This week I stumbled onto a secret I used to know, but which I thought maybe didn’t apply to me anymore since I am less able to do the things I used to do. I am less able to go out of my way for others, was my reasoning. I don’t have the energy, I can’t even shower but once every four days, I’m constantly hovering between a 6 and an 8 on the pain scale, so what do I have left to give to anyone else? What could I possibly have to give to others that was of any value, with brain fog, fatigue, and such tremendous pain and emotional distress.
I stumbled on the secret by accident. I’m have had a particularly bad week on every level, so I wasn’t planning on trying to be the saver of the day for anyone but myself, and even then…
Yesterday everything kind of crystallized into that perfect storm of craziness and incompetence of doctors/insurance and difficulties communicating my needs to others and feeling like maybe I haven’t really learned anything at all from all this searching for myself that I’ve been doing. I was wondering what the point of it all was. How am I going to get through living with an illness, having my medications held up every single month for the most stupid, but constant, oversights on my doctor’s part and absolute asshole-ishness from my insurance company? How am I supposed to live with myself when I have no job, I do not seem to be getting better no matter how hard I work at it, and except for my day to day mindset, nothing symptom-wise has improved this whole stressful, grief-filled year. The day before yesterday, having the ability to control my reaction to the situation just did not seem like enough. I flipped out on Marc, the manager of the pharmacy, a guy I admire and love talking to and a guy I have cried at and yelled at many, many times. He’s a saint. It was nowhere near a mistake he made or had any control over.
I was being unreasonable, childish, horrible. Not the person I want to be. I kept repeating the things other people had told me, that I could pick the prescription up on the 4th or any time after since I was having to take more of them once or twice a week due to extreme stress, flashbacks, and anxiety that feels like I’m dying, that I had been taking only half strength dosage for almost a week because it was a full seven days since it was supposed to be filled according to my prescription. I whined pathetically that I had come in on Saturday and asked them to call the doctor on Monday and make sure that she changed the instructions on the prescription, and no one had done it yet, but he wasn’t even working on Saturday so it wasn’t his fault at all. I yelled a little that the insurance company couldn’t deny my ability to pay out of pocket to pick up a drug I had been legitimately prescribed extra of so that the extra I had already taken (with psychiatrist approval) would not put me short this month. I pleaded that I needed them, instead of asking him if there was anything he could think of that I should do to fix the problem. So instead of being an adult and taking care of the mess with my insurance and psychiatrist by myself, I let the compassionate and extremely helpful pharmacist do all the work. Somehow, magically, in just an hour and a half, Marc fixed everything. When he called me, I had composed myself and was polite and apologetic, but I still felt terrible.
As I thanked him over the phone, I was staring at some red and white stylized snowflake christmas cards that I wasn’t even planning on using this year, and my hand was reaching out to snatch them off the table the second the call ended. I knew I had to thank him in real, concrete words for saving the day by getting me a medicine I depend on to keep my anxiety from spiking through the roof twenty or thirty times a day. Usually I struggle greatly with cards, thank you cards especially, but this time I could barely fit my gratitude on the inside of the card. And when I brought it in, I did not even get to give it to him directly. The reason being that of course he made about ten more phone calls to speak to doctors and insurance companies so other people could get their medicines in the span of time I was in line. People like Marc make dealing with a chronic illness much less terrifying. I just hope my puny little card was some kind of reassurance for him that his compassion and work ethic do not go wasted or unappreciated.
