So, I’m about to head into a new phase of my MS fight. New insurance. New hospital. New Neuro. New, new, new. Exciting, yes! Frightening as well. That was made clear by my wonderful wife (She really is. That isn’t sarcasm. She tells it like it is. No sugar coating.) when, after we got the news that I was accepted into the very coveted Vanderbilt Neurology/MS treatment program, she reminded me of something.
While we both, of course, were excited by the news, she stated, “Don’t get too excited. You have no idea what they are going to do to you!”
Very true! And although it might seem callous or mean to some outsiders, it is terribly important to stay grounded in the reality of dealing with and getting treatment when living with a disease like MS. Yes, it’s important to stay positive with one’s state of mind, but it’s also imperative to not set your hopes too high. After all, it is an incurable disease, at this time. (I hope in the future, that will change.)
With the strong possibility of my treatment/medication changing along with these new situations, I decided to join several MS pages on Facebook and Twitter. At first, it was great! New insight from a huge base of individuals with just as many different stories. The problem is, once you join, you start getting all of the notifications. 90% of which are people struggling, having those dreaded bad days, or recently diagnosed, and scared as hell!
I know, I know. Not really surprising when you think about it. Still, it caught me off guard. I was not prepared for the deluge of “I don’t want to get out of bed/face the world.” stories. Stories of unwarented bruising, migraines, numbness, optic neuritis (The symptom that caused me to initially go to the doctor, which led to my diagnosis.), muscle pain/weakness, etc. Frustrated people dealing with misery similar, but not exact to mine. We do all have the same disease, yet each one of our daily struggles is different. It’s the nature of this MS beast.
I encountered several on-line conversations like this:
Person 1: “Does anyone else deal with exhaustion after taking a shower?”
Person 2:”Yes. I do. But I’m also half blind by the time I’m done with a shower.”
Person 3: “I can’t even take showers anymore. I take baths. They seem to be less stressful on my body, and I don’t have to burn energy trying to balance while standing in the shower.”
Person 4: “Yes! Take baths! It’s safer, and it’s better on your body!”
Person1: “I have no choice. I live in an apartment with only a shower. I have no way of taking baths.”
Person 3: ‘Move into someplace that has a tub so you can!”
Person 1: “I can’t just move. I don’t have a lot of money. I can just barely afford to keep this place, since I lost my job, and I’m still waiting on trying to get disability! Ugh! I just want to die.”
(Several lines of talk between persons 1, 2, 3, and 4. Others sporadically interject as well, before finally, waaaaay down the page:)
Person 9: “Buy a shower stool. They are cheap, and you can just sit on that so that you don’t have to stand or balance.”
Eureka! Finally, a logical, simple remedy to a problem. Of course, this could turn out being hours, even days, after the initial inquiry. And that’s if you were diligent enough to decide to stick with the chat thread!
I know I have made a short story long, here, but my point here is, be prepared. Yes, the chat groups are a very good way of feeling less alone, or getting a little support from people who understand. Just don’t think they are going to be an end all, be all info hub on the subject. It can be very difficult to read story after story of misery and struggle without it bringing you down. Remember, these are other people that are possibly just as lost as you are, or are looking for the exact same answers you are. Those answers don’t always come.
On the flip side of this: If you are strong minded and resilient, you might be able to help someone else. Keep an eye on the MS chat threads. Just don’t live there. Misery does seem to gravitate to itself. But as to the ‘love’ part of the classic saying? Nah. I don’t even think misery itself loves the company of more misery. It simply knows and understands that scene.
In conclusion, (I’ve always wanted to say ‘In conclusion’! It makes it sound like everything before is very important, and what’s to come is even more so. Neither is the case here.) tomorrow is the Fourth of July. Heat index outside is supposed to be in the triple digits, here in Nashville. Needless to say, I will not be cooking out, picnicking, or going downtown to watch Nashville’s fireworks display in that kind of heat. I will be a slave to air conditioning, as usual, in this weather. So, for those of you that can, raise a drink, give out a hearty ‘Merica’ shout, or state an ‘Ooh’ or an ‘Aah’ during the fireworks show for one of us who can’t. Have fun and be safe!