My friend Misty is a Lyme Disease fighter, and she’s been fighting it for more than fifteen years, though she was diagnosed within the last two years, about the same time I found out I had fibro. We grew up in the same small little town towards the Oregon coast, and since I never went to high school with her, being sent off to private school instead, we didn’t have an opportunity to speak for many years. Thanks to the magic of facebook, we are back in touch. I’ve learned a lot from Misty.
In addition to being a totally courageous and fabulous warrior kindred spirit, she is also a mom to two little ones. She just had her second, against all odds, against everything she’s been told by doctors about her prognosis. She keeps searching for a cure on her own, she keeps educating others about tick borne diseases, and she keeps building her family. She fights LD with a holistic, carefully researched approach. That kind of honesty and determination deserve some love. Though I wish she had her own blog to record her thoughts because her writing is incredibly strong and poignant, you can understand why a mom to a little boy and a new baby girl, a mom who suffers from advanced Lyme Disease, does not have the energy to keep up a blog. When she posted this poem on her facebook, I had to ask if I could share it on her behalf, because I’m feeling really lost and this piece of writing calmed me down and reminded me that as much as I’m feeling rejection right now, there is a lot of love in the spoonie community, enough to make up for what I’m missing. We are never fighting chronic illness alone, no matter how geographically separated we are, we spoonies do such a great job of always lifting each other up with what little energy each of us has.
I’m really delighted that Misty said I could share her beautiful poem, and I hope it helps someone else feel less alone and more understood.
THIS IS DEDICATED TO ANYONE SUFFERING FROM CHRONIC ILLNESS:
by Misty Perkins
when all your talents are unusable
All your intelligence faded away
That spark you had has flickered
When all your motivation taken away
When all the things that define you are gone
what is left at the end of the day?
When memory fades
All you feel is confusion and rage
When your bones ache
And your body disobeys
How do you answer when they call your name?
Are you really you, when you’re not the same?
When you can’t find yourself
And you’re lost in a daze
Does anyone care to trouble with the maze
Will they see you there, or pass on by
Will they hold you tight
Or watch you cry
When you have no one else, and you’re lost to yourself
How do you cope, when no one can help?
I don’t have the answers to those questions, but I am closer than I was a few years ago. Progress, not perfection!
Thanks you, Misty, for allowing me to put your poem on my blog so others could benefit from it too.
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.
A thoughtful, well-made list of extra steps to take when you are experiencing a flare-up of symptoms, no matter what illness(es) you may suffer from. The author, Audrey, was diligent about this list and surveyed others to get a more complete array of options. I feel like there is something on this list for all of us, and as Audrey says in the post, “Because, let’s face it, when we are in the throes of a serious bout of turmoil, we forget. We forget to reach to those resources we so carefully crafted, selected. We forget the hours we poured into trial and error sessions to find what works best to help us and when.” She is so right. I love having a place to refer to when I am hurting so bad I can’t steer my thoughts away from the illness and pain. Even if I don’t feel capable of doing everything on this list, I can always do one thing, and the more I practice these techniques, the better I become at accepting and making peace with my illnesses.
Having a tool box is essential to coping with a chronic condition whether it be pain, illness, depression or some other continuous issue. A tool box helps us get through moments, sometimes days and maybe weeks but the true purpose is to help us see passed the hard moments we don’t know how to manage.
Now, I’m not talking about an actual Craftsman tool box because it’s a bit big and unrealistic for most of us, but if you find that helps, awesome. I’m talking about a box of resources for all the challenges we face on an on-going basis. Sometimes it helps to have an actual box with these things listed inside, perhaps on slips of paper, or filled with happy thoughts, other times an excel or word document, notebook, fridge magnet, or other key reminders. Because, let’s face it, when we are in the throes of a serious bout…
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Introducing the free mental health resource 7 Cups of Tea to anyone who hasn’t heard of them before.
If you need someone to talk to, any time, this is a great website to save in your favorites. All chats are anonymous, and you can either connect to the first available listener or find someone who fits your needs from their list of therapists and listeners.
7 Cups of Tea is a safe, non-judgmental online space to talk it out with trained active listeners. You can even connect with a therapist or active listener whose specialties are of interest to you or your particular situation. There is also group support if that is more your style.
