By Lillian China Smith
Some things we want can’t be bottled, brought, or swallowed to make us feel better when it comes to illness. Sometimes with illness, well, with me, I was unhappy that I was sick, and with my chronic illness. And I wanted to be better, and that unhappiness grew and grew because I wished that I could just be better. I wanted a solution so badly. I wanted a cure, I wanted a healthy body.
But I’ve had to learn to accept my body as it is, chronic illness or not, sick or not, and be happy as I am, and grow my own happiness, in all my body’s various states and forms, whether or not I’m stuck in bed with a flare, or whether or not I’m doing well that day. It’s been tough, because with illness, it’s not easy to always be happy. Illness is unpleasant.
Nobody wants to be happy when you are in pain. Nobody wants to be happy all the time when you are suffering. Sure, it is easier to look to sadness and wonder why you aren’t going to ever get better. But accepting facts as facts, and working on your recovery, and growing your own happiness, are a solution that you can change. That is something that you can take action on.
In my Recovery from Lupus and Chronic Illness, I have had to learn to grow my own happiness, regardless of what illness brings me. It is an inside job, meaning, being happy with your life, and yourself, no matter what happens. You are you, and that is what matters. Be happy with yourself first, love yourself, and grow from there. It sounds ridiculous, maybe to some, but it’s really the truth. Happiness doesn’t mean necessarily having everything that you want, it means having the simple things in life, and peace with yourself and kindness to others, and inner bliss and self compassion, as well as self respect, and self kindness, amongst other things. I always believed if I was well that I would finally be happy at last, and all my problems would be solved. But that wasn’t necessarily the case. I became happy when I made peace with myself.
When I finally did get better, and got “my life back,” it didn’t seem to make a difference to me, because I had already found happiness. I still have sick days, but I have found the sense of happiness that I was looking for when I was sick, and depressed about being sick. When I have pain now and again, I get frustrated, but, I don’t let it get me down. I feel like I have beaten that part of my life now. I remember times when I didn’t think happiness was possible, especially during flares, and I can tell you now, sitting here, that it is, and that recovery is possible, too. Today I am healthy, to my wildest dreams, and it shocks even me to think about how sick I was before. I am so grateful today to have this working body. I don’t wake up in pain, and I walk around, and don’t use a cane, and I don’t have sore joints, and I don’t take tons of pain medications. And, by some miracle, it has all worked out for me.
And, I am happy. And I worked hard to get there. I worked hard, on the inside, it took strength, and hard work, and determination, and a lot of hanging on in the dark moments, and thinking, “I won’t give up,” even when I wanted to, even if I thought I couldn’t get by, or get through it, or stick through it or last one more night. I tried, and I would think about one good thought to get me through that bad night, or that bad moment, for just one more time, just to make it one more night, of through that bad moment of that flare, and then I would be able to get through the pain for those five minutes, or that evening, and then I found myself waking up the next day and I could try again.
And here I am today, on the other side of it. And I believe now, I believe in hope, I believe these things are possible, I believe in miracles, big and small, because they have happened for me. Because I remember how dark it was for me, and how bad my bad moments were when I was ill, how dark those times were when I was in that bad place then, and how hard I worked for this happiness that I have today.
And you’ll have to work hard for your own happiness, with your illness, wherever you are with it. Whether or not you are at a place of acceptance with your illness, or whether you have a sense of happiness already with your illness and are at peace with it, maybe you already know that happiness is an inside job. And it is. I have found that happiness, is an inside job. It is something that you will have to work for. And you’ll have to work hard for it. Just like you’ll have to work hard for your recovery. It takes time. You’ll have to work hard and push and advocate with doctors, and the medications will take time to work. But you’ll get there in the end.
