I know I haven’t been around in a while and I’m very sorry, life has been so crazy and my typing and thought process so poor that I’ve been taking an unintentionally long break. I have been writing every now and again, but mostly on Tumblr and Instagram, and sometimes for images I make in photoshop. Maybe I should post all those soon? I have also written about thirty drafts on WordPress that have been eaten, gone unfinished at the last minute, or that I am too embarrassed to post right now (and maybe ever). I will get back into the swing of things slowly but surely in the next month.
But, for now, I was stumbling through Amazon, and found this book and it just about made me burst into tears. I want kids so badly but because of EDS pregnancy dangers, my family history of Spina Bifida occulta and neural tube defects, the strong possibility that I have the MTHFR gene mutation, and a bunch of other factors, including a total phobia of doctors (I can’t even get into that on here or I will freak out and lose my relative calm for how much pain I am in and the fact that it’s 3:30am).
Though I want children desperately, what I really want and desire above a biological child is to adopt. I’ve always wanted to adopt. There will always be kids out there right now who need families. It seems so against my values to selfishly have a child via birth when I know there is little chance that child will not suffer like I do, and when I know that my ability to be a good parent to a very young child is never going to be strong enough. The thing is, I have a lot of love to give and knowledge to share, if not a lot of physical ability. Unfortunately, I will still struggle with very basic mom things, like shopping for clothes, or food for that matter, or taking them places at all, and cleaning isn’t getting any easier or more feasible lately though I try really hard. I’ve always wanted to be the perfect mom, but I think a large part of chronic illness is accepting that even healthy people don’t live up to that, therefore I certainly won’t.
I will be a good mom, I think, but I will have to work really freaking hard at it, and it will take everything that I have to give and more. Even if I do adopt a child, I am worried that I will feel like a failure as a mom no matter how much I try to cut myself slack for what I can’t control.
Seeing this book helped me a little. Knowing others are struggling with this, and that enough people even to sell a book about it.
Has anyone actually read this to their kids or bought it for themselves/future reasons? I hope there are more books like this out there by the time I am able to foster or adopt.
Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.
This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.
It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.
This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.
And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…
I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.
I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.
Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,
I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.
I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.
With a chronic illness or two (or five), it can feel, especially at first, like all mental growth and development is in limbo, that it is all so beyond you. Your ability to focus, care, be motivated/inspired, or be fully present in life is even suspended, and it takes a huge amount of effort to immerse yourself in any part of your day, from work to free time, pain can be so overriding that it even becomes difficult to focus on your significant other’s needs like you used to, or even to be aware of them. You feel terrible about these things, we all do. No one likes to have to compare our old selves to our new selves post chronic-illness.
And I respect that, very much so, and do not want to take away from the reality of those moments. Though I often try to emphasize the positive on this blog, I will be honest, there days when I have to write the positive message I want to say over and over again until I really believe it, or skip the “fake it till you make it” approach and wait to post something until I feel less cynical about life. I am often stumped by my own depression, my own guilt. My illnesses and pain often overwhelm me and leave me so hopeless I can’t even bear to write about it. I never want to trivialize the absolute difficulty of living in constant, unrelenting pain that threatens to burn you alive with its intensity. During times when I feel that terrible and dysfunctional in every way, I tend to shut down, pouring my energy into worry, fear of rejection, and often anger, among other negative emotions. I do not believe it is anyone’s “fault” if they feel upset about something. There is always, always, always a reason for why people feel and act the way they do, and though that may not excuse behavior that is harmful towards others, it also provides a framework for starting to understand those in all stages of recovery or maintenance with a chronic illness. Just because some of us happen to be really good at dealing with pain, and some of us do not handle it as well, does not make those of us who are struggling any less worthy of love or admiration for where we are in our life and what it has taken us to get there. It also does not give someone who is in a better place mentally, or who feels like they are in a better place, the right to demerit someone who is just starting out on this journey, or someone who is picking themselves up from the depths of hell for the 42nd time and trying again, or even someone who isn’t yet aware of the path in front of them and can only focus on their own misery all of the time. These are all stages of the same state of existing and trying to thrive with a chronic illness. We are no better or worse than anyone else in pain, or bedbound, or learning to walk again, or even than someone who has given up, spiralled deeper and deeper into the sadder side of illness. No one wants to suffer. We were not born aiming for misery. At no point did someone walk up to us and sell us this illness, we did not choose it, we would do anything to be better, and many of have done everything. This is hard. Bottom line. You are allowed to have days, weeks, months, years, where you feel like a failure. You are allowed to grieve, hurt, or be miserable. You are allowed to scream, cry, or feel the hollow, numb, hopeless apathy wash over you for a time. These are your emotions, you are supposed to feel both highs and lows, and all things in between.
