• Lillian China Smith

Missing Out Because Of Chronic Illness

by Lillian China Smith

Sometimes, I get in the elevator with someone, with a woman who is really nicely dressed. One who clearly had time to put herself together, and looks great. And I think to myself, I wish I could do that for myself all the time. I wear sweat pants, nearly every day. I have a wide variety of black sweat pants. I still make a big effort, don’t get me wrong. I love each and every pair of my sweatpants. I also try to put on make-up, every day. This matters, because on the days when I can’t, I just can’t. Every day, I also try to do my hair. I try my best to look nice. I put on a nice top with my sweatpants. My life is so busy that I don’t have left over energy to doll myself up like I used to.

Girls like that in the elevator remind me of something that I can’t do. It reminds me that jeans, they can at times hurt my knees. It reminds me that I can’t wear high heels because of my knees. I wear them occasionally, and for small periods. Maybe this will change with time. It doesn’t really bother me, as I have learned to love flats and have a wide variety of them. But occasions like this one, with this woman. They remind me that I use dry shampoo all of the time. They remind me that I don’t work out as often as I would like. They remind me that I mostly wear, black sweatpants. Even though, I prefer them now, because they are comfier, and who cares. I have learned to style them the way I like them. I have figured out an “illness wardrobe” that works for me.

And I don’t actually look bad. I do make a big effort. So I shouldn’t feel bad. Making an effort, is actually a big part of my routine, because I like to feel like I still look nice even though I am sick. Then, on days, when I really can’t make an effort, I just can’t. But, I can only do so much on a daily basis, now that I am sick. No matter how well I function, there will always be periods where I am limited to some degree, due to my illnesses. This is always hard to accept. I think I re-accept that fact on a daily basis. I am confronted with it on a daily basis, like in the elevator, when I see someone, who can do so much more than I can, even in the smallest of ways. And when I see my friends, in their careers, doing what I used to do, who went on and carried on doing what I used to do, and have gone further, and achieved so much, and then there is me, who had to figure it out all over again and find my way in a new career. It reminds me that, if I hadn’t gotten sick, I wouldn’t have missed out on so much.

In my twenties, I missed out on a lot due to my illness. When I tell my husband, and he tells me about his twenties, he had a very different experience than I did. Not one that was filled with doctors, and chemo and canes. Though I had a great time still, mine was a chronic illness experience. And at the time, when I was experiencing it, I indeed felt like I was missing out, and it was painful to feel it. To see my peers live their full, normal lives, while I was limited by my illness. Or stuck at home, and not able to do as much, due to my disease. My best girlfriend would come over and tell me all about her one night stands. This was early on, in the first few years after my diagnosis. I would sit there, jealous, that I couldn’t go out and live a young twenty-something life too. I would see girls my age, twenty four or twenty five, walk past me on the sidewalk, while I had my walker, or my two canes. I was jealous that I couldn’t be just like they were. I had to go for bloodwork every two weeks for my methotrexate. I saw my doctor more than I saw boys. I had dropped out of University due to Lupus. Going back had been such a challenge. The stress of having Lupus brought on mental health challenges. A year or so later, I had a Bipolar episode. Going back to University after my episode was a challenge too. I remember sitting in the classroom and balancing the lecture while hearing voices. Eventually, I got better, but it all took time.

All of my illnesses have impacted me in some way and have made me want to feel normal. Not only normal, but that I have missed out. Missed out on small things, big things. Things that I used to do, and now cannot. They have always made me feel that way throughout my life. It has been a struggle for me to overcome this feeling, and to accept myself as I am with my illnesses. To accept that I am just like that girl in the elevator. That I am just as good as her, even though I have limitations.

And to see, the real fact, that I do so much more than her, probably, on a daily basis. That I try harder than her, to get through the day. And that I have to try twice as hard to do just as much, every day. That because of this, I am stronger than her. It takes me twice as much energy to do any small task. I have to manage much more than her, just to go about living a normal, functioning life. I have to cope with much more, just to get through the day. Day to day, to get through the day, hour to hour, I have to manage my pain, and my health, to be present for my family. I have to manage pharmacies, and doctors, and symptoms. And even though I do it in sweatpants, not high heels, doesn’t make me any less than her at all. I shouldn’t go about judging people in elevators, either, because I don’t know what her life is like. But I know what it is like to feel like you are missing out on being “one of those girls” when you have a chronic illness. One of the “normal people.” And ever since I was diagnosed, I wished I could turn back the clock and be “one of those girls” who didn’t have one. And to me, the girl in the elevator represents that.

