I Have MS

This might be the most difficult post I will ever write. This month has been brutal, to say the least. And I honestly hated being away from Adventures of a Bibliophile for so long. This has been my life for four years, and to not be able to read or write for the last few weeks was basically torture. Right now, I am writing this with a very attractive piece of medical tape covering part of my glasses lens, because that’s the only way I can see clearly (go figure). I know I don’t owe you this post. I know I can choose to not share this part of myself and just go on as best I can. But I want to share it with you, because I know there will be some changes coming both in my life and this blog. And I don’t want to hide.

I have multiple sclerosis.

And yes, it sucks. A lot. Right now, I am having trouble seeing things clearly. I can’t read much or drive. I’m wobbly when I walk. This morning, I fell over trying to slip on a pair of shoes while not sitting down. I was exhausted after spending twenty minutes in Target. I can’t sleep on my back without getting super dizzy. My arm hurts if I hold a pen for too long. My handwriting is sloppy and the number of typos I’ve made in the past couple of days is making me crazy. When I smile, the right side of my face scrunches up so much I look like like a lopsided Joker. And when I laugh, it’s even worse. My spine aches randomly. My bones feel weird. I’m now that person who looks mostly okay, but still has to take the elevator to the second floor because I can’t do stairs right now. I got out of breath trying to find my boots in the back of my closet. Sometimes it feels like there are bugs on me or I’m suddenly really itchy for no reason. And I can feel that, once in a while, my brain is just not working as well as I feel like it should. 

Just this past week, I’ve dealt with (not) fun things like an emergency MRI, three ophthalmologist appointments, many consultations with neurologists, brain lesions, a botched injection in my arm, and the possibility of spending Thanksgiving in a hospital bed being injected with enough steroids to put me out of commission for weeks. I’ve had to come to terms with the fact that I’m now considered disabled. I am perfectly healthy (as proven by the many tests I’ve undergone in the last week), except for the fact that my immune system is attacking my nerves. 

It’s been difficult to come to terms with. Because, if I had a choice, I would give up any part of my body that is not my eyes or my brain, without hesitation. I would rather not be able to walk. Or not be able to hear. All I want to do is be able to read comfortably and use the mind that I have taken pride in improving for so many years. It is hard to accept that my vision might not be completely okay. Or that I’ll have times when I can’t think as clearly as I used to or remember the right word (or how to spell it). Being intelligent and being a reader are such huge parts of my identity that I can’t comprehend ever having to sacrifice any part of that. But it’s something I may have to deal with. And that hurts even more than the physical pain. But I won’t let it define me or defeat me. 

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it. – Maya Angelou

Honestly, I’m mostly okay. This could have been so much worse. Yes, I have brain lesions. But I don’t have cancer. I have something that is going to make my life more difficult, but it is not going to take my life. And I am really lucky. Because I have a lot of doctors who are going out of their way to help me. By some crazy coincidence, I actually work in the one of the top neurology departments in the state of California. Every day at work, I see some of the best doctors who specialize in this condition. And the second they found out, they dropped everything to get me the best treatment as soon as possible without me even having to ask. I have a doctor who called me at 9:30 on Friday night to let me know the results of my MRI so I didn’t have to wait until Monday to find out. I have doctors who have called in favors, made special time to see me, and consulted with as many other doctors as they thought could help. And my dad convinced me to change to the best health insurance plan my company offers this year, so I’m glad that ended up working out. 

To be honest, it’s kind of a lot. There are just a lot of doctors involved, and it’s kind of crazy. It’s weird sitting at work knowing that, downstairs, there are doctors looking at scans of your brain. It’s going to be a challenge to have everyone constantly asking about my condition when I really just want to work as normally as I am able. But I know how fortunate I am to have so much. I know I could be waiting months to see a doctor or not be able to get the treatment I need. I just don’t want to be the person with all the doctors appointments and the medication. But this might be my reality now. 

I am not writing this post so that you feel sorry for me. In fact, the one thing I am dreading most is all of the sympathy. This is not something I did to myself. It is not something I caused or could have prevented. It just happened. Yes, it’s hard. But I want to get on with my life as best I can without having everyone constantly ask if I’m okay or tell me how sorry they am that I’m in pain. There are times I feel broken. And I have to adjust. But I refuse to give up.

