· 

How much ME/CFS limits me physically

Dr. Martina Melzer, published: 29.03.2022

 

Deutsche Version

 

This morning I went to the recycling center. Yes, that's right, the recycling yard. I can do that again. Finally taking away boxes and other junk that has been sitting in the garage forever. But I wasn't that fit this morning, weak on my feet, flat. Still, it was supposed to be today.

The recycling yard was total chaos, a thousand people, cars. I was overwhelmed. I really need to park right in front of the container so I don't have to walk far. The boxes and other stuff are heavy, for me anyway. I made it. Parking space snatched. After walking twice, my legs get heavy, like lead. I need my walking stick. Walking stick on the right, trash on the left. I limp, crawl, pant. Everyone looks at me. What's wrong with her? She looks quite normal. The man in charge of the recycling center sees me and helps me immediately. He takes my things. "Thank you, that's extremely kind of you. I can't walk that well."

Back in the car, on the way home, I start to cry. Even recycling is like a marathon for me. Legs shaking, muscles cramping, I'm exhausted. I am embarrassed. I'm ashamed in front of the others. That I don't function, that I don't belong, that I'm handicapped, that I'm a burden to others, that I need help. At home, the neighbor sees me: "Aren't you better yet?" Yes, I am, but I am far from well. Grmpf.

Yes, although I had a mild form of ME/CFS for years, then a moderate form, and now a very mild form, this disease still limits me insanely physically.

My struggle with the stairs

Today is not a good day. Brainfog since getting up, aching limbs, legs like lead, totally exhausted. Nevertheless, I have to go to the doctor. That means climbing stairs. No normal person can understand what it means to walk stairs with ME/CFS. My apartment is on the second floor. 15 steps separate me from the front door. I know all the stairs personally, have built a special relationship with each one. I've walked down them straight, sideways, backwards.

I've pushed myself over them with my butt, crawled up on all fours. I've already tripped over the steps, fallen, hurt myself. I hold on to the banister with one hand, to the wall with the other. Or I use my walking stick to help me. When I stand at the top, looking at the 15 steps, I'm afraid. Not to fall. When I am at the bottom: Relief. Breathe deeply. Trembling. If I have to climb it, I count: 1,2,3....15. Done. Yay. Breathe. Out of breath.

This disease is terribly limiting. Nobody understands that. Only those who are affected themselves. I filmed my struggle with the stairs on video, found on my one Instagram account: @mein_weg_cfs, "Struggling with the stairway".

 

Going shopping

I'm so proud to be able to go shopping on my own again. Make it to the grocery store. But again: (not only) physically a challenge. First there are those 15 steps again that separate me from the front door. Then I have a disability pass, but the degree of disability is not so high that I am entitled to a disabled parking space. So I have to look for a parking space. Either I choose the smaller supermarket where there is always a "good" parking space. Or I go to the one with a larger selection, but its parking lot is usually crowded. Often I then drive back and forth until I find a spot close to the shopping carts. Every step counts.

When I finally make it, I use the shopping cart as a walking aid. Very useful. Then I hope the groceries are where they always are so I don't have to make unnecessary laps around the store. The shopping list is written in such a way that I cross the supermarket once - without detours. Often the cheaper groceries are at the bottom. And sometimes even at the very back of the shelf. I hate that.

It means I have to bend over, squat down and use all the strength I have to get up again. This sometimes goes wrong, I need several attempts, destroy a chute with odds and ends, on which I want to hoist myself up. "When I reach the top, my eyes go black and I feel dizzy. Heart palpitations, sweating. Keyword: POTS. And then there are those looks from the other people again: What's wrong with her? Too stupid to stand up?

ME/CFS is a trauma. Physically, mentally, emotionally. Although I am so much better now, there is still a world of difference between me now and me healthy. Recovery is a process. Do the work. Anything that contributes to your healing. And trust the process.

 

PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their Fatigue or ME/CFS.