Living with CFS – a Personal Story
Living with Chronic Fatigue Syndrome is the most frustrating part of my life. It robs me of normal life and I miss out on doing many normal things. I continually question whether I am being lazy or really sick. Constant and consistent work on my physical and emotional well-being is how I live and love my best life.
The start of the fatigue
I got Glandular Fever when I was 14 years old and maintain that I never got over it. My youthful, teenage energy did not return within the expected 12 months. In fact, my energy levels have been unreliable and unpredictable ever since. That was 46 years ago. For 46 years my energy has fluctuated immensely and I have no idea what I am going to feel like from one day to the next. There have been periods in my life when my energy levels have been extremely low and other times when life has been bearable. Provided I manage my energy I have been able to live quite normally.
Chronic Fatigue Syndrome. From what I can see, no one really knows what it is!!!! There are a lot of theories out there and a lot of suggestions about what causes it, but I don’t think anyone really knows. It is a condition that lasts for a long long time and effects your energy levels severely. It seems that physical exertion increases the fatigue you would normally feel, but rest doesn’t restore feelings of normal energy.
Impacts of CFS
The degree of the fatigue can be extreme. The morning routine of getting out of bed, showering and dressing for most people is an automated process. For me, some mornings I get out of bed and get my clothes ready for the shower and I just know I don’t have the energy to wash and dry myself. I just sit for an hour or two trying to muster the energy to get up and going for the day.
If it is a struggle to get out of bed in the morning, I know I’m am having an unwell day. Experience has taught me that there is no point in pushing. Pushing and forcing myself actually makes my achievements less likely to happen. I look after myself and definitely go at my own pace. That is the only way to get through this and not fall off the perch. In the past, on really bad days, I couldn’t even lift my arms to blow my nose. On these days, I wouldn’t leave my bed other than to struggle to the toilet. There have been times when I even needed help just getting there. I never want to get this bad ever again.
My energy levels in my middle teen years were affected. School participation was compromised. When I had my first child in my early 20’s it kicked in again. Holding down a full-time job was not possible. At 30 when I was giving birth to my 3rd child it hit me again. I was so bad that I was hospitalised for about 6 weeks until I was well enough to go home with the baby.
The fatigue during the rest of my 30’s was extreme, so much so that my husband needed to give up work to look after me. By my late 30’s I was slowly getting better and I made a decision that it wasn’t going to affect my life, I was going to get better and I was going to live normally again. That is what happened.
My 40’s were busy. I started a business, set goals and achieved them. I managed my energy levels and worked at my own pace. The memory of the struggle in my 30’s was always in the back of my mind. I knew I could get sick again, but I didn’t want that extreme fatigue again. I was sick and tired of being sick.
The 50’s started off with good energy. Similar to my 40’s, although there was a lot of emotional turmoil, I managed my energy well. Traveling a lot, I found using a day or two off each week to recuperate would keep me going the next week.
CFS and Alone-ness
By my mid 50’s, it was my emotional health that was becoming more difficult to manage. Being on my own now, there was a nagging voice in my head constantly reminding me that I am now responsible for myself. There was a new reality. No matter what my health does, there is no one there to rescue me this time. I started falling off the perch again and as time is going by it is getting worse, I really have to take care of my energy, just to survive at the moment. I have panicked so many times, and stressed about how I am going to manage if I can’t work. That thought never leaves my mind, it is not good, especially when I believe that thoughts create your reality.
CFS affects Dreams and Aspirations
Being an extremely high achiever, with a desire to be successful at everything I do, it has been hard and very frustrating as I have shut down my dreams. I have learned to direct my activities to things I am capable of achieving. When I am having a really bad fatigue bout, achieving anything can be a major challenge. My mental health can be a problem too. It becomes the perfect storm. As the fatigue worsens, the brain turns off too. I become numb and the desire to achieve isn’t even a consideration. The minute, the hour, the day, becomes all about survival.
Taking control of your energy is up to you, no one can tell you what you need to do. There are suggestions for managing chronic fatigue syndrome but ultimately it has to be up to each of us. Each of us has to be responsible and take charge of what we do and our actions. Until research and science catches up, each of us has to develop our own survival kit.
These are some of the strategies I have learned to survive in life.
- I’ve learned to save my energy for doing the things I really wanted to do,
- I’ve learned to work at my pace, in my timeline.
- I’ve been my own boss, so no one could dictate what and when I was to do things.
- I listen to my body and I know when it is saying I need to rest
- Be open to trying new things, experiment with different diets, alternative medicines and daily habits, you never know what your body will respond positively to
- Stay positive and work on your mental health by writing journals and meditating.
- Believe that you will get better.
- Work on your limiting l removing the blocks that you have
Never give up on CFS
Chronic Fatigue Syndrome, in the absence of simple solutions, requires a change to my thought patterns. This can be a conundrum if you have never worked on your mental and emotional well-being and thoughts. It is something I have worked on consistently for most of my life. The belief that the CFS is over and I will be able to function normally forever may seem like a stretch but I continue to put my mind and determination into believing this. If changing my thought patterns is what it takes, then that is what I will do.