If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below.
The private, invisible pain of MS
Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day.
I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking.
Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things you might do each morning without a second thought. Maybe you play classical piano. Maybe you type quite fast. I did. How are you at your hobbies and your passions with your hands impaired thusly? Having trouble with pens, spoons, forks?
Ever had a hand cramp? Add a few of those in…but, instead of being able to stretch your hand for relief, you find that when you do, instead of clothespins you now have mousetraps on your fingers. Continue trying to go about your regular life without giving thought to this. Throughout the next few days, have someone randomly swap clothespins and mousetraps for arbitrary reasons…perhaps you put your hand in water that is a bit cooler or warmer than your hands are happy with – snap! Maybe your hands don’t want to scrub shampoo in your hair – snap! Pet the dogs as you always do when they rub up against your hand – snap!
So, it’s lunch time now and you’d really like a salad. Ordinarily getting all the veggies from the fridge and prepping them isn’t a big deal…suddenly it’s become a chore that is taking much more thought than you’ve ever dedicated to a salad prior. And the amount of time it is taking is staggering. Once again, the sharp knife has slipped out of your grasp because your fingers are becoming a bit numb and your grasp isn’t quite what it should be. This time as it falls, it slices your right hand and you have to pause to deal with this additional issue. Have fun trying to maneuver that Band-Aid!
So now you’ve got a combo of mousetraps and clothespins on the ends of your fingers, a throbbing cut, and you give up on eating the salad after the fork drops to the floor *again*. You reach to the floor to pick up that fork for the last time, you swear, and suddenly a mousetrap snaps on your inner elbow! What the heck! A reactive jerk knocks your cut hand into the edge of the table, which causes a clothespin to pinch on the top of that hand. As those new pains begin working their way up your arm, your shoulder begins to ache. Not really an ache…more like someone jabbed an ice pick into the joint!
You were supposed to be somewhere this afternoon, but you realize that driving would be far too dangerous…and anyway, how on earth are you going to manage a steering wheel when each time you even move your right arm, the pain sears from shoulder to fingertips? You somehow manage to press the right buttons on your phone to call and cancel the plans you’d been so looking forward to.
It’s meal time and your neck is starting to cramp from the tension of trying to figure out something you can prepare for your family while the pain continues to whine at you continually. You aren’t in a great mood, which gets ill looks from your spouse as they walk through the door and ask “what’s for dinner?” to which you growl in reply. “Man, I had a day from hell at the office,” they begin, and you really want to be supportive but find yourself barking, “I also had a day from hell…could I get some help in here?”
After standing on your feet in the kitchen for the usual amount of time to prepare and clean up from supper, you realize that now all your toes have clothespins on them. Maybe a hot bath will help, you think…and proceed to lock yourself in the bathroom while running a steaming hot bath (you’ve always liked them super hot)!
You’re so eager to jump in and relax, just knowing it can only help. But, after a few seconds in the ultra warm water, your legs turn to limp noodles and you are feeling as if you will faint. The room is steamy and now all you want is cool air. But, your legs won’t obey your brain and get you out of the water. After some battle with the plug, the tub begins to drain and you use your last bit of effort to turn on the cold water and let it run over your feet. For a few moments, this helps and just as your breathing starts to slow and you’re pondering how to get out of the tub, the clothespins on your toes turn to mousetraps – snap!
You call for your spouse. No answer. You call a bit louder. No answer. You scream their name as loud as you can, but they can’t hear you over the Monday night football game! At some point, you give up and decide that laying naked in the empty tub, with pain shooting up and down your arms, your feet on fire, that crying is the only thing left to do. The tears flow, with no attempt on your part to control them.
A commercial break prompts your spouse to tap on the door and ask if you’re ok. No you are not ok! “I can’t get out of the bathtub,” you say. “What?” they ask. “I AM STUCK IN THE BATHTUB!” you scream. Your spouse tries the doorknob, and finds it locked. “Just a sec, I’ll get a butter knife to unlock it,” you hear. Wiping the tears from your eyes, you decide to buck up. You hear the door being unlocked from the other side and then a slam as it knocks into the drawer which you left out and is now blocking the door from being able to open.
Sometime later, you are out of the tub after your spouse has wrestled with the door, the drawer, and your wet-noodled legs. You feel ill, too hot and thirsty…you want the fan, ice water, to cool off. Your spouse lovingly abandons his football watching plans to find the fan, bring you ice water, help you dry off…help dress you in your favorite pajamas. He tells you that you need to rest, and suggests if you lay down you’ll feel better. You give in even though you had things you wanted to get done tonight. Maybe a little reading? But you can’t maneuver the book and turn the pages…your hands are both numb and painful. You finally get to the right page, only to fumble the book and it ends up on the floor. Making sure to lay on your left side, because your right shoulder still has an ice pick in it…You. Give. Up. Tomorrow, you think, will be better.
Only it isn’t.
Your legs are not working as they should. You try to get out of bed and collapse on the floor because they will no longer support you. The pain of the clothespins and mousetraps flares again and you find that you now have them running up the backs of your legs, as well. Just sliding your way in a half-crawl down the hall to the bathroom leaves you exhausted. You really don’t have time to care about the rug burns that are now on your knees, because you need to pee. And, in the end, you do not make it to the toilet and find yourself sitting on the hall floor in a puddle that is not the dog’s fault this time. Your spouse is at work and you have to ask your child to come assist you. The humiliation is enough to tow you under, but you put on a brave face and try to make a joke about it, to find something in all this to laugh about.