7 Cups also offers a set of thorough self help guides to consult, including self-help for chronic pain, as well as for anxiety, college life, and even one for entrepreneurs who are struggling with their start up companies. There are a wide variety of topics covered, you may be surprised to see a self-help guide for something you thought not that many people struggled with. They keep an expanding library of articles about specific mental health topics, such as this post on Mindfulness.
There is a lot to see on this website, and a lot to remind us about basic self-care during the tougher times in our lives. The self-help guides might seem repetitious for spoonies and those living with chronic pain, but our mind plays tricks on us when we are at our lowest, and the simplest of ways to practice self-compassion and healing slip through our fingers. That’s why it’s a useful website to bookmark and visit often, even when you’re not planning to chat with an active listener. I have added 7 Cups of Tea to my Chronic Illness Resources Page. Any online resource like this is just fabulous, and this is one of the best I have found. Plus, it’s FREE, and free is an awesome price. Especially for those of us who are prohibited from working by our illness or pain.
Volunteer Opportunity Alert:
If you’re looking for a volunteer opportunity that you can do any time from home, this may be perfect for you! They are always looking for new Active Listeners to train so that more people can receive one on one attention.
If anyone has any suggestions for self-help websites or free online therapy, please leave the URL below in a comment and it will be added to my Chronic Illness Resources Page.
So You’re Healthy, and You Want to Date a Sick Person?
Like, Really Date? Here’s what you need to know:
Millions of Americans suffer from chronic illnesses. Millions of young (<35) Americans suffer from chronic illnesses. And, millions of young Americans suffer from chronic, invisibleillnesses. I’m one of the third kind, and if you’re healthy, and want to be in a partnership with someone like me, this containssome of what you need to know.
1. Think about it. Are you sure?
If you said “yes” before beginning this sentence, the answer is actually “no”. For the good of all of us: if you enter into a relationship with us, you have to: 1) be sure you want it, and 2) ensure you’ve spent at least ten hours finding out about disability, and the illness(es) in question. You have to think about it. Are you going to be okay leaving something you really wanted to go to because they’re not feeling well? Are you going to be okay with many late night ER visits? Do you understand that they may never be able to, or want to have, kids? And, it’s on us (hear that, sick people?) to try to explain what it’s like to be the partner of a sick person. Hopefully I can do some of that work here.
*That said, take forums made for disabled people with a grain of salt, because they’re generally not representative of what daily life would actually feel like
2. Try to understand, and to really understand. But most importantly, internalize that you probably never will be able to.
We have to deal with a lot of well-meaning but misdirected “advice” every day. Some of us hate it less than others, and some days no matter how little it bugs us it will probably send us into a tailspin. Understanding that we are having an experience entirely foreign from the one you live is the best way to minimize advice coming from you.
Some things we do don’t make sense, and we can’t communicate it to you. Why is it that I can lift a box, but not wash off a fork? I don’t know how to explain it, but that doesn’t make it any less true! Also remember: “Third party perspective” is an invaluable resource, for any relationship. If you’re going to be in the relationship, it may be good to find a few other people who are also SOs of people with invisible disabilities.
3. We will always be highly variable, and occasionally inexplicably variable.
Some days, we feel good enough to make plans. Occasionally, they are ambitious plans. However, that does not mean that that should form an expectation. If I say that tomorrow I want to do research on how to start that company I had been thinking about for ages, and tomorrow comes, and I’m not doing it immediately, it’s not because I don’t want to start that company. It’s because Ican’t. And yes, believe me, I know I said tomorrow I would do that.
But here’s the thing: we don’t have any idea what tomorrow will look like. Sometimes tomorrow looks like a warm breezy September day. Other days, tomorrow we wake up and the first thought we have is “Wow, I actually feel like I’m going to die.”
4. Understand that one of the biggest hurdles is that we do not look like we are sick.
Even to ourselves! If I look healthy, society expects me to act healthy, you expect me to act somewhat healthy, and worst of all, I expect me to act healthy. I feel like I should be able to do all the things that normal 20-somethings do, except that doesn’t happen, because impossible things generally don’t happen. Cue me feeling guilty, and blaming myself. And no one else understands, because I don’t look sick, and because, why would anyone ever complain about not being able togain weight?
