One year ago today, I woke up unable to see out of my right eye. I knew something was wrong, but I had no idea it was MS. The first weeks, I got steroid infusions, blood tests, MRIs, and met with various doctors. I learned I may have MS. Over the next year, I went on a roller-coaster ride of emotions dealing with the diagnosis process, new and changing symptoms, and treatment. One year later, this is what I’ve learned and what I would tell myself then:
MS Can Take a Long Time to Diagnosis
You want answers. I get it. But, you should know, MS can take a long time to diagnose. There are going to be lots of tests, MRIs, blood work, and months of ruling out other things. You will get answers, but it’s gonna take a while. Also, you’re going to have to get a lumbar puncture. Listen to me: lay down! Immediately, and for the rest of the day. Or days.
It’s Multiple Sclerosis, and It’s Not That Bad
When I first was sent to get an MRI and consult with a neurologist, I thought I had a brain tumor. Later, when my blood work didn’t make sense and the MS specialist wasn’t sure what was wrong with me, I gave myself a panic attack thinking I had cancer. Not knowing is the worst. If I could, I’d tell myself, it’s MS. And, MS is not as bad as you think it is. Not to say it’s not bad. I know it’s awful for many people. But, it is also manageable for many people. When you are first facing a diagnosis of MS, it is easy to focus on all the worst-case scenarios, someone you knew, not being able to work, or drive, or walk. While those are all possibilities, MS treatment has come a long way and there are many people who continue to work, drive, and be active with MS.
You Will Be Able to See Again
My first symptom was optic neuritis and I could not see out of my right eye. The letter chart at the eye doctor was a solid black square. I could not see the TV or my phone, which made it dangerous to drive and very difficult to work. In the first days, when my vision was not improving in any meaningful way, I started to worry I may not ever be able to see normally again. And, after weeks, when my vision had gradually improved, I worried it would never fully recover. I was impatient, and scared. But, over several months, my vision mostly returned. I got new glasses and my vision is slightly worse than before, but it does not impair my daily life. I am able to work with no issues. Your vision will return to mostly normal, but it takes time. Be patient.
You Will Get Used to the Injections
When I first started on a disease modifying therapy (DMT), I was doing daily self-injections. They were painful and caused me a lot of anxiety. The idea of having to do this forever was daunting. But, after a month, I was able to switch to three injections a week. And, after a lot of trial and error and getting used to the injections, it eventually became somewhat routine and less painful. I mean, it’s not a walk in the park, but it’s so much better than it was in the beginning.
Take the Pills
In the beginning, I tried to tough it out. I declined medications to treat symptoms such as fatigue and muscle spasms because it wasn’t that bad and I could manage. But, it was impacting my quality of life. When I finally accepted that I needed help and took the medication, it got much easier to live with MS.
Join Support Groups
Online support groups have been vital. I’ve gotten all kinds of tips and suggestions on how to minimize the pain from the injections, to supplements to help with spasms. Mostly, it’s such a relief to know you’re not alone. It’s comforting to share symptoms you have and learn that other people have them too. And helpful to learn that something you are experiencing is not something other people with MS experience, so it may not be related to MS. You have to talk to people who have MS!
Know When to Call (or Email) the Doctor
Don’t be afraid to talk to your doctor when you have new symptoms. It may be important for diagnosis or modifying treatment. If those symptoms are impacting your quality of life, the doctor may be able to prescribe something to help, from medication to physical therapy. But, you’re going to have A LOT of new symptoms. They may change hour to hour or day to day. And, if those symptoms are consistent with MS and not having a significant impact on your quality of life, you probably don’t need to let your doctor know every time you have a new one. But, do keep a list and give your doctor the run-down at your next appointment.
You’re Going to be Emotional
Learning you might have MS, and then that you do have MS, is emotional. You should expect to feel scared, anxious, stressed, sad, and angry. And, mood changes are a symptom of MS. During the last year, I’ve had a lot of days where I felt particularly sad or irritable, for no apparent reason. And, a lot of days where I’ve felt sad or anxious for a very specific reason. On those days, I feel like something is wrong with me. But, of course you’re going to be emotional! Expect it. It’s normal! Also, PMS is gonna be worse.
Over the last year, I have changed my diet to mostly vegan and avoided dairy, sugar, and processed carbs, most of the time. When I eat healthy, I feel better. When I eat sugar, junk food, and drink alcohol, I feel worse. Sometimes I still do this. You should know, what you eat will effect how you feel. Choose wisely. As for alcohol, let me help you avoid some misery: you can’t drink red wine anymore. Just don’t do it. It’s gonna be awful every time. Maybe a pinot noir (because, apparently it has less tannins) but even that can be hit or miss. White wine is okay, in moderation. Whiskey is your best bet, but still, don’t over-do it. Oh, and drink water. Seriously. Lots of water. And, sorry to have to tell you, but you’re gonna have to cut back on the caffeine. Switch to decaf if you have coffee after noon. I’m sorry.
MS is going to make you tired. Like really tired. Some days, you won’t have the energy to do anything. That’s okay. Rest. Take it easy. Don’t feel guilty. Your body needs to rest; the laundry can wait. Oh, and, if you can afford it (you can) hire a freaking house cleaning service. Seriously. Do it! Now. Why haven’t you done it yet?
Avoid the Heat and Cold
So, this is a weird one. Cold weather will make your hands ache. They will be stiff and sore. The heat will make you feel awful; tired, nauseous, make your vision blurry, cause hand tremors, and make muscle spasms worse. So, try to avoid getting too cold or too hot. Even hot showers will make your vision blurry and your hands feel like they’re burning. But, don’t freak out. These symptoms are temporary and will go away when your body temperature goes back to normal.
You’re Going to be Okay
You are going to learn to live with MS. You will go through trial and error. Some days will be hard. Some days will feel “normal.” You will adjust. You will be okay.
1 thought on “One Year Later”
Thank you so much for sharing your journey. The only difference in the beging. I lost sight in my left eye.
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