AN UNEXPECTED JOURNEY – M.E. – NOT ME!
The Old Audrey was gone! Even I couldn’t believe what was happening to my body!
I was happily working full-time in Human Resources. Just where I belonged – people were my thing! I had the best husband a lady could ask for and 2 great kids, whom were athletic driven so I was in the arenas and soccer pitches 3-4 nights a week. And I squeezed in time for my activities with organizations & groups that I had a passion for.
After a car crashed into our home in 1997, the shock sent my body into a whirlwind. After work, I no longer could walk 45 minutes per day with my husband. Pain was immeasurable – it was wide-spread. I was diagnosed with Fibromyalgia. I kept working, but things had changed dramatically for me. My body just wouldn’t cooperate the way I wanted it. I kept pushing! My A-type personality wouldn’t let this lady give in! Should I have?
After my mother passed away in the same year, my husband whisked me off to Mexico with our good friends. I came back and a New Audrey appeared. It was frightening. My husband felt I picked up a virus there that never left me. I found I couldn’t put in my 40-60 hour work week. What was happening to me? I got so I couldn’t walk or raise my leg! Now that was scary. I started to feel seriously ill with all my blood results coming back normal. However, I knew my body and it was far from normal. I eventually had to stop working completely as I was now bed-ridden.
My Rheumatologist referred me to a hospital where I was diagnosed with Myalgic Encephalomyelitis (M.E.). I couldn’t believe it! Not this fun-loving, hard-working lady! Not M.E.! We had a friend who encountered this appalling disease and he was very ill. I admit it, I was very terrified.
This is where I want to explain my complete frustration with our Government. Why is it that the Government only permitted two visits with the only Doctor educated in M.E. that I had located? I’ve never forgotten this precious Doctor I met, as she deeply cared and had great compassion for her patients. WE must keep fighting as the Government only permitted me two (2) visits with her in a life-time. It is outrageous. What other diseases are there, that have such discrimination. This seemed at the time, my only help for this disease – I felt so alone. I have also since learned that they do not teach such conditions in Medical School. How alarming!
I was in for the ride of my life or shall I say the fight of my life. My symptoms worsened with no medical help. My family Physician tried to treat the symptoms. At this time in my journey, all the help I received from the outside world was the National ME/FM Action Network, The ME Association of Ontario and a few precious friends that God put in our path. However, this unexpected journey, also brought forth many loving and caring friends. God sent me an Angel who never gave up on me. She encouraged me when I had nothing left. She educated and visited me with tea in hand. She understood as she had M.E.
Then sadly, another fight in my life arrived. Maybe some of you will not be surprised as it was with my Insurance Company. I had to admit, I was extremely astonished as I had worked in Human Resources and expected they knew I was an extremely dedicated and honourable employee. I finally had to take retirement as my health was worsening with the stress that the Insurance Company placed upon me. As I look back on this, I would have hired a Lawyer; however, I was just too ill at the time to go through the process. I truly deserved the Long Term Disability Payments I had subsidized for so many years. And here I am – 6+ years later and extremely ill.
God will whisper in your ear and if He does – listen please! One of my best friends told me about her friend who had Fibromyalgia and was receiving Lidocaine Infusions. She said it changed her life. Then my good friend who is a nurse, suggested I see an Internist. Well, years and months passed and I didn’t listen to God’s Angels.
The emotional pain on some of our friends and family began to take its toll too. Their body language or remarks were devastating. Didn’t these people understand? I wasn’t even strong enough to sit up or able to take a sip of my ginger ale. I could hardly cope with my ill body, let alone some of my family and friends demeaning me.
The emotional pain of not being believed and being so terribly ill was almost worse than being bed-ridden. How could they not remember the old Audrey– the lady who never stopped? How could they not believe I was truly very ill? I sought help for the emotional impact this caused, as I couldn’t keep up to the various symptoms of the illness, or the emotional pain it brought. A social worker I knew was another life-saver – educating and assisting me in every way. She was also a sufferer, walking in those moccasins, made her assistance alive and real. She is also trained in Eye Movement Desensitization and Reprocessing (EMDR). EMDR is a procedure to help people process traumatic or distressing memories. This therapy is to process completely the experiences that are causing problems and include new ones that are needed for full health.
