My ME has fluctuated always between mild and pretty damn severe. On my best days I have slowly walked an entire day with lots of sitting in between (and still had to recover with doing absolutely nothing for a week), on my worst years I have spend ages just laying on my back, not bothering to even dress myself, only bathing once a week because more often was too tiring.<\/p>\n
Here’s my story:
\nIt was June ’06 and I was with my friends at the sea for a week. We were celebrating just finishing our high school exams, and were fully expecting we would all graduate (we did).<\/p>\n
We had an awesome time, but I had a throat ache that was so awful that I actually completely stopped using those painkiller lozenges after I used one too many and my tongue started to feel lame of having so damn many of them. No hoarseness, just severe inflammation.<\/p>\n
We didn’t let my throat ache stop the fun we had, but two weeks later I was definitely at my GP’s office with the message: “Hey, I can definitely pinpoint to the very day when my throat ache started because I was on a holiday, and it is two weeks later, and I have no indication at all it is improving.”<\/p>\n
After about a wait and see of two months with no improvement whatsoever my GP referred my to the Otorhinolaryngologist who basically told me I had a chronic tonsil inflammation. We planned in a surgery to remove them on the Friday before my Christmas holiday would start so I wouldn’t have to miss any school.<\/p>\n
I had of course, started my new school, which I loved. But it was so damn tiring. I ate and ate and ate and I still had no energy to do things, I was falling asleep on my chair in class, waking up when I was about to fall down.<\/p>\n
The bus ride home (about 30 minutes) was long enough that my classmate who took the same bus was my saving grace and woke me each time when we got to our stop.<\/p>\n
I think somewhere around this time I had the first biggest blunder on my part time job (waitress) as well, where I had severe brainfog and for the world couldn’t remember that our kitchen closed at 21.00 in stead of 22.00. And told a guest to come. God my boss was so angry, and I didn’t understand why I fucked up that bad. I honestly couldn’t understand what went wrong in my head.<\/p>\n
I finally had my operation to remove my tonsils. It sucked, I recovered badly. I needed the full two weeks of my Christmas holiday to recover and even missed Christmas dinner. I went on a skiing trip with school, but after dinner I just went to my room to sleep already, and I NEEDED it.<\/p>\n
I think after my operation which I was still recovering slowly from, my mom started to bring me and my bike to the bus stop by car so I only had to cycle back.<\/p>\n
I think it must have been February when one day, after my bus ride home, I started my bike ride home of 45 minutes (which I had been doing easily every damn day for the last four years to get to high school, in the same village as my bus stop) and after about 10 minutes of biking with herculean effort, I just couldn’t anymore.<\/p>\n
For some reason, I did not have the energy to push the pedals of my bike, and had to call my mum to come and get me because I couldn’t bike anymore.<\/p>\n
That was the point my mum said: “I don’t care how much you like school or your job or whatever, I am calling your school to tell them you are sick, and you will stay at home until you improve.”<\/p>\n
I was still having bi-weekly psychologist visits because I was successfully recovering from a depression, and when I told my psychologist what was happening and asked whether I was having a burn out, she told me it didn’t look like burn out, but rather like CFS (as she had seen in an other client way before) and that I was to go to my GP, “and hammer with your fist on their desk until you get every damn test in the book, and have excluded everything else, because I can tell you it is not psychological, and you need a diagnosis”.<\/p>\n
To this day I am still grateful for my psychologist back then because she made my way to a diagnosis so much shorter compared with what I read to other patients.<\/p>\n
My GP was a treasure as well because she knew my face from way before, and was the type that would tell me: “Gosh, you look indeed quite a bit pale for how you usual look, let me order you all the tests so I can get all the things I can test you for out of the way, and send you to a neurologist for some extra tests.”<\/p>\n
Waiting lists at the hospital included, I think I was diagnosed within 4 or 5 months. I dropped out of school, and got on the way longer waiting list for treatment which was the PACE trial at that point.<\/p>\n
When I got to our governments doctor to cross-examine disability diagnosis and to approve whether you are allowed disability benefits he insisted I got my treatment at my psychologists office with a cognitive behavioural therapist instead, so I did.<\/p>\n
We’re about 1,5 year into my journey at this point, and I lucked out again because my cognitive behavioural therapist didn’t care all that much for the PACE treatment, and was all about not overspending myself on my limits. He focussed more about getting comfortable with what I can do, and more importantly, acceptance of the reality of being chronically ill, and not having the autonomy I used to have. In his office I learned to say stuff like “doing this isn’t reasonable for me” rather than “I can’t do this”. Under him I learned that being ill wasn’t about personal failure, and 16 years into my disease I still believe that is one of the most important things for my mental wellbeing I could have possibly been thought.<\/p>\n
That was a very important thing, because I was in a bad place back then. What fucked me up the most was that I was an avid reader and couldn’t string a sentence together anymore. I also acutely remember having hour long crying episodes because I dropped my soup spoon because of random muscle failure. It was hell, and in my mind, my body betrayed me.<\/p>\n