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward. – Martin Luther King, Jr.

I am writing this post so that you’ll understand if I have to stop posting for a bit. Or why this blog might not be as active as I want it to be. I’m writing this post to give you a glimpse into what I’m going through. Because I feel like bloggers sometimes go through a lot behind the scenes, and I don’t want to hide something that’s going to be a part of my life from now on. I’m going to have to take breaks and work harder to run this blog, but it is not something I am willing to forfeit. Stepping back for two weeks just proved how hard it would be to stop. So I’ll be here, just maybe not quite as much. 

And I also just wanted to share what it’s like to have MS. I know I’m in the beginning of this, and there is a lot I still don’t know. I don’t know how my case will progress. I don’t know what my body will feel like a year from now. I don’t know when my eyesight will fully return or when I’ll feel comfortable reading again. I don’t know when this particular attack will end. But I’ll get there. And if you have any questions, or if you have MS, too, and have advice to share, I am more than happy to discuss as much as I can.

Really, thank you all for your support for all of these years. This blog and all of you mean so much to me. Thank you for continuing to support me even when I’m not always here. And thank you for your understanding as I move forward and figure out to live and read and blog with MS. 

Love, Stephanie

Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten. – Neil Gaiman

33 thoughts on “I Have MS

  1. Stephanie, can you listen to Audiobooks? Will they help? And will using speech to text help you to post?
    Thank you for sharing your life, you are very brave and you are my inspiration… You have helped me in finding my courage. I hope the docs help you on finding your new normal…

    Liked by 1 person

    1. Thank you! I have been listening to audiobooks as much as I can the past few days. My concentration is not great right now, so I can’t listen for too long at one time. And I do have a temporary fix for my glasses so I can read a bit and write. Great suggestions, thank you!

      And I’m so glad to hear that I inspired you! That means a lot to me. I’m doing okay now, and have hope that it’ll get better.

      Liked by 1 person

  2. I can’t imagine how difficult it must be, and sympathise with your frustrations when you can’t do things quite the way you did or want to. I know that I love your blog and will keep reading no matter how often you post. And I think it’s great that you shared such an honest story about what’s going on in your life ❤

    Liked by 2 people

  3. Dear Stephanie, thank you for writing this post, and sharing a glimpse of your life with us. I didn’t know how much blogging meant to me until I went through a hellish time last year, but I’m so grateful now for the support I received through this unexpected medium. Whatever we can do for you, we will.

    Liked by 2 people

  4. I don’t have advice to offer, but I have chronic health issues, too. I know how difficult it is to learn to cope with it all. Sending lots of love your way. ❤You’ve got lots of support from those of us in the blogging community.

    Liked by 2 people

  5. I can’t imagine getting this diagnosis, but I am happy to see your strength come through in this post. And thank you for sharing this post and letting us see a little behind the scenes 🙂

    Liked by 1 person

  6. Thank you for sharing what I am sure is very difficult for you. This life of ours always presents challenges, doesn’t it? I have been using a free speech to text app for the Chrome browser called Speechnotes.co. It’s really helped me to up my productivity because I am not able to type very much due to an injury. Perhaps it might help you?

    Also I have a dear friend with Parkinson’s disease. She was diagnosed at age 32. She has set up a non-profit called neuroboxing.org which provides exercise classes and other services to help individuals with this condition. I know that MS is different from Parkinson’s, but she has told me that similar conditions can benefit from forced, intense exercise such as boxing. I am sure that you are dealing a lot right now but perhaps this is something to look into at some point.

    Liked by 1 person

    1. Thank you for the recommendations! My neuro-ophthalmologist found a temporary fix so I can type a bit better for now. And my coordination is off at the moment, but it looks like this attack will pass eventually.

      Boxing has always sounded fun, and neuroboxing sounds really interesting! It’s a bit far from where I live, but not too far that I can’t give it a shot. My dad actually has Parkinson’s and a lot of the symptoms are very similar. Maybe it would benefit him, too.

