Anything can be comfortable for a short period of time. What I’m going to write about today is what happens when you find yourself unable to stand and you have to sit for long periods of time. I find myself in this position quite often. Where I’ve been sitting in the same position or in the same chair for a long period of time say upwards of four to five hours. I switch from chair to chair in the hopes of finding a small dose of comfort. I do find it. I find small little pockets of comfort that keep me going and yet a few minutes too long and my little pocket of comfort goes all to hell.

Anybody that has MS knows of pain. It’s a regular presence in our lives and can come in small doses or large. I suppose the trick is to find the comfort in equal doses to the pain. I’m in search of little periods of time where comfort can dull the pain for a short spell. I’ve made a few discoveries lately that have helped me get to this point but the relief is all too fleeting.

The first is a roll-on product that you can put on your skin that helps you dull pain for a short period of time. It comes from both Aleve and Motrin. It’s cold to the touch when you get it on your skin. The cold distracts you from the pain that you might be feeling. If you don’t like being cold you might have a hard time with this product but if your pain gets to the point where it’s distracting you and you need a little bit of a boost this roll-on product can really be a good tool to have in your arsenal. It costs about 20 bucks for a tube – easy to get at any pharmacy. Not to say that 20 bucks is cheap but it lasts for a decent amount of time and I pretty much try to roll my whole body in it on a regular basis. This is a partner to my oral ibuprofen and Tylenol that I use to manage pain. These are infantile tools for pain I understand if you have serious pain you probably have something stronger but I have resisted the idea of trying anything that gets me the potential to get hooked or my dull my senses. I stick to the OTC offerings really loyally because that’s what works for me. I’m sure that doesn’t work for everybody but it’s the choice that I’ve made in my drug regimen not to complicate things a little bit too much because I know I have the tendency to get addicted to anything that changes my mindset. I encourage you to try this roll-on product because it won’t get in your system and conflict with any kind of drug that you might be on for pain management.

The other thing that helps me involves another person to help get me into a different position. This is when I’m out of my wheelchair. I get into another recliner to actually take the weight off of my backside and to get me onto the softer surface than my wheelchair cushion. Oddly my wheelchair isn’t very comfortable at all but I guess anything will be uncomfortable when you’re in it for seven or eight hours a day nonstop in the same position because you can’t move your legs or anything below your waist. The tendency to feel helpless is almost impossible to avoid. And it’s a feeling that I don’t like having so I resist. I fight this with everything I have in me.

I use something that we call willfulness in therapy, that’s kind of like saying that you’re going to put all of your willpower against a problem and see what happens on the other side. I tend to go at all my problems this way it takes a lot of energy and a lot of focus but I do it because it keeps me from feeling too hopeless and helpless. There’s also the notion of radical acceptance that I’ve written a little bit about before on the blog where I write about my search for comfort in an uncomfortable world. MS Serves up all sorts of interesting symptoms, doesn’t it, this insessant pain is a new one for me, one I’m not used to so I struggle. I’ll be curious to hear what you do for pain I know many take gabapentin or something similar that didn’t work for me and like I said opiates were never on the table for me just because I know that I have a tendency to addiction and I want to avoid that at all costs.

Because I’m oddly flexible even with my spasticity I’m able to get my body into a crisscross applesauce position where my legs are bent in the chair. I’m able to sit that way for about 20 minutes to half an hour until I have to switch legs because my legs start to hurt. The switching of my legs is something that has to be accomplished by one of my caregivers so again it’s the reality that I can’t take care of these things myself I have to rely on others but that’s the way my life is and I have to accept it. Some people find it crazy that I can sit in that position and it’s comfortable for me but like I said comfort comes in small doses sitting in a crisscross applesauce position is only comfortable for two to three hours and then the pain starts and I have to set my legs free which brings its own odd kind of discomfort. When my legs aren’t crossed I feel very unmoored in the chair like I don’t have anything to hold on to or anything to keep me in position like I do when I’m in a crisscross position. It’s become a ritual with my caregivers what we refer to as “time to switch” when one of my caregivers must come in the room and switch my legs one on top of the other in the opposite position that I was sitting in. Time to switch is something that I have to have if I’m going to be comfortable outside of my wheelchair because I lack the structure and the ability to hold myself straight up in a chair. But my wheelchair becomes untenable after 5 or 6 hours and my butt is just on fire because I’ve been sitting in the same position for so long. Fire is actually a poor analogy for the way my pain is in my backside it’s actually more of a dull ache one that is persistent and relentless. Sometimes I beg one of my caregivers to put me in the sit-to-stand lift and let me stand up for four or five minutes just to take the weight off of my backside for a short period of time but that also exhausts me because it hurts my back and my shoulders to stand in a harness for that long. But it’s the trade off isn’t it? One of the trade-offs that we’re all forced to make on this journey called multiple sclerosis. Life is full of these tradeoffs when you’re an MS’er and I don’t have to explain this to you because chances are if you’re reading this blog you also have MS and also deal with your own version of pain and dull aching throughout the day and night. It comes with the territory.

I live for comfort in small doses because that’s what MS means in my life. Using radical acceptance to deal with this reality is also what Ms. means in my life. I’ve come to accept it even though I consider the acceptance a constant battle that I wage with my own mind. Reality means there’s very little I can do for myself in this life but I tell myself that I can do enough in just the effort of trying keeps me going. Crazy enough I’ve started doing an exercise program with one of my caregivers during the week. It wears me out and it also helps me to feel like I’m still having some range of motion in some ability to improve in my own body even though I have to modify most of the exercises to get through a 20-minute video.

In a recent meeting with the Great and Powerful Scott, my neurologist and MS specialist, he referred to my exercise program as supportive of my own ability to expand my range of motion. It’s kind of funny how one of the Great Scott thinks I’m doing a good job I feel like I’m getting brownie points and I can pat myself on the back. Good girl Bethy, that’s what I think to myself. Good girl for making the Great Scott happy even though the most he has to offer me is a potential new drug on the horizon that might slow down any progression that I have in my future but that new drug is not likely to be available until November and will be extremely immune suppressing like another form of chemotherapy which I’m not really into so much. I’ve done every MS drug that’s on the market and the immunosuppressant factor that they have on our lives is not one that I’m OK with. Recurrent bouts with shingles and other diseases that come out of being immunosuppressed are not something that I can tolerate in my life. So these new BK drugs don’t really excite me. I can see how they may excite somebody with progressive MS like I have because there hasn’t been anything new on the market in a very long time but the downside is not one I’m willing to give mean time to. My MS seems to progress at a snails pace and I guess I’m OK with that seeing as I’m older now and unlikely to see any huge improvement from any new drug. New drugs just offer me a false illusion that I have some power that I don’t currently have.

Drugs are that way. Offering hope where there isn’t hope currently. But for me? False hope is almost worse than no hope at all. So I will probably pass on the new BK drugs entirely. I don’t see any change in my mind on this and you all know that I’m very very stubborn. My mind is made-up on this topic but I can understand why hope for a progressive MS drug therapy might be appealing to many out there which is why I share it. Immunosuppression doesn’t give me hope but just gives me fear that something is going to come out of the woods and bring me down again as shingles has done in the past.

In the end I choose my comfort in small doses. For now that’s enough for me. I pray, though I’m not sure who I pray to, that comfort in small doses remains enough for me for as long as it possibly can.