Being married, and a parent, has made me struggle with the feeling of missing out too. I wonder if my family will feel they are missing out because I am chronically ill and can’t provide them with more. I wonder if my husband will ever feel he is missing out. But this is my own feeling, not his. He loves me for who I am, and supports me endlessly in my battle with my illness. When he has a hard time with it, it is because it can be hard to cope with at times, not because he doesn’t want to cope with it anymore, or because he feels he is missing out. I don’t think my son will ever think he is missing out on me as a mother because of my illness. I can provide love in unique ways that I have learned as someone who only an illness can. I am a deeper, more thoughtful person because I have experienced illness. Therefore, I can be a caring, more thoughtful mother, and even if I can’t always be physically present in ways that being a parent may require, I will be a loving mother to my son when he needs it. He will know that he is loved. That is what is important at the end of the day, how much you love your child, and how much they know you love them.

Sometimes I feel like I am missing out on things I have always wanted to do. On opportunities that have passed me by because I was too sick to take them. I have missed out on getting my Masters. I was accepted to a wonderful school, after working very hard to go there, and then had to leave due to my illness. I have also missed out on lots of opportunities, great ones, that I was offered, and that I had to pass up, because I was ill. I was asked to be in a feature issue of a magazine. I was too ill to do the interview. I have been asked to speak at places many times, and on many occasions was too ill to do it. A lot of these great opportunities came and went. Years went by, and I felt like my life was frozen. I had to wait many years to start rebuilding my life. Feeling like I was missing out on things because of my illness was a terrible feeling. I hated my body for taking so much away from me, for limiting me, for holding me back, for preventing me from becoming who I wanted to be. I always thought, “where would I be if it wasn’t for this.” “Where would I be if it wasn’t for Lupus.”

Everybody with a chronic illness struggles with the feeling of missing out. With wanting to be normal. I think, at some point, almost every day, I struggle with feeling like I am missing out, or wish, that I could be a bit more normal, even though, I have, now, many many years later, reached a level of acceptance with my illnesses, and live a what I like to call a full life. You may read this and think, “well, you can’t be living in acceptance then if you still feel you are missing out.”

But to me, I don’t think anyone ever really accepts a chronic illness. This is because you are faced with it every day. You are faced, every day with the struggle with it, with the pain, and with the limitations it brings you. Being faced with it every day, you have to learn to accept it all over again. It is not something you accept once, and then have accepted it forever. I learn to accept each chronic illness that I have each time it flares up, each time it causes me pain. Each bipolar episode I have had, I have had to accept my diagnosis all over again. Each seizure I have, has caused me pain, and re-acceptance. Each time I have a Lupus flare, I go through a period of pain and acceptance, and struggle. Chronic illness is a period of struggle, and acceptance, over and over again. It is never a one-time thing. Each time it causes my family suffering. Each time it impacts my life or flares up, and then goes into remission, and comes back again, I am hurt, and have to cope with it and learn how to face it again. This brings up the feelings that I once had, no matter how many years it has been. The feelings have lessened with time, certainly, and I am not as angry as I was at day one. I don’t hate my body as much as I did for being sick as back then when I was first diagnosed. I am not as angry about missing out, now, as I was then. But, sometimes, it surfaces, and I acknowledge the feelings, and move on with my life.

It surfaces each time I see a girl like that in the elevator, no matter how well dressed I am, I am reminded of what I cannot do, and I am reminded, perhaps of who I could have been, no matter how well I have been doing lately with my own level of acceptance of my illnesses. Then I go about my day, because I know my day is busy, and I am great, regardless of what limitations I have. But these thoughts, can at times be a daily process for me.

I truly believe, that these thoughts are not just for me but for everyone with chronic illness. Not a day goes by that I don’t wonder about some factor of these things. My past self, the pre-disease self, will always be somewhere inside me. I will never forget her. I am beginning to forget, though, what it felt like to live without a disease, the corporeal sense of it, but not the memories of the freedom that it comes with.

