Living with chronic fatigue syndrome: “I used to climb mountains, now I need a lift because of me”

I was a healthy 14 year old from Bristol who had just gone to his first gig with friends and was exploring his independence and newfound freedoms. I went hiking all day with big backpacks full of hiking gear, enjoying nature.

And then one day I got sick, it was the last day of school before Easter, and I had a math exam that I didn’t want to miss, so I went to school in the morning.

When I returned home, I immediately went to bed and did not get out of it for almost a month. The days were full of diarrhea and vomiting, fainting, 40-degree fever, sore throat, sweating, tremors and incredible exhaustion.

I remember feeling so bad that I thought I might die, but I barely had the strength to be scared. My mom called the doctor and we were advised to go out and eat salted fries and drink a lot. I lost two stones in three weeks. I couldn’t watch TV, listen to music, read a book, or talk.

And then, a month later, I started to feel a little better. I went down I went back to school for a few hours a week. But exhaustion and various symptoms haunted me.

The school wanted me to go to school more and more, although I explained how difficult it was. My parents (both teachers themselves) were torn between having to send me to school and seeing the consequences for themselves. I came home and literally lost consciousness. It was no longer possible to leave. I missed my friends, I missed my life. My doctors told me to gradually increase my activity, my school told me to increase attendance.

I wanted all of this. I did my best. And in a few weeks I managed to do more. But it wasn’t sustainable. One day I did more, and the next I was overwhelmed with extreme fatigue and a host of other symptoms.

Every day I experience extreme fatigue, muscle pain, dizziness, migraines, nausea, diarrhea, tinnitus, sensitivity to light and noise, poor temperature control and cold sweats, foggy head and restless legs, bladder problems and nerve pain, among other symptoms.

I got dressed to go to school, went down the stairs and was so exhausted that I lay on the floor and cried because I really wanted to go to school, but I felt so terribly sick. I fell asleep in offices or classrooms.

The more I forced myself to do it, the worse it got, until after six months of progress it went downhill again, skipping days before I could do anything at all. I was homebound again, returned with an increasing number of symptoms, missing out on my education, my friendships, and all the teenage rights of alienation. I was finally diagnosed with ME (myalgic encephalomyelitis) 18 months after my first virus.

The ME diagnosis had a huge impact on my school life. In terms of friendships, it was incredibly difficult for others to understand my illness and how it affected my life. I was also bullied online because I wasn’t good enough to go to school, which made me even more isolated.

In terms of the impact on my education, I had to skip all of 10th grade and in 11th I was homeschooled by hospital teachers for 10 minutes every day because that was all I was good enough at. They were great and really understood my needs. I managed to pass three GCSEs.

I was told that as a young man I would recover within two to five years. We desperately clung to him. Whenever things went downhill, I clung to the thought that I would soon be healthy again.

It was 14 years ago. Now I’m 28, and most of the time I’m housebound or bedridden. My family and I have spent all these years researching medical systems, trying to understand what is happening to my body and what we can do about it.

There was also a huge emotional adjustment to the illness, I had no idea how much heartache such a bad condition would bring. I used to climb mountains, but now I need a lift. There are so many losses every day due to severe symptoms, missed family events, opportunities, lack of college education, or being able to work and not spend time outdoors, just to name a few. My walk now goes to the toilet.

I turned to alternative medicine, acupuncture, soft tissue massage, homeopathy, and more to try and find relief from the symptoms. Unfortunately, there are few improvements. I also had to visit two private doctors to determine the cause of some of the severe symptoms that I was unfortunately unable to track down on the NHS.

I am so grateful to the NHS for their help in acute situations, but when the situation gets chronic, I find it becomes more difficult to get help. My GP has been a great support over the years and listened to my needs, both mine and my mother, who constantly looks after me and supports me when I am unable to. Sometimes it’s even helpful to hear, “Sorry, we don’t have the answers right now, but I’ll do my best to help you.”