#butyoudontlooksick #autoimmunedisease #mentalillnesshumor #spoonie #invsibledisability #lupuswarrior #happiness #fibromyalgia #epilepsy #mentalillnessrecovery #mentalhealthhumor #depressionmemes #recoveryispossible #mentalillness #chronicpain #lupusdiagnosis #fibro #lupus #fibromyalgiafighter #fibrowarrior #mentalhealth #chronicillnessmeme #recovery #epilepsyrecovery #benlysta #invisibledisabilities #chronicillnessrecovery #fibroflare #disability #autoimmuneissues #youretooyoungtobesick #Depression #chronicillness #lupuslife #mentalhealthrecovery #autoimmunerecovery #lupusrecovery
Updated: Feb 14, 2021
By Lillian China Smith
I am a big fan of dry shampoo. Because chronic illness, lupus and chronic fatigue and fibromyalgia have changed my life so that I adapted myself over time and slowed down my old routine down to adapt to what I could and couldn’t do after I was diagnosed. Who else has an easy every day routine? —
I have a variety of things, many new tricks that have helped me to cope with my illness in my day to day life. They help me to get through each day, be it with maintain my hair when I can’t always wash it, or managing my illness wardrobe, or the pain that an illness brings, or the mental stress that pain brings. Between therapy, medications, humour, and a variety of other things that include pizza, I list below all the ways that I cope day to day with my chronic illness. I have also learned a lot about how to cope with the mental stress that being in pain brings, as I have spent many years trying to escape from that pain, and learned, that sometimes, escapism, really isn’t the best way to go about it, even if you are young, and just want to feel and be like everyone else who is young too. It sucks to be sick when you are young.
Today I had a phone call with my doctor. I told her, “I’m getting very fed up with dealing with all these doctors and pharmacies, I’d really like to manage this in a way where I can cut down on all of it. It is my son’s birthday coming up, and I want to be present on his birthday, not dealing with my health.” She said, “Yes, it’s a shame. You are so young too.”
And it hurts to hear that in a way that I can’t fix. Because there is no fixing chronic illness. Because I have been, so young, this whole time. I was young when it happened. I was 22. I had my life taken from me. I told my husband she said that and he just looked at me. Because, I will be like this forever. My youth, is gone now. So what if I am young. Such a shame that my youth is lost. Such a shame, that I am able to provide this post and this blog of ways to cope with how to deal with chronic illness, and how much I hope that it helps other young people, who are out there suffering too. Because I know there are so many of you out there, like me, who are young, and it is such a shame, that it has happened to you. And I hope this helps you.
Hot Baths: I find that Hot Baths, with or without Epsom Salts, almost always help relieve pain. They de-stress. At the end of the day, when I am aching, and tired, I have a hot bath. On very hard days, I have a hot bath, and get in bed. Sometimes I have multiple hot baths. I think that they are one of the best things available in a toolkit for pain.
Elevating Your Legs: When I lie down, if I am in pain, I elevate my legs. I prop them up with pillows. This also works as some sort of makeshift desk and takes away my pain. It makes a significant difference in knee pain.
Different Pain Medications: I take a variety of pain medications, (all very carefully, according to the doctor’s orders). I also make a log for my doctor, about how much I take, every few weeks, so that she can see how much I am taking. I do this because with opiates, it is important to keep track of how much you take and to stay on top of your pain medication intake to keep your doctor informed and to avoid taking too much at a time. I will discuss this in the Doctor Management Chapter. For Pain, I take Opiates, mostly Tylenol 3, (But never strong opiates. I do not like them, at all.) Celebrex, at a push, and at a push, Percocet. Celebrex is an anti-inflammatory pain medication that reduces swelling in joints. It is like a stronger prescription version of Aleve.
Voltaren: Voltaren is a great over the counter rub you can buy that will reduce pain immediately. It is like Icy Hot. It is another version, perhaps you prefer Icy Hot. I prefer Voltaren. I go through many tubes of it a week. I find Voltaren, in combination with these other methods, really helps manage my pain. Especially fibro pain.
Patches For Pain: Over-The-Counter Topical Patches for pain that you can apply to your back, or other areas of your body for pain. I find that these work well for pain. When I have pain in my back or other areas, these are great for short term use.
Microwavable Heat or Freeze Packs: There are packs that you can buy on Amazon (listed at the back of the book, some suggestions) that you can either freeze or microwave to heat up which I find really handy at relieving pain. I put mine in the freezer for quick use and then if I need to, will microwave it also to use it as a heating pad. Sometimes I find this works better than the heating pads that I have on hand.