In some ways, I am still her, but living a different life now, a better one, one that I had not planned for but that worked out in the end. Some days, it feels like that person is living a life where I am trapped inside a body that I don’t like. And some days, I don’t care, some days, I am happy as can be. Some days, I look at my life and cannot believe that it is mine. The day I got diagnosed with Lupus, if you had told me this would be my life, I would not have believed you. That my life would become this beautiful thing is a dream to me. Sometimes I sit outside with my husband on the patio, and we have a cigarette, and chat about our day. And we laugh with each other about silly things, and he smiles at me, and we have a Diet Coke. And I look at him and think, how lucky I am.

“Everything will be all right in the end. If it’s not all right, it’s not the end.”

#butyoudontlooksick #spoonie #lupuswarrior #fibromyalgia #flareday #chronicillnessawareness #chronicpain #lupus #chronicfatiguesyndrome #lupusflare #rheumatoidarthritis #fibroflare #sweatpantslife #chronicillness #lupuslife #spoonielife #chronicillnesswarrior #flares #themighty #spoontheory #chronicdisease #chronicfatigue

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  • Lillian China Smith

Coping With The (Very) Bad Days By Lillian China Smith

The worst thing is a very bad day. The worst thing is being in bed, covered in heating pads, and crying in pain. The worst thing is feeling like, why does my husband have to see me like this, balled up, crying, with my hands swollen, body stiff, immobile, frozen. Why do I have to be like this sometimes, I feel, in those moments. And he comes over to me, and says, “It’s okay, we are married, it doesn’t matter, it’s okay,” and he gently runs his hands down my shoulder, over my arms, and asks me where it hurts. Then he will come to lie beside me and asks what more he can do. And in this process he will always, always, bump into me, by accident, which makes me laugh, because he doesn’t mean to, but it hurts. I call him ‘Great Dane’ because of this. He is like a giant bull in a tea shop sometimes. He is just so big and clumsy, but he can’t help it. He always makes me laugh when I am crying.

After my husband has bumped into me, and I am lying there, he asks me again what he can do. I know that there is not much he can do to help, but whatever he can do, he does. On a very bad day, it feels sometimes that there are few things that anyone can do to help, and that nothing will work. Sometimes it feels like you try everything, one thing after another, with very little relief for pain or help from your symptoms. And it can be hard for your caregiver or partner to watch this, too. My husband gets my Voltaren, he brings me my pills. He cuts my food for me. He opens the Voltaren. He opens my pills. He cuts them in half. He runs the baths. He helps me in and out of the bath. These are bad days, the worst days, the ones where I wish that I was someone else, someone who wasn’t sick, and I don’t think I’m alone in thinking those thoughts on bad days. Even though I have a beautiful life that I love. When I’m in pain, I wish I could have a life that is pain free.

Sometimes, I close my eyes, and think about what it would be like to be someone else. I have my own version of this, what my husband and I call The Woman In Minnesota. I’m not sure where I got the idea of Minnesota from. I guess because I met someone from Minnesota once, and maybe they had an impression on me, some girl I met on my trip to Greece when I was young and in University. That girl, she was from a dairy farm, and it seemed like her life was almost entirely perfect. It could have been that, I’m not sure. I have also been to Minnesota, and the people there are just so very nice, all of them. So I guess somehow, I got this idea, of a woman in Minnesota, who has a perfect life. And when I feel ill, I now have this imaginary person, someone who lives in Minnesota, and this Minnesota woman, who is my representation of what it must be like to be normal, this lady lives a great and normal life. When I am in pain sometimes, I close my eyes, and I think of the Minnesota woman. I think, I wish I was from Minnesota. It is a completely irrational train of thought, I know. But to me, this Minnesota woman, she is beautiful, and bakes pies, and she is married to the prom king. She doesn’t have pain, and she has like four kids. She has lots of energy for her children, and for her husband. They live in a nice house, and she doesn’t have any health problems. She has the energy to always get dressed properly. And when I am in pain, and I can’t get up to do the things I want to do, or grip my cane properly, I roll over and I close my eyes, and sometimes I think about this imaginary woman in Minnesota. I think what it would be like to be that woman, even though she isn’t real. And on bad days, I think, I wish I was somewhere in Minnesota, living that life. I think, I wish I wasn’t in pain right now. I wish I had the energy to do all the things that the Minnesota woman does. A normal person, like the Minnesota woman.