I have had a lot of help from NHS staff over the years, but very little of it has connected with me. It was so difficult to get support or treatment for ME because there is simply no other treatment than stimulation. We really need more funding for biomedical research.

All sorts of things contributed to my health, which deteriorated over the years. Every time I catch a virus or infection, my symptoms get worse and I struggle to get back to the level I was before they started.

During the summer, I went to a family reunion in a wheelchair for a few hours, which required a lot of planning and precautions, and while it was an absolutely amazing experience, 10 weeks later I was completely bedridden and still a refuge. not back to the level at which I worked at the event. In most cases, a 10-minute conversation was too much.

Part of the struggle is that you never know how something will affect you, you can plan and try to conserve energy where possible, but symptom delay (worsening of symptoms after exercise) makes it difficult to know when to stop and go. house. Sometimes it hits you after 24-48 hours.

I was admitted to the hospital with terrible pain and symptoms that didn’t respond to test results. I have also been diagnosed with postural tachycardia syndrome and Ehlers-Danlos syndrome. Having ME makes all this difficult to treat, and since there is no cure or cure, I have to treat my ME.

But this is so hard to deal with. Every day I face exhaustion so strong that it is indescribable. On my worst days, most days now, I can’t brush my teeth, hold a conversation, or open the curtains.

I have migraines, widespread pain, dizziness, poor temperature control, gastrointestinal upset, nausea, sore throat, swollen glands, restless legs, and about 15 other symptoms that come and go every day. We had fixtures in the house, a stair lift, a wet room, and my wheelchairs. None of the things I thought I wouldn’t need at this age, but they help.

One of the times I was very depressed was when I contracted the angina virus in early 2019 and after a few days I got much worse and was hospitalized with early stage sepsis. It took a huge toll on my body, my ME dropped drastically, and a host of new symptoms developed that required re-evaluation in the hospital. It’s very hard to plan for the future when you just don’t know what your health might be like.

Action for ME helped me with part-funded physical therapy and counseling, helping me learn how to position myself properly in bed to ease my pain a little, give support pillow advice, reduce declining health, and adapt. They also helped to talk to someone who understands the loss and life changes that come with ME, which is helpful. It’s hard to see your peers building a life, going out, having a family, a job, a home when you’re too sick to build your own. I have found that acknowledging these things is helpful because it gives me the opportunity to celebrate the little joys of life, the bird on the windowsill, or the feeling of a soft blanket.

I manage my ME through careful planning, organization, regular rest, and the pace of my activities throughout the week. None of this makes me a better person, but it helps my body gain some stability, prevents further deterioration, and allows me to use my available energy in the most productive way with the least increase in symptoms.

Until I had so little energy, I didn’t realize that it was using energy. Breathing, digestion, sitting, eating and drinking or wearing clothes. Most of the time, basic survival functions consume all my energy.

I have been incredibly fortunate to have a truly supportive family that makes my quality of life as good as it gets under the circumstances. They not only take care of my care and treatment needs, they also increase my zest for life, they bring me leaves from the street, feed birds for me so I can see them from my window, tell me about walks so I can imagine.

My family helps me a lot with planning and adjustments. I have also had to come to terms with using vehicles over the years as they have given me access to many things that I would not have experienced well enough otherwise.

We make the best out of a situation, but rarely does anyone see the true reality we live in because we often only share the best things. Glimpses of life that we manage to see from time to time. No one sees the planning of preparatory rest days or the consequences of even a short session.

It’s hard to never know what the next week, month, or year will be like with this disease. Any mild cold can cause a fall. All this requires careful management. Now, instead of hoping for a full recovery, I just hope for better days, more comfort, smiles from loved ones, and days when my symptoms decrease.

It is disappointing that there is not enough funding for biomedical research into the causes or cures of a disease that has such dire consequences for so many people. Perhaps one day there will be a successful treatment. With hope.