5. Don’t judge us for how we medicate.
Do you have any idea how long it takes to get into some of the specialists we need to see? Months and months. If my body is breaking, and it’s going to takemonths for me to see someone who may even have a possibility of starting to fix it, you bet your ass I am going to be forced to self-medicate. Yes, even the “scary” medications. Let’s take opiates. Sick people are not addicted to opiates. Sick people take opiates to be able to function. Every sick person I know has been able to stop opiates cold turkey no problem after they’ve finished a round of needing them. But guess what? When you need them, you fucking need them.
Accept that you don’t know what it’s like. And, accept that the stereotypes don’t apply in this instance. We’re not doing it to be “doped up” or forget our problems. We’re doing it because although we acutely know what our problems are and would take a good doctor’s appointment over vicodin in a HEARTBEAT, we also know that that appointment is a long way off, and we need to not be incapacitated. I’ll let you in on a secret: it’s kind of like a competition within ourselves to see how long we can go without taking something that will make us feel better. Today I cried because I felt like a failure for needing pain medication.
Also realize that things do not work the same way in our bodies or our brains. Normally, I am extraordinarily uncoordinated, and fall often (without reflexes). When I’ve had sedatives, I become not just graceful, but exceptionally clear-headed compared to before. Brain fog: it’s a thing, it comes from pain.
6. Don’t have your primary desire be as a caretaker.
Some of us want partners. Of those that want partners, sometimes we will want to be taken care of. But, regardless of if we want you to be our caretaker, it is not a good idea to start a relationship with one person’s primary role acting as caretaker. The difference between taking care of and being a caretaker is enormous. Self-sufficiency is important, and it’s a skill we all have to learn. Sometimes, we will need help, and we will call you. But dependency is easy to fall into and hard to get out of, and it will destroy your relationship.
7. Sometimes us being sick will suck, a lot, for you too.
Sometimes we will be on medications that change our personality. If we’re on steroids, we’re probably going to be cranky. Some of us have Raynaud’s, partial seizures, vagus nerve dysfunction, adrenal dysfunction, and other conditions which can make us temporarily moody. Most of us don’t sleep well. Most of us have a hard time with food.
If you’re lucky, you’ll be dating one of the kind that is pharmacologically self-aware, and they will be able to tell that something is making them some way other than normal, and try to fix it. Unfortunately, some of us don’t know when we are acting differently, which is compounded by the fact that most of us have so many possible explanations for everything that it would be very difficult to find the culprit. And sometimes, we can’t change it at that moment. You don’t take steroids unless you need them. It’s also pretty hard to balance your hormones.
8. No sympathy. Empathy, but never sympathy.
Do not ever fall into the trap of what I like to call the “adversity inferiority complex”. This is when you compare my problems with yours, decide that yours are less worthy, and hold them in. This is a recipe for disaster. Partly because it breeds resentment, and partly because it’s actually a lot easier for us to help others with their problems than to always focus on our own. So a lot of the time, we will be happy to help you, even (and maybe especially) if we are feeling shitty, because then we have something else to focus on. Also because if you truly want a relationship, the only way you’re going to be able to have one is to go through things together. And trust me: we want to hear about your struggles.
It should be established that if we’ve hit a major threshold and just can’t, then maybe there can be a safe word that means “I really can’t right now, but I want to very much, can we schedule a time to talk later?”
9. Talk with us.
Talk with us about it a lot, and take time making this decision. Because if you do, it requires a lot of trust from us. And as a sick person, Trust is both the scariest thing to give out, and is a finite resource.
10. Most of the time, when you think we’re mad at you
We’re worried you’re going to leave, because we’re sick.
Despite all of this
Most of the time it will be like being in a normal relationship with any two people who like each other. Every relationship has hurdles. These will be some of them. That doesn’t mean that most of the time, you will even be aware we are sick. But, these are things you need to know for those times.
My Response to YesIReallyAmSick on Tumblr:
The author totally hits the nail on the head, especially the last part about when we seem angry. I was with my boyfriend for years, actually planning a future as his caretaker (he had been told he needed major hip surgeries spanning a few years of total recovery time), before my car was hit by a semi truck on my way to work. After my initial 50% recovery in the first six months or so, slowly I went downhill again, until I finally became too sick to work or ignore what was going on any longer. Our story is a little different in that we were both healthy when we started dating and living together, and in the same year, we both had life-changing medical happenings, and not in the good way. Suddenly, my boyfriend and I found ourselves unable to work normal jobs or participate in life as much as we would like. Young, sick, and in love. How hollywood. Except it is nothing like a movie.
