Lillian China Smith
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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- Lillian China Smith
By Lillian China Smith
SIDE EFFECTS! Ergh.
In a nutshell.
Fucking same bitch, where’d you get that?
PREDNISONE!
Me, like, “Yeah, me too, I just need three pots of coffee and four or five hours and then I’ll be ready to go.”
“Hello Sir, I’d Like Your Strongest Potions To Fight My Battle Please”
Diarrhea and upset stomach ads are my favourite. They are always dancing as though diarrhea is actually a great time. It’s the same with medications. Are we having a great time? No, not really.
Mental Health and Chronic Illness are so related. I get depressed during every flare. This is me, during a flare, trying to “get some fresh air.” Literal depiction.
Constant work, like being in Jurassic fucking park. LOL
Macaroni and Cheese is key as well.
#lupuswarrior #fibromyalgia #epilepsy #lupusawareness #mentalillnessrecovery #mentalhealthhumor #mentalillness #chronicillnessawareness #chronicpain #lupuschick #lupus #fibrowarrior #chronicillnessmeme #epilepsyrecovery #lifewithlupus #lupusflare #invisibledisabilities #chronicillnessrecovery #lupustreatment #chronicillness #lupuslife #spoonielife #mentalhealthrecovery #chronicillnesswarrior #lupussupport #chronicillnessfighter #chronicfatigue #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.
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