Then the power went out last night, right after the sun went fully down, and the dark is very very dark when you have absolutely no moonlight, no streetlights, howling wind and hurtling tree branches. The young teenage girls across the street came running and screaming up to our door, barefoot in the storm, eyes all huge. They talked over each other that their mom and her boyfriend were at the store about ten minutes away, and that they didn’t have any light, that they were terrified, that their rottweiler was terrified and they had to carry her inside somehow, they they hadn’t ever dealt with anything like this before. We were in the process of trying to find our own lights, so I invited them inside with me and the one light we did have that was easy to find. Eventually my boyfriend dug out the rest of the lights from the camping gear, and we handed out lights and went with them back to their house to find a battery operated lantern and candles in their garage. I have never heard two people so pissed off that the internet was down. Wow. Haha. All that attitude about the online games they couldn’t play and they were afraid to go around any corner in that dark house without one of us right next to them, even with the lantern! We stayed for a half hour or so until mom and boyfriend got through the checkout line, then went to go find our own candle stash and get fast food because cooking wasn’t an option. I’m not proud of the fast food ending, but I am happy that we were there to help out while mom wasn’t home.
Today we woke up and another neighbor had lost huge chunks of roofing and soaked plywood was exposed all along the top of his roof, which surprised me, the roof was newer than all the rest of the houses and no one else lost a single shingle. Anyway, they didn’t notice, and we realized they hadn’t noticed when the forecast started to predict more rain and there was no sign of a tarp or any indication of trying to keep the house from leaking all over the place. We did the neighborly thing and broke the bad news to them with plenty of hours of light and time before the rain hit.
Three random acts of kindness I wasn’t expecting to happen, but I am not prone to just letting people suffer for no reason. When it comes down to it, those situations will always bring out the best in me, and they will always sustain me for longer than the spoons I expend on the random acts of kindness.
So the secret, which isn’t really a secret at all, is that the more of myself I give to others, in return the energy of being helpful will sustain me far longer than my spoons would normally last.
My passion is being needed by others, and I thought that was dead when I got sick. Logic dictated that I give up that part of my life as well. I stopped being that ever-present friend, I stopped returning every bid for attention and drama that was directed at me. I learned to distance myself from all of the things that seemed to drain my energy and in my brain, that would of course include doing things for others when I can’t do things for myself. Not true! I had completely misjudged myself on this area of chronic illness. I can still reach out, I can still be involved, and most of all I can be loving and kind and responsive when for some the world is none of those things.
Chronic pain is almost inevitably isolating in the beginning. Yet, if you come to a place where you can navigate through illness with extra kindness and respect for others, it may also provide a gateway to other possibilities, other avenues in life that were only a vague, wispy haze. My car accident changed my life, certainly, but despite severe and disabling fatigue, pain, cognitive dysfunction, anxiety, plus a long list of other issues, I still care deeply about my friends. I still care about their relationship woes and work stories and successes in school. I will always care. I know that often people think I don’t have energy or time to comfort them in their dark hours or that I will be unable to muster up joy for them in their success. That is simply not true. I can find the greatest joy now in sharing in the happiness of others, and I often feel the greatest depth of sadness for the losses my friends experience.
While I was writing this a friend came over to talk and we found out that he had just been through a deeply saddening breakup. He is someone I admire, and to hear that his partner of several years had “fallen out of love” made me question love itself for a minute. If someone can fall out of love with this awesome guy who was the first person to introduce me to reframing my thoughts in a more constructive way, then what was love all about anyways. This friend is a wonderful, caring person who I met while I was in a dark place.
When we first talked, I was initially so confused by his relentless need to spin my angry thoughts into positives. I even thought he was just minimizing my pain and anger so he didn’t have to deal with it, but over time I realized how valuable it is to hear in action what a positive thought sounds like, especially when my self-talk had been unshakably negative for such a long time. Now of course I can see that he was doing the opposite of ignoring my pain, he was teaching me coping tools, every time I saw him for a year straight I learned something. It takes a special kind of person to care that much that you are willing to say the unpopular thing because it is the right thing to do. His ex will realize what a fool he is for not including our friend in his life path.