      Thanks so much!

      Liked by 1 person

  7. Thank you for sharing what is going on in your life. You’re so right – it is not a death sentence! It is frustrating and difficult but …. Auto-immune illnesses run in our family and my uncle had MS. That was years ago and I’m constantly amazed at how far the treatment has come along. It sounds like you have a marvelous support system there and you have us, your online friends, as well. We will be here for you whenever you write and hope that will be more often than not. Stay courageous!

    Liked by 1 person

    1. Thank you! I am definitely planning on keeping up writing as much as I can. My life just isn’t the same without it. It looks like there are some good treatment options, and I’ll find out if there are any I can try next week. My online friends are a huge source of support, and I cannot thank you enough!

      Like

  8. Stephanie, I’m sending you all the love and light in the world. I know you don’t want sympathy, but this just hits close to my heart because my grandma was diagnosed with MS when she was only 16, but she’s honestly the strongest person I know and I love her so much. And she’s also the most determined person I know. But seriously, if you ever want to scream into the void about it, or just want someone else to talk to, I’m always here – just DM me anywhere.

    But thank you so much for sharing something so personal. And never let anyone make you feel pressure to blog, but I smiled so big when I saw you had a new post on my timeline! Happy reading, love. 💛xx

    Liked by 1 person

    1. Thank you so much! I can’t express how much I appreciate all of the support. I’ve definitely been going back and forth between sad and angry and determined, but I think I’m actually doing okay. I have a lot of support, and I’m still standing. My heart goes out to you grandma – that’s such a young age to get that diagnosis. I’m almost twice as old and I’m having a hard time. Glad to hear she stayed strong!

      And, don’t worry, the only person putting pressure on me to blog is me. I just hate when I can’t put energy into something I love. Glad to hear you enjoy reading my posts!

      Liked by 1 person

  9. I’m sorry to read about your diagnosis, it’s such a lot to take in isn’t it? I don’t have MS but my medical condition causes upper motor neurone deficits so I have a lot of the same symptoms as MS and it’s taken some getting used to. I know it doesn’t help right now while you’re still coming to terms with the diagnosis but over time I’ve found new ways to do things and ways to adapt – there are a lot of things out there that can help you with the physical difficulties. Right now though just give yourself all the time you need to get your head around what’s happened. I recommend listening to audio versions of books that you already know quite well so that it doesn’t matter so much if your concentration drops but you still feel like you’re reading. Sending you hugs. x

    Liked by 1 person

    1. Thank you so much! I know there are a lot of other conditions that present similarly. It’s definitely not easy. But I’ve been having symptoms for a while, so it’s almost easier to come to terms with because everything suddenly made sense.

      I’ve been trying to listen to more audiobooks, but revisiting an old favorite is a great idea!

      Like

  10. I am SO sorry to hear that you’ve been going through this and I’m in awe of your courage for posting something so personal. That must have been so difficult to process and to write and, even though it’s probably small consolation, I really hope that you know you will have plenty of moral support online when/if you want to reach out to people. *sends hugs and good vibes*

    Liked by 1 person

    1. Thanks so much Emma! It means a lot. I know I have a huge support system here and it has helped me through a lot. And while this was difficult to write, I felt a lot better doing it. I feel so much better getting it out there and getting such wonderful responses from so many amazing people.

      Liked by 1 person

  11. Stephanie you are truly amazing!! I won’t give you any sympathy (because you said you didn’t want it) but I just wanted to let you know that we are all here for you! It sounds like you have an amazing system of Doctors around you and that is great, but you also have the amazing book community and no matter how little you post, your blog will still be read and appreciated! Keep it up and hang in there! ❤ Thank you for sharing this, its super true that you never really know what is going on behind the blog, and I am glad you chose to share this glimpse into your life.

    Liked by 1 person

    1. Thank you! This community has gotten me through a lot, and I know it will help me through this now. It still blows me away with how amazing everyone is. Even though I don’t have the energy quite yet to write as much as I want to, I’m still working on planning my December posts and am looking forward to getting back out there as much as I can. Because being a part of this is easily one of the best things in my life.

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.