Meeting My Hero: Remission Is Not What I Had Expected
Has anyone ever told you that you should never meet your hero? We often have an idea of who that person is, and then when we meet them, we’re sorely disappointed.
We’d hyped them up to be a perfect person. Then we discover a flawed human. The disappointment can be disheartening and can leave you feeling empty and believing that you’ve wasted your time.
This is how I feel about remission. I hadn’t realized it until one evening as I sat and sewed. I often meditate, but ironically, most of my biggest revelations come when I’m engaging in other activities that I find to be therapeutic.
I have previously shared that I am a self-certified “joy junkie.” However, for months, I have felt that I have become a blob of negativity. I’ve had a tough time with depression and started seeing a therapist shortly after my hospital stay last year. I have been battling on many levels to overcome this episode of depression, anxiety, and feeling rubbish overall.
I’ve taken extended breaks from social media since it seems to be a hoarding place for negativity. I have also taken a hiatus from most social activities. I’ve kept my biweekly coffee meetups because I love to talk business, and these gatherings provide an outlet for me to be social and participate in something enjoyable.
When I last visited the States, I decided to start accepting more invitations, and I did so immediately upon my return. However, I had to cancel each one for various reasons related to lupus. Yet, I’m in remission. Some hero!
I had expectations of remission. Perhaps it was my fault for not asking the right questions of the folks I’d interviewed who are in remission. When I received my diagnosis, some people said to me, “So-and-so has lupus, and they are living a normal life,” so I asked if I could contact that person. When I did, I often learned that they were not living a normal life.
Some of those who were in remission were following a mostly plant-based diet, so I decided to adopt a vegan lifestyle. I did not ask them what “remission” meant to them. I had some preconceived notions about my hero. I believed that it would show up, take all of my pain away, and remove my need for medications. I thought that when remission appeared, all would be right with the world. (Add rose-colored glasses and angels singing to my background soundtrack.) However, this has not been my experience, and I’m left feeling dismayed.
Last December, for the first time since my diagnosis, I was told that my bloodwork was “normal.” When I asked if this meant “remission numbers,” I was told “Yes.” Finally, my hero had shown up. I’d been chasing it all around the world, and I finally caught up with it in Mexico after a food elimination process that resulted in an entirely plant-based diet.
However, since those results, I’ve had a lung infection with violent coughing spells, my body has remained in continual pain, and my energy levels are in the dumpster more often than not. I did not equate any of my symptoms with the bad attitude that I’ve been battling along with depression and anxiety — until now. This realization was prompted by the thought that if remission doesn’t mean you feel better then why bother making changes.
I have been neglecting myself for months — and it’s time to stop. Remission, much like lupus, manifests itself in many ways. Though my bloodwork reveals it, I don’t feel the benefits. It doesn’t mean that I will always be in pain or need to take medications. I remember those who are living with the hero that I envision remission to be. I must keep forging ahead, not give up too soon. I hope that you will keep pushing and fighting, too.
***
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.
About the Author
Comments
Linda
Ahhh, Kellie. I so needed to hear this. I, too, am technically in remission. I do feel somewhat better. I have minimal pain and so I should feel happy except...I have no energy. None. I have almost daily low grade nausea. Not enough to throw up but enough to be irritating and no one seems to know why. Sometimes it improves when I eat creamy things or drink milk but we all know those aren’t particularly good for you.
My fatigue is hard to distinguish from low grade depression. I’m on 30mg Cymbalta for depression and for a while I thought it was helping. Now I’m not certain. I don’t know whether I needed a stronger dose or no dose at all. Perhaps my problem isn’t depression. Perhaps this is simply fatigue. How do I know for certain? Every day I wake up wanting nothing more than to go back to sleep until I have at least 10-11 hours of sleep. Then I still don’t really want to do anything. I would just as soon lie in bed and read, listen to a podcast, or watch TV. I get up and get dressed because I don’t want my husband to come home and find me still in my nightgown. I don’t feel like cleaning, cooking, doing laundry, nothing. Then, of course, I’m ashamed at having been so lazy. So the next day I will try to force myself to do something but it is so difficult and after accomplishing even the smallest task, I am exhausted and will be like that for the rest of that day and the next.
