8 Things That Happen When You’ve Had Chronic Fatigue Syndrome (MECFS) For Awhile

Chronic Fatigue Syndrome is life changing, there’s no doubt about that. Some of us had gradual onsets, and others, like myself had sudden onsets. I don’t know which onset is better or worse, all I know is that regardless of your onset, you’re left on this journey you never asked for and just like life itself, you evolve as you go. There seems to be stages people go through, health wise, but also in processing their new life. If I’m to be honest, the journey is often unsettling, and it definitely shapes you into a new person. Your humor grows a little darker, your perceptions of reality begin to twist and tilt. Things don’t look the same, they don’t feel the same, and in time you realize the thing you were so desperately trying to avoid, you know … becoming your illness, you’ve had to a little bit, to survive.

This blog was primarily created to reach out to anyone going through the chronic illness journey so they wouldn’t feel alone, and this post is just another post reaching out to you letting you know, even though you’ve been a on this path a while, you still aren’t alone.

  1. You no longer go to the ER, unless another doctor makes you or you literally can’t get something under control, like your heartrate or temperature. Why? There are many reasons why, but just to name a few: you know the exertion will make you worse for even longer, you know they’ll simply tell you your labs are fine (even when they aren’t…personal experience) and send you on your way, and let’s face it, ERs are full of sick people and you don’t need any more illnesses to fight off. Having said that I can’t tell you how many times I’ve made sure my PJs are ones I would wear to the ER as I’ve gone to bed literally unsure of how the night would turn out.
  2. You’ve cried at the doctor, and this crying as been marked as depression. The truth is the tears are a lovely combination of a myriad of things, including frustration, grief, and wishing the doctor in front of you could simply do their doctor thing and cure you. You might feel thankful when the doctor says something like, “Of course you are depressed, who wouldn’t be in this situation?” Because even though you know your tears falling aren’t because you are depressed, you’re still thankful they see there’s a situation and you aren’t malingering.
  3. You’ve, for the most part, made peace with the fact that all calendared plans are TBD until about an hour before the plans. You’ve rescheduled more plans, including doctor’s appointments, than you can count, and you no longer feel guilty about it, it just is what it is. Your true friends totally get it, and let’s face it, all of the others have fallen away, and your doctor’s offices get it too. I recently forced myself to go the dentist during a wretched flare and THEY sent ME home. Did I mention how important self-care is? Obviously, a steep learning curve on that one for me.
  4. You’ve pushed yourself well past where you should have energy wise, and you knew you were doing it at the time, but you did it anyway. Some days it’s frustration, some days it’s stubbornness, and sometimes it’s knowing this memory to be made will never come around again so you gather all you have, which is usually just adrenaline coursing through you, and you push, and you don’t stop because you know when you do you won’t rise again for hours, days, weeks, or maybe every months. But that memory you made, you get to keep that forever. Side note here: You can’t just keep pushing every day, if you could, we would times a thousand.
  5. You’ve been belittled by more doctors than you can count and going to the doctor now causes you anxiety because of your past mistreatment. This is one of the more heartbreaking parts. Before each doctor’s appointment you desperately hope that this person will be compassionate, will listen, will believe you, will hear your words, will actually want to know what you have to say, to add, to share. But often what you’ve come across are know-it-all doctors, who are judgmental and rude. Don’t get me wrong, I’ve had some awesome health care professionals along the way, but I’ve also experienced some real jerks. I try to remind myself that doctors are people too and statistically there is going to be an occasional rude person. If you are a health care professional and you have stumbled across this blog, please remember your oath ‘first do no harm’.
  6. You’ve kind of given up. You read that right. You’ve tried every supplement you thought could help, you’ve tried explaining every symptom to numerous doctors, you’ve tried to get healthier by ‘thinking positive’, you’ve tried yoga, you’ve tried meditation, you’ve tried sifting through past traumas because you were told that’s why you’re sick, you’ve tried kale, and you’re done now. I remember in the beginning of my illness I would come across these people, who were just done, and I would think, don’t they have hope left? And now, now I get it, but before anyone silently eye rolls me and clicks away please know, I still believe yes doing some of those things helps maintain your best self, and yes, yes, yes keep doing them!! I just haven’t found any one of them to be curative into a state of remission, or anywhere even close to that so I’ve given up on, for instance kale being the answer. For the record I hate kale, but I’ve eaten enough spinach, celery, and broccoli to cure a village of anemia. 😉
  7. Your greatest strength is ironically exerting no energy at all. So many of you with MECFS were ‘doers’. Before your illness you were very driven, very active, and very headstrong. You’ve had to learn to reprogram yourself to say no to helping people, to doing things, to working, to so, so many things. The word strength no longer has a physical meaning, your strength is now mental, and it’s meant learning to say no when all you really want to say is yes, that you’d love to help with the housework or go for a walk. Instead, in order to survive a lot of your strength has become about self-compassion, about simply allowing your body reprieve and to heal in quiet stillness.
  8. You know research is ongoing and you’re thankful, but you also know without proper funding and attention, this could be as good as it gets, but you always keep that sliver of hope alive. You’ve read the studies, you know all of the prominent researchers by name and also where the studies are being held. You’ve joined studies yourself in order to help find answers. You’ve watched and waited, and waited, and waited. You’ve been waiting so long you’ve seen studies repeat and find similar results, but then nothing happens. You’ve seen answers, you’ve seen results, but then again…nothing happens. You’ve decided instead of living your life in limbo you are simply going to go about the business of living your best life and keep a keen eye on the latest research, just in case. Because there’s this flicker of hope, like a candle in the night, and it reminds you, they will figure it out, they will, and when they do, watch out world because there’ll be millions of people who’ve been missing from their lives, ready to breath it in as if it were the sweetest, most beautiful scent they ever did smell.