And I have told my husband about the Minnesota woman. One day, I was in pain, and I explained it to him. We were sitting in the kitchen, he was cooking, and I was sitting in pain at the kitchen table. I was hesitant to tell him about it, because I know it’s kind of a weird thing, but it helps me when I’m in pain, so I just kind of went ahead and said it. I said, I wish I was like a woman in Minnesota. He said, “What do you mean?” and I said, “Well, I imagine that out there is some normal woman, who is healthy, who bakes pies for her husband, and has four kids, and lives a perfectly great life, and sometimes, I wonder what that is like.” And my husband, “She bakes pies does she?” and I laughed. I said “Yes, well, I bet there is someone who bakes pies, who is healthy and bakes pies, at least that’s how I think about it.” And we laughed. And he laughed. He asked me more about this imaginary Minnesota woman. He teased me a bit, and then we moved into the living room to have dinner. We were sitting on the couch together, the grey couch, with the TV on low, because the baby was asleep. When I was all finished with telling him about the Minnesota fantasy, he somehow just came out and told me that he knew a girl once from Minnesota, and that they weren’t all that great. I asked how he knew. Then, he said that he had slept with a woman from Minnesota. I was taken aback. My mouth fell open. I tried to be totally cool about it, and just kind of have a wifely nonchalance in the moment as he told me about this woman from his past. I wonder if she was blonde, I thought. I mean, I know he has slept with more people than I have. He is older, after all. But I wasn’t sure what to say. Should I ask more? Should I ask what she looked like? How it went? Was she good in bed? I was stunned. He actually slept with a Minnesota woman? It’s interesting hearing his old stories. I tried to be casual for a moment, kind of tossing my hair back. “Oh ya? Really. Wow.” I said. “A Minnesota girl?” I did a kind of like trying to be non-awkward chuckle, still full of surprise. “Well, I guess I’ll have to hear that story sometime!” But he just kind of said it, he just said “They aren’t all that great.” And then it led to a whole other conversation, about tractors, and late night emails, something that had spun far from what had originally to do with his I suppose sexual proclivities with a Minnesota woman, and I stopped with the questioning at that point. But, a Minnesota woman, of all people. He is always full of surprises. I guess that is why I love him, he is the only man who I know that I will never get bored of, because he is full of surprises, all the time. And he always finds a way to fix things.

In spite of this hilarious conversation and finding out that my husband had an interaction of sorts (I never found out the details) with a Minnesota woman, I still, sometimes, wish I was from Minnesota. But I don’t actually wish I was from Minnesota. I have no idea what being from Minnesota is like. I bet there are lots of people with Chronic Illness in Minnesota, and I bet that Minnesotans don’t have the stronghold on what I miss or wish to be a sense of health and normality either. I have been there once, to the Mayo Clinic, and it was really cold. I don’t think I’d like living there. I think what I really wish when I close my eyes in pain is that I want to be normal, without an illness, right in that exact moment, when my eyes are closed in pain, when my hands are tight, and it hurts, and for the pain to go away. But I can’t make that happen. I can’t wish myself to be someone else either. I can’t wish myself to be someone else with more energy, or to be someone who has more energy for my family, or to be someone who won’t have chronic illness, like this imaginary woman I dreamed up who is from Minnesota, though when I close my eyes, no matter how silly it is, it does make me feel better when I am in pain.

On bad days, I always have my moments where I find myself feeling down, or wishing I could take away my condition, or be at least, if not that, better than I am, sometimes, no matter how much better I have gotten, or how much progress I have made with my disease, I still find myself feeling that way, feeling that I could take away my disease for a day, and just be normal so that I wouldn’t have to suffer that day or that moment. That is because it is hard. It is important to acknowledge that. Chronic Illness is hard. Pain pushes you to your limits. And being in pain day after day, especially during flares, can be so difficult to cope with. Pain can go away for an hour and then it comes back. And then you have to deal with it all over again. Sometimes I can’t write. Sometimes I can’t use my phone. Sometimes I can’t open the Voltaren. Sometimes I can’t squeeze the Voltaren. Sometimes I get out of the bathtub and lie on the floor waiting to have the strength to get up again. And it is not, sometimes, so much the pain, as it is the mental process that this is something I have to face, and that it will not go away. The worst thing is not being able to get out of bed or open my pill bottles, or cut a pill in half, or to not have the energy to wash myself, or get in and out of the bath, because I can’t bend my knees. The worst thing is that I sit down, after I get out of the bath, to rest before I get back up again, because I’m in pain, even though the bath helped. And then I stand back up again, put on Voltaren, and lie back down and do the routine all over again. That is the worst day for me.