Heating Pads: A heating pad is an essential purchase if you have a chronic illness. Buy a good one. That cannot be understated. Buy a great heating pad. You will not regret it. You want it to be big enough to wrap around, or through, and under your legs or knees, or back, or wherever you experience your pain. I once bought one that was too small and it totally did not help me, because I couldn’t get it to fit the areas that I needed. Make sure that it is what you want and will actually help you. You want it to be warm enough and hot enough to really take away your pain. Really read the reviews about the heating pad. Perhaps go to a medical supply store like the one I went to with my dad, and really look at heating pads, if you are not making the purchase on amazon. I typically buy mine on amazon, but have bought some before at medical supply stores. Look at the dimensions of the heating pad, and make sure that it is big enough for you.
Ice Cream: Sometimes, Ice cream can really help with the mental stress of pain. This should be self-explanatory here. I find that vanilla is an all-around soother, and warm chocolate chip cookies while the chocolate chips are still a bit melty dipped in a nice glass of milk also really help.
Activity: This probably shouldn’t go after the category of Ice Cream. But, I care more about food than activity. This may change in time, but who knows. I have always loved food. Science says that doing a certain amount of activity each week can relieve symptoms of fibromyalgia and other chronic illnesses. The trouble is getting yourself to do the activity when you are in pain. I really struggle with this myself. I will make time to go to the gym, and then when that day rolls around, I am in pain, and I don’t want to do it. But once you have gotten yourself into the routine of it, it isn’t that bad. It is about building up the muscle and breaking the habit, like with anything else.
Ice: I have pre-made ice-packs in my freezer ready to go so that my husband can just grab them for me. I double pack them so that they don’t drip out all over the place. You can also buy certain bags that you freeze, like cloth bags that are made of rice, which get cold, or just freezer bags, which you can use as ice packs. I had a great and favourite ice pack which was really pretty that was filled with beads. It got pretty cold, but I couldn’t also microwave it to get hot. Having things ready to go in the freezer so that you don’t have to make them when you need them is important. Ice is a great anti-inflammatory tool. Sometimes, when heat isn’t working, use ice for your joints or for pain. Alternate between heat and ice.
Humor: Humor helps take my mind off of pain. My husband always manages to make me laugh when I am in pain. When the pain is very bad, I am not usually in the mood for funny clips on you tube, or things like that. But my husband is very good about bringing me out of a bad mood and making me laugh.
Pizza (I just love Pizza): I wish this wasn’t on my list, and so does my hips. I have gotten better about my pizza habit over the years, but I still have a deep love for pizza that will probably never go away. I have an intimate knowledge of the pizza restaurants in my city, and whose crust is best, and when they close. Pizza helped me get through some of my worst flares and bad days. (It should be noted that, when you are chronically ill, cooking can be tiring.) I remember sitting there, after a week of being in pain, triumphant, with a pizza, exhausted, and eating a pizza, suddenly comforted in all that had happened that week, by this treat of having a pizza. It became a thing for me. Pain, pizza, pain, pizza. And it does help. For me at least. My husband suggests pizza to me now, when I am having a bad day. He says, “honey, do you want a pizza?” And, sometimes, I’ll say, “yes.” Sometimes, I’ll say, “No.” Sometimes, though, I get one after a bad day, and I feel much better.
Getting out of myself : I find the ability to get out of your head with a chronic illness to be very important. Chronic illness, and being in pain all the time, or, if it isn’t a chronic illness that causes pain, even the mental stress of having a chronic illness, for example, for me, the stress of having seizures, is another example, is a lot to cope with. It is important to have a release from this in some way, otherwise I end up feeling very closed in. I have tried multiple ways of coping with it, over the years, some, very unhealthy, others not. When I was younger, in my early twenties, I went through a period where I drank wine, to cope with the physical and mental pain I was in. This doesn’t mean that I went out clubbing. I was still at home, coping with pain. I was stuck on the couch, and mostly homebound. But I was drinking, at home, and in pain. It was a bad combination. It helped me cope with my anger, too. Friends (and, boyfriends at the time) would come over or be at my apartment and we would “party” at the apartment as if it was normal what was going on. I used medicinal marijuana, as well, for some time, which helped, to a degree. Initially, I found that wine helped me cope with pain, but it was doing nothing to improve my health. All I wanted at that time, in particular was to feel normal, like other regular twenty-somethings, but I was ill, and walking, often, with a walker or two canes. I wanted a release from that, mentally. I wanted to feel like all my friends that came over who weren’t like me. It was frustrating. Being the sick one, in my relationship at that time, was frustrating. I was young, and didn’t know how to cope with it. Drinking probably wasn’t the best way to go about it. Wanting to be able to drink like other kids my age, was a fair thing to want, but for people with health issues, it’s never really that safe.
