Scared of the Future
I know that I’ve thought about this in the past... and some of you probably have, too. I think the general population is worried about what the future might hold. But that’s reality isn’t it? However, adding multiple sclerosis, or any chronic illness for that matter, into the mix... and your worries about the future all come to you and slap you in the face, or at least that’s what they did to me.
It's okay to be scared
I can tell you that it’s okay to be scared... I’m a very strong-willed person (a.k.a. stubborn) and I don’t like to show any sort of weakness for the most part... but does that mean I never have my weak moments? No... I have them, just like everyone else. I just usually have these ‘moments’ when I’m alone. Just kind of let it all out, so I’m not keeping it all bottled up inside just waiting to explode.
Quality of life has improved for people with MS
So yeah, the future is scary. But it can also be hopeful at the same time. If you compare what options people with MS had 20 years ago, to what options we have now... our quality of life has improved and disability isn’t something we have no way to fight against. In a way it is, if you want to be ‘technical’ about it, but those that choose or have the option to take DMTs, seem to have a better EDSS score.
My neurologist said I'd never be back to 'normal'
So after a general neurologist first diagnosed me in August 2010, yes I was terrified of the future. I also didn’t have any positive outlook for the future for a while after I was diagnosed. I was in a wheelchair, paralyzed face on one side... and my diagnosing neurologist was pretty much telling me I’m never going to get better, or back to ‘normal’ ever again.
Building a relationship with an MS specialist
HOWEVER… Once I reached out to MSWorld’s Online Support group, and got a different perspective from other people with the disease, I had some hope and was really taking everything in and trying to keep notes of all the ideas sent out to me, etc. One of the best pieces of advice I received since I was diagnosed is to go see an MS specialist. Now it wasn’t like an immediate switch from negative to positive with how I felt for my future. That took a bit of time. I had to build/establish that relationship with my neurologist to finally be comfortable & less scared.
Scared for my future and my kids'
I’m not saying that my fear went completely away, that would be a lie. I still deal with it. Every time I get in that MRI machine to check out if I have any new activity, I’m nervous, scared, and anxious... but I can at least add into that mix of emotions that I’m hopeful.
I’m not just scared for what my specific future looks like, but also for my kids. I’m still hoping that I haven’t passed any sort of possibility for them to get multiple sclerosis.
Fear of the unknown
For me, it seems that I’m more fearful of the unknown in the future than I’m scared of what I know multiple sclerosis can do to someone. Do those things correlate with each other? Yes, they do; I guess my point is if we had some sort of disease map layout of what was going to happen to us on a timeline... I don’t think I would be as fearful of what lies ahead for me. Even if the things in my “mapped timeline” were vision loss, wheelchair, etc. I feel that having that forewarning would help me deal with the situation better when it presented itself.
MS surprises you out of nowhere
Now don’t take that the wrong way either. I’m not saying that I wouldn’t be upset, scared, etc. But I would rather have a warning, kind of like the Tornado Alarms that go off when a tornado is coming. You would want that warning to prepare yourself, rather than no warning at all and it just surprises you out of nowhere.
But that’s something that we could have in a perfect world... and this isn’t a perfect world. This is real... raw... painful... but it’s life.
It's just a big rollercoaster ride
Each person does not follow the same ‘path’ as each other (aka MS Snowflake). So it’s hard to give a ‘mapped timeline’ for people with multiple sclerosis. It’s just a big rollercoaster ride... you just better sit down, buckle up and keep your fingers crossed.
Don't compare my MS to something else
I guess that’s why I don’t like people comparing my multiple sclerosis to something else... Don’t compare the disease I’m living with to something that has a common ground and people go through each of these phases and prepare themselves for that... And then they get better, and then get past it. I don’t have that option. People with multiple sclerosis DO NOT have that option. As of right now, multiple sclerosis is a Life Sentence... Pretty sure I’ve discussed this in the “You Can’t Compare” article, but oh well.
Diseases can't be compared
I’m not trying to do a comparison of what disease is worse than the other one, etc. Cause they are all horrible to be diagnosed with and change peoples lives but if they were all the same, there wouldn’t be so many different diseases, even specifically neurologic diseases. They are all named something different, because they aren’t the same thing. Can there be similarities? Yes, of course... but that’s doesn’t make them identical.
Wow, I’m ranting aren’t I? See what this does to me... it gets me all worked up. But I’m passionate about it all. I have all of you readers that will message me on here – or on Facebook or Twitter, thanking me for putting in words what you’re dealing with... and I appreciate that to no end. I keep writing because of the readers that have reached out to me, obviously... but it started out a way for me to vent, and that’s always the main reason why I speak out for people with MS, for people like me.
I’m going to end it on that note, for now at least.
How many specialists did you see before finding "The One"?