Beep, beep. Who’s there? Just one of my MS problems, sounding off.
How my family and I are getting used to some unusual facets of my disease
About 48 hours ago as I’m writing these words, I began to hear a strange, high-pitched tone. At first I thought it was one of the dog collars we use with our invisible fence, but it was a little odd that I heard it inside while the dogs were in the backyard. Later I heard it in the kitchen and then again on the back porch. My wife and I searched for the source of the noise and checked various household electronics, thinking that something was giving off a low-battery warning, but we couldn’t find it.
The next morning, before I got out of bed, we heard it again, but this time it sounded muffled. At first we thought it was under the bed, or maybe under the covers. It turns out we were partly correct.
The once-hourly tone was, in fact, under the covers — because I was. It was the noncritical alarm from the implanted pump for my baclofen (brand name Lioresal), letting me know that the reservoir was low. I was due for a refill anyway and had already scheduled it for this week, but I hadn’t ever gotten low enough to hear that particular alarm.
In the grand scheme of things, searching for a mysterious noise that’s coming out of your own abdomen is a fairly unique problem to have. It’s even a little uncommon among people like me, with multiple sclerosis (MS), but that’s still the crowd in which I’m most likely to find a sympathetic ear. Like the more familiar “first-world problems,” MS has problems and difficulties that are rare to unique.
A few standout problems
A few examples of MS problems come to mind in particular.
I’m in a wheelchair now, but long before this, I still used various mobility tools to get around. When I was dependent on it, a broken strap on an ankle-foot orthosis (AFO) for foot drop could ruin my whole day.
As my disability progressed, so did the tools I used. Canes, rollators, and eventually wheelchairs all have had their various potential problems. While those issues may not be unique to this particular disease, combined with the symptoms of MS, they can become pretty specific for me and my community.
I have an accessible vehicle to transport me and my wheelchair, and sometimes it seems that it gives access to twice as many problems as a regular one. For instance, it has a few more moving parts that have to be serviced by a specialized dealership. It also happens to be low to the ground to accommodate loading and unloading my chair. It’s not as though we’re off-roading in it, but we do pick which entrance to use at a parking lot to ensure that we don’t scrape.
Since several great columns have recently discussed both accessible travel and the extra steps necessary for air travel, I won’t belabor those points here. I will say that thanks to MS, my family finds it impossible to travel spontaneously. Even an overnight stay invites MS problems. We have to consider my power wheelchair charger, a shower chair, and all my medications, just to name a few.
That shower chair doubles as a toilet chair, and I also routinely use a portable urinal. We’re not always on the best of terms, but since my bladder and bowels go with me everywhere, these two items have to go with me, too. That definitely requires planning, and while it may not be an issue for everyone with MS, it’s definitely one of my MS problems.
There are so many other MS problems, and I’d love to hear examples of yours. Share them in a comment below, or join the Multiple Sclerosis News Today Forums and we’ll all commiserate together.
By the time you’re reading this column, my pump has been refilled and is no longer serenading me. The only thing I’ll miss about the beeping is being able to give my wife a smoldering look when it happens and, in my best James Bond impression, say, “Do you find me — alarming?”
I think she got tired of that after the third or fourth time, but that’s an MS caregiver problem.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Daniel
Reading your column is like looking into my own life with some exceptions. I, as well as yourself, also have PPMS. Diagnosed is 2006 and symptoms that I can remember as far back as my teen years. Back then, I’d be driving and my hands would fall numb on the steering wheel. Who could ever know that long ago what that telltale sign would mean almost 40 years later.
Your story and my story are parallel up to a point. For the last 10 years for my heat intolerance and 18 years for pain have become intolerable. I’m probably partial to myself but I really feel that no one could live with the pain I do day in and day out.
It’s like walking on hot coals while simultaneously being eaten by a million fire ants on my feet and legs up to my knees. The heat intolerance has become as difficult as the pain. Just being wrapped a bit too tight in my sheets at night paralyzes my body where I can’t even move a little until I direct the air conditioner to blow directly on my body so I can eventually move again. Naturally it’s all related as heat helps augment my pain by leaps and bounds. When the pain is building and opioids are taken, there’s basically no relief until I get to 8-10 mgs. of Dilaudid in a 3-4 hour period. I’ve been told that’s too much and it could be problematic for me. I say, I know that you fools! Just kidding, in a way but that’s how I feel. There are no other pain relieving medications for me. I’m being followed by a pain clinic and they have no solutions. They’ve had me try methadone among other drugs. They don’t relive the pain and leave you, well let’s just say f’ed up mentally and physically and you’re days recovering. I’m stuck inside in the summer because of heat and stuck inside in the winter for fear of accidents in the snow and ice. Can’t feel my hands at all anymore. I’m now needing help picking out my pills each day. That’s besides all the other things my darling wife of 51 years has to do for me each day. I’m not a whiner, just telling it how it is. I can only say that I’m glad it’s me and not my wife or children as I don’t know if I could handle looking at them if they were as disabled as myself. I accept what I have as I know that it’s the reality of illness. It’s just the law of averages! Out of 1000 people they’ll be so many with heart issues, cancer, blindness as well as MS, ALS and all the others as well. Nothing can be done, you have to brainwash yourself and don’t ever look back and say why me. It’s you because that’s the way it works, averages, period!
I’ve been so fortunate to have the support of the most unselfish person I know, my wife, as well as children, sons in laws and gkiddies. One of the consequences of sickness is the isolation that naturally occurs. Friends and acquaintances seem to distance themselves gradually. I find it’s normal as most people’s lives are already full and we don’t know what problems that others might be dealing with. It’s not that people don’t care it’s that life happens and we just understand.
Anyway, that’s a bit of what I’d like to add to your story. By the way, thank you for your service to help gard our freedoms and liberties. Wishing everyone peace, love and forgiveness. Let’s help each other so we can get to the next day and put our head down on our pillow at night and feel good about ourselves. We need each other, no one ever does it alone.
☮️❤️🎶