I stopped drinking, and my health improved a lot. A significant amount. So much so, that my life changed dramatically. On bad days, I still had a hard time mentally coping with pain. I think everyone with chronic illness has a hard time coping with chronic pain, as it pushes you to your limits. Being day in and day out in pain is a thing you cannot imagine unless you experience it yourself. Especially, trying to live a normal life while being in pain and emotionally trying to cope with that pain. I would get angry about being in pain. On and off throughout my life I had always been a smoker, and I found myself smoking cigarettes to cope with pain. This, also wasn’t healthy. I still struggle sometimes with smoking cigarettes.
I don’t drink now. I think this has made a significant difference in my health and how great my health is now. Many of the medications that you take for Lupus and chronic illness you are not supposed to drink with. Epilepsy medications can interact severely with drinking. Epilepsy medications, one that I take in particular, can really interact with your medications. I remember, when I was a younger, before I got diagnosed with Lupus, and we were all drinking, and one of my friends took it from my bathroom, I guess they thought it would have some kind of effect on them. That was terrifying. Without even telling me, they stole my medication. That is a situation you never consider. (SEE BELOW: LOCKBOXES FOR MEDICATIONS).
Medications and alcohol interact very dangerously and you have to be very careful. Pain medications are the same way. It can be hard when you are young to want to drink and be normal, to want to go out with your friends and have a drink or go out and be with guys and live a normal life. But you should be mindful always of your health. I certainly can’t tell you what to do.
Always take your medications, before doing anything, especially if you are epileptic, so that you do not forget a dose. Plan it out carefully, and put your health first.
These are not good examples of how to cope with pain by getting outside of yourself, though I am sure, one of the readers of this, will have tried them, particularly, a young reader, who is looking to feel just like their peers, or to get rid of their pain and feel normal again.
What I do now to get out of my head and help my head, has to do with my family. I organize my spice cabinet. It sounds dorky, I know. But I guess that is the difference between being 25 and 32. I bought clear jars for spices and spice labels and re-labelled all my spices. This really helped me a lot after the baby was born.
I do things for my husband. I try to take time out from what I am doing and do something for him. Sometimes, I dedicate a whole day, even if I am in pain, to showing him how much I love him. The other day, I made him a roast chicken dinner. I took my pain medication beforehand, and did it. He does so much for me. He cares for me all the time. The fact that I can show him, in that small way, how much he means to me, helps get me out of my head. I call my parents. I talk to my mom, and we chat. I ask her how she is. I text with her. This all helps me. I meditate. I do the meditations in bed when I am in pain. They help with the pain.
A Good Cry: Nothing can replace a good cry. Sometimes, it just gets to be too much. Sometimes coping with illness is a lot, and you need to cry. That is fine. Just let yourself cry. You will feel better after. Sometimes I put on my favourite “crying movie” or chick flick or romance that is super romantic and sad and I cry it out and then I eat brownies and let it all out and then I feel much better for it.
Dry Shampoo: Dry Shampoo is essential to me for getting through most weeks as I often don’t have the energy to wash my hair as frequently as non-chronic-illness people. Dry Shampoo keeps my hair regular and in shape and looking like it should. There are a variety of dry shampoo’s that you can buy. There is spray on, and powder. I like both. In my many years of trying dry shampoo, I have found that the powder shampoo really gets it super clean. If not applied properly, spray on can make it worse. You have to really brush it out thoroughly afterwards. You can also get dry shampoo that matches the colour of your hair, but you have to look hard sometimes to find it. Always have dry shampoo on hand if you have difficulties with regularly washing your hair.
