Chronic Fatigue Syndrome, Depression, Fibromyalgia, fibromyalgia warrior, Health

My Fibromyalgia and Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) Journey by Jess Williams

Fibromyalgia warrior, Jess Williams, has been suffering from Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (CFS/ME). Jess has agreed to share her story with us and I’m so grateful that she has done, as each story told raises Fibromyalgia awareness and helps fellow sufferers.

You can connect with Jess by following her on Instagram.

My Fibromyalgia & ME/CFS Journey by Jess Williams

My journey is a long one like many others. I started experiencing symptoms when I was 17 years old. It started with joint pain which was mostly in my wrists and hands

Before the symptoms started, I made the most of my life. I grew up with an alcoholic Father who was never around, and a Mother who suffered from Fibromyalgia and Agoraphobia. It had always been my plan to be as successful as possible with a career.

Once I left school, I worked three jobs whilst going to college full time. My family never had money whilst I was growing up and treats were rare. Once I started earning money, it just made me more ambitious.

I lived off hardly any sleep with working all hours. I also spent as much time as possible away from home. I’d go clubbing, go out for meals, just about anything to stay away from home. The more time I spent with my friends, the better.

After about a year of complaining to my doctor about my pain, I was referred to a Rheumatologist. The Rheumatologist was convinced that it was arthritis, but all the tests came back clear. A year afterwards, I went through the entire set of tests again as the pain was getting worse, and I was experiencing pain in more places than before. Still the tests came back clear, except for some inflammation.

By the time I turned 19, the condition had gotten much worse. I was then referred to a Psychologist who diagnosed me with Bipolar Disorder and I began treatment immediately. I couldn’t get out of bed for days or weeks. I was miserably depressed. Then all of a sudden, my mood was the best it had ever been! I didn’t need much sleep, I was happy, and felt like I could take on the world if I wanted to. Then I would go back to the depressive state. The cycle had begun and round and round it went. After a year of therapy and trying different medications, nothing changed in my mental state.

My physical symptoms started increasing, with more and more being added to the list. I thought I was losing my mind! Medically speaking, the doctors couldn’t find anything wrong with me. I started to think that maybe I was being a hypochondriac. Maybe this is what everyone feels like sometimes? I didn’t know the answers and neither did anyone else. But I persevered.

With all the issues I was experiencing, I still had my career goals set in my mind. Just before I turned 18, I was offered a job within my local government. This was huge for me! I had never felt so proud. No one in my family had ever worked in such a respected role and I felt like I had finally made it. This was the beginning of the rest of my life and it was all thanks to me.

A few years passed and my mental health issues were not getting better. My physical symptoms started increasing at a rapid speed. I spent months at a time off sick from work and was struggling with my day to day life. Despite this I received two promotions over a three year period and had moved into my own rented home.

I continued to work hard and tried my best, but things started to feel different. Suddenly my career wasn’t my number one priority. My priority was getting answers as to why I was feeling the way I was.

Two more years passed and still I had no answers from medical professionals. I continued to take the medication prescribed for my Bipolar Disorder and I also tried many, many different low grade medications for my pain management.

One day I had an appointment with my doctor, but he was off sick. His replacement for the day was a locum doctor who I had never met before. I explained to him what had been happening to me over the last few years and he asked me some questions. As I answered the questions, he wrote them down and asked me to elaborate. This was alien to me! I’d been passed around from specialist to specialist for so long that I’d almost given up. At the end of the appointment the locum doctor told me that he would be sending some paperwork off to a specialist, who may have some answers for me, but this could take a while. I half listened to him because by that point, the last thing I wanted was to see someone new, but it was also the thing I needed the most. 

Months passed and one day, on my way out the door, I saw a large letter that had been posted to me. I opened the letter and it was from a group of specialists who had reviewed my medical history and had diagnosed me with ME (Chronic Fatigue Syndrome). That’s how I found out … in a letter! At first I was thrilled. I thought that I finally had an answer, but the more research I did, the harder I took the news. A month later I was also diagnosed with Fibromyalgia.

After the recent diagnosis’, my Psychiatrist told me that it was very likely that I in fact didn’t have bipolar disorder. The cycle of ups and downs that I was experiencing was from the Fibromyalgia and ME/CFS. She then ended our sessions and I haven’t seen her since.

I still take the medication for Bipolar in order to keep me balanced, but on a much lower scale. I know that I don’t have Bipolar. I suspected all along that I didn’t have it. I still get really high highs and low lows. There are days that I can’t talk because I’m so depressed and other days that I feel like I’m the happiest person in the world. It’s because the flare ups are so bad, that when I feel slightly better, it feels euphoric.

It’s now two years later. I’m 25 years old and only just taking in the diagnosis’ and realizing that I have to put myself first, before any goals or ambitions. Over the last 8 years I have tried all different kinds of medications for the pain. Some take the edge off for a while and then my body gets used to them. Others don’t work at all. The medication that I am taking at the moment seems to be taking the edge off the pain slightly, but there is nothing available for the other symptoms. I’ve put on 8 stone since I was the young 17 year old, who never stopped to take a breath, and I’ve had to make some pretty big changes.

After a couple of years of really struggling and becoming very depressed, I did the one thing I promised myself that I would never do. I became unemployed. I quit my job in August 2019. My life for pretty much two years had been sleep, eat, and work. I slept through the weekends. I lost most of my friends. I stopped speaking to family. I didn’t do anything that brought me joy and my life became meaningless. 

I really didn’t want to quit my job, but being there was torture. My work was sloppy and my home life was non existent. Since a young child, all I had ever wanted was to be successful. 
It’s been 5 months now and looking back, I wish I’d quit my job sooner. I can remember the first time I smiled again. I’d forgotten what happiness was. I’d forgotten what it felt like to feel anything but despair. I will admit that I’m often bored, but my life has improved dramatically! Everyday I wake up and spend my time working on myself, checking in on my mental health, spending time with friends and family, taking breaks when I need to. It can be so liberating. In my life, I have never taken the time to look after myself and now that is my first priority.

I’m working hard everyday on bettering my life. Nothing is too small a goal. As long as it’s achievable, it will one day be done. I set myself small goals and work towards them each day. Of course I have weeks where my health stops me from living at all, but the second I get the chance I start fresh.

I am hoping to be able to work again one day soon, but I’m in no rush. I need to work on my health before anything else. I also need to figure out what kind of career would best suite my life now.

It’s hard to say why I think I have these health issues. Was it the consistent childhood trauma? Was it hereditary? Was it pushing myself too hard and taking on so much? Who knows? I spent a long time trying to pinpoint why this happened to me, but now I’ve accepted my diagnosis’ and the why doesn’t really matter anymore.

If I could leave advice for anyone, it would be to change your expectations, your goals, your ambitions. The only thing that matters in life is being happy and if you don’t make the effort everyday to try and bring some happiness into your life, no matter how small it may seem, then you’re not really living. Another bit of advice is to recognize your own achievements. If all you did, on a really bad day, was get out of bed and move to the sofa, then that’s something to be proud of. You don’t HAVE to do anything in life … so be proud of even those small things that you really didn’t want to do but did.

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