I did two surveys today that related to MS. I've been trying to get more "active" in Volunteering for things to "help" with MS, I am a Peer Support Volunteer and I have been doing some surveys and other things online for research purposes. And today just sort of overwhelmed me.
I hate being asked how much MS "interferes with my daily life." It's an impossible question. For one thing? I don't really remember/think about life before MS, because there is no freaking point. MS is a constant part of every single thing I do in every single aspect of my life. I can't get rid of it, I can't change it... But I also can't focus on it and try to quantify its impact. I still do what I really want to, even if I know it's going to be hard or even if I know I'm going to pay for it later. So how do you qualify that?
How, exactly, do they intend this question to be answered? It's not even an essay question, it's a freaking 10 point scale. Is a 1 something like "The doctor said I had MS, but I have zero issues and usually forget"? Is a 10 something like "I am confined to my bed and cannot even feed myself"? What is the scale? What are they looking for? It's blatantly obvious that this survey was not written by someone with MS and was, in fact, not intended to be answered by someone with MS. Because really? How are you supposed to answer a question that is so ambiguous and so upsetting?
I know that taking my kid to the park or the beach or hell to the store is going to have consequences. But that doesn't stop me. I know that staying up late to try and spend some time with my husband is going to have consequences. But that doesn't stop me. I know that everything I do, other than lay in bed with the fan and air conditioner blasting is going to have consequences. But that doesn't mean that's where I spend all my time.
So where does that fall? Where does "It impacts what I do on days when the temperature is above 70*, but I don't let it fully dictate my life because I am a stubborn bitch" fall? What number is that? What number is "I have to plan my day in order of what is most important to accomplish, because I don't want to unexpectedly run out of energy when I know I have the whole day left"? Can someone please explain this to me?
MS sucks. And? I don't know how to quantify it or qualify it or explain it. It is what it is, and my life is how it is. If I were to focus on my limitations or the things I couldn't do I'd have no kind of life at all. So instead I don't think about it. I do what I do and I push myself until I can't push anymore. Where is that on your scale? And where's the "I push even when I can't push, until I'm able to collapse in to bed and can't even cry about it?"
Because this is my LIFE. This isn't hypothetical. It's not a matter of eating better or trying harder or being stronger. It's a matter of what makes life worth living. And making life worth living means ignoring so many things and just trying to do the absolute best I can for my family. Dealing with pain is easy. Pain can't kill you. But not being a good mom? That would kill me.
There is no scale for this. This is not a yes or no question. My very essence cannot be quantified for your drug study or your study about the impact of MS on the emotional lives of those who live with it. Because I'm not going to sit here and put on a brave face about it, but I'm also not going to sit here and cry and beg for a miracle.
You want to know how MS impacts my daily life? I wake up in the morning and I have to get out of bed slowly. Sitting up too fast is hard both while pregnant and while having MS. I need to take my time or I am liable to lose my balance or my hips will give out. I usually have to pee, and walking to the bathroom is hard because I have a weak bladder, both from pregnancy and from MS. I lurch and hold on to the wall, I force a smile for my 2.5 year old son while he greets me, then I finally get in to the bathroom. Where I wait. Because as weak as my bladder is and as badly as I have to pee, I also have a hesitant bladder because of MS, and it can take me up to 15 minutes to urinate. I have considered self-catheterization as an answer, but I haven't been able to take the final step and actually ask for a referral to a urologist about it yet. I am only 29 freaking years old. And it's traumatizing that I can't fucking pee. Once I finally pee, I put on my clothes and to out to the living room.
I've only been awake 20-30 minutes, but I need to rest. I sit and listen to my son while my husband begins getting ready for work. My son usually wants some more food (he's usually been up for over an hour by the time I get up) but I delay him while I recuperate from my bathroom troubles.
Ok, we fast forward, my husband leaves for work, I get my son some food and start with my chores. I need to do the dishes, and I have to do them first thing, because they need to be done. Loading the dishwasher takes me 30 minutes. Because it's hard to bend down, because I have to take breaks, because I know better than to rush.
Then it's time to figure out what my son and I are going to do. What's the weather like? How much pain am I in? How much are my muscles spasming? Did I sleep ok? What kind of mood is my son in? Does it seem like he's going to be cooperative or is he not feeling well and likely to be a challenge? What time is it? All of this has to be considered, because my life is a very delicate balancing act. Too much activity, too much stress, too much heat, too much anything and it could all come crashing down around me. And no matter WHAT happens, I have to be able to take care of my son.
Ok, so, let's jsut assume that the weather seemed nice, that I was having an average pain day, an average muscle spasm day, I got decent sleep, the pregnancy symptoms aren't too bad, my son is in a good mood, it's before 11 am so we have time before lunch... So, ok, we go to the park. The park is about 2 blocks from our house. But I still drive, because I cannot walk that far. The downside of the park is that there is no shade, but it does have benches I can sit on and see my son while he plays.
So, we go to the park. I sit on the bench. But of course my son wants me to come watch him. So I do, because I'm his mom first, and a person with MS second. The walking and the heat makes the pregnancy symptoms worse, and the baby starts kicking around a ton. Whatever, I push it aside and smile and play with my son. I watch the clock. I know that I have to be careful how long we are here. I can't let myself get too worn out, we've got a full day left ahead of us.