Thank you for stopping by today folks. A few more of my February teddy bears. Almost ready to wrap them up. It’s been mostly fun painting bears everyday, but sometimes felt more like a chore, so I’ll be glad to get back to paint-whatever-you want March as I continue to follow along with World Watercolor Group on Instagram. 😊 Hoping today is especially kind to you.

 

35 thoughts on “8 Things That Happen When You’ve Had Chronic Fatigue Syndrome (MECFS) For Awhile

    1. Thank you for stopping in for a read. I try to tell myself that others (doctors) couldn’t possibly understand without experiencing this themselves, but still, there’s an expectation of minimal understanding. I find it interesting the doctors that do come down with the illness are like whoa hold up this is a terrible illness. Yeah that’s what we’ve been saying. And thank you, you too.

      Liked by 1 person

    1. Thank you, Lisa.🌸 CFS is hard to explain, unless you’ve been in the water, sinking, feeling like weights are pulling you down, you won’t get it. It’s that and so much more. BUT they’ll figure it out, hopefully soon! Like today, today would be great.😊 Hoping today is a wonderful day for you!🌻

      Liked by 1 person

      1. that was my first “symptom” I would wake up feeling exhausted no matter the amount of sleep and like my inside where made of cement, like every joint was fused together! I swore I was dying, I slipped into depression in the first year convinced the doctor was nuts, fibromyalgia my butt I AM DYING, and the rest is history as I was diagnosed with many more auto immune disorders, but I was not dying, just felt like it everyday for the rest of my life

        Liked by 1 person

      2. Today is a snowday and my wee little nieces are off school and here visiting, they are old enough thank goodness, i am greatful ehen theu all where babies i was still well enough to be the aunt i wanted to be

        Liked by 1 person

  1. Great post. Yep, to all of this! I hardly ever go to the ER anymore. It will end up costing me thousands of dollars and rarely makes a difference.

    I used to like going to doctor’s appointments because they gave me hope, and it was the one place I felt safe. After all, if your heart is going to stop functioning, it seems like it’s better if it happened at the doctor’s than at home. But now it just gives me anxiety. They’ll say something stupid or chastise me for not taking the medication they prescribed, or I’ll be labeled a drug seeker, even though I never ask for drugs and usually don’t want them. I still enjoy my cardiologist visits, but despise all other appointments.

    Liked by 2 people

    1. my family dr retired, he knew me so well he knew the moment I walked in with my symptoms ten years ago what to check for and he was right. he knew I did not want meds with high side effects and he knew I was eating things and popping supplements like crazy to find a cure for what was happening. now 3 years after his retirement I am left with a new crazy dr who told me my iron level was fine ( if he had looked he had seen it was below bare minimum) and I didn’t need blood work so often! I told him were to go and how to get there and asked to be referred to specialists. once they reviewed my blood work they sent him a “nice” letter spelling out how UNFINE I was. I have 2 specialists now and finally after being put on an over dose of iron pills with no luck, I had iron transfusions, that was Oct we will see in march if the levels have dropped and I am not sure how I will react if they have, it literally was my last hope for the one treatment I could do for my many illnesses and symptoms.

