I had a blog topic all picked out to write on today and then I reconsidered. Normally, on FightingWithFibro, I always try to discuss meaningful topics and (try to) provide helpful ideas to manage them. Today, however, I’m deviating from that path, to talk about another important topic when battling chronic illness. The incredible toll it takes on your mind, body and spirit and the anguish that accompanies it.
I am always the first person to say that I choose to live with gratitude and acceptance; that despite all the challenges I live with, I instead choose to focus on accepting the life I do have and being grateful for the positive things in it. And that’s true. But want to know what else is true? Sometimes, gratitude and acceptance can suck it.
This past month, a Fibro Fighter like us, whom I greatly respect, tried to take her life. Thank God, she was saved, at the last minute, but the pain and despair in her heart must have been all encompassing to have done so. She is someone I never would have expected to attempt suicide and moreover, I had had a fun, light hearted conversation (via Facebook) with her, just hours before. Only proving how flawed the absurd notion is of “someone I would never expect” and how well we put on airs, despite our hearts being in the pit of despair.
That same week, I had a reader reach out to me, who was at her wit’s end after being cut off her pain meds. She was asking for ways to fight the providers who force tapered her and was facing a very serious decline in her overall quality of life.
With both of those strong, constantly fighting souls, weakened to such a state of despair, I’ve decided to write this post, instead of my original. Because, they, like so many others, who reach that level of desperation, are no different than the rest of us. Myself included.
So instead of writing my planned post, instead, I’m going to say that I’m a little bit broken right now.
- I’m so tired from the Chronic Fatigue Syndrome that lifting my legs feels like I’m dragging cement shoes. It’s difficult to keep my eyes open or lift my arms to type. I can’t think because my tired brain is full of pea soup and all I want to do is sleep, again.
- The Fibro has found all new and exciting ways to hurt, including my Achilles and pains in my toes so intense, I have to stop walking for fear of falling. Literally every bone, every joint and every muscle throb. Enough so, even the Tramadol barely takes the edge off.
- I have had a headache or start of a migraine every single second, of every single day for weeks on end. They don’t always progress to the brain crushing full blown migraine, but the blurry eyes, noise & smell sensitivity and general drunkenness state are ever present. I go to bed with them, I wake up with them and at least three days a week they do achieve full blown brain bash.
- The Dysautonomia attacks when least expected and levels me. I get light headed, then dizzy, then nauseous before finally giving in to laying down for hours to try to calm it. I fall over from standing, walk into walls and lose my balance constantly. My perception and depth perception have become so altered, that we’ve decided the safest and most responsible thing is for me to stop driving and sell my truck. (at only 45 years old)
- The (what the Doctor now believes is) Polyneuropathy leaves my whole body vibrating, sometimes so badly, it feels like my teeth could chatter. It feels like an electric shock all over my body, similar to sticking your finger in an electric socket or that sharp shock you get from static electricity. The pain, burning, stinging and vibrations can last for hours, truly challenging whether I can survive even one more minute.
- But mostly, 24 hours a day, 7 days a week, 365 days a year, I feel awful. It’s just the short reprieves, within those days, that enable me any life quality.
So you know what? That gratitude and acceptance and all that other happy positive unicorn stuff is making me want to throw up, at the moment. Because today, like the rest of the past week, I just do not have any of it in me. Which is precisely why I’m writing this post. Because it’s totally okay to not have any of that in us; even for those of us who normally do.
- It’s okay to be pissed I got sick
- It’s okay I’m miserable and sad and defeated
- It’s okay that I’m jealous that I’m not living the life I want or that I’m forced to watch everybody else live the way I wish I could
- It’s okay to cry, yell and feel sorry for myself and wonder what I ever could have done to deserve this life
- And it’s okay that I cannot just pull myself out of it “this time”
Lately, I’m trapped in an endless cycle of run (errands, appointments etc), crash and rest, then try like a dummy to catch up, on all I had to let go. Run, Rest, Catch Up, Repeat. Run, Rest, Catch Up, Repeat. That cycle just seems to replay like a skipping record; because it’s all I’m capable of right now. And it’s nauseating. As if I wasn’t already nauseous enough.