An hour, MAYBE 2 if I actually get to sit on the bench, and we've got to go. I have to bribe my son with movies, maybe even with grabbing lunch in order to have his cooperation. But I need his cooperation. At this point, he is stronger and faster than me, if he fights me, I know it will take a ton of energy to overcome his resistance. So bribery it is.
Getting out of the van at home is HARD. My hips are locking up, the muscle spasms in my thighs and back are intensifying, I am so stiff and in so much pain I can hardly walk. If I can just get us in to the house and sit in front of the fan with the ac blasting, I can make it. I have to make it. I grunt and struggle, but I do it. My son asks "Momma, you hurting?" I answer that yes, momma's hurting, but she'll be ok. It's sad that my toddler has to deal with these realities, but he does. I get our lunch. I cross my fingers that I can eat. Lunch is always simple. Left overs or sandwiches, maybe I picked up food, maybe I nuke something. Whatever, it's fast and it's easy and that's the way it has to be.
I zone out while we eat and watch one of his movies. Then he tells me he's ready for a nap. I know this is going to suck. To spare him seeing how much I hurt, I send him to the potty while I struggle off the couch. We hobble to his room, I sit on his bed and put his diaper on (we're fully daytime potty trained, but he still struggles with naps and bed time. No worries from me.) Then I close the door and sit down in front of the fan.
Can I do some work of my own and ear a little money? Or do I need to go lay down? It all depends really. I have to weigh how much good a nap will do versus how good I will feel to be contributing to our income. Work usually wins. I have my pride, and I want to help support our family.
I usually still go and lay down for awhile after. Being in bed with the ac on and the fan on and the dark feels like heaven. It's the only place that the pain is minor. It feels so good to lay down. I think all I want for vacation is to lay down in that room and not have to leave. Not have to get up to use the bathroom, not have to eat, not have to do anything.
Also by this point I have used the bathroom at least 4 times. I am in my third trimester of pregnancy, after all. It's exhausting.
My son comes to get me when he wakes up. I try to bribe him to stay in my bed so I can continue laying down. He usually doesn't go for it. I have to fight back tears while I get out of bed and go to the bathroom again. I get him a snack. I check the time. I realize I've got 4 hours left until my husband comes home. I fight back tears again.
I cave. It's movie time. I let my son pick a movie (he doesn't finish a whole movie with lunch.) I aim the fan at myself. I get a Mountain Dew so I can stay awake. I either nap on the couch (hard to do, makes my legs lock up, but still...) or I read a book on my tablet. I admit defeat at the rest of the day is spent basically letting my son do what he wants and me getting him healthy snacks or changing the movie, or watching him play with his cars. I take a backseat and let him just do his thing, because if I don't I'm going to be unable to do anything else.
Resting for a few hours like this makes me feel a bit better, so I can interact with my husband when he comes home. Then it's time to wrangle our son in to bed and maybe try to manage some alone time together.
Then I'm back in the bedroom around 11:30, where it's dark and cool and I can lay down in the paradise of my bed.
So, tell me, what number is that?
Because I don't know. MS impacts every single moment of every single day. Every move I make, every decision I make, every last detail of my life.
I am not bitter. I am not angry. I gave up on those negative emotions long ago, because they only took more precious energy from me, energy which I desperately need for other things.
I find small joys, now. On Monday we saw a bulldozer at the park, parked in the parking lot. I asked if my son could get a picture next to it, instead the man working with it took my son in to the cab and let him sit in the driver's seat. My son was in heaven. It made me so happy, and remembering that and hearing him talk about it made the pain a little easier to manage.
I love to cuddle with my boy in the afternoons. He laughs with the baby kicks him through my belly. I can't wait to see him cuddle with his new sibling. He talks about the baby coming out all the time, he says he will help me take care of the baby, he says he will be a good big brother. And I smile. Because I know he will.
So what's the breakdown? What number should I pick on the scale? Because I don't know. Because I don't have the time nor the energy to contemplate how much MS has taken from me, or how much it makes decisions for me. I am too busy trying to be a wife and a mother. I am too busy trying to be supportive of my friends. I am too busy LIVING MY LIFE.
I have a life. It may not be exciting to anyone else, it may look dull and sad and boring... but it is MINE. And I love my life. I love being a mom, being a wife, being a friend. I am not as active or as social or as impulsive as some other people... but I do my best and I try my hardest.
So you can take your scale and your quantifying and your bullshit research about how badly MS has impacted me and you can shove it up your ass. I don't care. It's that simple.
The impact MS has on my life doesn't matter to me, because I can't do anything about it. My job is to work around it, to compromise, to live and to be happy and to be the best wife and mom I can be. It doesn't matter what I could do if I didn't have MS. Because that is a fantasy that I don't have time for. I'm not going to sit here and mourn what I've lost instead of rejoicing in what I have. I don't have time for that. I don't have energy for that. I'd much rather spend a couple hours at the park listening to my son laugh than to sit at home and cry about what I could do with him if I was "normal."
You figure out what that means on your precious scale.