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How do you fill your days?

Oct 08, 2015 11:56 AM

Just wondering what you all do if you are no longer able to work. I am a couch potato. I watch lots of TV...iI managed to watch a film today
Now that's a mahoosice achievement for me as I have the attention spell of a maggot. I have to sleep at some point most days as I get so wiped out. Sometimes I try to read but it's a struggle again with concentration. I uses to do crafts but it's a struggle to do basic stuff now. I am pretty much housebound. I spend a lot of time on Facebook bit that's it really. I feel zoned out a lot, like I am not really here, I am enduring life rather than enjoying it. That's a real feeling, not me being negative ☺

Oct 08, 2015 12:39 PM

I'm getting that way. I still work here and there from home but the energy and pain it causes puts me off although I enjoy it. Facebook, TV and this group. Sleeping. I have children so I do have a busy life out of school time and I need to do that stuff no matter how I feel.

Oct 08, 2015 2:06 PM

Gracegrower, im new here still but I wanted to say hello because I'm also a chronic pain "patient" and also not working. However, I know I can't truly identify with your pacific pain and struggle. What struck me is your feeling you described. Do you think it could be a medication or medication(s) causing this feeling of apathy? That definitely has happened to me with lexapro and of course, pain meds such as Vicodin/Norco. More apathy with the antidepressant but definitely adversion to exercise and short temper/fatigue with pain meds. Please talk to your doctor or even a counselor about that being a cause, possibly? I know that feeling and it was awful. But what's good if you are not only noticing you don't like this feeling, you are also reaching out about it and so the next step is Doing! Just like Katy above doesn't have a choice to do for her children, that may be a blessing in disguise for her, and so for you & me without that motivator, we have to push ourselves. We have to Force ourselves to take a 5 minute walk outside. Start there. Put on those tennis shoes! Walk to the end of the walkway, or driveway, and back. Further the next time or the next week! Another good idea for not being a total couch potatoe--even a hand bike. I don't think they cost too too much. U night even be able to switch to peddle using your feet as well so upper and lower body exercise. ANY movement helps. Or force yourself to stretch on the floor. I hate getting down on the floor personally (pain) but you can also stretch on the bed! Or the couch! Find specific stretches/routines on YouTube! There's even bed yoga! I swear! If you cannot force yourself today, right now, then maybe create a List of things you'll try tomorrow! And the last thing, if it's not a med causing this "feeling", there May be a med that could help (antidepressant I'm thinking) instead of hinder. I'm on an snri Effexor at 75mg and it seems to help my myofacial pains and mood. I've also added ability a couple times and that gave me a little more energy. However, all meds have their side effects and withdrawal syndromes, but I just face those when needed. Keep me posted ok?

Oct 08, 2015 2:14 PM

I am on 2 types of antidepressants plus diazepam for stress when needed. I had a hand bike but the burning pain was so intense I couldn't cope, it was even worse on my legs. I have days where I can move around better indoors and then it feels like the plug has been pulled and I am wiped out completely. I have dobro, costochondritis plus other associated bit and bobs ro do with fibro, I also suffer from chronic fatigue. I totally get what you are saying about the need to push ourselves when we have no choice. Thank you for taking the time to respond x

Oct 08, 2015 2:17 PM

Gracegrower, oh definitely! You're welcome. So in response to your meds, they are something you've been on awhile it sounds like and probably not a cause. I'm so sorry your pain is so bad. I can't imagine and I dint claim to but at the same time I sure if I picture my pain(s) times 10 or 100 I can imagine 😁. I too get the chondro