So I feel like you do. Is this the remission that I was so hopeful for? Don’t get me wrong. It’s better than being in pain but I had pictured it like getting my old life back and it’s nothing like that. Nothing like that at all...so far🤞🏼
Kellie McRae
Hi Linda, I really wish I had a solution that would work. I am a lot like you in that I try to push myself. I have often talked myself out of things just because its easier to just sit on the sofa but its not good for our minds or our bodies. I sometimes ask myself if I could pick one thing that would go away and I had to keep the others and each day I think that answer is different. I will say that from what you shared, please try to be kinder to yourself (my therapist says this to me all the time). Feeling ashamed when you are dealing with something beyond your control cannot be helped. I have often wondered if some of my issues comes from depression as well so I try to pick at least 1 thing to accomplish on my worst days and when I get it done, I celebrate. Its often not even something that requires a ton of energy, it could be something like, make a simple home cooked meal or make my bed (because we know sometimes those simple things can wear you out). I hope you get some more energy and they figure it out. Sending you comforting vibes.
Colleen Grippin
Thanks for posting so honestly, Linda! You've captured my experience so well. I was feeling particularly alone these days. I appreciate your words and Kellie's post as well.
Val C.
Linda,
Sounds like me. I have that daily, crushing fatigue and constant low-grade nauseau (enough that I actually do throw up about once per day. Very small meals seem to help)
I'm not in remission. I have a ton of other Lupus symptoms, as in I can't use my hands as the lupus has wrecked my hand ligaments. I'm in the middle of a few operations to hopefully get my fingers moving. Of course I've got pain, bad rashes, wrecked teeth, etc. Once in a while the nausea subsides for a couple hours and I feel like a new person. I think most of my depression comes from having that sick feeling all the time. No, doctors have not been able to help. I'm no guru on this but after much research I've learned dairy can really make it worss, even though it may feel comforting or soothing on the way down. Just a thought.
I sometimes wonder if the nausea comes from inflammation in our stomach or esophagus?
One more thought for you... Do you feel an extra sharp pain just under left rib cage. Mine comes and goes with what I've eaten or sometimes how I am laying down. I did actually get a CT scan for that and it has to do with the pancreas. Inflammation of the pancreas I guess. Obviously that can become extremely serious but all they did in the hospital was put me on Jello and broth for 4 days. I decided I could do that at home ...with less salt... So I packed up and left. Just another "whatcha gonna do?" moment with Lupus. Wish you the best. I see many posts and comments with lupus symptoms that I can identify with but I don't see comments about the constant nausea very often, so this really caught my eye. If nothing else I send you sympathy- you're not alone. (From, Valerie in Olympia WA)
Kellie McRae
Hi Val, Sending you comforting vibes, I hope Linda will come back and see your comments. Have a great weekend!
Kimberly Kordell
Remission, oh that word. I've been dealing with Lupus for two decades and know that remission can mean many things. What the labs say and how we feel are often two very different things. Fibromyalgia often goes hand in hand with Lupus and could explain some of the chronic fatigue and pain when numbers are good. Chronic disease depression can also cause fatigue and pain. How I understand! The fight to join the day is often the most difficult one I face. But we must or else Lupus wins.
Kellie McRae
Hi Kimberly, Yes, I am learning that the word remission is definitely not a one size fits all anymore than lupus is. I wish I'd known this before. I will say that I honestly think much of what I am experiencing is due to the depression. Since deciding to accept my diagnosis, I have not only had a great week energy wise but usually when I travel, I must take 2 or 3 days to recover. I had a loooong day of flights last Sunday, I got up Monday and this week has been surprisingly one of my best in a long time. Thank you for your wisdom, I never thought to attribute the symptoms to anything but lupus at first.