Multiple sclerosis can turn a fun hobby into a dreaded chore
When activities that were once enjoyable become too much to deal with
About a decade ago, I got caught up in the home brewing craze. I don’t know that I qualified as crazed, but I had a lot of fun with it and felt that since it was probably encoded somewhere in my Hofmeister DNA, I should at least try it. One attempt went badly, but on the whole, I was pretty good at brewing beer. People weren’t lined up to buy it, of course, but that’s OK, because I wasn’t planning to sell it anyway.
It’s flattering when people sample the results of your work and ask if you’ve ever thought about marketing it. I’ll admit that I did mull it over, but I never got past that. It wasn’t because I didn’t think my creations were good enough to one day appear on a store shelf, but rather that I didn’t want a fun hobby to turn into a stressful job.
I haven’t brewed beer in years, because the disabilities in my upper and lower limbs make it almost impossible to do so. Unfortunately, multiple sclerosis (MS) turned what was once an enjoyable activity into a chore. It’s done that with quite a few things in my life.
Take the various vehicles in my driveway, for example. I used to really enjoy tinkering with them. I’m much too particular about the cleanliness of my hands to be a mechanic, but I was proud of what I could do. Now, thanks to problems with dexterity, my tools sit in the garage unused, mocking me. I doubt I could securely hold a wrench now, but even if I could, MS would make working on cars too difficult to enjoy.
In addition to assembling mechanical things, I also used to enjoy preparing meals. I appreciated the ceremony of enjoying excellent food with good company. I’m thankful that MS hasn’t taken the good company from me, but I’m at the point where the only thing I can make is a sandwich that’s not very aesthetically pleasing. Fortunately, my three kids like being in the kitchen, so they don’t mind being coached by their father. I still get to have my hands involved, so to speak.
I’ve written before about how much I miss my singing voice. I wasn’t destined to be on stage or anything, but I could carry a tune and liked the sound of my voice. Singing probably doesn’t qualify as a hobby, but I still feel like MS turned it into a chore. Because my vocal cords and the muscles associated with breathing are weak, I don’t care to hear my weak and raspy voice anymore.
This is the point where some might say that victory is much sweeter when you’ve had to work hard to achieve it. For me, any feelings of accomplishment are extinguished by exhaustion. It just doesn’t feel the same when you have to ask for help.
I also used to spend a lot of time outdoors hiking, canoeing, camping, and fishing. I can’t do any of that without help now, thanks to MS. Requiring assistance to do things I used to be able to do is a constant reminder of my diminished abilities.
MS has turned many enjoyable hobbies into unpleasant chores. If you have MS, I imagine you can think of plenty of similar examples in your own life.
Thanks to technology, MS hasn’t been able to take the joy out of writing this column, though. I’m grateful for the therapy I get from writing it and from interacting with my readers in the comments section below and at the MS News Today Forums. Drop me a line!
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.
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Comments
Deborah Schehr
I have experienced the same problem. While I can still walk using a rolling walker, it is difficult. It takes a lot of energy. I had to stop doing stained glass. Too hard to break the glass evenly. I no longer bake cookies or bread several times a week. It takes more energy than I have. I managed to be diagnosed less than a year ago, at 63. I am struggling what MS is doing to my life. I am thankful to know the why of what is going on with my health.
Benjamin Hofmeister
Thanks Deborah! You know, at diagnosis, I was just thrilled to have a name to put with my symptoms. Answering the why is more important than people give it credit for.
Lisa Kandel
This very moment that I'm writing this I am absolutely exhausted. I've gotten through most of my work day unscathed, but the debilitating exhaustion set in a short time ago. By this evening, I will feel like there is something horribly wrong with me because I can barely hold my head up. I feel like I have an absolutely miserable flu and want to do nothing but sit and try and stay up to watch TV. I look forward to sleep with the hope that tomorrow will be a better day.
God bless you and make you a blessing!