Oct 08, 2015 2:29 PM

Oops.. Hit the send button to quickly. Anyway, here for you and I'm sure the others will be responding to you too. Sympathy is something I can definitely give. Gentle hugs to you!! Try to web search other interests you have or have had or crafting sites again and maybe soon you will be inspired. Give yourself permission to have an off day and maybe tomorrow you'll feel differently! And if not, keep me posted. I'm listening! 💕 I, too, am searching for ways to fill my days without feeling so guilty. And also looking for new hobbies. I think my aspirations may be too grand...sewing, furniture refinishing (gasp) (and I'm one handed so lol!) 😉 and painting like artwork! I have none of the above mentioned supplies or much talent but I'm determined to try everything once. Maybe twice. Lol (picturing a long break in between tries) hahaha. What about online or even snapfish picture books/scrap booking (you can totally download friends and family's Facebook pictures you like! And Christmas is coming! Walmart has great easy kiosks to to use after you download pics to your smartphone or a cd or even a usb thumb drive. Forgive me if I'm suggesting things still out of your pain comfort zone. 💋. I had another online idea but it has slipped my mind. So if I think of more ideas (and these ideas are helping ME too) I'll get back on and let you know! Boredom sucks! Have some fun on YouTube. Im 39, female and i like to watch videos on muscle pain relief, bed yoga lol, makeup application and fashion, or even favorite music videos. Hell even the laughing babies or cute puppies to make me smile are great to kill time with. Most importantly be gentle with yourself. Make some yummy tea and think of your friends here in us! If you find a great video or online craft tell me about it! Oh, u know what I've been obsessed with lately? Getting Showbox ( a feat in itself to download correctly and not so legal If u download movies) shhh...to stream to my smart tv or stupid techy research like that! 👍 talk to you soon!

Oct 08, 2015 3:21 PM

I had to stop working a little over two years ago could not do my job or deal with the pain. Actually wished I was dead because when I did get some sleep I would wake up writhing in pain. I try to be active as much as possible. If you do not move you just get stiffer. I do stretching everyday even if it makes me cry. On days when I cannot get out of bed I still stretch. I do yoga to the best of my ability, every pose is modified. I have a 20inch rod in my spine, previous rotator cuff repair's' same shoulder, rheumatoid arthritis in back, hips, knees, hands, feet and a platelet disorder that causes bone pain. That is my short list, haha. But hey I don't look sick, so not able to get disability yet, I am still fighting. Back to topic, I soak in long hot Epsom salt baths, garden whenever I am able I love to cook. I love music all kinds. I have been scrapbooking when my joints will work. I journal basically to see if certain foods or activities are impacting my pain levels. I still research my diagnosis to see what options may be available. Most importantly I try to participate in life and keep my relationships healthy. Family and spouse, most friends have vaporized, I guess they were not really friends. This group is a huge benefit. I appreciate everyone and try to offer support whenever I am able.

Oct 08, 2015 3:30 PM

I have heard that some yoga can help, I have been too scared to try as I can manage so little some days. But I am feeling inspired to try. I have never heard of yoga you can do on bed before? I do enjoy music and I watch or listen to quite a bit on YouTube. I think I will look up some different forms of yoga on there and see what I can cope with. Thank you so much ☺

Oct 08, 2015 7:36 PM

I have a select comfort bed so I can pump it up to 100 and it is really hard. No problem doing basic stretching. Yoga needs to be done on the floor. If you do not have proper form you can cause more damage than good. Try looking on you tube for basic yoga and modifications for _______ whatever you need. I started out in front of a mirror so that I could be sure I was doing it right. Many times you can find a coupon for a class, sometimes at the YMCA. Also physical therapists can usually help you too.

Oct 08, 2015 7:52 PM

Grace, to the point: how do I fill my days? I REALLY try to do at least ONE task every day. Just one thing that I can be like, "hey, I did a thing today!" It's helpful for me to be able to tell my husband when he comes home from work- look at the thing I did. Lol. And he's really wonderful bc he will be happy for me.

