“A hobby a day keeps the doldrums away.” ~ Phyllis McGinley
I make my life look so pretty on Facebook but the ugly truth is most days are a struggle. My biggest difficulty is trying to find some leisure pursuits that keep me entertained. But the main impression these activities have on my life is the ability to take my mind off the MonSter. They are excellent diversions. And a good distraction can be such a great escape.
So with your help, I need to find a new hobby.
Currently I read books, watch TV, and write blog post. I enjoy all these activities but would love some suggestions on a new pastime. I am asking you because you understand my limitations. I use a wheelchair and scooter to get around. Most people think those contraptions confine me. To some extent that is true. But I’ve learned to function very well with the help of those aids. So despite my appearance, my wheelchair is not my main source of restriction. My biggest vulnerability is fatigue. The problem is, when I’m tired, I’m so very tired. Because of the extreme exhaustion, my abilities are curbed and my choices for hobbies are diminished.
I am 40 years old. I still have an active spirit. I’ve never been excited doing puzzles or sitting around taking it easy. So I need your help. What are some of your suggestions? Any good movies or television shows I can watch? Do you recommend any books? Is there anything unusual you enjoy doing like laughter yoga?
All ideas are welcomed.
\\Fatigue really plagues me as well..the only way im not in a wheelchair…i walk in the mornings and do dumbbells after. i stay home because I stay home because of fatigue…ive opened up a baby botique on instagram hoping to make some extra money that way. https://premierbabyboutique.net
I’ve never heard of laughter yoga but I’m having big belly laughs just thinking about it! Thanks for making me laugh. it isn’t easy to make humor about ms with people who aren’t experiencing ms. Maybe you could write a stand-up (or sit -down, haha!) comedy routine about ms. For me, my sense of humor about ms makes all the difference. Have you considered gardening, do you have dirt where you live? I don’t recommend a pet unless it’s a helping dog and there is someone who really has your back, so they could walk the dog when you can’t. When you can’t think of what to do, read something, Learn something new. Wikipeadia is a daily stop for me so that I learn something new everyday. This keeps my brain cells growing and I learn whatever I’m curious about. Today I read about the road lined with 400 oak trees on the Wormsloe Plantation in Georgia. i wonder what color those oak trees turn in the fall. See, it taught me stuff and gave me a new question. A successful day. Fatigue doesn’t show. There’s no bruise and it doesn’t bleed, so it’s not easy to experience it in the presence of other people. Take your fatigue to us, your ms brothers and sisters, We know fatigue. We can and will help you carry yours.
I paint. All my life I wanted to be an artist. I am a romantic of sorts. But I couldn’t correctly draw a box to save my life. When I was diagnosed with MS I thought, now I will certainly not be an artist. But I decided to try. I truly believe God performed a miracle…I joke that he arranged the leisions on my MS brain, just so and I now can draw. I paint watercolor paintings and oils. People love them. Most days it completely carries me thru the bad stuff! I now say I am defined by Grace not MS.
I second the suggestion for artwork of some type. I got back into art after decades of being away from it after a bad relapse left me with clumsy hands. I used it as physical therapy of sorts but it’s become so much more to me now. I look forward so much to each day, look forward to creating, and the time flies while I am painting with my soft pastels. And how great it feels to have something to give the world, still, in spite of the disAbilities from MS!
Hi!
My go-to hobby has always been crochet. I’ve been doing it since I was a little kid (I’m in my twenties now) and when I was first diagnosed with MS it was a major source of stress relief and continues to be a good way for me to focus and also give myself a never-ending supply of exciting short-term goals with my different projects.
There are plenty of very good crochet video tutorials on Youtube and Pinterest, if you’re interested. I am not sure what your abilities are in terms of hand dexterity or muscle fatigue…I know my MS affected mine really badly at least in the beginning, but crochet has definitely helped me with that.
I hope you find your new hobby, whatever it may be! Thanks for sharing your story with us, God bless!
Stevi
Hi Nicole,
Thank you for such a refreshingly open insight into your MS experience.
I suggest a few hobbies: Beaded jewellery – you can teach yourself from online information. However, there is a limit to how much jewellery one needs, but you can also make gifts.
Next idea – genealogy. This can occupy one’s time for many, many years at little expense. It is also marvellous for keeping the mind active and diverting one’s mind from MS to the hobby activity/enjoyment. The next idea – sewing. Then another idea – scrapbookng. If you need any help to pursue any of these I am able to assist via Skype or email from Australia.
I agree with Christine as I was faced with the same dilemma, and I discovered birding. Up until then, except for the Robins I didn’t even know the birds in my own backyard. Now I am learning birds in my yard and taking short trips to nearby parks where they have trails for walkers and scooters. You don’t have to expand a lot of energy to look for and enjoy our feathered friends.
Be sure to buy a book on birds in your area, or buy the App entitled “iBird” which is fun to use. It gives you info on the birds, photos and sounds.
