The real-life of chronic Fatigue Syndrome Patient

People ask me, "do you remember what it was like before you knew you had CFS" yes I do. I started getting symptoms about a year ago, getting tired over doing nothing, sick feeling with either a low-grade fever or no fever at all. Always having a sore throat, body aches. Most of the time I wrote it off as the flu and so did doctors without ever flu testing me. The thing was after my symptoms would go down, I was still feeling minor issues like the fatigue and so on, I started to blame it on my ADHD medication. When it wore off, I assumed it would just crash. Then I get asked "do you remember what it was like before you had CFS" yes, I remember that too. I think about that alot. How great it was to wake up, after sleeping all night and feeling good. Being able to do household chores without fighting with my body, being able to exercise every day, being able to drive more than 20 minutes at a time, Being able to work, being able to not have to cancel plans. Yeah I certainly remember, and sadly, now I know I have a 5% chance of that ever coming back, and even then it wouldn't be fully normal.

It all started in September 2019. One day, all that ill I was feeling came crashing down. I started to get thunderclap headaches, which In my life, I never had I didn't even know what they were. I would get them if I did some sort of physical activity. The first time, I let it go. But then it kinda didn't stop. It became more frequent and I started keeping track of the times between them, when I would get them and what would bring them on. I was questioning calling my doctor, but I felt no need to waste their time with this. Then I started to throw up blood and lay on the floor in terrible pain crying. I still let it go. Which I for sure, shouldn't have at that point. I would have a good day and think it was over the stomach bug or flu or whatever I had. I go to work, only to leave early because I started to have stroke symptoms. I got to the ER and the 10 Minutes I spent waiting in the emergency room, my health declined, alot! All of a sudden couldn't walk straight and my speech was slurred. When they got me in, I couldn't even talk at that point, found my blood pressure unusually high. Typically, my blood pressure has always been low or on the lower side, while high blood pressure ran in my family. 100/75 was normal for me, it was like 189/ something, I couldn't remember the other number. They rushed me into a catscan, I did start to get a little nervous. However, in the end, they wrote it off as high blood pressure and sent me home, no matter how many times I told them my blood pressure is never high, it's always low.

After a few days, I was still struggling. I finally just went to my doctor, after about 4 visits and the 1 ER visit plus one other one, they wrote it off as an autoimmune disease and gave me prednisone. Surprisingly, it worked! I had to go see a specialist that I never saw because I felt kinda ok. Flash forward to February. I got slammed with the flu. It was an as rough battle, and by the time I was done with it, I was still feeling symptoms for a while, then all of a sudden most of the past symptoms came back, almost like the flu refueled the "autoimmune disease" I went back to the doctor, I told him straight out, I had so many tubes of blood done, I need answers, please. This time all my blood work came back normal with a few abnormalities. I was angry. So still feeling horrible I went back again, this would be my 12th time or so going to see a doctor over the same thing. Throughout 6 months. This doctor, sat down went through everything, wouldn't let me leave without an assumption at least. I told him it feels like an autoimmune situation to me, but I wasn't sure, I told him I am so tired, my eyes are burning. I slept all night so I don't get it. I can't walk, I can't work, I cant go to school, everything is suffering, my whole life is falling apart. I was in tears. an hour or so later he said " I think I figured it out" a few physical tests, a few more questions and he told me I had Chronic Fatigue Syndrom. I got upset I was like "what is that? are you telling me it is in my head? I'm not just tired though" He began to explain, its not a made-up illness that you manifest, its a real condition, and it's not just being tired, its everything you are feeling. I will explain more about that later. So he told me not to take my ADHD medication for a week to see what would happen, I didn't take it for a day and realized if it wasn't for my ADHD medication, I couldn't do anything at all, that means, getting out of bed. I was officially diagnosed and put on disability right away.

This is just my story, my symptoms, everyone feels it different and everyone's severity levels are different. Mines at the worst. So what happens is you go to bed, you sleep all night, great, you wake up but you feel like you didn't sleep at all. Its because my body was tricking itself. and with that, I got a lack of REM sleep. The REM sleep refreshes everything since it wasn't doing that my entire body was breaking down as if I wasn't sleeping at all. Its alot like fibromyalgia and other autoimmune diseases. The difference is, autoimmune diseases attack one part of your body, like hair cells, or blood cells, so on, and so forth depending on the exact disease you have. With CFS, my whole body was being attacked, but it wasn't my immune system doing the attacking, it was something to do with the neurons in my body attacking. Which in result, weakened my immune system, so instead of my immune system attacking me, I was attacking my immune system. I do not have an autoimmune disease, I am immunocompromised. There is a slight difference. I hope this makes sense, I had to translate it from doctors' terms. March I was on disability, since March, it's now May 2020, I have declined so much. I went from ok, to nothing. My stimulant barely touches the surface, some days it's ok and does, some days it doesn't, but it does help with my ADHD parts. Like the attention and focus, but I have no energy.

