Well it seems the worst of that flare is behind me, thank goodness. After 24 years with Spondylitis, I didn't know it could get that bad - with a fever and everything. The fever really hit something home for me: my body is attacking itself. For all of those fellow sufferers, you may be thinking "well duhh, it's an auto-immune disease" and logically? I know that. I've always known that. But the fever was this weird, very real reminder that my entire body is actually foreign to itself. As you can imagine, that comes with certain emotional ramifications.
For all intents and purposes, I think I'm a good egg :) I've come into my own over the past few years and really know myself more than ever. I know what kind of mark I want to leave on this world and I think I've already begun. I like myself and I'm confident that people like me. I know I'm worth sticking around for (something that I always struggled with), but there is something about this auto-immune business - the fact that my very body rejects itself - that makes this acceptance a bit difficult at times.
The 20s are supposed to be this time of self-discovery, right? Learning and growing and building a life of your own.. a career, lasting relationships, a name for yourself, that sort of thing. So while it's supposed to be an exciting time (and mostly it is), it also seems like a lot of pressure. Fighting illness simultaneously makes it even more complicated and, as I was sitting around this weekend fighting off tears, I had some tough thoughts about myself: So if my body thinks it's the enemy, was I some cosmic mistake? A rough draft of sorts?
Silly, I know. Oh where oh where has that confident-sounding blogger gone? But that kind of pain tends to send your mind in all kinds of directions, unearthing insecurities you didn't even know you had. I wish I could put my mind on pause during those times. I wish I could just relax and be kind to myself like I would with anyone else going through the same thing. I wish I could trust that the flare will end.
The truth is, I don't know what I'll be able to do in a few years. I don't know if the stresses inherent to social work are in the cards for me or if I'll be completely independent financially. I don't know how much I'll need to rely on others or if I'll ever be well enough to create someone who can rely on me. I don't know what my body will face or the course this disease will take. But, at the end of the day, who really knows these things? Life is unpredictable just like disease and what I do know is that I know myself. I believe in myself and that means a lot. I didn't do a great job of holding on to this truth during this latest flare, so the trick will be remembering that through the good, the bad and the ugly....
A big thank you to all of my wonderful readers that sent words of encouragement during a tough week. I feel very lucky to have you.
Love,
Posts
Let me just reaffirm. You are no mistake, cosmic or otherwise. You are gift to all who know you and who are able to be with you. You are loved greatly!
ReplyDeleteM
I am sorry about your recent flare but I am glad you feel better now. The egg analogy does make sense. Don’t doubt your capabilities. The days with flares are minor setbacks but they are not brick walls. Insecurities come with flare ups and we all understand that it can be hard to be positive when you are hurting. I try not to blog when I am hurting because the frequenters of my blog somehow know. You have every right to worry about the future but do not let it set you back.
ReplyDeleteM - I love you so much :) Thanks for that...
ReplyDeleteLana - thank you for the support and important reminder that insecuritues are universal. Would you mind elaborating on why you choose not to blog when you're hurting? In my mind, I really don't think it's a bad thing for readers to know and to be able to be there for you. It's not an easy decision to blog when I'm hurting, but that's my story and I've vowed to share it. I've found that my readers respond most to these types of posts because it's the hard illness-related feelings that people need to connect over. I'm just curious to hear further about your take on it. That being said, I really value your work and am an avid reader of your blog :) Your style really works for you and I learn A LOT from you.
All the best,
Maya
i am so sorry that you had such a rough week, but i am glad to hear that you are doing a bit better now. you are a totally awesome person and i am so glad to have met you out in the real world. xo
ReplyDeletemy sweet maya, life and this disease are so unpredictable. in bad times, i have also been inclined to give up on dreams. there have been weeks i have ruled out grad school and decided we need to sell our 2 story home and get a ranch. always, i have found a glimmer of hope--whether through new treatment, new friends, old friends, family, my boys, music. then i realize the future is unpredictable so that doesn't mean that i will be disabled in 20 years. there could be a cure. or at least a very effective treatment that works. xoxo
ReplyDeleteThank you for the love, Betsy, and the good reminder of those glimmers. Now, as I'm feeling like myself again, i see them everywhere, all the time. Even in my worst times I didn't let go of all of those things I'm so blessed to have. Please know that I feel very lucky to have a new friend like you - we keep things in perspective for each other, huh?
ReplyDeleteNever a mistake.
ReplyDeleteBut I understand how you feel, just last week I was having a bad, painful day and my husband jokingly commented that I was "withering away" which sent me into tears for the next hour or so because it is exactly how I felt.
... and never give up.
I only have 1 more year before I graduate from nursing school. I suffered for years before I was diagnosed (on the same day I was excepted to nursing school) somehow I got through that and I know deep down I will get through this next year.
Just wanted you to know you are not alone, sometimes we all have these thoughts.
I can totally relate to this feeling you had during your flare. Like you, I really like myself but sometimes the pain takes over our minds and we go into a different reality. Luckily we are both confident and our sense of self returns. With or without RA, we have a lot to offer this world.
ReplyDeleteThanks for sharing this recent feeling. Although I hate for you to feel this way, it does help knowing we aren't alone on this journey and that it is normal and okay and have our feelings go up and down.
Enjoy the time off from the pain. Smile....you do that so beautifully!
Katrina, thank you for your understanding during a hard time. I vowed to never give up a long time ago and people like you make it easier to stay motivated. You'll be a fantastic nurse.
ReplyDeleteCathy, As always, you know just what to say. It's good to know I'm not alone, but I'm sorry you've gone through similar feelings. Your support means so much to me.
My partner, who lives with constant pain, and has lived with pain since her pre-mature birth, then a head-on car carsh at 22, on and on, just keeps compiling (she is 53 now), wrote a beautiful and moving story during one of the worst periods in her life. It was published in a literary journal and moves me to tears every time I read it. It also shows hope, love and when you know how she suffered during the writing, well, very powerful and I believe inspiring to others who suffer so. I have MS and I try to post every day on my blog, it is very difficult many days but that itself is something I hope my readers take away..."if she can do it..." I admire you greatly.
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