Benjamin Hofmeister
Thank you for that comment Lisa. After I retired from the Army, I went to work with some other veteran friends. Because they were good friends, they accommodated my MS as long as possible. I got to a point where they were letting me take naps on my desk in the afternoon, but by the time I was needing help to get in the car for the drive home, I knew it was time to go. I know how fortunate I was to work with friends and how rare my situation was. Even as accommodating as they were, I still could never explain fatigue to them. No, it isn't the same as being sleepy. Yes, a nap will help, but it still isn't the same thing.
I am glad that you are still able to work, but I will rejoice on the day you get to retire.
Betty Stoddard
Ben, your columns do bring insight, joy...and sometimes tears. Today's tis a mixture of all.
Must say first that I feel gratitude surrounds me always. An interesting feeling when MS & other issues directly involve life!
Question the gratitude? No...to what purpose, although I do wonder about it at times.
Daily brisk walks. Alternating my circling arms round & round. Neighbors would greet me with those wild gestures!
Quick jaunt to pick roses in my sloped, lower garden. Now grateful when/if I can pluck rosemary from curb-side bed.
Gardening = such joy! Sigh...My caregivers are most helpful when something needs watering or weeding. On I could go.
Edited freely from Ben's eloquence above:
"How much I miss singing! I did carry a tune and liked the sound of my voice...a range of two octaves...in choirs, ensembles & quartets since age 6. MS turned it into a chore. Because my vocal cords and the muscles associated with breathing are weak," now I sing with the baritones or second tenors in my ONE octave range.
And so it goes. Yes, I do relate to your words, Ben. There's grief. At the same time, grief does its rotations, not always in the same pattern. Gratitude that I do recognize what's going on...and that there'll be another cycle to come. Including acceptance...which can be elusive, too. Another sigh.
Ben, for your words, Gratitude. With gentle touch of a hug to you, Betty
Benjamin Hofmeister
Thank you for the hug Betty! I am so glad that you relate to the words of my column.. and so sorry all at the same time.
Lisa Cunningham
Hi Ben,
I'm thankful that you get joy out of writing this column. I look forward to reading it on Thursdays. It's inspiring.
All the best,
Lisa
Benjamin Hofmeister
Thank you so much Lisa! I really appreciate the comment. Things like that are what keeps me going.
Margaret N
I totally understand. I too enjoyed cooking, but my limitations prevent me from joining in and contributing to the holiday meal festivities. My hobby was working In stained glass. My exhaustion keeps me from fully enjoying it. I keep trying though.
Benjamin Hofmeister
Thanks for the comment Margaret! I wonder how many hobbies I kept trying to do long after MS had taken the enjoyment out of it? If I was getting no pleasure from it, it's not much of a hobby is it? I think by that point I had turned Hobbies into desperate little lifelines to my pre MS life. I'll bet your stained glass work is lovely and my advice is to keep at it as long as you can. Maybe stopping when it's time is what keeps a hobby from turning into a chore.
Kathy
So appreciate the honesty in your writings regarding your MS experience.
Upon reading your Bio, I can’t even imagine the life change from Green Beret/Ranger to dealing with PPMS. Hoping the discipline and struggles with your military training in some strange way helps with your current health situation.
Over the last 5 years I have been transitioning from RRMS to now dealing with SPMS. I was diagnosed 30 years ago, told I probably had it ten years before that and, for the most part, held my own. I am, however, now just noticing the slippery downward slope as the disease, and my age, progress. I, too, was active in many sports, biking, running, hiking and just plain wallowing and reveling in my wonderful nonstop fulfilling life. Simply put, that ship has sailed.
So, here’s the Good News: Through all the trials of dealing with a progressive, degenerative disease, I have developed an awareness and sensitivity of amazing proportions as to the daily sufferings of others; a depth of understanding I never would know without my own personal MS experience. I do fall off the rails, more often than I’d like, but try to reclaim perspective, pick up the pieces and carry on.
So, thank you for your posts, Ben. I find them extremely helpful and grateful you take the time to reach out to your MS Brothers and Sisters. It’s healing to hear another speak our language so eloquently.
Benjamin Hofmeister
Thank you so much for that Kathy! My sympathy and understanding for others definitely improved with MS. I think that's one of the few things I can say actually got better. The problem is that my sympathy and understanding for myself did not keep pace. It seems like only in the last couple years have I given myself Grace or accommodated myself in any way. Why is that one such a tough lesson to learn?