I can’t usually make my friends’ pain, emotional or otherwise, disappear, but I remember how much it sometimes helps to be held, and fibro flare up or no, I’m all about powerful hugs and can put up with the pain of a real hug for a friend in need, any time. It’s so worth it to be there for someone and to reflect maybe a little of that positivity they have been shining on my life back at them for a minute. I will not ever give up on expending that energy, no matter how severe the fatigue or the pain get. Not a one of the unexpected acts of kindness that I was allowed to perform this week made my body rebel any worse in the long run, and my heart feels fuller that it has in a long time.
I hope every time that I am presented with the option to be caring and loving, I am able to take that opportunity and be a shoulder for someone to cry on, a hand to rub their back, and a voice to tell them how important they are to others. Or the lantern-finder in a power outage, the overflowing gratitude scrawled across the inside of a thank you card, and the knock on the door that alerts our neighbors to a problem before it becomes a disaster.
There is so much to be gained spiritually from not taking the easy way out, that it often cancels out the amount of energy the more difficult path requires from you, and can even renew you. That is math that I can understand, for once! So even if you think you’re way too tired to go out of your way for someone else, I encourage you to look for every opportunity, small and large, to prove that theory wrong. When you brighten the lives of those around you, some of that light is always reflected back at your own beautiful soul. Nurturing someone else also means nurturing a part of yourself that believes in love, joy, and passion. It’s never a bad decision to be there emotionally for a friend, and remember, even a stranger’s day could be changed completely by a random act of kindness!
<3, good vibes and low pain days to everyone
Throughout all of this blogging experience I realize I have made a mistake. I often write as though my body is this weak thing that never gets off the couch and that I never use like I used to. While it’s true that almost every day is a series of compromises compared to my old life where I never stopped for a minute, there is still actually very little time in my life for rest. I am trying to make more. I am trying to encourage others to make more room in their lives for real, relaxed rest. But I know how hard/impossible that is with people who depend on you.
My body is not frail and weak, not by design any way. In my past life, I used my body every day for real, repetitive physical work, and then I came home and worked in the garden and on fixing up our home. I find it hard to give up those habits of the past me. The problem I see with continuing on like I am, without ever learning how to put my rest first, is that I know people with fibro who work full time and have continued to work without stopping since their diagnosis, and I see those friends take handfuls of pills now to keep on their feet, and they are miserable every second of it. None of them have improved by relentlessly pushing through the pain. They seem to regard their bodies with pure hatred, and I feel so bad for their struggles. Not to say I do not know some successful working friends with fibromyalgia, but those who are successful have learned to adapt, change, flex, and yes, compromise. They are not attempting to live the exact same life as before their illness hit.
There is acceptance before there is success, with a chronic illness. Acceptance does not mean giving up, it means finding another way forward. I am trying to find that way, but I don’t know where to look.
The other aspect I must find is balance. From past experience, the less I move, the more I hurt the next morning. However, too much movement can also send me into a horrible flare up. Other times, it’s just the tiniest sneeze or attempt to tie my shoe that send me into a downward spiral of pain and nausea and anxiety. I cannot seem to figure it all out. The longer I sleep, the more I hurt the next morning. If I don’t sleep enough I hurt more too. On and on like that, until it becomes more evident than ever before that having fibromyalgia and ME means I live a life balanced on the blade of a razor. One wrong move sends me plummeting into an abyss. The climb back out of which is terribly arduous and depressing and takes everything I have, every single time.
Until I can learn to stop falling (with the understanding that it will get better but never stop completely) the best I can do is to become better at getting back up again. The falls are inevitable, really. My ability to stand back up, to keep fighting, is all that keeps me from staying at the bottom of the abyss.
This determination to keep going, it demonstrates beyond a shadow of a doubt that my body is not weak. It is fighting. I am fighting. FMS/ME can’t take everything from me.
I will keep pushing myself. And I will keep doing more and more physical activity despite the pain, but I will not pretend that I do not have these illnesses. Not to myself and not to anyone else.