There is no way for you to get in and out of the tub again to wash off, so you ask for a pile of washcloths and a bowl of water and get to work, slowly. Your child has to clean up the puddle, find clean clothes for you, and do a load of dirty pee-drenched laundry. You are sure you still smell it on yourself. A long crawl back to your room and you decide the floor is just going to have to be where you “are” for today.
After this ordeal, you hope that you can zone out and just survive for awhile, when a zap of electricity shoots through your brain. Your body, quite literally, jolts in reaction. This isn’t part of the clothespins and mousetraps! This is your brain! It happens again. When your body releases the tension and collapses on the floor once more, you realize that someone snuck hot coals under your lower back. Try as you might to remove them, they seem stuck to you and are burning your spine. You cry out in anguish.
This can’t be right, you think. The experiment was only with clothespins and mousetraps! What happened to me? Did I actually faint in the bathtub last night and hit my head? Maybe I should see a doctor, just in case. It takes you 30 minutes to get to the right number in your phone, get it to connect and schedule an appointment. Your appointment is on Thursday afternoon. It’s only Tuesday morning.
Rather than go through each section of the following days, let me just add that by Tuesday night you won’t be able to sleep because now there is an ice pick in your left hip. You also feel like someone shoved a hot curling iron up your wazoo and snapped mousetraps along your “tender areas.” Your arms are weak, sore and barely functioning. You can’t even lift a jug of milk. Your legs vacillate between al dente and so waterlogged they are of no use.
Your spouse takes Thursday afternoon off work to get you to the doctor because you cannot drive, nor can you get from the car to the door of the doctor’s office without assistance. Every movement causes one pin or trap to move and send a new pain. Putting on the seatbelt, your spouse isn’t aware they tapped your shoulder and you try to hide the tears as the ice pick jabs deeper. The hot coals on your back have never cooled. You finally get in with the doctor and begin explaining what has happened this week, and realize that he is looking at you like you’ve grown ten heads. You insist all of it is true and he shakes his head and says, “You look just fine. I don’t see why you’re having such trouble.”
Oh, I forgot to mention…the clothespins, the mousetraps, the ice picks, the coals…they are all invisible. Only you can “see” them, only you can feel them, only you know what is happening with each movement. Your brain begins to realize this wasn’t an experiment, begins to realize that there will be no end to this. That providing endorphins to ‘push through it’ won’t do one bit of good.
There will be no surgery to correct this. No medication will cure it. The most you can be offered is something that *perhaps* will reduce the mousetraps to feel like only clothespins, again. You grasp at it and decide that clothespins are better than mousetraps and you can learn to function in a new way. You forget the person that you were before this past Monday and relegate them to a fond memory which you pull out on occasion for nostalgia…but not too often, because it’s just too painful. A far different kind of pain, but pain nonetheless.
You decide to find things to laugh about, to research potential drugs and supplements which may help. You learn that the myelin coating your nerves is disappearing and the shocks and jolts will only continue to increase over time. You’re making adjustments in life as they are needed; finding tools to help do the things you can no longer do for yourself. Some days there are new mousetraps, new ice picks, new coals. Some days, just getting out of bed to go to the bathroom is all you can manage. There will be no shower, no typing, no phone calls on those days.
Some days you can go outside and enjoy the sunshine, see the blooms on your beloved succulents, watch your dog chase a butterfly. You relish those days and hold onto them during the others. On occasion, you have a really great day: A day when you can ride a few miles in the car without crying out at each bump in the road. You might be able to sit at a quiet restaurant for a few minutes with your spouse and maybe visit a store. You’ll pay for this time, but that’s ok…it’s worth it even if you can’t walk the next day again.
You will endure the comments from the uninformed. How you don’t look like you’re too disabled to work, how *they* don’t take pain meds and never would, that perhaps you just need to exercise more, and why on earth do you have to think about your pain with regard to every move you make. Once in awhile even those who should be informed act just as ignorant and insist that you can’t *really* be unable to work.
You don’t mention the fatigue anymore because far too many people laugh and say, “they get tired too but *they* don’t get to lay in bed all day.” You don’t mention how much it anguishes you when you remember the job you loved and how you wish with all your might that you could do it again. You don’t mention how the neurological damage in your brain makes it so that sometimes you can’t even do grade-school addition.
Sometimes, you’ll smile and nod and pretend those comments aren’t just as hurtful as another mousetrap. That they don’t sear across your brain like another jolt of electricity passing along the neurons, that they aren’t as harmful as a sudden loss of your ability to walk (again). You don’t mention that emotional stress can be just as damaging to your illness as physical stress. You don’t tell them that their comments are every bit as hurtful as the sharpest pain you feel. You don’t mention the many, MANY other ways that your illness affects you each and every moment of each and every day. That it’s like a tantrum-throwing toddler and all you wish for is that it would collapse on the floor and take a nap and give you a break…for just a few minutes.
Sometimes, you won’t be able to keep the tears back…
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