Pacifist Turned Chronic Illness Warrior

There are people with chronic illness that do not like being referred to as warrior’s; I respect that point of view. In fairness, I respect most points of view that don’t in any way hurt anyone or anything. To each his own, right? According to Google’s dictionary a Warrior is a brave or experienced soldier or fighter. I don’t know about you but as a person with a chronic illness I find that definition very relatable.

Here’s the thing…before I came down with CFS I was strong, super strong actually. That strength has probably helped me get through on the tougher days but it doesn’t hold a candle to what it takes to live each day with this illness.

This illness took me to rock bottom, kicked me a little further, but then thankfully it let me decide what I was going to do about it. When I chose life, living each day to the fullest, and being the very best I could be at spreading awareness my life changed. Am I thankful for the illness? No. Many people with chronic illness say they are thankful but as I’ve said before on here I’m not thankful. Maybe someday I’ll find that peace of mind, but right now I’m as mad as an angry hive of hornets about it. Maybe it’s that anger that keeps me going. Who knows… They say anger is really fear, and I’m not ashamed to admit I’m scared, very scared. On a daily basis I bury that fear and that anger deep in the ‘do not disturb’ recesses of my mind and it allows me to live a fairly peaceful existence. And yes, I realize that suffocating your emotions is unhealthy but let’s be honest, it’s survival at this point.

Last week I chose to do something I knew would have steep repercussions on my health. I say ‘chose’ lightly as fighting for disability income that you’ve been paying into since you were a teenager just in case at some point in your life you unfortunately fall ill shouldn’t be something you have to fight for where ultimately you are going to end up more ill because of it…and yet, here we are. The warrior in me said, “Let’s do this! Let’s go to battle.” The illness in me said, “This isn’t going to be good.” The strength in me shrugged and said, “Well, we’ll do the best we can.” The stress and turmoil pre-hearing, the increased insomnia, the stomach pain, all not healing for my body. The feeling of being terrified on the day of, very unhealthy. The experience itself, where my mind shut off and I was one wording a judge that I had waited almost two years to see and tell my chronic illness journey to mixed with the rumination afterword of how little I’d said, and mostly of the fact that he never asked about my illness or day-to-day life, awfully unhealthy. And now here we are a week later and I’m still trying to heal past it, mentally and physically.

Yesterday I contemplated, once again, going to the ER, which as a CFS patient you know isn’t going to go well. My doctor would have sent me straight away as my heart wasn’t beating properly and we’ve been down that road so I chose not to call her. Flares bring on, amongst other things, shallow breathing and an irregular heartbeat, feelings of chest pressure and chest pain. The ER does nothing. The thing is you never know if you are actually having a heart attack. I’m of the opinion that lying in bed weighing the pros and cons of an ER visit while waiting for my heart to steady is one of the things that makes me a warrior. I obviously won that battle as here I am, my heart did eventually steady out.

So, to sum up, when I call myself a chronic illness warrior, it’s not something I say lightly. The truth is in principle I’m a pacifist, but I’m battling on a daily basis, against my own body, to live as a normal of a life as possible. I miss my life like a fish out of water. It takes bravery, experience, and courage most people will never face to live this way. We all experience illnesses differently, for me it includes convincing my body that my growling stomach must be fed and that means making the way to the kitchen to boil water in the electric tea pot to make oatmeal and tea every single day, capable or not. It also means painting because rarely do I feel like I have it in me, it definitely means blogging as I literally never feel like I have anything to say that’s blog worthy or the energy to get it out here. It means going up and down the block with my son and the dog as often as I’m even remotely able so that my fibromyalgia pain doesn’t win the chronic pain war and bring me to tears daily. It means ignoring the daily exhaustion, dizziness, nausea, not being able to stand for too long, insomnia, cognitive issues, post exertional malaise, having to tinkle allll the time, all over body pain, eye issues, sound intolerance, throat issues, breathlessness, heart issues, unexplained out-of-range labs and so much more. Being a warrior for me means telling my brain that it’s okay to ignore all of that and find the best in each day. If that’s not being a brave or experienced soldier or fighter I don’t know what is.

Thank you for stopping by, I appreciate you took the time out of your day. For you chronic illness warriors, we got this! For those of you who don’t prefer that terminology, we still got this! And for those of you who stopped in even though you aren’t chronically ill, thank you.🌸

A few more of my little watercolors from the past week below. I’ve been a little off my game, but something is better than nothing.