I have an “Illness Wardrobe.” I started this in my first year after I got sick. With Fibromyalgia, in particular, certain clothes can hurt your skin. With Lupus, it can sometimes be too painful to do up buttons. I figured out that easy to wear clothes are in general easier to wear, meaning, shift dresses, t shirt dresses, with leggings. Nice sweatpants, with a nice top. Nice sneakers. It can be done nicely, so you look and feel nice, and don’t have to feel like you look sick. It can be stuff that I is easy to wear, with little effort on your body or hands, and skin, with little pain, and still makes you look and feel good. That doesn’t mean go out and buy a new wardrobe. It means to consider your clothing carefully. Consider it with your illness in mind. I wear jeans, sometimes, now, when I feel good. I do get dressed up fancy, sometimes, with heels, This is on special occasions. And on those days, I look and feel great. I can do it, it’s not like that’s beyond me. But I usually wear more of an illness wardrobe for my day to day life. It is easier for me. It takes less effort. The energy to carry out a full day for me and also deal with getting dressed, which takes a lot of effort, and spoons, is too much for me. Easy, throw on clothes, that also look good, are what I stick with. Everyone has their preference, but for me, this has saved me on countless occasions for many years. It has also helped me to feel that I’m still at my best even when I’m feeling my worst.
PRP: Short for Platelet Rich Plasma Injections. It is regenerative medicine and can be an alternative treatment for Lupus or Joint Pain. I get PRP done every few months. They take your blood, spin it a centrifuge, and take the separated plasma to re-inject it into the affected joint. It replenishes the joint and speeds up the healing process of that joint. I get it done in my knees. I find that it makes a really significant difference for me. I started getting it done several years ago, and now, I can tell when it is starting to wear off and when I need new injections. There is little recovery time after the injections (my knees feel better pretty much immediately) and then I have much better movement and less pain in the time afterward. It reduces pain by a really significant amount. Sometimes I only have them once a year, or other times, more frequently. The injection itself is painful. They use anesthetic in the knee, and then inject the plasma. Afterward, the knee is very swollen and walking can be a bit challenging for the first day as your knees have undergone the procedure. It is not a difficult procedure, however, and I find it to be very effective and essential in my overall Lupus treatment.
Stem Cell: is another alternative treatment that can be used for Lupus and chronic illness. I have had Stem Cell Therapy for Lupus, three times. Two times where they took the stems from a fat harvest in my stomach, and the third time, where they took it from bone marrow in my back (upper hip). They then process the stems, much like you do with PRP, and then reinject it into the affected joints and give you an IV of the stem cell treatment (in two of my surgeries, not all). Usually, Stem Cell is done along with PRP. I found that Stem Cell also really helped with my Lupus symptoms. It helped with fatigue, it helped with pain, and it helped with mental clarity. The very first time I had stem cell, I was incredibly ill, and came out like a new person. I was markedly improved. Over time, like with PRP, I was able to tell when I “needed a new stem cell” because it made that much of a difference for me. Some readers may think these treatments are bogus, but I really did see the effects in my every-day life and it changed my disease so dramatically and showed such improvement.
Pill Taking: I use pillboxes now, but for a long time, I took my pills straight out of the bottle, because I liked the typical fact of knowing how much was left in the bottle at all times. For some reason, the out of the bottle method helped me to remember to take each bottle at a time and not forget one prescription each night or morning. Now, I am in the process of switching to pillboxes, and I am finding it very cumbersome. Filling them up each week, etc. I’m not sure if I’ll stick with it. Some people use the pillbox method, others use the straight from the bottle method. My husband uses a pillbox. He likes to see an empty pillbox to be reminded that he has taken his meds. Sometimes I choke on my pills, or because of my meds, throw them up, and then I am never sure if I should re-take them or not. I typically always re-take them, just to be safe.
But, I have asked doctor’s about this, and unless you have thrown up your pills and see them in the puke, or if you vomit and it is within half an hour of taking them that you throw up, generally, don’t re-take the pills. If you throw up within a half hour of taking your pills, then re-take them.
