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667078 tn?1316000935

What do you do for fun?

When I was kid I loved riding horses. When I got MS I put an ad out that I wanted to ride. A nice lady answered my ad and I ride. I like to camp. I have gone camping at Big Meadows in the Shennadoah valley, on Ocracoke in the outer banks of NC, to Linville Falls in NC Mountains. I went on a hot air balloon ride. I trained one service dog now I am working on my second. I have friends with a mountain house and one at the beach so we have gone to both. I went sailing with my brother on his boat. I swim all the time over an hour a day. I go to concerts. We have free ones in the summer. I go out with my friends every week. I have a writing coach who is into writing to heal. I have books for the blind and listen to those.

Alex
30 Responses
14631020 tn?1436545476
Wow!  You are very busy.  I love horses, I used to own one eons ago.  I actually went to Equestrian school for a few months before I got pregnant.  After that, it was xray school.  I haven't ridden in a long time.  I love the OBX!  We just got back a couple of weeks ago, we stayed on Hatteras Island right by the Ferry boat that takes you to Ocracoke.  I filmed a spectacular thunderstorm that came across the sound, it was awesome!    
Avatar universal
Oh Alex, how wonderful to have so much enjoyment.

I can honestly say that I do not have as much fun these days.  Everything seems to be so tiring and I mad a conscious choice to try to remain working full-time for as long as I am able. A choice I question occasionally when I think about not just living life but enjoying it.

As always, you have given me something to think about. I need more time for just me and things I enjoy.

Corrie
Avatar universal
North Carolina is such a great place!  You can go to the beach or the mountains in a weekend.  I was just in Linville on Thursday.

I'm still in limbo land, but I run a lot.  Part of my frustration is that my symptoms are affecting my running.  I love running!

I also love photography.  Again, NC is a great place for that too.  Plus I have twins who always make for adorable pictures.
14631020 tn?1436545476
Corrie, I am in the same boat you are.  I have to reserve the majority of my energy for work.  Today my left leg doesn't want to work right.  It is irritating.  

Mathgirl, you are SO right about NC!  We have it all here :)  I shoot video!  I have granddaughters that are constantly in front of my cameras whether they like it or not!  lol  Have you been to Wilson Creek yet?  It's very scenic!  
Avatar universal
Alex, I'm glad you posted this. It's been so long since I've had fun I hardly remember. Not good, is it?

My stress level has been through the roof, with various issues with my home and family. Then of course I got the TN attack, during which I learned that not only can I not take even a small dose of Tegretol without totally losing my balance, but apparently it killed off my platelets to a 'critical' level. I have to keep having bloodwork. Then immediately I got a nasty and painful eye infection, possibly because the steroids reduced my immunity. And on and on.

Nevertheless I'm leaving tomorrow morning for a few days in Chicago, a family do. That actually should be fun, so I hope I can enjoy it. I also hope not to be posting tales of woe here constantly. Here's to better days.

ess
Avatar universal
Hi Alex,  I have been pondering your question and I couldn't come up with a good answer. I have stopped working 2 weeks now and I guess I'm trying to settle into not working.
I like being home cause I can do my house things without feeling like I have to rush, and if I get tired I just stop.
I am enjoying my dogs and they are happy I'm home, especially Baxter my big baby. He seems to be more calm with me home all the time.
Ess, I hope you are able to enjoy Chicago. A change of scenery can do us all a bit of good. I hope you feel better soon.
Thanks for asking this question Alex! We all need to spend a bit more time on fun.
Regards,barb





5112396 tn?1378017983
It's funny to think back on how much has changed in the last few years for me. Before I really committed to prioritising my mental health, I wouldn't have had anything to answer to 'what do you do for fun'?

Now, I'm an avid knitter/crocheter - handy hobbies to have when I don't have the energy to get out of bed! And dare I say I'm pretty good at it! When I'm a flake with scheduling (we all know that last-minute cancelations are part-and-parcel of having MS) or finances are tight, I always know I can whip up a gift that, at least in my generation, darn near astounds my friends. You made that?! Good for the confidence.