Heres a day in the life of me. Not all days are terrible some are bad, some are terrible. There's never a good day. I wake up, I now am on Ambien to make sure I am getting some sort of REM sleep and it does help alot. I wake up with a struggle most days, others I wake up at 4 am and can't go back to sleep, that's CFS. one day you sleep until noon and others you are up all night, your body controls you now. I stumble to the coffee machine, I can't cut out caffeine I'm sorry, that's impossible for me right now, especially since caffeine doesn't make me active like most people because of my ADHD, but my mind thinks it does, so let's let it think it does! Then, since COVID has taken over, I need to make my kids breakfast, some days I can make eggs, bacon whatever, and somedays I tell them to make cereal. Some days I just can't do it. I can sit with them and get their school work done but that's it, they go out and play most of the day. I try and get things done, laundry, and chores, whatever errands I need to do. The problem is until I take that stimulant, nothing is getting done. That's a fact. Once it kicks in I do what I can, at first, I didn't understand limits and would push myself and then I would have a flu-like illness for 3 days and think I had COVID. Which ends up just being flare-ups of my stupidity. I joined a support group that helped me through it. I learned once I got a little tired, I needed to stop right then and there. Preferably if I felt a flare-up coming on at all, I should stop well before feeling tired. At first, that was working, it is not so much anymore. I would do something and then stop, sit down and do nothing for a half-hour, get up and do the rest, That was the minimal way of getting through the day. It's now my normal way of getting through the day. To me, all this is normal now, It was a huge adjustment at first because my life changed dramatically in a snap. I would get so depressed and sometimes I still get very angry at myself for being sick and being a burden. I can't do much on my own and I am now in a high-risk category for COVID. I still feel helpless. Once my stimulant wore off, I got tired. I sat down and just watched TV. I could turn to energy drinks, but they tend to bring on anxiety attacks since I have chronic anxiety too. My anxiety medication does help put my mind at ease and helps with the mental half that makes me tired as much as the physical half does. That's another thing people don't understand, it's not just giving up physical activities to barley survive the day, I need to better manage the stress and emotions on my part too because that will give me the same effect. So its a team of medical and mental doctors working together. Depending on how much I push myself that day, I am sometimes ok, and other times I am over it.

The truth is, there is no treatment for this or cure. Yeah sure, you can take supplements, they may or may not work, nothing is approved and everyone is different, so what may work for one person won't work for the next. Also, "plenty of exercises" does NOT and I repeat DOES NOT work. It does the total opposite, it breaks you down, and makes you so ill, you'll end up in the hospital. You can do light exercises like light yoga to an extent. Cardio and stuff like that is totally out of the question. At least for most of us. Some can, but I at a very severe level so I cant. I wish I could. Eating better, WILL NOT, for the most part, fix it. I have heard that taking certain things helps out, but again, only for some does it work for. I had to debunk these to so many people in my life who think I can just pop a pill or run a mile and I am cured...no. They claim they know people who had shots to fix them...no. That's a flat out lie, there's no such thing, my doctor flat out told me this, everyone in the support group also said this. I wish I could share conversations from the group here to show that we all deal with the same thing, but I can't do that. You are more than welcome to look it up on the mayo clinic for more info. The only thing they can suggest you do, antidepressants and anti-anxiety medication to help with mind ease, this does cause depression, however, depression does not cause CFS. Also, stimulants, many are prescribed them for this condition, because it can provide energy that we are lacking so terribly, I have ADHD so to me, its nothing crazy, but it's a huge help when it does work for that. All the medications I am on, I am still unable to hold a job. That's how far gone I am.

In conclusion, When someone tells you they have chronic fatigue syndrome, please ask about it before assuming they are just tired. Because it's not "just tired" its always feeling sick with no fever or being sick, it's your body controlling your entire life. I can't make plans, because I can't promise I can show up. That's my life now. I cried, I screamed, over it, but none of that can change it, and there's only a 5% chance of ever recovering from it. And even if you did, you still won't have a fully normal life. The prognosis is terrible. I use to be so independent, I use to be able to volunteer for multiple organizations like the red cross and the hospital, and work and go to school and raise my kids with 0 issues, I had to give all that up so I could raise my kids. I depend on everyone else around me and that's not me and I hate it. but its life now and I think when people start having a better understanding of this, they wouldn't be so cruel or judgmental to us. I lost family members over this, I lost friends over this. it causes marriage issues. It is terrible. I wouldn't wish this on my worst enemy. I wish I had an autoimmune disease, at least then, I could have a treatment.

https://solvecfs.org/what-is-mecfs/