My Chronic Fatigue Experiences

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My diagnosis

February 1991,saw me diagnosed with Glandular Fever for the 2nd time . My suspicion has always been it was the third. My wedding took place in January 1991. After another round of redundancies in November 1990 I took on a massive role. This was 11 months after relocating from Melbourne to Sydney. I had just turned 30. Quite a lot of change in a relatively short time. I imagined I would be away from work for about 6 weeks as I had been last time . A memory from the hairdressers in 1987 surfaced. Here a woman warned me to take care of myself after my 1st bout of Mono . Her warning was :” Don’t end up like my friend who hasn’t been able to do anything since her time with glandular fever. Doctors discovered a strange post viral illness .

Background

For the first few weeks I slept about 20 hours a day. My body ached and I felt out of myself. My bones ached, my muscles were heavy , my glands were swollen. After the normal 6 weeks I was no better . My GP referred me to a physician at St Vincent’s Hospital, Melbourne. He collected all my blood tests results . Right back to 1986 ,including from the last diagnosis of GF , mononucleosis . His opinion was Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome. I felt scared , as the world did not know much about it at that time. But also pleased I had an explanation for how awful i felt. This was not in my head . Often this illness results in confusion with depression . I was diagnosed with it 7 years earlier.

Some days were worse than others . I could not even crawl up the 12 stairs to my bedroom . I would sweat profusely , and the smell was like the organic smells from a farmyard. As the months progressed I lost the ability to walk and speak.

During July of that year, I went along to a CFS support group . The meeting was at a nearby hospital . The hospital setting felt that my condition was legitimate. The guest speaker was from , Commonwealth Rehabilitation Scheme, (CRS). Its charter to get sick people back to work. As I surveyed the other attendees I swore to myself ,I will not spend the next 30 years as an invalid. The CRS took me on as a client after much deliberation as their funding was dependent on success.

Treatments

I completed, psychological testing to determine if my work was suitable for me , it was a perfect match. My therapy included Alexander technique lessons to learn how to move my body . To use less energy. Hydrotherapy sessions enabled my muscles to exercise without having to support my body. I had sessions with the psychologist who was my case manager. Remember this was 1991 , this was radical treatment for those times. I returned to work in December 1991 , with supportive line managers , and in the care of my GP.

Over the next two years I would use all my sick leave and annual leave to cover my abscenses from work . Relapses occurred.

In 1993 I gave birth to a healthy baby boy . My body responded well to the pregnancy hormones . Around weeks 7 or 8 , I stopped talking and walking. I needed bed rest for about a week .This was my body saving the pregnancy. The other condition raised its ugly head but i ignored it.

Over the next 20 years I would manage my condition my way. I would have a successful career in retail management . I ventured into Change Management . I brought up my son who was on the Autistic Spectrum, I managed my life around my husband’s 7 day a week real estate career . I coped through the ebb and flow of life.

This meant I never stayed up past 11pm without having an afternoon nap if there was a special occasion. I ate a wholefoods diet . Took many vitamins . Turned down many invitations on the day after having accepted weeks before. In general i listened to my body. When referred to new physicians ,to try to improve my situation, they all said, you know more than us about this . I read books, articles about inflammatory illness. I always implemented any advice if I thought it would help.

Psychiatrists helped me manage the chronic pain . Also the fallout from living with a chronic condition. One in particular researched and attended any conference available. Her aim to gain knowledge around the neurology of CFS . Much of what she learned I implemented with lots of success. Stress continued to be a key danger zone. Although this tended to be difficult . Hard to avoid in a large city . I worked as a change agent and cared for a child on the Autistic Spectrum as a single parent.

I only used natural household cleaners to clean my home. I used organic haircare and skincare . I avoided food colouring , additives and preservatives. I rarely went to indoor places with large numbers of people because if I did I experienced an episode.

I had a few hiccups along the way . I started work in a very dysfunctional workplace with an unsympathetic owner. That resulted in another 2 months of total bedrest. Menopause and Perimenopause threw another spanner in the works.

I managed quite well until May 2015. I fell down 20 stairs . The injuries included a fractured, dislocated right shoulder, and a torn rotator cuff . The operations resulted in brachial plexus, damaged nerves.

I ended up with A SERIOUS CASE OF CFS. No wonder . A lot happened after the accident. The accident itself was stressful as my life was now full of therapy and doctors appointments. I sold my home to avoid repossession by the bank. , I lost my job . I relocated interstate . The anaesthetic from the operations aggravated my immune system. All fun.!

After the move I took on a short term contract of some accounting work . Another disaster . I caught influenza A . Now I had CFS and debilitating depression. I was once again immobilised and bed ridden for 6 months. I lost all sense of purpose. I was in a very dark place until I discovered Notion.