I would work daily after school and every weekend too. I was never the type to go out and party with friends, or drink. I was always a rather shy person and kept very much to myself. With having five brothers and sisters quiet time was rare for me. I made the most of what little quiet time I had, trying to figure out what it was I wanted to be after I finished high school. I did graduate early but never really carried on with a career.

As things turned out I met a very fine young man that swept me off my feet at the tender age of 16 and within a few months we were married. Then within another few months our first child was born, a wonderful baby girl. The sleep pattern continued to change and of course I discounted this to being the typical baby feedings.

Two years later we had our second and last child, a precious baby boy. We now had all that any family dreamed of having. A son, daughter, and all the love in the world.

My husband worked in the logging industry and had very early morning starts, and the sleep pattern continued to be very restless for me. Again I never thought much about it until much later in life. To me at the time this was normal sleeping habits. Little did I know it was far from normal to most people. As the years changed so did our lifestyle. We went into business for ourselves, and added more stress of course. Stress is such a difficult thing to figure out. One day everything is great then all of a sudden it hits you (even though you didn't realise it had been building up the whole time) you go from being calm and content, to being frustrated and panic stricken in no time at all.

We had very wonderful days as self employed people, and most of those days weren't that stressful. Then a few years later we decided to change our lifestyle again and work for other people, instead of for ourselves. My husband remained self-employed and I went to work as a cashier for a local department store. I loved it, the stress levels dropped and I was still doing what I enjoyed the most, working with people.

In 1995 I was at work one day and all of a sudden was stricken with the most overwhelming headache I had ever had in my entire life. I was given a ride home by one of the staff as I was in no condition to drive myself home. This horrid headache lasted several days so I sought medical help. After a very exhausting two and a half weeks with this "migraine" my Dr. suggested admitting me to the hospital for what turned out to be a very long series of tests and needles. He ordered up brain scans, fully body scans, blood test after blood test, and the help of many specialists. Each test that came back had the same result, sorry your tests say you are not sick you are perfectly healthy. This went on for what seemed like forever. As the time passed I continued to lose weight, having dropped almost forty pounds in just a little over four months. I went from a normal size twelve, to a mere size five. I got weaker, more depressed, and the migraines got that much worse. My sleep was almost non existant now and I did the best i could each day to merely survive.

About six months after the first migraine hit, I was referred to a neurologist (brain specialist) who felt at this time, it would be best to admit me to the hospital again, only this time it was for treatment of the mysterious yet persistant migraines. I was admitted within a week and stayed there for five days, being injected with very strong medications to decrease the size of the blood cells to the brain. This in turn was to take away the migraines. It did do that, thank goodness, but not without causing excrutiating pain and discomfort to the rest of my body. Every injection caused the veins they were going into to collapse, so this meant a new location for the medicine every four hours. After I was released from the hospital I was placed on a nasal spray called "Migranal" which kept all future migraines at bay for me. Still there remained the unsolved mystery of what was making me so sick. I wasn't sleeping more than two hours a night, getting dressed was very difficult, the chronic pain in my whole body was at most times, much more than I could bare. The neorologist also suggested doing some testing, this time for brain lesions and yes you guessed it cancer tumors. Of course I was devistated but not surprised at what he was telling me. After all I was beginning to fit the profile, with losing the weight, the headaches, everything to him spelled one thing, and he was very honest about it. I went for the tests and then had to wait three weeks for all the results to come back. On December the 24th at 4 p.m. we got the phone call we had been waiting for, despite being anxious, and very nervous about it. The doctor asked for my husband as he felt this would be the best person to tell what the tests said. After hanging up the phone my husband turned to me and said, well the tests were no more conclusive than any of the other ones that had been performed. The doctor said he had no answers. To say the least that was no more comforting than if we had found out it was cancer. To me not knowing what was destroying my body was every bit as hard to handle as the possibility of having cancer.

My doctors continued relentlessly with all the testing and placed me on many different types of medication in hopes to clear up whatever this illness was that had over taken my body. Sleeping pills for sleep, anti-depressants to stop the non stop flow of tears, pain killers to assist with the intense agony in every inch of my body, muscle relaxers, and anti-inflamatories, oh and lets not forget the migraine spray either. Every few months the dosage or pills themselves would stop working so we would try new ones to see if we couldn't gain the upper hand on this illness one more time. I wasn't able to return to work as the pain was too unpredictabe from day to day. One day you get out of bed on your own, the next you can barely roll over in bed on your own. I have had my own walking companion for almost two years now as my balance became more unstable by the week, and after a fall that injured my tailbone it was suggested that a cane would be a good idea. Nothing like being kicked in the stomach when your down. To me it was devistation, thirty-eight years old and can't walk on my own two feet anymore. How could this be happening and yet not know what was causing it?