During these days, I lie, there, and on the days when I have bad thoughts, I think to myself things like: I hate this, Why does this have to happen, This is so unfair, this is my life, I wish I was normal, Why does this have to happen to me. I wish people understood what this feels like. I wish the pain would stop.

The other day, I ended up in particularly bad pain after a full day and taking my son to the park and pushing him on the swings. I lay there, thinking, Why does my body have to pay for activities. Why do I have to lie here like this suffering just for taking my son to the park. Some mum’s just do that, regularly. Why am I like this.

I mention these things that I say to myself because I think every person with chronic illness has some list of things that they say to themselves on bad days. It would be impossible, I believe, to get through a hard day (the worst of days) without some kind of frustrated thought. These are just some of mine, off the top of my head, recorded the other day when I had a bad day. Some days, I am in too much pain to think bad thoughts. Some days I just lie there and hope the pain will end.

I have learned, that though I can entertain these thoughts for several minutes, it does not help me to think them forever. When I was first ill, I would like there in pain, angry, and thinking thoughts like these forever. Now I know that it won’t help me to do so. On bad days, it does not help me to lie in bed and ruminate on how miserable I am about being in pain. I allow myself to be upset, or cry, and then I have to move on, and distract myself, because being down and depressed, all the time, about what is going on, will only make it worse. It is a vicious cycle. Sometimes I will cry, because it sucks. Either because it sucks, or because of the pain, or because of both, or because of the total weight of it all. And then I will stop, and pull myself out of it. I don’t think about it forever, if I can help it. I will focus my attention elsewhere, or speak to friends, or my husband, or take another hot bath, or try to spend time with the baby, or just tell myself that eventually, the day will end, and tomorrow is a new day. But I allow myself that minute of suffering, and to let it out, because, it is hard, and I am suffering. I am kind to myself in that moment of suffering too, meaning, that I treat myself with compassion because I know that I am going through a hard time. I try not to speak negatively to myself, or beat up on my body for being ill anymore. I used to do that a lot when I first got ill. I hated my body for being sick. Now, even if I have thoughts of wanting to be normal sometimes, which, I think everyone does, I try not to beat up on myself for being sick when I am feeling unwell, I try not to beat up on myself for not doing as much as I wanted to that day, or for missing out on activities, or for being stuck in bed. I try to recognize all the things that I do do, and the person that I am. I try to love myself, and treat myself with kindness, especially when I am having a hard time or feel unwell. If I need to cry, I do, and then I allow the feelings to pass.

I use Self Compassion Meditations a lot. They are guided meditations that give self-affirmations of compassion and self-love. I find them to be really soothing and calming. They come in short increments of five minute meditations, and longer meditations of fifteen or twenty minute meditations, depending on your fancy. Each carries a different message. I will provide links at the back of the book to good websites where you can find the meditations. Self-Compassion meditations are great for this purpose and for providing ways to give yourself some love and affirmation when you are feeling particularly upset or down on a hard day.

Sometimes, when I am in a lot of pain, I close my eyes and say to myself quietly, “You Are Strong. You Are Brave, You are Strong, You Are Brave.” This is a variety of a self-compassion meditation, by giving yourself re-affirming thoughts that help you get through the moment. You can say anything to yourself in that moment that helps you get through that moment. Saying re-affirming phrases really helps me when I feel beaten by pain. It reminds me that I have gotten through it before and that I can get through it this time, too.

This is hard to do when you are in so much pain. It is hard not to be angry, and upset or to feel down about it. But take good care of yourself that day. The pain will pass. It doesn’t make the pain any less painful, I know, I really do. Self-compassion and being kind to yourself is an important part of taking good care of your mental health during times when you are feeling unwell. Allow yourself a mental health break because it is hard on the mind being in pain. Watch your favourite movies over and over. Call or text with a friend if you can. That always brightens my day. Most of the time I don’t have the energy for long calls when I am really sick, but texts here and there can really make my day.

“All storms run out of rain” my mom always says. She used to say it to me a lot and, at the time, I thought it was dumb. But now I really hold onto that phrase in my dark moments. It helps give me strength. There are good and bad days. Especially for us with Chronic Illness. It doesn’t make it any less upsetting to get through it when it happens, but knowing that it will pass, for me does.