The relaionship started out so classic; chubby goth nerd girl dates tall former football player. I fell in love right away, and told him so, but it took him another year to decide he wanted me too. We never dated like regular people, even then. We hung out in our apartments with friends and at friends’ apartments, we cooked eachother food and drove around the city aimlessly, because we were too broke to go to bars, and we didn’t ever do the dinner and a movie thing. We have spent every single night together since the first night, except for one this last year in which I slept at home while my boyfriend was in the hospital overnight after a surgery. Our first date was five months into our relationship, just before we moved in together. It was a camping trip, our first together but one of many to come. I think I surprised him by actually knowing how to throw a baseball. And by how much I wanted to hike, explore, and never go home. Things are so different now, and it almost hurts to recall the person I once was.
I worry about the toll it takes on him to be picking up my prescriptions now, taking me to appointments because I have lost the ability to do so myself, remembering what I cannot remember while I am talking to my doctors, and most of all seeing me in pain and miserable and not being able to fix it like he fixes everything broken. For his sake, I wish I did not have this long list of medical problems, but for my sake I am somewhat grateful that I do, something I cannot explain fully in this post, but which I try to convey through most of my other writings.
The major downside to falling for someone while living with a chronic illness is that it is heartbreaking to know I place limitations and higher-than-reasonable expectations on the love of my life. He is going back to school since he cannot work his old labor intensive jobs anymore, and we live off of his financial aid, which will have to be paid back eventually. It’s not a glamorous life, we are broke, broke, broke, and what money we come by goes towards medical supplies and prescriptions, for both of us, but mainly me. Money is a thing that unfortunately will limit our plans as well, because I am truly sick and I cannot just skip picking up my medicines, even though they sometimes come out to $800+ out of pocket in a month. This is not what I imagined. This is not what I planned for. This is not what I worked so hard for. But it is reality. And feeling sorry for myself is not my style.
Therefore, in our relationship I do not regret all that we have been through together. I know without a doubt that he loves me, that he will stick by me in sickness and health, and that I will do the same for him. Many couples do not have that bond, and again, I defer some level of gratitude to my illness.
The divorce rate for those with chronic illness is very, very depressing. It hangs around 75% of marriages. So many relationships destroyed by the difficulty of fulfilling the vows they exchanged: “In sickness and in health.” I hate those statistics. I hate that I am fighting those odds now too. But I love the man I am with, and I have seen him do whatever it takes to be with me, and he has seen me do the same for him. I have slept for a month on the couch while he healed from his surgery in a hospital bed in the living room, during a massive flare up. I did not struggle to make the decision to do so, because if he needed me I could not hear him if I slept in the bedroom, and at that point he needed me often. He has driven me an hour each way to appointments even while his hips are killing him. I have cheered him along while he chose a new career path and went back to school, and I have supported unquestioningly his need to take a few semesters off for grief and for surgeries. He has supported my difficult journey and allowed me to find my voice and my way again post-diagnoses, even when it meant getting fired from my job and beginning the terrifying process of applying for disability as a 20-something recovering workaholic.
To say that we are dating is a white lie. We are nesting, we are living together, we are committed, but we do not get to “date” each other like other couples do. We have not been out to eat in over a year, easily. Our frequent camping trips, which I always considered the most romantic dates of all, have become one night mini-adventures, which we both suffer from disproportionately and can only manage once or twice a year. Our long drives to nowhere to look at houses and gaze at scenic areas of Oregon have stopped. Our couples-daydreaming of a future on a farm have ceased. When we talk about having children of our own or adopting, our eyes hold bittersweet, cautious hope that we can still make real the dream of little ones, no matter what happens.
Our future is murkier now. Will I be able to carry a child to term? Will I be a good mother? If he needs more and more surgeries will I be able to care for him, and children, when I often can’t even care for myself? Will my condition ever allow me to bring in money again? Can I homeschool and make everything from scratch or is that ridiculous? Is there a way to minimize the impact my illnesses have on my lover and my theoretical future children, without compromising my treatment? Will I deteriorate further the older I get? Am I sure I can’t just snap my fingers and get rid of all these issues, go back to the way we were and the innocent daydreaming of a happy, hard-working, fulfilling life?
