So you had some big news this week, huh? (Well, maybe you didn't GET the news this week, you just shared it this week. And your mom totally bawled about it on TV this week.) As a person who has been through this whole MS diagnosis, I know what you're going through. I have a few words for you, advice, etc., that can hopefully help:
1. Why Now?
Your most quoted sentence in the articles: "Why now?" I'm sure the doctors have given you some reasoning, but not much, and that's because they don't know. It's probably a little bit stress and a little bit fate. From what I understand, you just became a daddy, and while that is incredible and beautiful, parenthood can be stressful, and that's what can set off a flare up. But that's not the only cause. Last time I ended up in the hospital, the way it was explained, the issue was already there. My immune system was eating away at my spine, and there would have been symptoms at some point, but the stress I was under just made those symptoms show up at that particular time in my life. Be grateful that it happened when it did. You can't change it. And would you want it to have been earlier in your life, when you were at rehab, or before you met your fiance? Would you want it to be later, when your new baby would be old enough to be just as afraid as you are right now? It's not a perfect situation, but you can be thankful for the timing, and see the best in it.
2. Learn as much as you can.
There is A LOT of information out there. Ask questions. You, especially, have the resources to explore all your options, so do so. There is a lot of talk of alternative therapies, but for people like me, those alternatives are risks that can't be taken. I don't have the luxuries of time or money to try out some interesting holistic therapies, but if I did, I would check them out. (Some of them I could try, but refuse. I WILL NOT GIVE UP DAIRY. I love it too much, and there's no proof that diet really works to change things. This doesn't mean someone else shouldn't do it, it just means do what works.) ALL the medicines suck. You just have to choose the one that's right for your situation, and change it if it's not working. Respect your doctors' opinions, but feel free to challenge them. The more informed you are, the better you can feel.
3. Stay away from the internet!
I recommend this for all people with chronic diseases: whenever possible, step away from the web. You need to learn to limit your internet reading. It's good to read up on the side effects of your medication, or on possibly symptoms, but don't overdo it. It makes you crazy.
4. Know yourself.
I wrote a blog post about this a long time ago, but it still holds true. You know your body and your mindset the best, and you will be the only person who will know when something changes. Pay attention to those changes, keep track, and share that information with your doctor. It will take time and repeat symptoms to know (for example) if your headaches are from MS or from vision or dehydration, or some combination of those, or something else entirely. You have to rule out all other causes before you can blame the MS, and you can't rule out causes until you learn to know what's normal for you.
4. SIMPLIFY and be happy.
It's the most ridiculous advice, I know. You can't will yourself into happiness. And at the beginning, it's REALLY hard. I was 24 at diagnosis (you can read the story here, if you want), and had a very, very hard time seeing myself anywhere but on my way downhill. Take the time to get to know yourself, what makes you happy, and what gets you worked up. And then do the happy stuff and avoid the worky stuff. This is not always doable, but if you make an effort to simplify, it will not only decrease the stress, it will decrease the fatigue. Drama is exhausting. Skip it.
I'm not sure if this information has been helpful or not, to anyone. Advice is not always useful, especially unsolicited advice. But I mean well. It's important to know that there are good days and bad days. And it can always get better - your symptoms will come, but they will almost certainly go. Patience is important. Lean on someone when you need to. Stand on your own when you can. Good Luck.
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