      Liked by 1 person

      1. Have done the molases n bone broth but had spinach coming out of my nose daily and 2 iron pills ( max is one at that high of dose) and still didny budge, i was convinced the infushions wouldnt take either but sooo glad they did. Few weeks and i will know if its gone back done. Here in Canada we have to pay for the iron serum itself but to have it infused it is done at the chemo centre and unless you get dangeroulsy below minimum they will not approve you for the cost of the nurse to infuse you. I know its gonna he a matter of getting sicker again then being approved. Such an emotional and physical rollercoaster

        Liked by 1 person

      2. I’m so sorry you’re having to deal with anemia too. I know first hand how frustrating it is when your body won’t just absorb the iron. Really hoping the infusion works for you! I have severe reactions to it so I have to take tiny, spread out doses.

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  2. Hi Mishka,
    Yes, my FM/CFS came on suddenly too. After consulting 3 physicians overt a 3 year period I was sent to a Rheumatologist who diagnosed it + two other Autoimmune conditions & then I found a GP who truly gets it for continuing medical care! 😀

    I love soft Tacos, they have new gluten free (I’m Celiac as well) soft taco kits here in Australia & they are my favorite new meal! Delicious!! Yum! 😀
    Blessings,
    Jennifer

    Liked by 1 person

    1. I’m sorry you’re on this journey too, Jennifer🌸 But I’m glad you’ve found a good GP! And I’m glad to share your company.

      Tacos are delicious! Neat you found some you can enjoy! I had zoodles (zucchini noodles) for the first time tonight and they were delicious!

      Hoping today is kind to you 🌻

      Liked by 1 person

  3. Great post Mishka and so true, it’s like you were describing me personally. I reached the point of just being “done” recently, and like you say it’s not giving up hope it’s just coming to terms with what is. Sending love xxx

    Liked by 2 people

    1. Thank you for stopping in for a read! 🌸 There are so many layers to this journey, aren’t there? It’s like some sort of quiet acceptance I suppose, maybe a reprieve from the grief. I have to say I love the posts on IG of your town. Everything here is stucco and Starbucks and it’s such a pleasure to see such a rich history. Hoping the weekend is kind you you🌻

      Like

  4. very well put!!
    I have fibromyalgia, hashimotos , ibs,chronic anemia ( from they think the hashi and ibs) and am a below the knee amputee.

    for me not going to the dr is huge now, I went from swearing I had cancer, I had to be dying some how with all my symptoms and pains. to now knowing even when my blood work comes back seriously bad, no amount of meds ( even at overdose levels) are working so what’s the point.

    I’ve too :”adjusted” ( I see it more as being beat into submission) to being my illness, to living as a new person with all this Sh*t wrong with me.

    Every moment I push I know it, I feel it, and I know I will pay for it, how bad and how long I don’t know but I know I have just traded one day in for many lost, my son when he was barely 20 ( so almost 5 years ago) told me he was reading up on people like me and he is the one who told me about the spoon theory, I’ll never forget that day, knowing he cared enough yet being so sad that he was searching on my behalf as he saw me slowly lose my battles.

    Now I find those around me have gone from questioning my withdrawing from life to being a ghost they gave up on, no one can understand unless they feel it, and for me I know and they ALL know I was the most social ,hyper ( been told more then once in life hyper active like an energizer bunny) happy person before the symptoms slowly took a grab of me until it finally erased that girl from existence, so why can they not comprehend one doesn’t simply lose their entire personality and identity for something to do.

    Liked by 1 person

    1. Thank you for stopping in and for sharing your experiences. I think it really helps to know we aren’t on an island. Chronic illness is something you can’t understand unless you’ve walked in those shoes. It makes a warrior out of anyone, because sadly, life becomes more difficult in almost every way. Hoping today is kind to you.

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  5. Tamara

    I simply loved this post. I must confess you are one of only TWO blogs I follow and I am forever grateful for your honestly and clarity in trying to live a life, ANY life, with this illness. Thank you for this post and helping me not feel alone in my journey. My sincerest thanks for blogging when I can’t. I wish I knew how to even begin, but am not sure I have anything to offer -yet. And then there’s this l”little” thing called computer savy… which I am definitely not.
    Much love today and as much peace and realaxatuon you can find. Thank you again.
    ~Tamara

    Liked by 1 person

    1. Thank you for stopping in and for your compliments. My blogging journey has a few reasons behind it, and one of them is to try to help other people feel less alone, as I did when I started blogging. It took me a long time to figure it all out…how to work the blog…but eventually I was up and running and I’ve not looked back. I also haven’t tried to enhance it; I’m sure I could at some point…but for now, it is what it is. 🙂 You could always make your blog private so you could get the benefit of writing but not have to worry about all the judgey-mcjudgersons 😉 out there. Hoping today is kind to you.

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