No one gets to tell you that you aren’t dealing with your illness in the best possible way for you, even your doctor’s advice needs to be taken with a grain of salt and a deep knowledge of what is right for you, in a long-term sense. Listening to your intuition is confidence boosting, I promise. We are all doing our best, even if the whole world makes you feel like a scab on a wound stuck on the back of society, that is not our fault, and it is not forever! Nothing is worse than being stuck in the negative side of emotions, and on top of that, also feeling guilty for your own disordered thoughts.
Dear spoonies, you are doing the best you can. Please, please, try to take some comfort in the fact that there are people out there who know how hard you’re working, how every single day is a massive achievement, and how determined you really are underneath the tears, the desperation, and the bad habits that will not be dealt with right now.
You don’t have to think positive all the time. You can be loved anyway, no matter what side of the emotional spectrum you are currently leaning towards. You are still worth just as much when you are sad as when you are happy, so please don’t feel like just because you are depressed, you are worthless. Depression is a part of this. A study from 2008 at Northwestern University shows how pain actually changes our brains, and it takes some time to adjust to that change and figure out how to work around what you have been given. We are all different, there is no formula for everyone to achieve optimum happiness, and anyone that insists there is might not be as brilliant as they appear.
CHRONIC PAIN HARMS THE BRAIN
In a new study, investigators at the Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger other pain-related symptoms.
Someone who tells you that it is possible to be chronically ill your whole life without dealing with bouts of depression, obviously hasn’t suffered any major trauma in their life, either that or they are in some deep denial. Whatever the reason for their skewed logic, don’t listen to that crap. Illness can be traumatizing, but you are safe in thinking your thoughts, no one has dominion over what you feel, you are in charge, you are allowed to experience the ups and the downs in life without censorship. Just in case you don’t have a safe place to be yourself in all of your disease’s ups and down, I am always honored to listen and encourage. No one should ever have to do this alone. Chronic illness is an adventure best enjoyed surrounded by those who understand and commend your quiet everyday courage just in getting up each morning to a body that does not behave and a life that is more stressful than most. I admire each and every one of you, even if we haven’t met yet, I know you’re trying and I’m rooting for you.
Beautiful spoonies, you all fight so hard, and that makes me so proud to be a part of this wonderful and supportive community. Even if we’re depressed from time to time, we are still fighting to be here in a meaningful way, and very much deserving of finding that. ❤
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Love that image.
Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.
No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.
How are people even supposed to know I appreciate and need physical affection if I can’t tolerate it sometimes?
It’s what I get for sleeping a full straight 8 hours. I actually woke up thinking about pain before I could even open my eyelids, I could tell within seconds of regaining consciousness that it was a flare day. My partner rolled over and tried to spoon with me this morning and I did not want to get out of bed; all I wanted to do was keep cuddling and relaxing like Sunday morning should be, except I HURT EVERYWHERE and I had to be rude and crawl my way slowly off the bed so I could limp in a circle around the house. I really did not want to get up yet, but the springs were digging into my hip and radiating pain down my leg, my other calf was cramping up, my low back screamed at me, my neck felt like someone was trying to rip my head off my shoulders, and that’s the short list, as I know many of you understand so well!
I get so damn guilty about stuff like that, though.
I mean, it’s not his fault, he shouldn’t have to suffer. But then I have to gently remind myself that it’s not my fault either. It just is, there is no one to blame.