Thanks to my kindle, I can get back into reading. Making words larger with the touch of a finger tip, having 100s of tomes fit into one hand, a case that incorporates a strap to go around my hand to avoid drops... It's been a revelation for me. Reading had been such a pleasure, and I'd lost it through poor grip strength, poor eyesight, low concentration... Okay I still have that last one, but it truly does feel like a passion that had been on life support has made a miraculous recovery - and don't underestimate the knock-on positive effects in all areas of my life when that happens!

My family of two is apartment-dwelling, but we have a fantastic balcony that gets more sunlight than you'd ever imagine for this little island. These past five years, I've become a rather dab hand at cultivating some fine evergreen shrubs, punctuated by seasonal flowers in ever-changing hues. Coffee on that balcony does more for my headspace than you could imagine, and caring for the plants and watching them thrive and mature does the same. Balcony gardening is the sweet spot for my MS, I think. No mowing, no direct sun on my head, near the water (and the bathrooms!). I haven't a maternal molecule in my body, but I'll nurse an ill pansy back to health with the verve of a horticultural Florence Nightingale. Aphids? You just try your funny business on my balcony! (cue Ennio Morricone music)

When I'm feeling a bit more energised, I walk to the park along the river near our apartment. I may take my kindle, I may only take my iPhone (holla, audiobooks!), or I may take my good old-fashioned nature guides. Having been raised with a love of nature, but in another country, I'm still mesmerised by learning the names of unfamiliar plants, birds, and animals great and small. And sometimes I just take a blanket and my water and lie in the grass doing mindfulness exercises. I defy a high-priced spa to do more for my well-being.
1760800 tn?1406753451
Funny this post hit home.  My life consists of working 7 days  week and taking care of my home.  it takes me so long to do anything that my free time is spent doing this.  My animals bring a smile to my face.  
there really isn't time for fun and my mobility issues prohibit me from doing much.  Former friends no longer have the time or patience for my mobility issues so I am alone a lot.  The one highlight of my month is going for tysabri infusions.  It is the one time a month that someone takes care of me rather than me taking care of me.  SAD but true.
Avatar universal
Yeah, that would be me, not a lot of fun going on - saving up most of my energy during the week for work and getting to and from, and then working most of the weekend to simply try to keep my head above water with the housework. My husband is still in denial about what this is going to mean for him, but the day of reckoning is coming soon.  He's going to learn how to do housework, or we are going to be at each others' throats pretty often. I refuse to live in squalor because he's too exalted to clean. I love him dearly, but if his mother was still alive we'd be having some frank discussion of her failure to raise him to be tidy.  

That said, we have a trip to Ireland planned for the fall, but even that will be somewhat fraught, because I'm going to have to break down and take a walker, or this trip will NOT play out well.  My pride cannot get in the way of actually being able to DO what I want to do.  The day will likely come when I won't want to attempt a big trip, but for now, I need to strike while the iron still has enough heat, you know?

Karen
667078 tn?1316000935
I am in a different boat. I just have fatigue and pain. I luckily have time before I am incapacitated. When my cancer starts spreading faster I will go down hill rather fast. I guess it will be a blessing to have a short time of illness unlike others here.

Alex
5887915 tn?1383378780
I've been thinking about this question since you posted it over a week ago Alex and I really couldn't add anything fun in my life so I felt embarrassed to even answer. I currently can't get in & out of my house due to steps and trying to find the money for a ramp. I could no doubt get down the steps but it's trying to get back inside that's the issue for me and I don't have any friends or family to ask for help so I don't attempt it anymore. This may sound like I'm sad but I'm not sad at all really and I still enjoy what life I have & look forward to eventually getting ramps.