I am not weak, I am still always on my feet, never napping, never stopping for too long. There are those days when I do feel weak, but it is temporary. And I am thankful for my still-strong, still active body. Though I am mostly housebound and cannot figure out driving or working with all my meds and issues, I do not sit in one place with my heating pad more than once a week, except at the very end of the night, in bed. I do not lounge on the couch, I do not lay down in bed. If I need to lay down, it’s usually the floor that I end up on, because I’ve pushed myself that far and suddenly I am done moving, and even crawling is a challenge then. Some days pass me by and I feel like I have barely even participated in them at all, and sometimes I have nothing to show for myself, no matter how many time I paced back and forth, doubled over in pain every few minutes, trying to remember to do a task that has slipped my mind, yet again. But wallowing in bed is not in the script. If it gets that severe, I will know, my body will force me into bed, but it is not there yet and I will fight with everything I have to stay on my feet even if I get nothing done, even if the pain has me by the throat and chest, and I stare off into space and create jumbled garbage when I sit down to write and paint, even if I doze off in my chair for a few minutes at noon, and snap out of it by using the pain of doing the dishes to wake me up. It’s war. Whatever means necessary, you know?
This is life, fighting a long battle with a group of cruel illnesses who are using my body as their host. Tonight, after I have spent all day floating in a strange haze, I cannot be angry at myself for doing my best today despite the severe brain fog that plagued my every heavy step. The laundry is somehow done, and I managed to take a shower for the first time in four days, which feels like absolute heaven. I am snuggled up in a long sleeve waffle knit, two layered zip up hoodies, leggings, loose pajama bottoms and two pairs of soft cushy socks. Yes, it’s coooooold here!
Being cozy despite not being able to get comfortable, I have to reflect that many are not warm inside this winter, and I am so lucky to be here in this house wearing all these soft clothes, clean and dry. Suddenly my world is brighter and kinder, and I am transported out of the pain of my body and into my surroundings, able to participate again for a brief time, and thankful for every second of it!
If it is a particularly painful or fatigued day. I will allow my body to dictate some of the events of the day, but not all of them. It is enough that I keep trying to find my way, right now. As long as I do not give up, then this is learning, and it is messy and unpleasant and even at times thrilling. There are things my body can still do that would not have seemed possible a year ago. But there is also the agony of steadily increasing pain over time, the horrible fear that my strength and toughness will be outstripped by my worsening illnesses someday. I cannot get rid of the fear completely, but I can choose to not let it take me hostage. Who cares what tomorrow brings, because there is no controlling that. However, I do have control over my reactions, and that is enough to get from here to a better place, in time.
I can choose to live, right here and right now, no matter what is happening with my body. There is so much power in that.
Being grateful is my new go-to emotion.
If I’m feeling numb or distant or like I want to spiral down and down, I pick out one thing I can still do, one personality trait I am grateful for, and one thing that happened that day to be thankful for. Sometimes I just write the answers over and over again until they carry the meaning they need.
Of all the surprising benefits of being grateful, the one that strikes me right now is that it actually makes it easier to feel like I have all the reassurances I need, so I do not need to seek them from other people.
I only figured out in the last year what it means to truly find good in everything, and to make that spirit of thankfulness a priority. I was so ready for a change internally that when the gratitude that people had been telling me about for so long finally sank in, it became a part of my daily life almost immediately and with not nearly as much effort as I thought. Looking back, I started small and worked my way up to being able to write a list of positive affirmations almost every day. Writing those lists has been an incredible experience in the last three months. Now when I feel lost, I can look at the page after page of lined notebook paper and find myself again.
If you are fighting a battle with a chronic condition or chronic pain I especially hope you have the power of gratitude on your side, maybe not right now, but in the future at least. It doesn’t take my pain away, but it is almost like a blanket that keeps me warm no matter how cold the winds in my life are blowing (it’s freezing here, lol).