On hard days, sometimes I use online support tools. I do this because on hard days I feel particularly alone with my disease. Even though my husband is beyond supportive, I know that he doesn’t know what it feels like to have Lupus, or to be in pain like I am. And I could never explain it to him. Though he has watched me for years, he would never know unless he has gone through it. There are Lupus support groups available on and offline. When I am having a hard day, I go on the forums or the online support groups if I have any questions or need extra support. My local Lupus Organization has an online support group. There are also immediate access forums that you can use to answer questions that you have about Lupus, many of them, and chances are that many people have asked similar questions before so you can spend time reading the answers to their questions. I had a question once about coping with pain. There were lots of answers to that one. Sometimes it helps just reading answers from people who are going through the same thing that you are. Even if you aren’t speaking to them in person. Offline support groups take place all over and throughout the province where I live. They are run by local Lupus Organizations. Lupus Ontario runs many support groups. They are usually once a month. You can sign up for emails and be on the support group email list.

Sometimes, there feels like nothing that there is you can do to cope on hard days, and you just have to wait for them to end. Sometimes, the best thing that you can do is to go to bed. It can be frustrating to just go to bed. To be stuck in bed. I find it incredibly frustrating to be in bed, for even one day, let alone weeks on end. I lose my mind doing that. I hate being left out, knowing my family is going about their business, while I am lying in bed in pain, and trying to cope with it as best I can on my own. Sometimes, at the end of a hard day, while I am lying in bed, I eat my favourite food to try make myself feed better. I eat Annie’s Macaroni and Cheese with extra cheese. (My husband bought extra powdered cheese off Amazon so that I could add it to my macaroni and cheese.) And I feel like I have conquered something having gotten through that day. Hard days are exhausting. It is hard to accept the defeat of a bad day or a flare from a chronic illness. It is hard to accept that, this is going to be a bad phase, or a flare. When one comes on for me, I feel beaten, and angry. I cry. I hate knowing that there is nothing that I can do to change it. I hate knowing that I can’t do much more than use my cane and slowly walk around the house, barely use my hands, and just try my best to get by. My husband cuts my food for me. It is humiliating.

The best thing that you can do is to be good to yourself during these times. Try to remember who you are without your illness. Try to remember how great you are, and how special you are. Try to remember that it will pass. It doesn’t feel like it will, I know that, I do know. Sometimes, being in pain, in that moment, feels endless. I am in pain, to some degree, almost all of the time when I am in a bad period. When I am really in pain, I go into a tunnel, stuck with the pain, and my ears shut out all noise, and all I can see is the pain. It is like I can’t hear anything else in the outside world, and the pain develops a sound of its own. I am blinded by it. All I can focus on is what is happening in my body. All I can focus on is the sensation, and getting out of it. Trying to get through the moment. Moment to moment. Certainly, I have read every book about chronic illness. I have read about mindfulness, I have read about breathing. But I find that none of that crap helps me, when I am in severe pain. I don’t ever remember to breathe deeply, when I am in severe pain. I don’t remember anything at all, for that matter. All I remember is the feeling of that moment, the tunnel that I am in, the unique place it takes me to, and how much it hurts.

I find I just have to dig deep. I have to dig deep on those days to get through them. I remember, after my son was born, when I was very ill, and felt like I simply couldn’t go on. I found myself wondering, “I’ve lived a long time with chronic illness, and I don’t simply know, if I can live the rest of my life, like this. I don’t know if I want a life with flare after flare and living with sickness like this in my life.” “I just don’t know if I want to.” It became a question for me that I had to answer. Did I want this for my life? I had begun to realize, that this would be my life. Sickness. Chronic illness. Hard days. And I wasn’t sure if I could in fact do it forever. Hard day after Hard Day seemed like it was simply too much for me to bear. And there were, during that period, so many hard days. It was something I felt I could no longer carry on doing. And then, there came a point, where I made the decision to continue living. I felt like I could continue to do it. I thought about all that I was grateful for in my life, and I took a look around at my family, and all that I have, and I made the decision that, I just would, carry on, because, it would get better, somehow. I had no idea how, but I knew that I had the strength, I knew that much, to get through it, for the period that it took, until it was somehow better. And I’m glad I did, because now, it is so much better. I had to dig deep to find it. At that time, I was fragile, and I don’t know how I found the strength, but I did. It came from somewhere within me that I didn’t know I had.