Yes. I am sure. But only because I have tried it a few thousand times to make certain.
I am just like you. I want to go hiking this summer, want to drive to the desert, or the coast, or the mountains spontaneously. I want to work hard and play harder. I long to have ordinary twenty-something nights; to once in a while get drunk with my old friends and run around downtown in the rain in heels, with no coat, until 4am. When the radio plays a song that stirs my soul, I get excited and daydream of concerts and dancing with abandon while all the hipsters stand there, swaying to the band with their hands in their pockets. If friends and family tell me about their relationship issues or financial struggles, even their aches and pains, I have a deep well of empathy and understanding no matter how bad I am feeling. When people tell me to buck up, pray harder, or stop trying to attract so much attention with my illnesses and injuries, I am furious. Wouldn’t you be angry if you had channeled your over-zealous work-ethic into trying literally everything to cure yourself, from conventional to the very odd? I have a right to be furious if people insinuate that I am lazy or not trying hard enough, or that I want attention, nevermind that I worked a year and a half past the point of spending most of my days sobbing or trying not to sob while working because I just hurt so much. I did not choose my broken body. Every small task feels like a marathon to me, but on the surface it’s not possible for most people to see how much I struggle with small daily activities that others take for granted.
I still have ups and downs in my moods that have nothing to do with being ill, but I also have moodswings that are out of my control, either from imbalances in chemicals in my body, or from medications I take. Talking to me with an open mind is the only way to find out which it is. Sometimes I don’t even know I am acting strangely.
Every day I have to ask myself if I can really allow the person I love so much to suffer along with me. I have to ask myself if he wouldn’t be better off finding a healthy girl who can bear him the children he so badly wants and take care of him like he deserves when he is hurting. Someone not so damaged would be great for him, right? But that is the voice of insecurity and it takes up real, vital energy to worry, and we are in love. That is all I need, I hope it all he needs too, I trust him to choose what is best for himself. The fact that he loves me and I love him holds the answers to my painful questions. I would so much rather focus on the love between us than the uncertainty the future holds. Unfortunately these thoughts and fears do resurface often or I would not be writing about them at all.
To be honest, I am often scared of losing the love of my life to sicknesses that I never wanted. I am scared because the man I love can get up and walk away. I cannot. I am stuck with it, with the late night ER visits and furtive internet research on my conditions. with medications that I hate taking, with horrible insomnia and a libido that disappeared completely, with support groups and symptom logging, with severe, non-stop pain that changes my personality and rewires my brain. I am bound by a very finite amount of energy each day and there are dire consequences for overstepping my energy envelope. I cannot opt out of this delicate balancing act (or disastrous mess, depending on the day), but my partner can. Yet, he chooses to be by my side.
The trust has to be immense between us to make it work in a long term sense. The communication has to be from a place of equality and respect, and it can never stop happening, or the relationship essentially shuts down too. We have very ordinary couple problems, as well as very specific troubles relating to illness, grief, disability, and pain. Our relationship has been through more than most sustain in a lifetime of marriage.
Talking about chronic illness and its effect on our relationships is hard, because love is vulnerable. There is so much at stake. There is a person we cannot bear to lose, or a potential to meet and fall in love with someone we cannot bear to lose, and our illness absolutely will impact that person negatively at times. That is not the stuff of the average happily-ever-after, but it is mine.
I do not regret the powerful sway that love has had over my life in the last six years of coupledom. His heart is something I would not trade for wealth, for wisdom, or even for wellness.
Still, I worry, because even the strongest relationship is not perfect, and I have added so much stress to our lives by becoming ill. Stress that just isn’t healthy for anyone. I care about and love my boyfriend deeply and do not want to be the one part of his life that holds him back from finding his own happiness. It is a delicate and complex balance to communicate with my partner enough, about the right things, while somehow not over-sharing all the time. I’m terrible at the balancing act between too much and not enough information right now, and that absolutely causes problems. That is just one tiny example of the difficulties of putting love into action while dealing with the cards dealt by chronic pain and illness.