When you live with a chronic illness like Multiple Sclerosis, you are bound to get the question “How are you doing?” more than the average person. You know, often with that tilted head and eyes that seem to be saying “you poor thing”. This is a social grace, most people don’t really want to hear the real answer. I usually give them the standard “OK”, but I’ve started to think about what I actually mean when I respond like that. By OK, I don’t mean I’m actually OK, I definitely don’t mean I’m “good”. What I actually mean, is that I am normal. Everything is status quo for me, which I suppose I could look at as “good”, but I don’t think they would consider it good if they actually knew the details. So, what do I actually mean when I say I’m OK? And why do I even care if it’s simply a social grace?
Honestly, I’m rough
While not everyone with MS has the problems that I do (and many have it worse), my normal, everyday life tends to be filled with burning pain, life-sucking fatigue, falls, cognitive issues, and depression. That all sounds terrible, and at times it is, but I’m at this point where I’ve very much grown accustomed to this kind of life. This is my “new normal” that isn’t so new anymore. You’d be surprised what you can learn to adapt to. Life isn’t a picnic, but it has been and still could be much worse.
I’m making the best of it
I’ve pretty much stabilized under Tysabri, but years of relapses have left considerable damage in my nervous system. I don’t seem to be getting worse, but I’m not getting much better either. Until scientists can actually regrow myelin around these damaged nerves of mine, I won’t ever actually improve. I’m getting older now and know that won’t happen in my lifetime. Stopping progression is great (and if I’d have had an option like Tysabri when I was diagnosed, I firmly believe I wouldn’t be in my current situation), but it doesn’t mean I feel good. But, as I’ve said, you learn to adapt. Despite everything I’ve said, I still think I have a pretty good life because I’ve grown accustomed to and I like to think I’ve made the best of what could be considered bad circumstances.
Why do I care?
Everyone asks everyone else how they are doing, why do I care so much about a simple, meaningless, social grace? Because even though I’m OK, or rather “normal”, I’m still plagued by issues. I still don’t work, I still spend a lot of time stuck at home, and I desperately want to tell someone the truth! Yes, everything is status quo for me, but damn, I remember when my normal was a lot better than this. Even though I’ve adapted and made the best of my life, I still have times where I want to reach out and grab someone by the collar and just unload with the issues I have. I want to say, I’m really not OK, not like you mean OK. I want to admit that yes, I am struggling, and sometimes it feels like every day is a struggle, a challenge to be surmounted. I know everyone everywhere has problems. Life isn’t easy for anyone. Knowing that doesn’t make my daily problems feel any better though.
Talking is important
All of this has made me realize that it’s important to talk, to vent, to get it off your chest. I’ve said before how I think everyone with MS should have a mental health professional to talk to and this is a prime example of that. I also have a few friends that I vent to, I warn them ahead of time, I don’t expect them to solve my issues or even say anything, I simply need to tell someone that I’m not actually OK, that yes, I’m normal, I have no new or worsening symptoms, but that doesn’t mean I’m actually fine. Honestly, that helps, whether it be my therapist or my friend, getting it off your chest really does help. My point is, you can be “OK” or “normal” and still need to talk to someone, and that’s OK.
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