And all that, is really the crux of it. I’m tired of that perpetual pathetic cycle and the lack of any ability to have a normal, fufilling life.
I’m tired of finally getting to clean the toilet, only for it to need to be cleaned again. All the while, never getting to the windows that are so dirty, they’re difficult to see out of. I’m devastated I can’t just go to a store to walk around and enjoy myself, because car rides make me violently ill, plus I need a chaperone to go anywhere. I’m overwhelmed I still haven’t cut my gardens down or that winter is coming and there’s a multitude to do before the cold and snow arrive.
I’m angry and jealous that my friends and loved ones still get to have a life. Be normal. Do fun, exciting, spontaneous things. And then I hate myself for feeling that way, because I wouldn’t wish this life on anyone.
I’m too full of anxiety to try to find another Neurologist, who may or may not diminish my issues, who will most certainly prescribe yet another drug, which will most likely make me sicker, most certainly not help, only to have to go to more appointments, before having them suggest yet another new drug. So I just choose to exist with a constant migraine.
Mostly, though, I’m tired of the loneliness and isolation. I’m tired of always feeling SO vulnerable and that my life is totally not in my control, but in the control of Doctors, who at any time might take away the only thing that gives me any semblance of a quality of life: my pain meds. I’m tired of being terrified to grow older with these diseases and think of how they’ll further cripple me with age. I’m furious that my Husband is constantly working to make up for my lost wages and stressed over how we can ever afford retirement.
And most, most, most of all, I’m terrified of losing my Husband (somehow), because for the only time in my life, I’m completely incapable of taking care of myself. And as a former vehemently independent woman, the thought of that is horrific.
What I hope and wish you would take from all this isn’t the heartache, pain and struggle that I just depicted…….what I really hope you will glean from all this, is that THIS is what it is like to live with chronic illness, at least sometimes. THIS is what we all live with and what quells, bubbles and boils right under the surface. So if we aren’t hiding our pain, we’re hiding the suffocating fear, anxiety and mental anguish that the pain and disease feeds.
Not just me. But so very many of us.
I have no real remedies for when the strangle hold finally cuts off my air. I’ve upped the frequency of my therapy sessions, I’m being honest with my kids that I am not in a good place right now, I’m taking the anxiety meds, I’m not a fan of and I’m feeling ALL this pain.
Because I’ve felt it before and gotten through it. I know I will feel it again. And maybe next time, I’ll be better equipped to weather the raging Tsunami of emotions.
But for those who feel like there is no alternative, but to end it; there is. Please don’t. For as much as we/I am struggling today, tomorrow is a new day. And every new day that we get up is a chance to fight again; to regain that inner resolve that gives us the purpose or hope or strength to continue again.
It’s another day when we may be ready to re-embrace that gratitude and acceptance.
I thank you all for giving me such a special platform to talk about some very serious topics. But most importantly, I thank you for the bigger opportunity to highlight that none of us are insusceptible to suicide or suicide attempts. It does not make one weak or pathetic.
It makes you one of us. A fighter who’s incredibly tired and feels incapable of fighting for even one more day. I’ve felt your pain. I’ve lived through it and I want you to know that as horrendously awful as it gets, that obnoxious gratitude and ability to see beauty in things can return. Please just give it the chance to.
This post is dedicated to all the fighters, who’s courage sees no bounds and especially to you know who-because I’m SO grateful you’re still here with me/us. <3
I love you all <3 Stace <3
If you are struggling or contemplating suicide, **please** reach out to the National Suicide Prevention Lifeline at 800-273-8255 or to someone you trust and love. Because you’re worth it and you belong here <3