I have a lockbox for my pills, and put all the medications in a lockbox. I do this for safety, to childproof my house, and because you never know who could take your medications. For emergency, need-to-access pills, I keep them in a discreet bag out of reach of my child and that people wouldn’t notice. It looks like a makeup bag. You really never know. If you have people coming in and out of your house, get a lock box for your medications. For the safety of your mobile children, lock up your pill bottles. I have also had people steal my medications before, and for their safety and yours, it is best to have a lockbox.
Do not ever carry too much on you at once. Get a small pill container, and only carry what you need on you.
They sell beautiful pill containers for all different types of illnesses online. Schizophrenic.NYC sells cool ones for Schizophrenia, that say “It’s not a delusion, you are incredible.” Amazon has some neat ones as well. Find a pillbox that you like and if you are going out for the day, dispense your pills into the box. Don’t carry too much with you.
Therapy: I get therapy for basically everything. Therapy has been essential in my recovery from Bipolar Disorder. It was very hard for me to a therapist that I trusted. And I have stuck with her for many years. I continue to go to therapy regularly, now, and throughout all these years, not just for bipolar issues, anymore, but for chronic illness. It has helped me to accept and work through my issues with my chronic illness over time. It helps keep everything in check. Chronic illness therapy can be very beneficial. There are also specific chronic illness therapists out there, who work only in that field. They focus on accepting your illness, and coping with the grief of your old life, loss, as well as pain. I attended chronic illness therapy, briefly, in my first year after my diagnosis. I gave up on it then, but do it now, with my current therapist. It is not “chronic illness therapy” but it is my own therapy and it helps me cope with my illness. I recommend that if you are having trouble coping with your illness and the stress it brings that you see a therapist. This can also help if your illness is bringing difficulties into your marriage. Sometimes, couples counselling can help.
Time with my son always helps with my pain. Seeing him makes me happy. Even when I am having the hardest time, if I see my son, it brings me such happiness. His little cheeks, his two bottom teeth. His chubby little hands. His effortful syllabic words. His small feet. So far, he is one of the greatest achievements of my life, if not the greatest. I love getting to see every milestone that he makes. Having the strength even on bad days to be there for him means so much to me. Seeing him smile when I sing to him, even if it is through tears of pain. Being a mother is the greatest joy I have ever known. Getting to be there on the Good Days and do all the things that I can’t do on the bad days, is an even greater joy for me. I make up for lost time. When I hold him, I hold him tightly, and run my fingers through his soft curly hair. He has brown soft curls, just like mine. Exactly my hair. He likes us to watch him play, and looks up at us to see if we have seen what he just did with his rattle, or his new toy, with an eager smile, proud at his achievements. And I am so proud, all the time.
My husband always helps with my pain. He is my best friend. I don’t know what I would do without him. We talk about everything. Even about the difference in how great a can of diet coke is compared to the bottle. We both firmly agree that cans of diet coke are better than the bottle. The can is crisper. It is fizzier. It is colder. I can tell him anything. He makes me feel beautiful. He seems to know the answer to all the questions that I have, maybe because he is older than me, I’m not sure. Perhaps he doesn’t know the answers, and perhaps his self-assuredness has just come with his age. He makes a great steak. He made me my steak on one of our first dates. I knew that I loved him right away, the minute, the night that I met him. My mum always told me, when I asked her about marriage, that I “would know.” And I never knew what that meant. And then when I met my husband, I knew. I knew right away. I decided I was going to snatch him up and keep him, whether he knew it or not. I decided right then and there. Having him in my life has made it so beautiful every day. Almost nearly four years later, I still cannot believe that this has all worked out the way it has, and that I have the family that I do.
After suffering for so many years, a simple life, one that I had always hoped for, a happy ending with a kind, loving husband, and a beautiful baby, feels like a dream to me. We have a nice house, and it has all worked out for me somehow. I don’t know how, but it has. My husband has taught me, that above all, life takes time. Everything, takes time. Nothing works out overnight. Nothing good, anyway. All of my illnesses have taken many years to work themselves out to the place that they are at now, where I am able to have this sense of normalcy. And yet still, I work to manage it every day. This sense of happiness that I have achieved, with multiple chronic illnesses is something I never thought I would have. I have learned to manage my diseases to a degree where I can live a functioning life. There is always farther to go. You can always keep fighting. Never give up hope.
