February 25, 2019

Chronic Fatigue in a Loved One - A Letter to the Friends and Family of a Victim of Chronic Fatigue

Who am I and Why am I Talking about Chronic Fatigue?

 11 years ago, my life turned upside down

 At the age of 15, my life came to a halt. I came down with Chronic Fatigue Syndrome, but it was not properly diagnosed for several years

 My mom took me to many doctors - DO’s, cardio-specialists, MD’s, pediatricians, therapists, chiropractors, acupuncturists, neural-specialists, and many others, but no one had a diagnosis or a treatment. They all had ideas for how to help, but they were guesses. They all had success stories for their patients, but they had never encountered someone like me.

 On any given day, I struggled with nerve pain, shakiness, dizziness, nausea, double-vision and weakness, and I had to take life slow. Those were my good days. If I did too much in a day or pushed myself too far, I found myself propped up in bed with an agonizing migraine, chronic weakness where it hurt to move, or fiery pain throughout one side of my body - but the sides would switch on a dime. One moment, my left side hurt like I had been paralyzed and could feel it, and the next instant, it was my right side, and the left only had weakness and the echo of pain.

  - But aside from the pain, one of the worst symptoms was the complete uncertainty that came over planning my life. The symptoms were erratic, and on any given day, I might be completely healthy, even running around playing sports or going to dances. But the very next day, for no apparent reason, I would be stretched out in bed, disoriented, and unable to interact with other people. Planning for social engagements or leaving the house became very difficult, on myself of course, but even more so on my friends and family who wanted to see me, and then had to cancel their plans because I was not up to meeting them. Complete isolation would have been the easiest answer, but the loneliness was not worth it. When I could, I pushed myself to go places and do things even when I didn’t know if I’d be able to stay long or have much energy to interact, because the emotional and mental relief of being around other people and having a good time would comfort me in the times when I was alone.

  - My Mother, bless her untiring heart, never ceased researching my condition, and she was the one who finally, unofficially, stumbled on a diagnosis and a treatment. She brought her findings to my primary physician, who was only too happy that someone had found an answer at last, and agreed with my mom.

  - The treatment was called the GAPS diet, and it was one of the horrors of my childhood. At that time I was trapped in bed almost 24/7, and all I had to look forward to in life was mealtime. Now that joy was deprived me. My mother started bringing me fresh-juiced carrot juice, bland broth, and boiled meats and vegetables, and I wasn’t allowed to eat anything else. aside from greatly disliking the food, my health went from bad to worse. Through the gaps diet, my mom discovered that I was even more sick than she realized. We found out that any detox we tried to put my body through caused my body to reject the treatment because the detox was so intense that it couldn’t handle the release of toxins well enough to be able to flush them out of my system. We had to go down to mixing a quarter teaspoon of carrot juice in a glass of apple juice to trick my body into accepting it and releasing a tiny amount of toxins at a time.

  - The gaps diet is meant to give your body the simplest food to digest, essentially giving it a break from all the food that it can’t handle, so that you can slowly bring foods back in and allow the body a chance to tell you what it likes and what it does not. It took four years before my body allowed me to eat potatoes again.

  - The gaps diet was eventually my salvation. It restored me to a state to be able to live my life once again. Once again I was going to family parties, hanging out with my siblings, and doing my schoolwork. I was even able to carry-on a part-time job nannying. I was 18 and I applied to colleges, committed to the idea that I was completely cured, and so long as I was able to follow my diet, I would be fine. At 19, I moved from Illinois to the East Coast for college.

  - Then my mom had a stillbirth. She had had miscarriages before, but a stillbirth was far more trumatic. And trauma is devastating to those with chronic fatigue.

  - I was able to push on for a year and a half, but every summer that I came home I was sicker than the one before, and I was getting worse. At last, after a miserable summer at home between sophomore and junior years, I made the brave decision not to go back to school. I remember sitting with my parents at the restaurant the three of us went for dinner, and crying as I told them I had decided to stay home. It was devastating for all of us. We knew if I could not handle school, I could not handle a full-time job. We did consider that maybe I should work part-time, but even that became evident that I could not do so. Once again, I was confined to my bedroom, and this time it was far worse because I was reliving a nightmare.