I do love my little dog who brings so much laughter and love into my life. I enjoy doing puzzles & games on my tablet, I love reading and am planning on trying to ride a horse again soon via a charity that modify saddles and assist you to ride again. I am a social person so being alone so much in life is not what I wish for but I do have carers assist me some days so I can have a chin wag when they visit. I used to go on short overseas trips with my mum using my manual wheelchair but she has dementia now so I can no longer do that.

To Artanis...take your walker and have a good holiday. It doesn't matter what aids or equipment you require in life because the world is still out there to be seen. Most airlines will take a wheelchair or walker for free as well. I used to have pride too but when that gets in the way of an enjoyable life you soon see that this can be what's holding you back. I hope you have a wonderful trip. :)

Karry.
Avatar universal
It seem too many of us are lacking in the fun department! I for one am planning to do something about this ASAP.

I do like to cook and entertain. I have a gazillion books including a great many cookbooks, and reading has been a lifelong pleasure for me. I have also traveled far and wide, always wanting to do more. What I need to do is adjust my expectations to reality, whether it's entertaining, traveling or whatever. This has not been an easy lesson to learn for me.

Health and other issues have caused me to put various plans on the back burner for a good while, but by summer's end I hope to move them up. I do want to learn photography, especially interesting black and white shots, just for my own amusement. I also plan to take an intro to Italian course via my county's excellent continuing Ed program if i can manage it.I did take French for quite a while, following up on my many years of French at school and college, but the site and fabulous teacher are just too far away and through too much traffic for that to be realistic now, but Italian is fairly close to home, so why not?

I also have quite a few offerings from the Great Courses series (see web) and they're outstanding. Very expensive to buy but frequent sales make them much more affordable, and many libraries carry them. These are something we can do even if we're pretty immobilized, and are great for keeping the mind sharp.

I still have other things from my 'old life,' social life, book group, etc, but haven't been up to much in recent months. At times it's even hard to take care of my pooch or do my hospice volunteering, but I'm hanging in here and will make every effort to get back to an even keel. Mostly have to learn to take small bites and pace myself. I can be a slow learner in these matters.

Meanwhile, in addition to what others have posted, I'd very much like more suggestions for fun stuff requiring minimal physical effort.

ess
Avatar universal
Oh, thought of a couple of things. Years ago I used to enjoy backgammon. That's a fun game, keeps  o ne sharp without being too cerebral. And of course good old Scrabble. I know there are sites online to play these and other 'traditional' (not digital) games in case real partners aren't on the scene. I'd really have to brush up for that.
667078 tn?1316000935
I am so sorry for all who are so greatly affected by MS. I really am. MS is a terrible disease.

I guess I am very lucky in deed. I guess I can only relate to when I first was treated for cancer. I had half my organs taken out including my rectum. Then I had a rough chemo. I threw my guts up for months. I did not eat for months. My heart and kidneys started shutting down. I was failure to thrive. I was 20 pounds under weight. I had cancer in both ovaries, in my bowels four places, In my tubes and uterus, the lining of all my organs, in my liver, spleen, and lymph nodes. I was not expected to live. I just laid in bed with my pets and cried. I did get books for the blind that helped. I get twelve books at a time free. I did not drive for a year. I was angry at the world. I was 49 years old. I know that is not like MS.

I would like to say I was cured of cancer. I am not. My cancer is progressing even with 100 rounds of chemo. I will be on chemo for the rest of my life. It is in my liver, spleen, and lymph system growing month by month.

Alex






5112396 tn?1378017983
I was merely treading water in the fun department for a few years after my diagnosis. The long(ish) list of things above was made possible just as much by getting myself the psychological care I needed in addition to having mostly 'good days'. I've also been honest with my friends and family. They know that planning activities with me will likely always only be successful if hatched at the last minute.
"How are you feeling today?"
"Pretty well, actually!"
"Nice one. Let's go somewhere!"