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Updated: Feb 24, 2021
By Lillian China Smith
I was diagnosed with Lupus in 2012. I have lived with it for nine years now. It is hard to estimate how much of that time I spent having flares, but looking back at photos, a good deal of my camera roll is taken up by photographs of me with mobility aids, and my memories of my twenties are filled with me “missing out” on things because I was ill, and having to leave important things because of my illness, things like University, and other events, or stay at home, because I was too sick to participate.
But it all seemed normal at the time, because I tried to make it seem that way. I tried to make it as normal as I could. I tried to make Lupus ‘cool,’ even, and go about my life like being sick wasn’t something strange or odd, and to seem that it wasn’t unusual that I used a walker, or was that I wasn’t in such awful pain, and often confined to the couch or bed for long stretches of time.
Eventually I started having surgeries, and seeking alternative cures, to try and treat the Lupus, and, these helped, even though they seemed like desperate attempts, even though there was a possibility that they may not do anything at all. But they did help.
I tried to go about my life with all this in place like it was all normal. I remember being really scared for the surgery, (it was a stem cell procedure) because so much was riding on it, (it could possibly cure me!) and in the weeks leading up to it, I had so many mixed feelings.
I was terrified, and upset, and filled with hope, but also fear. I was also ill. I had so much pain throughout my body, and couldn’t wait to get the surgery over with, but I also had a boyfriend and just wanted to carry on my life as usual.
So I just went on with my life as though “nothing was happening,” as best I could, however well I was able to, in the sick fashion that I did, meaning, to the degree that my body let me. That guy I was with at the time would come to my doctor’s appointments with me, and he’d stand there when I found out bad news, and he’d watch me cry when I got upset about it, and when I banged my cane around in anger over being put through treatment after treatment, and he’d hold my hair back when I vomited on the new treatment (we didn’t end up staying together, though).
After the surgery, I was better, a bit, but I had to wear some garments for a while after, because they took fat from my body to harvest the stems and re-injected them it into my knees and then give it to me VIA an IV. So I had to wear a post-surgical garment, it was a little tight bodice suit that clipped up the sides and then zipped all the way up along your hips and that you wore under your clothes. And I remember wearing the garment, and using my cane, (at least the bruises from surgery were pretty much gone), and thinking to myself, how embarrassed I was about it all.
But I carried on about things as they were normal. And things were normal. At the time, my boyfriend and I were living together. And at the time, when friends came over to visit us, they didn’t seem to make a fuss of the fact that I was very ill.
I remember, on one occasion, we were living together, that guy and I, in a house together somewhere, and we had our neighbours over for an evening with friends, and our neighbour from the house to the left of ours found out that I had Lupus, and he asked me if it meant I was going to die. We were sitting in a room full of people, and he just asked me that, just like that. He said, “Does that mean you are going to die?”
I had been asked that before, by other people. Or told, by other people, that their friends had died from Lupus, or that people they know have died from Lupus. But this guy just came out and asked me, if I was going to die. And I got so upset. How rude, I thought. How dare he ask me that, and how ignorant. I’m just trying to live a normal life and have some friends over.
And that’s what it’s like I guess, living a normal life with Lupus. It’s as normal as it can be. An evening with friends, and then I get asked if I’m going to die. A first date with a guy, after being diagnosed with Lupus, and he asks me if I’m going to die, as well.
Now, it’s been about, I’d say, four or so years since that time, and my life is much more normal than that. I’m much healthier, and I don’t have a lot of those problems, but I still get asked by people if I’m going to die, or told by people that their friend died of Lupus, as though would be a comforting thought to me, all the time, even in the middle of my breakfast, sometimes, or at the airport, randomly, by my wheelchair attendant.
I guess “dying” is the general assumption of a lot of people when it comes to Lupus, because it is a serious illness. But these ignorant comments (see my article on ignorant comments), are usually coming from a place that is well intended. People often don’t know what they are talking about, and they do usually mean well. They don’t mean to hurt your feelings. They just don’t know any better.