30 thoughts on “Pacifist Turned Chronic Illness Warrior

  1. This is such a wonderful, honest post. Were you told the results of your hearing that day, or do you have to wait for an answer through the mail? …And by the way, I love the term warrior – I think it highlights the strength we have to have to live with chronic illness. Blessings to you!

    Liked by 2 people

    1. Thank you, Terri🌸 The outcome will arrive in the mail in approx. 1-3 months. I’ll definitely update here when that happens. I appreciate the blessings too. 🌼 It’s so comforting to be amongst such lovely people who understand. Hoping today finds you doing as best as possible.💕

      Liked by 2 people

  2. Fingers crossed that it went well! As someone who doesn’t like to be called a warrior, your post helps me understand why some people do. I will agree that you are indeed a warrior my dear. Again so happy to have you here.

    Liked by 1 person

  3. Albert Camus, the French existentialist writer said in his novel Caligula. “Man dies and is unhappy”. Those who accept that thought are “warriors for reality. You are a true warrior and that is the road to inner peace. Bless you.

    Liked by 1 person

  4. Emma (Not Just Tired)

    I definitely agree we are warriors. Sorry you had such a horrid experience with the hearing. I hope you get a positive outcome from it at the very least. Living with these chronic illnesses certainly push us to our limits, in more ways than one. Hope this week is going okish for you 🌸

    Liked by 1 person

  5. You’re one tough girl! I salute your strength and respect the battle you fight every day. It’s funny to me that at times when we physically the weakest, we are mentally the strongest for fighting that weakness, day in and day out. In other news, I thought I was the only one who felt chest pressure, tightness, pain, difficulty breathing when I was in a flare. Though I am sad you have to face it, it gives me some solace that I am not alone in this. Anyway, thank you for this post, heaven knows we need more awareness for CFS. Keep those boxing gloves on! ❤

    Liked by 1 person

    1. Thank you for your compassionate words.💙 Cardiovascular issues are very common with CFS so we have lots of weird unexplainable heart stuff going on. Stay safe! You just never know. My mom had CFS I believe and was misdiagnosed. She passed away of heart failure. So please be safe. 💕

      Liked by 1 person

      1. That is so sad, about your mom, and also very scary. Take care of yourself! I hope if you start to have any real issues with heart functioning, that it is caught early and properly treated. There is so much to CFS . . . it affects so much of the body in so many different ways, and we know so little about…

        Liked by 1 person

  6. oasischarm

    The process of getting disability is so hard and as you described, can make their conditions worse. I probably only managed to get mine because I was fortunate enough to have help from mental health professionals and my amazing mom. I wish you the best of luck getting it.

    Liked by 1 person

  7. You’re a WARRIOR and I’m a WARRIOR. Funny, I just posted a poem today titled “WARRIOR.” It’s not my best writing, but I hadn’t posted since last September, so it’s the best this WARRIOR could do today. I accomplished something. And, I get it about going to the ER. I’m so tired of one doctor telling me to go to the ER and then I get there and I’m treated like, well, you know……………………………………………..So, I’ve just been bedbound, suffering and will have to do so for another week before I can get this feeding tube replaced. It’s out of place, coiled up in my small intestine, and it’s very painful. Can’t use it. Can barely eat or drink anything. It could perforate my small intestine or my stomach if it makes it up into my stomach like it usually does, but hey, no big deal because none of that is an emergency according to the 3 local ER’s in my area. Dehydration? Nope, not an emergency. Malnutrition? Nope, not an emergency. Severe pain? Nope, not an emergency. Unable to eat and drink? Nope, not an emergency, either!!!! So, no I’m NOT going, as ordered. So, I do prefer the term WARRIOR because that’s exactly what I am. Like you!!! Take care. XX

    Liked by 1 person

    1. I’m lying here in shock that a human being could be treated as you have been. It’s inhumane and I’m terribly sorry. Hoping your body cooperates best it can this next week. Living in a chronic state of uncertainty takes a strong, fighting spirit, which clearly you possess.🌸 Sending you strength!💪 Thank you for stopping by for a read and also for sharing. It helps to know there are other warriors out there fighting the good fight.💙

      Like

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