My favourite quote, that has often carried me through the years is: “He who has a why to live for can bear almost any how.” It can be just one small why, it can be a big why. It can be any why, as long as it gets you through to the next day, and the next day, and the next, until it becomes easier, and easier, and then suddenly, it isn’t so hard anymore to keep going. You always have the strength to get through hard days, hard times, and long flares. I believe, that you can find it in yourself to carry on, if you search inside yourself and find just one why that will make you keep going. I’m sure many people with Chronic illness have asked themselves this question before, whether or not this is a life that they want to continue living, and I’m sure many people with chronic illness have to find a way to keep going day to day when things get hard. It is important to focus on simple things in your life that can carry you through hard times, even simple moments in the day that brought you happiness, or a moment that may be off in the future, a goal you have. I had the goal of one day writing a book. That goal carried me through for many years. That I would make meaning of all that I had gone through, and share it with others. That was my why. Now, I look at my son, and my husband, and they are another why that I can add to my list.

I find that listening to music, and letting yourself just feel however you are feeling, or letting yourself cry if you are upset, can be very healing. It can be upsetting to be in pain. Do acts of self-care, in addition, to seeking online support, and using other tools. Allow your feelings to surface, and pass. Give them time to come, and then let them go. Don’t ruminate in them all day. Don’t feel angry all day. Give yourself ten to twenty minutes, and then try to move on and focus on something that will make you feel happy. Focus on a happy thing, like a movie, or a distraction, if possible, from your pain. Self-care is extremely important on very bad days. Make your baths more exciting with things like Bath Bombs. Get a new television subscription and watch shows on a new subscription service. Rent that movie you have been wanting to see. If you need to let it out, let it out, and then move on. It is ok to be upset. Be upset, but then try to treat yourself with kindness, and focus on the happy things you have in your life today. Try making a gratitude list. Write down ten things that you have in your life that you are grateful for. This may sound really ridiculous. You will see, and feel, much better after doing it. Whenever I do it, it really puts me in perspective, and I no longer feel upset, or angry, at anything, and I realize just how lucky I am.

I have gotten through so many hard days over these last nine years, some of them, so hard, and I remember feeling some nights so beaten by them. But I was not beaten. All of them, they built me up. All of them, over time, have made me a much stronger person. I am a much more caring person now, and a much stronger person because of all of those hard days and because of all of the pain that I have been through. If you are newly diagnosed and at home, fed up with what you are going through, this may be of no interest to you. You may just be fed up with having hard day after hard day. But know that it will get better. I attest to that. And know that the challenges this illness is presenting you with will make you a person unlike any other person, one that you perhaps wouldn’t have been otherwise, a strong, resourceful, kind, and insightful, person. You still, after reading that, may not give a fuck. I know that I would not have, when I was first diagnosed. And on a bad day, I don’t give many fucks about anything. But

I know that I have become a stronger, better person, because I have Lupus, and I can honestly say I prefer the life that I ended up living because I got Lupus. I love being a writer. I love the life I have today. I don’t always love being sick. Yes, sometimes I think about Minnesota. But it’s about balance. And in time, you will find that balance, good days and bad. Accepting pain as a part of your life helps to cope with it as it comes, and to enjoy the good days, and deal with the bad ones. Now that you have a chronic illness, pain will be a part of your life. Work to accept pain as a part of your life. There will be varying shades of good, bad, and very bad days. Pain will be present in many forms. Learn to live with it, and live life anyways. Learn to love life regardless. That is how you will live a full life with chronic illness.

#spoonie #lupuswarrior #fibromyalgia #flaressuck #flareday #lupus #invisibleillnesswarrior #fibroflare #lupuslife #spoonielife #spoontheory #badday #invisibleillness #lupusrecovery

  • Lillian China Smith

By Lillian China Smith written for The Mighty Site


How the Cycles of Your Illness Can Keep You in Stages of Grief

When researching lupus for something I was writing a few weeks ago, I discovered that chronic illness and lupus tend to cycle in three stages:

1. The Flare Phase

Where symptoms are serious, and need medical attention.

2. The Chronic Phase

Where symptoms have subsided, but are still pressing.

3. The Remissive Phase

Where you feel better, the symptoms subside, and you can return to normal activities. This will last for some time. You may even forget you are “sick,” until the cycle begins again.

I should start by saying that I have been in a remissive phase for several weeks, maybe even months now. Perhaps two months.