Birding has definitely lifted my spirits and I hope it will yours.
Have you thought of volunteering to read with children at a local school or daycare and/or visiting lonely elderly folks in a care facility, especially if you could ‘scooter’ yourself there independently. One problem would be if you have to make a scheduled commitment . . . what if you have a really tired day and just can’t do it? The other side of this is that sometimes having something uplifting to do where others are counting on us to pull through . . . we find we can dredge the strength from somewhere to get on with it and then the actual activity improves our wellbeing! I’m not sure if this really qualifies as a ‘hobby’ but I find that being with other people really helps – especially people who could really do with more attention!
I love Jan Karen’s Mitford series for books. Also, you will never get tired of Madea in listening through Audible to Don’t Make a Black Woman Take Off Her Earrings.
Hi Nicole-I can no longer turn pages in a book so I would recommend listening to books from Audible.com if you don’t already! You can find just about any book you’d like besides having an option to buy the ”Daily Deal” book at a seriously reduced price-sometimes they’re good; sometimes not so good but you do have that option. That would be my only recommendation that I can think of right now!
Enjoy the springtime weather before summer hits!
Hi Nicole. I have been reading your blog for a long time and I admire the honesty with which you write. How about learning how to knit or crochet? There are videos on youtube that can teach you or a craft store might have classes or even your local library, I find it very relaxing and distracting from the daily struggles of living with ms.
Consider taking an online college class. Sometimes taking a random class can peak an interest that will lead to even more new things to try!
Got nothing my friend…. The hobbies you mentioned- reading, watching tv and writing a blog- are ones that I do and they wipe me out! I’m checking out the other comments for ideas.
I have SPMS and I’m in a wheelchair. I was a photographic and journalist so photography and writing were also hobbies. The MS means I have problems holding a camera steady, although a tripod might help even if the wheelchair would get in the way perhaps.
So I write fiction – mysteries and fantasy. And when I’m too fazed out/tired/numb and went to escape I play computer games in which I can run, fly and even kill MonSters. That is an outlet for a lot of frustration.
Love your posts Nicole- it’s kinda nice to hear from someone in the same ( or nearly) physical boat!
I’m also in a WC due to PPMS. My right arm/hand no longer works- of course the one I wrote with! I have an art background, but hadn’t done too much w/ it for quite a while.
I now paint most of the day, everyday. I taught myself to become a lefty which has been interesting! I look forward to getting up and painting every morning, and fall asleep at night thinking of the next canvas.
I don’t know how interested or creative you feel- maybe a field trip to Michael’s or AC Moore will pique your interest. Wish I lived closer- would love to give you a hand( the one that works!) with starting a new hobby!
Hi Nicole,
I love your blog and I’m glad to see you’re looking for some new hobbies to keep you busy! My mom has a form of MS that seems similar to yours and she likes to Zentangle. She finds it therapeutic and relaxing but she also makes some really beautiful pieces of art that she is always really proud of! She likes to Zentangle on the back deck in the mornings and she tries a new pattern every day. This link explains it more: https://www.zentangle.com/zentangle-method
Hope you find a hobby you love!
hes, the great MonSter of fatigue. i think that may be the hardest symptom to live with and to explain to people. i sometimes play with paints, finding interesting ways to dribble on paper. i’m NOT a painter, but it’s relaxing when i don’t concern myself with the result and just lose myself in the process. the same with photography, tho not being able to get out of the house much makes that challenging. every now and then, the result is actually interesting!
Photography!!! Think of all the beauty you can find.
Get a bike…. A hand cycle.
Find a Crossfit gym ne at you. Don’t get freaked out by it. It can be adapted to any ability. It can even be done from a chair.
Hope these helped.
Nicole,
I have found that swimming restores my soul as I can pray while underwater. Friends come over for yoga and that gives me balance , spiritually and physically . I play the piano and that takes me away in my mind. Books and tv are lovely distractions. Friends will make you laugh while my volunteering gives me a sense of euphoria!! God Bless You, Nicole
“I have been refined not as silver but through affliction. Isaiah 48:10. That verse comforts me .
Hi Nicole!
Thanks for your blog.
How about getting a pair of binoculars to do some birdwatching? It’s amazing the birds you can see, even in urban environments.
Good for you, Nicole, for wanting to expand your horizons with new hobbies. I swim for an hour a day and now have a group of friends at the pool. I do chair yoga, and while it isn’t laughter yoga we usually end up laughing hysterically in class. I take 2 hours of language class a week and have made good friends in that class. I spend maybe 90 minutes a day wheeling through the park at sunset and have made friends in the park. I write mystery novels. And like you say, fatigue is a huge limitation. When the other activities make me so tired I have to rest – most of the day, really – I lay in bed and read novels, then write book reviews. I hope you can find some new fun things to do too!