  - But my dedication to return to school was strong, and after that time of respite, I returned to school, this time with a wheelchair. I was able to attend classes so long as someone could push me from the dorm room to the classrooms. I put less pressure on myself now to interact in social engagements, or even to show up for classes. My health actually improved over that year, and I thought I had found a way to actively live with my condition.

  - But once I graduated and went home, I once again found life extremely difficult. I was not as bad as before, and I was able to work a part-time job from home, but part time was all I could do – and I felt like I had no future.

  - The worst part about coming home was to find my mother even more ill than I was. During my senior year, she too had to admit that she had chronic fatigue. She had always had problems with fibromyalgia, which I had as well, but now she was getting migraines and finding it difficult to function for any extended period of time. By the time I returned, she was confined to her bedroom. The more we researched the condition of chronic fatigue, the more we realized that this was common. Chronic fatigue is often passed from parent to child, and is most common in the females of the family. It can lie dormant in the body for many years until extreme trauma brings it out. After the death of the baby, the birth and care of another baby after that, and living in a house that was full of mold, her body finally succumbed to the condition that had been mostly latent in her system up to that point.

  - My mother and I found being around each other to be toxic. We both wanted to take care of the other one, and were incapable of doing so. We were not even capable of taking care of ourselves. She was stuck in her bedroom upstairs, and I was stuck in mine, and my 12-year-old sister was trying to run everything while taking care of two invalids. It was a bad situation.

  - After less than one year at home, my 19 year old brother and I decided to move out and get an apartment together. It was hard on him, but easier on me. I had someone who understood how to cook my food and could make it for me when I wasn’t able to, but most of the time I was able to provide for myself since I was home alone the whole day, and that was a good situation for my emotional and mental state. I was even able to go swing dancing once a week!

  - But after a year, my brother realized that I was never going to get well enough to live on my own, but he needed to be in order to pursue his career. I understood that, and I returned home and he moved three hours away to Springfield.

  - In the meantime, my mom had grown so sick, and had had so much time on her hands to research possible remedies, that she had finally discovered a local doctor who dealt with chronic issues like ours. For the first time, we had found a Doctor who had dealt with people like us before. We were in shock - we had never found anyone I knew what to do with us.

  - Since meeting him, we have improved. It’s been two years now, and we are making very slow but steady progress. My sister, the one who was running the house, is now 15 and is beginning to experience the same symptoms that I had at her age. But they are not quite as bad. And we are hopeful that they never will be. We have done so many things over the course of all these years that I could spend hours talking about, but I want to get to the meat of this video. Hopefully my story has helped you to understand that if you have chronic fatigue or if you have a loved one who struggles with it, it’s not something that is easy to solve. It’s not something that’s just going to go away. It’s something we have to learn to live with, to accept, and yet we must never give up. Because there are always answers – whether it’s an answer for relieving the issues or solving them completely, they are out there.

  - I have been at different stages of acceptance in my life. Sometimes I don’t want to hear that there are answers - because I am too tired to think about pursuing them. And sometimes I don’t want to hear that there is no answer - because I am so desperate to live a normal life. But we must find somewhere in between. We must find a way to accept the condition and learn how to live with it, and we must always believe that life can be better than it is.

How to treat it?

  - gentle treatments

  - diet change

  - homeopathy

  - vitamins and minerals

  - gentle detox therapies such as enemas and Epsom Salt baths

  - rest

  - brief, relaxing vacations

  - decreased work load

  - amended approach to life

  - why fighting and living a normal life is not the answer

  - acupuncture

  - chiropractic

  - gentle massage

  - brief sauna or salt cave visit

  - aromatherapy

  - decreasing toxic exposure in the house, using organic materials, and low-toxicity materials, soaps, shampoos, and paints

How will Chronic Fatigue affect my loved one?