It took the better part of a year before a name was given to the illness I was suffering from. Just shy of ten months to be exact. They gave the illness I have the name "fibromyalgia". Such a big word for such a horrific illness. To go from one day being healthy and happy, to the next day being very sick and depressed from morning to nightfall. I have now lived with this illness for more than four and a half years. Its ironic really after a while you tend to get somewhat used to it. The medications change and so do some of the many symptons that go along with it. Or perhaps it is that you have finally found the right combination of medications to take. After all, after over four and a half years of testing you are bound to hit something right.

Fibromyalgia has numerous symptoms which include, fatigue, sleep disorder, severe muscle pain, migraine headaches, depression, memory impairment, morning stiffness, tingling of the hands and or feet, just to name a few. Trying to get dressed by yourself can often be very agonizing and difficult. Doing the normal daily routines, such as shopping becomes even harder to do alone, but for me the biggest challenge was trying to stop the outflow of tears that would strike from just a simple hello some days.

I used to be very active in the work force and now it is something I just can't possibly do on a day to day basis. My husband still remains self-employed and I do whatever I can to help him with the paperwork that has to be done, but I do it when I am feeling up to it, not when my employer thinks I should be doing it.

There is a whole new level of understanding that is needed when dealing with people suffering from chronic illnesses. A sympathetic person without showing pitty is such an asset to a person in pain. I won't deny that because you still look fine, and yes healthy, that it is hard to be sympathetic to the needs of people like myself. I hear it all the time, you look great today (yes on the outside that may be true) but on the inside it hurts like hell. You just feel like curling up in a corner and doing whatever it takes to get rid of the pain. The pain can be so bad at times that even demerol, or morphine don't take it away, all it does is numb the rest or your senses so you don't really feel the pain anymore, or anything else for that matter.

I have recently started on some new medication that was suggested by a friend. This new "miracle drug" (ambrotose, made mainly of freeze dried aloe-vera gel extract) is not a drug at all in fact it is an all natural product, that increases glyconoid levels in the body, which in turn have helped me to gain some control over my own body. After spending thirteen weeks on morphine pills to ease the pain, it is such a treat to finally be off of it. The new medication has increased the circulation in my body and that in turn has decreased the pain. I am also finding myself feeling slightly more rested in the morning and have the energy to go for small walks and to the grocery store again. Although there are still many things I cannot do, I am at least able to have a relatively normal life again. The pain is still always there, but not nearly as severe as it had been for such a long time. I do a daily exercise routine that helps to alleviate the pain and add strength to the muscles that so often give me problems. It is my plan to some day dance again, which is something I used to love doing and have been unable to do. Now when someone says to me, you look good today I can smile and say thank you instead of bursting into tears. I do still have my "sad days" but they have also decreased incredibly. For any of you that do not live in such pain, or know of someone that does, I know it is difficult to understand what people like myself live through on a day to day basis. All that we ask is that you care enough to listen to the pain we talk about, and be a little bit compassionate please. Compassion goes a lot further than you might think, and it also helps dry up the tears. Just because we look good on the outside, doesn't mean we feel as good on the inside.

I am so thankful for the friend telling me about my new found "miracle medication" as it has restored my self-esteem, along with my smile. Without these new pills I am not so sure that I wouldn't still be taking eight morphine pills a day. Now for the past two months the strongest pain killers I have taken have been tylenol #2's (tylenol with codeine). Even taking the tylenol is not a daily ritual anymore. As for the migraines they too are something that only happen occasionally, and are not nearly as bad as they used to be either. Maybe someday I will even be able to return to work, I know it is wishful thinking right now but it is with much hope that I am able to carry on.

I am also very thankful for the many caring friends I have been blessed with, as without all of them my days would be very long. They have all given me so much encouragement and strength when I was so desperately in need and didn't know which way to turn.

To my family, I never could have done this alone. You have helped me through the toughest time in my life, never once giving up on me even when I gave up on myself. You have been the most wonderful gift I have ever been given and I will always remain strong as a result of all the understanding and love you have given to me.

One message I would like to pass on the anyone suffering from such an illness, is never give up hope. It may take time but I do believe that eventually there will be a cure found for this "mystery illness" they call "fibromyalgia". I have added a website to this so that anyone that would like more information on this illness, can find it easily. I have also added a link on my homepage to a number of sites dealing with fibromyalgia. To all of you suffering from this painful illness, be well and only do what you can do, not what others think you should be doing.

To the families of people with this illness the best advise I can give is this, try to become more informed about this illness, and you will see how much easier it is on both yourself and the sufferer. The more educated and understanding everyone is with people in chronic pain, the easier it is to cope with it on a day to day basis. I have also added the website address for the company that makes the product "ambrotose" that has helped me in so many ways to live a more normal lifestyle.

Last but definately not least, to my doctor, you have been a great strength to me throughout all of this, and I could never possibly thank you for all you have done for me. Without your persistance I know I would still be thinking I was insane. You stood by me every step of the way, never once giving up. I owe you so much for all you have done for me, and couldn't possibly ever repay my debt to you. All I can do is try to inform others of this horrid illness, and pray they are as lucky as I have been to find such a caring, and compassionate doctor. Again thank you for all you have done and continue to do for me. You truly are one of a kind.

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