I used to be an uber planner, but that's had to change. Some things I miss out on, because it's just not the day for it. Other times, the stars align and I spend a Sunday eating my first Korean food, walking through town with my bubble tea to go, happening upon an international percussion ensemble playing a gig for free, going down a road less traveled and finding UNESCO's top-ranked Art Nouveau building in Ireland, and finishing up by going on the parking roof of a shopping centre. Empty on a Sunday, and the panoramic views of a city I'm still in love with was the perfect finish. And these are the types of adventures I didn't really jump at before.

This is NOT a "Thank you, MS, for this wonderful perspective you've given me." Sod that! My perspective was fine before! But I've done a tonne of work with my CBT therapist, I've gotten my meds straight, and I know to relish this quiet, stable periods and have let go of my more controlling inner-planner. For me, 'fun' is so much more a mental game than a body game.
11305938 tn?1417998533
I have also been pondering this thread for awhile now. It is sad but I really don't have much fun these days.

Like everyone here I have beenn greatly affected by this Damn disease! I love to read and was heartbroken when I started having vision problems as well. Like everything we learn to adapt and keep shuffling on.

I can't really do much physically anymore and when I. Can get around with my walker I am constantly dropping things lol. I really can be quite a mess sometimes. Thhe whole walker thing did a number on my pride as well, but after a bit you realize if u didnnt have a walker you wouldn't be able to go anywhere. Also I am lucky I am not in a wheelchair yet.

I recently found out there are adult colouring books for sale. I just ordered one and am excited about it. I figure that at least it might help build some strength in my hands(since I can't even sign my name) I also think it could be fun so we shall see.

I think we all deserve some fun and a break from alll the craziness surrounding our lives that unfortunately is our norm!

Take care everyone,

Barb
739070 tn?1338603402
I still my photography which has been an on again off again passion dependent on my state of health. I really enjoy landscapes, as witnessed by my palm tree pic above. I also like gardening when the weather allows. Gardening is my therapy! love to dig in the dirt and watch my efforts florurish.

I play online scrabble and some "brain games" the rest of my time is spent with my pets and at the doctors' offices with my body going haywire just when I think it's fine tuned!

I do like ess's, immesco's and Alex's adventures! need to look into picking up my books again and rekindle my old love of reading.

@ Alex- sdorry things are slowly going downhill but you are making the most out of life than any of us and yo always have, even beofre your cancer diagnosis. I appalaud you!

Great thread!

Hugs to all,
Ren
5112396 tn?1378017983
I was at in a museum gift shop last week and saw the most amazing adult-friendly colouring books there too! I'm so glad those are a thing now! I'm totally going to get some. The patterns and images were so beautiful, even unfilled. I'm thinking of maybe doing some with water colour or pastels, but I'm happy to break out the crayola if those ideas flop. Thanks for reminding me of this!
Avatar universal
Agreed... Great thread and one that helps our minds escape the symptoms and uncertainty endured. Thx Alex...for initiating this conversation. :)

Adult coloring books piqued my interest.
9745005 tn?1410044366
I color, sticker, glue, paint, glitter, create and make a good old mess with my little ones.  It really is therapeutic to make something "beautiful", at least in the eyes of my children ;-)

Karen
Avatar universal
Alex,  I pray for you...
Avatar universal
I am beyond excited about these coloring books so I am going to try to find some!

I used to love to read and my vision loss a couple of years ago stopped me for a few months then I was scared to pick up a book again. Now my concentration is at an all time low so I just can't immerse myself in them like I used to.

This weekend I am going to make a concentrated effort though, pardon the pun. :-)

C.
667078 tn?1316000935
To Corrie
have you thought about books for the blind and handicapped. It is a free service through the Library of Congress. They send a machine and talking books. They have a large selection. It is free. I live it. They send me twelve books at a time. You can go back if you miss something they are not disks.

Alex
Avatar universal
Thanks Alex! The vision is a lot better these days but I seem to have trouble reading more than a paragraph or two without beuping distracted then forgetting what I just read.

My OT suggested reading out loud and using a piece of paper to block everything but the line I am reading. Seems to me that will make reading less enjoyable but I really miss reading so I need to at least try it out.

If that fails, audio books here I come!
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