MS & The Blues
Have you been having mood swings lately or feeling like whatever you do just isn't good enough? You're not alone.
Constantly taking two steps forward and one step back
I have days that I am highly motivated and I accomplish what I set out to do. Sometimes I am able to string several days in a row together feeling pretty good about myself and what I'm doing. All of a sudden it hits me like a ton of bricks. I'm fatigued and sore and have absolutely no motivation. I sometimes fall into a funk where I question everything that I'm trying to do and accomplish. I get depressed for no apparent reason and want to give up on projects around the house and public projects. I feel like I'm constantly taking two steps forward and one step back. I hit that wall and I'm forced to rest and have very limited movement.
Accepting my new abilities
After I spend a couple of days resting and beating myself up I usually snap out of my funk and start pushing forward again. I have to constantly tell myself that I'm enough whatever I do, as long as I keep moving and doing what I can. I have been a musician and artist for most of my life and my hands have made it so hard to do either of those things. I find it hard to accept that. I find other things to focus on now like blogging and things around the house. Does that mean I'm going to give up on art and music? No, I'm just not making them my primary focus. I only try to make music now when the conditions are in my favor. Just like yardwork or anything else. If I am not up to it that day it's just not going to happen that day. It doesn't mean it won't ever happen again but if I don't occasionally try nothing will happen.
Trying to make the best of it
You're not alone if you get feelings like this. There is not a clock on me anymore. I accept each day as it comes and test the waters. I still get frustrated and upset sometimes but I understand that right now that's just part of the process. I struggle with this but I know others do too and no one is waiting for me to change the world. Yes, I wish it wasn't like this for me but it is and I have to make the best of it because I do still have dreams and I'd be cheating myself if I just gave up.
I've gotten touchy about social media
The longer I've had MS it seems that I've gotten touchy about things I see on social media. Someone's post about being tired or a sick day and how horrible it is. I overreact and think suck it up and stop complaining. At least you know your little belly ache will go away. My issues are so much worse and some may never go away. I deal with pain every day and rarely say anything. I shouldn't let it get to me but it does. I'm jealous of your situation vs mine. I don't feel like even holding a phone much less complaining on those days.
Others don't understand MS
Has someone tried to compare what you're going through with something trivial that isn't even in the same ballpark? You just need rest. I'm really tired too. Man, that irritates the crap out of me. I have to remember they don't know or understand about MS. I try my best to ignore it now but boy is it hard. I cancel plans and most of the time I don't even try to make plans because I know it's a gamble for me and some people have given up on me showing up in the past. I would love to be my old self before MS but in my case, I'm just not.
Focus on what matters - you
Just because I am struggling with all of this doesn't mean that I have given up. My victories are small and I don't feel the need to brag because I tied my shoe one day. It was huge for me but not impressive when it comes to the guy with MS that just ran a marathon is it? Sure it is! There are many more stories that need to be told. Any victories with MS are worthy accomplishments and all of our stories are different. Don't compare yourself to anyone else and focus on what matters, You. You matter and your feelings matter. Yes I want to see my friends sometimes and sometimes I don't want to see anyone but it's hard for them to understand. All I can hope is that they all don't give up on coming by to see me or inviting me to do something. Just because I can't go right now doesn't mean I don't want to be included anymore.
It's normal to have these days
There's a lot going on in people with MS and others not understanding is probably our faults for not sharing everything. I hold a lot in and it eats me up. So, on behalf of the others battling MS that have similar feelings but aren't ready to say anything yet. You are not alone and it's normal to have these days. I know that I will have great days also occasionally and maybe even more great days than bad days eventually. That's why I'm saying this now. You're going to have terrible days but it's how you react to those days that really matter. Everything else is just a distraction that can make it worse if you let it. It may feel like you have no control at times and you very well may not but at some point you will. I believe that and I have experienced both. Share this and let me be a voice that is heard for anyone struggling to find the words.
MS is a daily battle
We are not all the same and sometimes lose ourselves in this disease but we all want to be the best we can. We would love to feel normal again. Sometimes we need help but we're too proud to ask for it. We are human and we still have dreams and goals. Please understand that much. Please try to see us as individuals and not a stereotype. MS is not one person and it's nothing like you can imagine. It's a daily battle for some if not most of us. It's a different kind of bad day when you hear someone with MS say that. Being positive and staying surrounded by positive people is part of what I have to have. I have to believe things will get better even if they don't for a while. I have to stay positive but I have to understand I'm not always going to be positive. Confusing for sure but that's MS. At least that's my MS.
Do you celebrate your MS Anniversary?