My husband took a copy of all the “M.E. symptoms” and distributed them at one of our Larger Family Gatherings. He tried to educate my loved ones on what I was experiencing. I was so proud of this man I loved so deeply. It took a lot of courage and surprisingly, it seemed that most of the men listened more carefully than the women did and were really ready to learn.
Through this journey, I was always mindful of what God was trying to teach me. I was always a compassionate and caring individual, but was he testing my faith? The power of prayer sustained me when my faith was as small as a mustard seed; or when I couldn’t take another day of feeling so ill; or when I missed the Old Audrey. Prayers from friends as far away as England, and as close as my Church family and from my Aunt and her Prayer Partner as well as from other very special friends and family.
Those friends and family members who stood beside us will always be cherished in our hearts. They helped us with this extremely unexpected journey in our lives. The casseroles, phone calls, cards and visits truly have helped us through this horrendous ordeal. I would love to name them all, however, having brain fog I might miss some Angel that helped me through and I just couldn’t do that. To all of you that know who you are – you truly were sent to me at that specific time. You knew I needed you just when I did. Thank you is not a powerful enough word to explain what is really in my heart.
God decided I needed a bang on my head! Remember the whispers of years ago? My son, who is a Respiratory Therapist and my daughter-in-law, a Midwife, arrived home. They and my daughter, a Nurse, sat my husband and I down. They said the way my health was declining, I wouldn’t be here in 5 years and they were very concerned the burden all this was having on my husband. My husband has been a saint on this very rough road and was doing most of the cooking, cleaning, washing, and drying my tears. You name it, he did it. God truly hand-picked this man for me. When he said “I do” so long ago, little did he know how our retirement dreams would be forever changed! This was the bang on my head that I needed – God’s bang!
I went to our family physician right away and got a referral to an internest someone had suggested to me earlier. This internest was one of the most compassionate and caring Doctors we have met through this journey. and believe me; we travelled many roads to get some help. This Doctor was amazing. He was telling me how when I stood up, I felt like I could fall onto the floor like a puddle. He was describing my symptoms to a T. I didn’t have to tell him – he knew! What a relief! He was just like the Doctor I had met at years beforehand. He changed my medication and started me on monthly Lidocaine Infusions that very day.
I wish I could tell you that I’m healed, but I can tell you that this lady’s suffering is a little less, and I now have HOPE! Losing Hope is devastating. Since I’m on cortisone for life for another health-issue, he was wise enough to prescribe a medication that is used along with cortisone. The brain symptoms are starting to diminish (but not gone). I literally couldn’t hold my head up at one time. At my last visit with him – I explained to him, that just a little measure of improvement is like reaching the mountain top for me.
It has been 5 weeks now since I saw this Doctor and had this miracle in my life, but I’m compelled to tell all M.E. /Fibro sufferers – don’t give up and keep the faith! God answered my husband and my prayers. If only I had listened earlier to the Angels He pointed my way. So keep listening to those whispers – they just might lead you to the right direction.
What I Learned:
• Get a proper diagnosis;
• Find a Doctor that is caring, compassionate and knowledgeable;
• Get yourself educated — research on-line at the NATIONAL ME/FM ACTION NETWORK at www.mefmaction.com. Information is so priceless in this journey;
• Educate your family and friends;
• Keep a journal – you’ll be surprised when you look back at how far you really have come;
• Stay away from people that are not supportive – it zaps energy you don’t have;
• Don’t be afraid to ask for help from your family, friends and your community health care centre;.
• Allow yourself to grieve for the loss of your health;
• Don’t ignore other health issues that you might be blaming on M.E. symptoms;
• Keep close to God or whomever is your Higher Power;
• Join a Support Group – you’ll be amazed at the treasured friendships you’ll make as well as the education you will receive;
• PACE yourself – this is vital for your well-being;
• Seek help from a Counsellor if you are getting emotionally burnt out;
• Never Give Up Hope; And
• Above all – Love yourself – have compassion for yourself – you are a precious person.