Other than that, same as the rest of you, I guess. YouTube, music, LOTS of Netflix. Oh, and I recently discovered that I can concentrate on graphic novels (aka comic books) even when I can't seem to concentrate on anything else. I feel like a jerk bc I was always a bookworm but I thought comic books were beneath me. Well, here's how the mighty have fallen. It's surprisingly good, though. Batman and Firefly graphic novels are my current favs. Also, just started PT this week and I'm hopeful that they can help me with my mobility and especially teach me stretches that will help me that I can do on my own. When the pain is too much for anything else, music is the best distraction.

Oct 08, 2015 11:12 PM

On the meds- my doc suggested that antidepressants really become useless after around 7 years. My doc weaned me and I found out I didn't need them anymore. And most of the new pain killers are what us old folks call downers. Just something to think about. Also, I am trying essential oils for energy, they seem to be working. I have no clue what the blend my niece is making for me.

Oct 08, 2015 11:40 PM

I pray. I sit on the couch almost all day elevating my foot above my heart. I surf the Internet and watch youtube. Once a day I force myself to go out and sit with my emotional support miniature horses and pet them. I sit on the trampoline and *try* and do some exercises. I hope to walk again after my foot heals one fine day. Right now I just take it day by day. My brother is my full time caregiver and helps with my kids. They take advantage of me now. It is what it is.

Oct 09, 2015 2:36 AM

I joined the local cinema club. Usually Mondays and Fridays me and my friend go and watch something new. It's the highlight of my week. The rest if the time I may plod slowly around a shop. Or try and help with the housework. One of my favourite pass times is making dog collars for rescue dogs. But after a few collars my hands become numb, my legs are dead and my back is killing me, not mentioning everything else. I do watch a lot of Internet tv, I hook my phone up to the tv and watch for hours. I try not to sleep during that day as I usually feel worse afterward but sometimes it's out of my control. I chat a lot on Facebook or listen to music. Just recently me and my friend sell at our local carboot to help raise money to take her kids on holiday next year. But every week is the same so meeting people at the carboot can be really exciting. Just the excitement pushes me back a few days. But it'll be all worth it in the end when we see her kids faces light up.

Oct 09, 2015 4:50 AM

Thank you all for your input. I have been on various anti depressants since the age of 15, I suffer from deep depressive episodes from time to time and it's not recommended that I come off them. I have a few ideas now as to what I may be able to try. I can't get out as no longer drive and to walk to the bus stop is too far for me. We live pretty far away from anywhere that I can visit. I am hoping to be able to get a road safe mobility scooter so I can get out locally. The one I have toppled over twice as our pavements are so slanted. I going to look up the yoga (very basic) I have my dogs that keep me company but can't walk them any more but they are such a blessing to me.

Oct 09, 2015 10:15 PM

Gracegrower, my days start with gentle stretches so I can get out of bed easier. Fibro and OA stiffness makes it hard to get moving. I do my best to stay on a schedule every day, even weekends (7:30 am up, 10-11pm to bed), even when I don't sleep, eat on schedule, shower on schedule, etc. It takes most of my energy to shower and dry my hair. It was below my chin until this week, when I cut it really short. It now takes only 5 months to dry it!

I felt like I was becoming a couch potato, and was feeling pretty guilty because there are so many things to do but I felt like I wasn't doing enough.I talked to a counselor and they helped me set small goals, like decluttering, organizing my medical records, budgeting every day, exercising at least 10-20 minutes each day (unless I'm unable). I started exercising a month or so ago and now I'm up to 15-30 minutes a day, at least 3-4 days each week. I've decided to organize my papers first and I try to work on it at least 1-3 hours most days, taking breaks to rest my hands and back and neck. Then when I'm able, and can remember how, I cook dinner. I watch TV, read, and use my tablet and computer throughout every day. That is when I'm not at an appt.

Don't beat yourself up. Just start slow and steady, choosing whatever is most important to do. We didn't get this sick overnight, at least not most of us, so it's not going to improve anything overnight either. I don't ever expect to be as physically fit or able as I was five years ago, but I intend to be the best I can. (((Hugs))) and prayers for you! 🙏🌼

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