Easy is absolutely nowhere to be found in my new post-illness life, although people on the outside looking in must think I am lazy and everything is handed to me while I sit back in comfort and make demands on everyone around me, that simply is not the truth. In all this craziness, gratitude helps, that’s for sure. My life isn’t easy, I just make the best of it. Hard to prove, though!
Fortunately, all that matter is that I know how much grueling, non-stop work is going on even on those all-important rest days when I seem my laziest to the casual observer. Among the changes fostered in me when I adopted gratitude into my outlook, it’s finally getting easier not to care what people think. I have always been so self-conscious that by age 10, even sitting with my family in a restaurant, I was sure I was so hideous that everyone must be laughing at me, and every “her” I heard, I was sure it was me being discussed in all my disgusting glory (my self esteem was not the greatest, as a kid), so gaining some ground there is awesome, to say the least.
Apparently when everything else falls apart, we get time to explore ourselves, and pull all the good things we have buried back up to the surface again.
It honestly feels like all this soul-searching could be the most important thing I do for myself in my entire life. I am grateful for the chance to pursue it.
Even in between flare ups I can only do one thing. One thing before I have to lay down. Sometime just one thing the entire day. I cannot shower AND leave the house on the same day. I cannot do light work in the vegetable garden AND make dinner in the same day.
In fact, any one thing I do choose to focus on could be the last all week, if I hurt myself!
So how do you pick which task gets your attention?
Before chronic illness I would make a list, and I did all the hardest chores as fast as I could. No matter how awful I felt. Powering through and forcing myself to do everything that everyone around me “needed” was my way of life. I swore by that.
As I developed more and more symptoms, inevitably that behavior translated into trying to ignore my pain and push on. I was in much more pain, cognitive issues were becoming a daily and noticeable problem, I was having much more severe flare ups, I was always anxious and I was even having suicidal thoughts for the first time since high school.
Now, three years in, I finally understand that overdoing it is a ticket to my own personal hell, and I don’t have to buy that ticket.
Only I can know what overdoing it means, and I am the only one who can give myself permission to take a break, change tasks, or stop altogether. Of course, real life gets overwhelming and self care can fall to the wayside during a crisis, but the important part is that this is a habit that is sticking. And I am learning gratitude as a result. In between flare ups, I am capable of doing one thing. That is something to be be grateful for.
I am learning that it doesn’t have to be frustrating picking where my energy goes. It can be freeing, too. I am acknowledging my limits and despite the chaos that causes and the emotions it brings up, I have faith that my life will ultimately be better as a result. I can focus on the good that is left, rather than what I miss. It’s a process, I still have days of utter and complete depression in the midst of a long flare up, and I don’t feel like there’s anything wrong with that. Thanks to chronic illness my life will be full of ups and downs that are much more dramatic than before I got sick.
Post-chronic-illness, I am sorting through the wreckage for the potential in me, the things that I value about myself even when my body is not as strong as it was. Being able to do one thing, even if it is sleep and recover all day, is a gift that I am finally willing to accept.
What I am Grateful for Today:
Chronic illness is a battle, a burden every day, but it gives us a unique perspective on life. I feel like most spoonies I meet, whether online or in person, have the important things figured out (but we rarely feel like we do!). Those with chronic pain and illnesses have had to pare down their lives to the bare necessities for survival. We are skilled at finding the silver lining in almost every kind of adverse situation. We do not fret the small stuff; we are tough. These are just a few of the truths that I am incredibly grateful for.
Most of all, I’m grateful for all of the wonderful #spoonie support that happens every second, both online and in our communities. Where would we be without each other?
Click the badge below to head over the site and get started expressing gratitude through photos!
There is something trance-like about scrolling through the #CapturingGratitude wall, and I hope more people join the revolution immediately! The idea is to post pictures of anything you are grateful for, easy as that. Setting up an account takes two minutes, and then you’re ready to upload pictures of everything that lights up your life. It’s like public meditation, and it helps me focus on all the little moments in life which I need to consciously recognize and appreciate.