ROBERT DYE
I am with you there. MS has taken away my fishing, woodworking, hiking and biking, woods exploring, as well as kayak trips. Hardly cook anymore either. Took me a while but I now look into simple things I can do without getting wasted from the fatigue and try new stuff that I think might appeal to me.
Benjamin Hofmeister
Hi Robert, what you said is so true. Despite what people sometimes say, multiple sclerosis neither kills us or make us stronger. It has however, made me more creative when it comes to keeping a hand in things I enjoy, or finding new things.
Laurie Schniebolk
Ben, when you couldn’t enjoy your other hobbies, your talent for writing blossomed. Each of the bits of yourself that you share help us feel less alone. I’ll consume words over beer anytime. Bottoms up if I can get off the couch.
Benjamin Hofmeister
Thanks Laurie! I may not make it anymore, but sometimes I consume a beer while writing. It probably shows LOL
Catherine
Thank you sharing this. I feel your pain, especially when it comes to not being able to go for long hikes in the country side. I retired two years ago and had previously thought my retirement would be full of long walks, followed by lunch in a country pub. How differently it has turned out. I used to knit and sew, but problems with dexterity makes it awkward for me to hold either the knitting needles or a sewing needle. And don't get me started on trying to thread a needle with cotton! One thing I can still do is bake. It is an effort, but my love of cakes make me get off my backside and into the kitchen. I have an array of gadgets to help me prepare the cakes, and a supportive husband to help me eat eat them! My mantra in life with MS is to keep doing what I can, while I can. I hope you will keep writing your informative and entertaining column.
Benjamin Hofmeister
Hi Catherine! That is precisely what I thought my retired years would be like. I have three young boys and I always thought that the three of us would be off camping or hiking, maybe even doing some fishing together. Instead I'm coaching them through building a campfire in the fire pit in our backyard and having to pull up YouTube videos to show them how to tie knots Etc. I'm doing what I can, but there's a part of me that wishes it was like I thought it was going to be. Thank you for your kind words and for leaving the comment.
Cheryl Lynn
I always enjoy your Column. I can so relate to having a hobby there's no longer easily done. About the only thing I can do easily is read, but that's on the Kindle or an app on the computer for Kindle because I can make the print any size I need. I used to sew and quilt quite a lot, but it's become increasing a chore.
Thank you for writing about things that are sometimes difficult. It helps me feel connected.
Benjamin Hofmeister
Thanks Cheryl! This week's column is about reading and now I'm mostly do it on e-readers now. You are definitely not the only one. I really like my books but I have to admit turning the pages on the e-reader is so much easier.
Elizabeth DiPietri
Ben, One thing I am particularly glad MS has not been able to take is reading - I always enjoy reading your columns! This one hits home very well. I was not diagnosed until I was 72 - which meant that I still don't really know what is due to MS and what should simply be blamed on old age! But MS did take my left hand from me. Oh, not completely. Just enough that I can no longer play - or teach - my mountain dulcimer, my hammer dulcimer, my piano, and some other instruments I have enjoyed. I can still write arrangements for other people to play but it is harder that way. I no longer walk as well as I use to so our dogs walks no longer happen. Typing on the computer is much more difficult as my left hand doesn't really feel the keys and often hits wrong ones so all I type is gobble-de-gook! I have always loved words and enjoyed having a quite large vocabulary. Now words no longer come so easily to mind and my spelling - well - let's just say that I appreciate spell check more than I use to!
Anyway, I am glad that you still write. You have been - and continue to be - and encouragement to me. I thank you for your words and ideas. Thank you.
Elizabeth DiPietri
Chris Jackson-Smith
Thank you for sharing another column, Ben. I enjoy your posts and look forward to reading them each week. You write about things that are very real to those of us with MS, that the rest of the world cannot understand. Sending virtual hugs from the UK.
Bonnie Porcelli
Thank you for your wise words. I enjoy your column.
Benjamin Hofmeister
Thank you for reading it Bonnie and thank you so much for the comment!