Nowadays, normal to me doesn’t involve surgical garments, and canes. Maybe, it could involve a cane, but, that would be rare. Normal to me involves organizing my many medications, spending a lot of time calling pharmacies, speaking to doctors, doing bloodwork, weekly injections, sorting out and taking lots and lots of medications, using a lockbox for my medications, and, sorting out all of my medications so that they can be childproof, and safe, and finding a way to make my illness fit into my life. Finding a way to make the havoc it wreaks all fit into my normal happy life. My married life.
So, I have my lockbox of medications beside our bed, and it is a childproof box, because we have a baby. And, I try to ignore that it’s a bit weird that I have this big box, and I first started out having it in the closet, but I need it besides the bed, so then I moved it. My brother visited recently and he saw how big the box was and all the medications in it and he said “Jesus that is frightening.” And I just thought, oh god, yeah, any regular person probably would say that. But to me, to my family, I have made it so normal, that I take all of these pills, and that mummy is ill. I have slipped it into our daily routine, effortlessly, like with the chicken and brussel sprouts, and the movie after dinner.
That’s the only way you can go about being sick, is by living with it as though it’s a regular life, and not treating it any differently. When I was younger, I used to hate being sick, and I treated my illness as though it was some abject thing, and I’d get so angry about it, and I made a big deal out of it, and it made it even worse.
Normalizing it, living with it, learning to just accept it into your life, and taking each day as it comes, makes it much easier to swallow. That is very hard to do if you are feeling sick. And I remember (and will never forget) how very vividly this year I became so incredibly ill, and how angry I was, at my illness, for making me so ill, and how hard I would wish that I didn’t have Lupus, and how hard I would wish to get better, every day.
But flares do something for you. By getting sick, you expose yourself and your family and loved ones to the experience of your illness, and they learn about it, and it does normalize the illness for them. They learn to have pills around, they learn about your pain, in a way that they wouldn’t have otherwise. If you are in a flare right now, and if maybe you have a new boyfriend, or are newly married, and are flaring, and are nervous, don’t be. Because this will help your partner to learn about you. It is good. And after it passes, and when you feel well again, your illness will be something that is just ‘there’ in the background, that you have conquered as a team.
My husband and I have lived through what feels like the flare of a lifetime during this last year when I was ill and had a terrible flare, and we conquered it together. He is the one who found the new treatment that I went on that eventually helped me and got me better. He sought out cure after cure for me. He came to all of my appointments, and took care of me while I was ill, and brought me my favourite foods and cut them for me while I couldn’t hold a fork, or cut down with a knife, and he didn’t make me feel embarrassed about it when I was too embarrassed to ask for help myself, because he already knew, that I would have a hard time cutting the food because of the pain in my hands. He knows I have a hard time with baths, sometimes, when I have a flare, and he helps me, and he is so kind, and never makes me feel embarrassed about any of it, even though it is, kind of embarrassing, to get help in moments like that, but not from someone you love, and it isn’t for me with him.
He helped me to do my hair, at times as well. It was all just a part of our routine, for a while, until I got better, and now, it isn’t anymore. Now, our routine is different. Now, I am healthy Lillian again, and, I don’t need that kind of support from him, but I know it’s there if I need it.
While I was ill, we put fairy christmas lights on the bed, because I was in bed so much, and the entire bed would light up, and it brought me so much cheer. My husband put them up for me. We have a four poster bed. He strung them up along the sides of the back and the foot of the bed, and at night we would watch movies in bed and turn the lights on. It wasn’t a thing that I was ill. It was a thing that we had christmas lights on though, and that we felt like we were in a fairytale.
My husband used to say to me to just see being sick as something that was normal, and go about it like nothing else. And I would get angry at him, because at the time, when I was very sick, I was so upset that I couldn’t get out of bed. I have always normalized being sick, but I didn’t know what my husband meant when he said to treat it as normal.
What he meant by that was that if you don’t see your illness as an illness, then it isn’t something other people should treat differently either, and they shouldn’t treat you any differently for it either, too. Carry on your life as normal, your routines, your daily life, and all your illness habits, as a part of your life, as though none of it is strange. It is all just a part of life.
See yourself for who you are, and go about your life like that, regardless of your Lupus. Lupus gets in the way, sure. But, don’t let it be who you are or what you are or what people see you as. Normalize your life, and live your life to the best of your ability, and try to live a full life, with Lupus in it.
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