Recall: “You can return to normal activities. This will last for some time, you may even forget that you are “sick” – until the cycle begins again.”

A few weeks ago, the cycle started again for me – the hair loss, the fatigue, and I tried to ignore it. Then the pain began, waking up at night in pain, from anywhere between 2 and 4 a.m. I tried to ignore it. After all, who wants to pay attention to something like that and acknowledge that they are sick? It’s especially hard after a great stretch of happy pain-free time to acknowledge that:

1. They have a chronic illness.

2. It’s back in action.

This is where the cycle of illness becomes important.

It has been my experience that though I went through the stages of grief when I was diagnosed with my illness, it is a constant cycle that puts me back at square one of grief every time I cycle through it. Every time I cycle through these stages of illness, I go through the stages of grief for my illness again – sometimes to a lesser degree than before, sometimes worse.

These last few weeks, feeling sick and facing a flare again, I have found myself mourning and coping with the fact that I have lupus all over again. At night when I wake up in pain, I don’t just cry because my hands and knees hurt, because I can’t reach my cane, or stand up to finish my makeup, etc., I cry because sometimes I don’t know if I can keep going like this. I don’t know how I will wake up to this every day. This is grief that you face when you are first diagnosed.

This was something I thought I had already faced, but each time I get well and am in the “remissive” phase, I forget about it. When I am well, I allow myself to believe that I’ll be fine forever. Does this happen to anyone else?

Then, eventually, as it always does, the flare stage returns, and I am faced all over again with the anger, the denial, and the grief. And, once again, having to accept my reality.

And then it happens again.

These are the stages of grief, according to Elizabeth Kubler Ross:

1. Denial (Flare period.) 2. Anger (Flare period.) 3. Depression (Chronic period.) 4. Bargaining (Chronic and/or flare period.) 5. Acceptance (Chronic Period, transitioning into remissive phase.)

This will be different for everyone, but by the time I reach acceptance with the illness all over again, my body is finally returning to a remissive period.

It is my belief that chronic illness cycle is mapped on to the stages of grief, which can help you accept your illness and live well with the ebbs and flows of how you will face it.

In a flare, I am awake at 2 a.m. or 4 a.m., in pain. I’m also upset that I have to face this again when I thought that I had put sickness behind me. This is not about being sick so much as it is about accepting my situation, permanently – which, chronic illness by definition makes impossible. Chronic illness means living in a state of limbo – so much so that one’s whole life is lived in spurts, which will allow you to excel or make gains.

In my chronic illness journey, I am discovering that though being sick in and of itself is frustrating, it is the cycle of illness (the flare, chronic and remissive phases) that are even more so.

They force me to phase the difficulties of my life each time I go through them, and to relive the grief I first felt when I got sick. Unlike an illness where there is a beginning and an end, chronic illness has a beginning, middle, end, and then it starts all over again, like a merry go round. How can your grief ever really end, or any progress be made, if you never really get off?

My knees hurt right now. It is almost Christmas time. My birthday is in a week or so. Things are not easy right now, and I wish desperately that things were different. I wish I could return to the land of “remissive phase.” I thought that when I was in that phase that I had gotten off the carousel.

None of this information is helpful, though, if we don’t learn how to apply it to make future flare cycles easier on ourselves. Maybe grieving chronic illness never really ends, but knowing that and warning yourself to be kinder to yourself emotionally because it will bring up grief, may help the process.

Self-care is important – not just physically, but emotionally too. Now I will be less aloof about flares and about the possibility of them, not just physically, but also emotionally. I am cognizant that I will cope, not just with what my body faces, but with what it brings up for me emotionally.

I feel like grief is like peeling back an onion. It comes in layers, and the more I learn about my own process with illness, the more I feel this to be true.

#autoimmunedisease #lupusfighter #fibromyalgia #chronicfatiguerecovery #elizabethkublerross #epilepsy #chronicillnessawareness #chronicpain #grief #lupuschick #invisibleillnessrecovery #lupus #fibromyalgiafighter #fibrowarrior #psychology #epilepsyrecovery #lifewithlupus #chronicfatiguesyndrome #invisibledisabilities #chronicillnessrecovery #chronicillness #lupuslife #chronicillnesswarrior #chronicillnessfighter #chronicdisease #chronicfatigue #autoimmunerecovery #invisibleillness #lupusrecovery

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