Not to mention, the near constant head aches and back pains. Later in life I have been diagnosed with endometriosis, and I have it in such a severe degree I missed school days for it, and even now am A-Ok with putting a gaming laptop on my belly to the point of burn wounds for a bit of relief. My headaches and back aches which I get from ME hurt more. Luckily I found out that cutting all sugar from my diet makes a world of difference when it comes to pain management. I just hate I found it out only 10 years into learning to live with my disease.<\/p>\n
I am 32 now, and have been sick for half my life, and considering you don’t actually remember all that much of your childhood I have been longer sick then healthy in my conscious memory. Being healthy is so long ago I can’t even properly imagine anymore what a day for a healthy person looks like.<\/p>\n
My ME has always fluctuated somewhere between mild and pretty severe, and right now I am at a point where I and a severe heart patient friend of mine are both calling each other when we go for a walk three times a week. Some periods, that three walks is all I can do in a week (and I have to lay on the couch for the rest of the day to recover, but have at least had some fresh air), and some periods, it sort of goes all right and I can manage to do a lot more.<\/p>\n
A few months ago my mom and I both got covid around the same time. We live miles apart and hadn’t seen each other, but my mom was between her 5th and her 6th chemo with a weakened immune system, and for me it was a regular Tuesday. Imagine the cancer patient being the one bouncing right back from having covid, while I needed three months to recover?<\/p>\n
Ever since I got ME, compared with a healthy person I take about 2 or 3 times as long in the amount of time to recover from whatever I get, be it a cold, the flu, or whatever else. It just takes a lot more time.<\/p>\n
Moving in with my now spouse in another city was a bit of a bummer with switching GP’s though. “ME? I don’t know what that is? Oh, you can’t work, go to school, or do anything at all really? If you say so…” Forward 6 years later: “God, still no improvement, still sick, still can’t do anything? Gosh, that must be terrible!” Yeah, no shit, Sherlock.<\/p>\n
Whenever I have to explain my disease to complete strangers these days, I mostly focus on the lessened function of my red blood cells and their ability to carry oxygen, and explain to them my whole body is constantly choking, even if I don’t have a lack of air. No energy, brain fog, muscles that acidify way too quickly, the whole shebang. Everything in my body needs oxygen, so nothing works the way it should. Often I add as well “Imagine waking up with a hang over every day without having had a single drink the night before?” I find that people get the picture pretty quickly when I describe it like that.<\/p>\n
The only hobbies I really have are hobbies I can throw away and pick up months after should my energy managing demand it, and while in theory I can go out and do stuff If I wish so, I must make sure I plan that I don’t have to do anything else the following week, and make sure that the people that do insist on seeing me are ok with me being a sort of ornament, rather than an animate person that you can have a fun time with. That said, people kind of nod like I am some sort of wise sage when I tell them that when you are really ill, you are too ill to be bored.<\/p>\n
When people invite me somewhere these days, they know to put a chair out for me and know to expect I won’t move out of it when I attend their party.<\/p>\n
My spouse, with whom I got together about a year before I got ill has stuck with me through it all, not matter how heavily bedbound I got.<\/p>\n
He is amazing with all that he does for me. I don’t think I could live alone fulltime, because when he goes on a holiday I definitely have to choose between doing my groceries and cooking because two on the same day is beyond my capabilities.<\/p>\n
He loves his holidays, and while he has to plan his hiking holidays with other people, he still takes me around to see places. Mostly by car trips.<\/p>\n
He manages to plan trips where I can do minimal walking. He even studies the maps of the places we go to with the utmost care so he can ensure I have to walk the least amount of steps.<\/p>\n
We take plenty of breaks, so I don’t tire myself out. We have also found out that we must act like I am not about to walk for an hour which a regular person could, but rather, act as if I am a tour du France cyclist doing a fucking marathon: Stretching beforehand, eating lots of proteins, stretching during, stretching after, eating more proteins, drinking lots of water and wiggling my toes for a good hour after a walk in order to stimulate the blood flow in the hopes of combating those acidified muscles, and massaging them when necessary. He also recognises I am about to crash way before I do, and knows when to make sure I get to a spot where I can crash.<\/p>\n
I am forever grateful for the care he has for me, and how he allows me to live my life to the fullest.<\/p>\n","protected":false},"excerpt":{"rendered":"
My ME has fluctuated always between mild and pretty damn severe. On my best days I have slowly walked an entire day with lots of sitting in between (and still had to recover with doing absolutely nothing for a week), on my worst years I have spend ages just laying on my back, not bothering […]<\/p>\n","protected":false},"author":6,"featured_media":880,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1,25],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/05\/johannes-plenio-RwHv7LgeC7s-unsplash-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/989"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=989"}],"version-history":[{"count":1,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/989\/revisions"}],"predecessor-version":[{"id":990,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/989\/revisions\/990"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/880"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=989"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=989"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=989"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}