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The Weight of Living With Chronic Fatigue Syndrome

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So many people with chronic fatigue syndrome (CFS) not only lose their lives as they know them, they also lose their bodies. Their bodies are fighting them at every turn and are changing, becoming alien. I know this, because it happened to me.

Before diagnosis, I was struggling to make it through a day: pushing myself beyond my limits, eating high sugar, high fat foods and drowning in caffeine just to survive in my day-to-day world. I would beat myself up thinking I was lazy and unfit, convinced if I could only work out more, lose some weight everything would get better. I could no longer make it through a workout. Just walking to the gym left me exhausted. I piled on a lot of weight in a year. I didn’t recognize the reflection in the mirror. I didn’t like the person staring back at me; they disgusted me.

After about 18 months of progressive decline, I got a diagnosis. It was both a relief and devastating. I am someone who needs to be in control. I have always worked, and worked hard. All of a sudden, I had little to no control and life as I knew it was gone, with no support, help or treatment available to me.

After digesting this information, I won’t lie, I was depressed, frustrated, upset, utterly miserable and angry with myself and the CFS. But I needed to move forward.

I finally gave myself permission to stop. Stop trying to regain my fitness, stop trying to push myself, stop punishing myself for having eaten so much in an attempt to get through the day. If I needed the extra energy just to make it to the couch, that was OK, some days making it to the couch was a fantastic achievement. I just stopped altogether and rested for five months.

I ate. I ate chocolate and cakes and sweets and processed meals. It gave me an energy boost, however minimal in comparison to the number of calories consumed. Let’s be honest, the food was mainly filling an emotional hole: being stuck home, alone, isolated, bored, permanently feeling ill, exhausted, in pain, unable to work or do anything I loved and previously took for granted. Not knowing if I would ever improve or get my life back, food was the only joy I got. I put on more weight.

Another six months and now heavier, I didn’t recognize myself. I know the extra weight took more energy to haul about with me, I know it wasn’t good for my heart and it wasn’t good for my sleep either (I’d started to snore). Very “helpful,” well-meaning friends pointed these things out to me too, offering advice. But without my treats, I wouldn’t have had anything I enjoyed left in my life.

I discovered elasticated clothes and made the difficult decision to ignore other’s “advice” and make peace with my jiggle.

It took another eight months before I felt well enough to find enjoyment elsewhere and take some control back. This came in the form of newly found hobbies including pebble painting. On days I felt I could be active, I took advantage. I overdid it and made myself worse. I finally learned to do half of what I thought I could do. I didn’t always get it right and I’ve had setbacks. A lot of setbacks. I try to learn from each one, but it is frustrating.

I finally made it to the point where I felt I could make an attempt to lose some of the weight. Before all this, I would have changed my diet and hit the gym. Now, I could only change my diet. I downloaded a calorie counting app, I used it to calculate a sensible calorie deficit and found low calorie, high nutrient recipes. It took me years to put this weight on, it was going to take a long time to come off; I have had to dig deep to find yet more patience. I’ve increased my calorie intake multiple times, especially when I have had a setback, but the app allowed me to ensure I consumed enough to maintain my weight, but not so much that I would regain weight. Four months later, I am finally back to a healthy BMI. I still have CFS. I still have crashes and periods of being bed-bound. The fight now will be to maintain the loss and I have no doubt I will slip. I’m keeping the elasticated clothes and I will still eat cake; life is too short and unpredictable to deprive myself completely.

You can lose weight with CFS; I am proof. Like CFS itself, it’s a difficult and frustrating journey. I am also proof that it has to be the right time for you, you have to be in the right place mentally and physically to be successful. If I had tried to do this when I was struggling and depressed, I would have made myself so much worse in every way. The saying “in a world where you can be anything, be kind,” was never more relevant because you need to be kind to yourself.

CFS, or indeed any long term condition, can strip so much joy from your life; it can be difficult to find new sources of happiness when you feel so broken. Don’t be hard on yourself if controlling your weight isn’t something you can do just now (or maybe ever), your body is beating you up enough already.

Your weight does not define you. The fact you are strong enough to continue to fight CFS every single day defines you. You are a survivor and if cake makes you happy, eat cake!

Getty image by Vect0r0vich

Originally published: June 17, 2021
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