  - Moody

  - confused

  - anxiety

  - panic attacks

  - extreme emotional, social, and physical sensitivity

  - forgetful

  - brain fog

  - weak

  - short fuse

  - cannot stand for long periods of time (standing is different than walking)

  - outings will be paid for one or two days later

  - low tolerance of other people

  - low pain tolerance

  - compromised immune system

  - poor sleep

  - food allergies and digestive issues

  - erratic ability to commit to social engagements

  - Time spent alone in their bedroom

  - erratic, unpredictable health

Why is no one talking about this?

  - Those in the medical community are not talking about it because they can’t make anything of it

  - last two years has seen a small rise in the discussion of chronic fatigue, on account of the numerous patients that seem untreatable

  - chronic fatigue defies specialized treatment. It is a whole body problem, that the medical community finds confusing since they tend to specialize in one area or another

  - no victims are publicly talking about it because they have no energy to do so

  - family members and friends aren’t talking about it because they are usually not aware of what’s really going on. All they know is that their loved one is suddenly sick all the time, anti-social, and isolated. Many of them assume it’s depression, the flu, lyme disease... but they don’t know, and are hoping that the doctors find a cure. They don’t understand that the doctors are often just as lost, because your loved one is probably the first victim of chronic fatigue they have ever seen and the symptoms are so widespread that the illness is difficult to identify and classify. and your loved one might be incapable of explaining to you their visits to the doctors, their own symptoms, or the confusion that surrounds chronic fatigue, because they find the topic confusing. They are already suffering from memory loss and brain fog, which worsens when they are in a social activity such as going to the doctor. When they come home, they have likely forgotten half their visit. Also, they are already exhausted, and to talk about something that is so stressful and confusing exhausts them more so that they may avoid talking it completely. If you want someone to step up and talk about this, you have to be the one to do it. YOU are the one with energy, the one who can fight the fight of getting victims the help they need and communicating the problems to the medical community. Chronic Fatigue victims are isolated and alone, but if you care enough about them to watch this video, then they don’t have to be.

What can I do?

  - accept the situation as it is (most important)

  - provide or raise financial aid for doctors and healthy food for the individual

  - give physical aid for meals, cleanliness, and shopping

  - provide childcare

  - give emotional aid

  - pray

  - offer to drive them to necessary appointments such as the doctor, parent/teacher meetings, church or their child’s school play

  - you can’t just say “let me know if you need help.” Because they are always in need of help, and they don’t want to be a burden on you. No matter what, they already feel like they are.

  - offer to help without putting pressure on them to except your help. This is tricky, because asking for help can exhaust the victim of chronic fatigue, but feeling like they need to accept your help can also exhaust them. It is not your responsibility to keep them from having an emotional breakdown, but there are ways to ask that will help them to be happy. Be honest with them that you want to find those ways, and then work together to figure out what they are.

What if I feel like I don’t have the resources to help them?

  - Very few people are equipped to help those with chronic fatigue. Chronic fatigue has various amounts of intensity, and your loved one can be anywhere from living an almost normal life to being completely incapacitated.

There are some facilities that are equipped to take them in and help them, but these are very expensive and not covered by insurance. If you feel like you can financially find a way to send your loved one there, there’s a good chance that it would be helpful. But ultimately, it is on you to help them, because they cannot help themselves.

  - nurse

  - helper or companion

  - cook

  - cleaner (using only natural cleaning ingredients)

  - chauffeur

You are the best solution

  - But remember that ultimately, you are the best equipped to help your loved one, because you are the one they trust. They are most comfortable around you. If you are reading this article, you care about them and their well-being. And that’s what we need most of all. We need someone who we feel like will listen to us and really hear us, who will stand by us no matter how crazy our symptoms get, and who genuinely wants to spend time with us, even when we don’t feel like we are entertaining enough to be around. I cannot thank enough those people who have been there for me through all this. My father, my siblings, my friends from school, and my friends from home, who all stood by me even when I disappeared for months on end, but were willing to embrace me again when I re-entered the world: those people are invaluable, and you have the opportunity to be that person for the one you love. It won’t be easy, but, speaking from experience, it can be a beautiful journey!