A Word on Happiness

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. 

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Chronic Illness Cycles Are Explained In Three Distinct Stages

By Lillian China Smith

Chronic Illnesses flare up and then go away throughout time, giving the sufferer periods of remission, but also of severe suffering, as well. It is often unpredicted when the “flare” period will come, and symptoms usually are never gone, even in times when there isn’t a flare. With Lupus, and other chronic illness, there is a distinct pattern to how it flares up, eases, and then returns again.

1) The Flare: Where symptoms are distinct and aggressive and need medical attention. This is a “Bad Day,” when you are in bed, can’t do anything at all, and wish to god it would end.

2) The Chronic Phase: Where symptoms are pressing but not as severe. This is like a flare beginning to slow itself down. This is a “Middle of the road time.”

3) The Remissive Phase: Where people may feel better, but still have some symptoms present, it differs from person to person. However the person living with the illness may be able to go about their lives like normal, and may even be able to forget that they have an illness, until the cycle begins again. These are the “Good Days.”

1) The Flare –> 2) The Chronic Phase –> 3) The Remissive Phase.

Well, that was fun! Let’s start this whole cycle now over now, shall we?

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Coping With Lupus “As A Normal Life”

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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