I’ve said that I want this to be a positive space, but I do want to be transparent about how I’m feeling–and sometimes, it’s not great. It’s helped me a great deal to read other people’s accounts, and I think it’s helpful for my friends and loved ones to know how I’m doing without feeling the pressure of having to ask every time they see me. I’ve been told that the first year after being diagnosed with MS is really, really difficult and I’d be lying if I said that I’ve been dealing well with my diagnosis and subsequent symptoms.
It’s been 8 months since I was diagnosed with MS. I’m still so new to this, but I well and truly believed that I would be TOTALLY FINE with everything at this point. You see, when I was diagnosed, I knew enough about the illness to know that it wasn’t a death sentence. I am young and healthy and I didn’t have much evidence of prior disease activity, so after the initial shock of the diagnosis, I figured that life would go back to normal and that my MS would be nothing more than a mild inconvenience. I didn’t think that it would be something I would have to manage daily beyond having a flare every few years.
When the doctors told me that I had RRMS, I immediately focused on the word “remitting”. When you hear any variation of the word “remission,” you think of a complete recovery. At least, that’s what I heard. Once I had recovered from my flare, decided on a course of medication, and made some “lifestyle changes”, I figured that all of my nagging symptoms would disappear and I’d feel great.
That’s not what has happened. Let me preface what I’m about to write by saying I feel so much better than I did at the beginning of this year, and I’m in a much, much better headspace. However, I’m still learning how to navigate this illness and figure out what I can and can’t do. It’s hard for me, because I feel like I spend so much of my time thinking about this disease and worrying about what it means for my life, that I’m not focusing on anything or anyone else. I worry about what this means for my family. For my son. I’m always tired. I’m constantly questioning if what I’m feeling is in my head, or if it’s a real thing that’s happening. I really struggle with the fact that I look completely fine on the outside, but on the inside I feel awful. I don’t want to get out of bed a lot. I usually don’t feel like socializing. I don’t want to be a burden or a sad sack, so when people ask me how I’m doing, I say “I’m fine”. Except, I’m not–not really. Here are a few things that I’ve had to worry about since my diagnosis:
- Never knowing when I’m going to burst into tears. I definitely don’t feel entirely stable.
- Not being able to feel my bladder and peeing myself.
- A limp thanks to my left leg and foot not working (this happened relatively soon after my diagnosis and scared the shit out of me on a family trip to Florida).
- Going from standing to falling because my left leg crapped out on me. Think of a cow tipping over–that’s what I looked like.
- Losing my hair due to stress. I’ve lost so much hair, my scalp is now visible in parts.
- Losing a ton of weight due to stress.
- Not being able to remember anything.
- Losing my words or having to concentrate really really hard on what people are saying because my brain isn’t working. Not being able to form sentences or being unable to access the correct word sends my anxiety through the roof and makes me awkward, which makes other people uncomfortable. This especially seems to happen when I am around more than 2 people at a time, so I prefer to stay away from people altogether.
- Tripping over nothing.
- Not being able to see well out of my left eye.
- Feeling drunk because I can’t see out of my left eye and it upsets my equilibrium.
- Not knowing whether or not I’ll be up for doing something until the day of/being unreliable.
- Constant fatigue.
- Dizziness and vertigo.
- Trying to “push through” my symptoms and paying for it for days afterward.
- Daily pain/numbness/tingling.
- General left side weakness.
- Insomnia
- Depression
- Exacerbation of all of the above due to heat. As I write this, I’ll remind you that it’s currently summertime.
Needless to say, I’ve been in a not-so-great way. A bad way, actually. I didn’t realize how much I was keeping to myself until I sat in my doctor’s office a few months ago explaining all of the above occurrences to him and trying not to sob uncontrollably. I cannot accurately describe the relief I felt when he told me that everything I was feeling was not just in my head. I thought I’d been doing a great job of processing my emotions, but it turns out that I had just shoved them so far down that I couldn’t access them.
I walked out of the appointment with a few new medications to treat some of my more persistent underlying symptoms (nerve pain, MS-induced insomnia, and depression to be exact), and a much more positive outlook.
So: how am I doing at this moment in time? I’m still struggling. Every day is still difficult for me–whether it be emotional or physical, but I’m learning how to navigate the world in my new body. With each day that passes, I become a little more hopeful and a little more confident. I’m learning to ride the wave.
In health,
D
Living in Color 