One common issue with chronic pain is that it robs you of being able to do certain activities which you enjoy or have to do (e.g. household chores).
As a first step, we would like to find out which are the most common activities that you are no longer able to do (or you are limited in doing them) because of your pain. As a second step (in a different discussion thread), we will try to come up with ways to do those activities despite the pain or find new activities which can replace the old ones.
Well, let's jump right into it: Please make a list of your top three according activities.
Here are mine: 1. working at the computer (I am an IT guy) 2. playing computer games 3. I used to fence but had to stop because of my arm pain
My biggest problem is being able to stand for more than 5 minutes or walk for more than 5 minutes I Push myself to walk because I am over weight and its really hard because I go through seizures to especially if I am in a lot of pain
Well things I can no longer do.... 1. Housework (is very difficult and takes me a long time. I had to hire cleaners, they come in one a month and I'm lucky if the place has been tidied and dishes get done once within that month) 2. Yard work in summer and shoveling the walks in winter. 3. Being around people (because of noise and smells and the fact that my short fuse has gotten even shorter and I snap very quickly now)
Sweetie pie I am sorry but no I haven't had sex but 2 times this year. I could care less if I never did again, my husband disagrees. Lol It hurts during and afterwards it is so not worth it. He has a cussed me of cheating on him with someone else which is stupid if you think about it. I was hurt at first and then I got mad I told him how dare he think that if it's that hard for him to get it what makes him think I would give it to someone else. Sorry for being curde. Maybe someone has a better idea.
I used to love cleaning my house top to bottom,cooking elaborate meals but now I do good to cook one pot meals. I loved gardening vegetables as well a planting flower beds. I can't do that any more. I tried to have a veg garden this year but I landed up.in bed for 3 days. I tried to weed and pick veg and couldn't even make it over 10 min. Had to quit and lay down in bed for rest of day. I now have to try and stay healthy now because I am having to help raise my granddaughter who is 2 1/2 months old thank God I can lay on the bed and play with her for now, she is getting heavy.I'm afraid I won't be able to pick her up and tote her around.
1. House work - i have a cleaner every two weeks now 2. Gardening - i am thinking of getting a gardener 3. Socialising - i am missing more and more social engagements due to fatigue and not being able to face long drives, i.e. more than 1 hour
There are way more than three things I can no longer do our do as easily as before. Specifically concerning functional things I'd say 1) shopping alone, 2) driving is much harder, 3) house cleaning (my house use to be sold & span clean... No more), 4) yard work & gardening...
Purely for pleasure I've lost 1) sewing & cross-stitching, 2) vacations that included a lot of walking/hiking for sight seeing, 3) found out today I can no longer swim because of lower back pain, but I can still float, 4) any crafty home improvement (I loved doing crafts, but no more).
I'm sure there are more but I'm tired... Add 1 more, I can no longer think/remember clearly! Lol 🙏🌼
When I have what I call pain attacks, which just show up whenever they please, I cannot:
1. Work. I work for a major warehouse store which requires standing, running, lifting. I can't do any of those. 2. I used to walk and hike with friends and now I can't. I'm so bummed. 3. Can't drive, I am on narcotics, I won't risk a dui nor want to hurt anyone. 4. Can't pick up anything over 15lbs. 5. Too many to list...
I no longer can work. The standing, walking and lifting for ten hour shift was totally impossible. Walking long distances is out. I had to change how I do a lot of things and lots of breaks. Sometimes the breaks seem longer then the accomplishment of the task itself. Lol But I will not give up certain things are what makes life worth living. I can't dance more than ten minutes at a time, but that ten minutes is a joy.
So many but the things I miss most are; 1) horse riding - I was training for my Assistant Instructer award when I became ill. 😞 2) being impulsive. I used to get up and just decide to go out for a long walk or swimming in the sea or driving long distance just for the hell of it. Sadly no chance now! 3) Actively working. I enjoyed working. Prior to becoming ill, I was taking a degree (in my thirties), working part time as a TA and raising my two children, as well as night school once a week. Activity was what I lived for. Staying still was not on the agenda ever. Losing that freedom is incredibly depressing. Today, my son and I popped in to our local mobility store and he said I should get one of the mobility scooters so I can join him and his sister on their bicycle ventures. It made me sad as I'm still not ready to take that step despite walking with two crutches. P.
1. Sit at computer- I was a legal biller and office manager 2. Socialize- I can no longer go out in public, I am a self made hermit 3. Dancing- I used to go out with my best friend to dance and socialize. I have pain in legs now and attention span is almost a zero. 4. Talk to people- I get anxiety or lose train of thought. Hard to articulate.
Oh yes, and as weezy12 mentioned, sex. Drive is big fat zero. So I can honestly say it's been almost 3 yrs. My now ex also thought that I was cheating on him, he just could not understand Fibro and want it does to one's body.
1. Volunteering at my local animal shelter(hopefully, with shots will be able to do this soon enough) 2. Housework(still can do, but it takes me a very long time) 3. Going for Sunday drives(sitting in a car more then 30-45 minutes is intolerable)
I used to be a neat freak. Super organized. Now vacuuming kills me! Hanging clothes on hangers, drying my hair hurts my arms. And yes, sex is almost nonexistent. Blessed to have an understanding husband.
I miss hiking/walking. I miss work I miss doing spontaneous activities, everything is planned depending on how much pain I'm in. For example, "do you want to have lunch tomorrow?" "If I'm in no pain, of course!" That happens rarely. I miss waking up pain free.
I know I also miss waking up pain free. I don't think I would know what to do if that happened to me. Every morning I wake up with neck, back,and pain radiating down my thighs on the outside of my rt side as well as my rt shoulder I have pain that radiates down into the inside muscle down into my arm, down to my elbow,wrist and hand and fingers, my left arm has numbness in my hand. I am a wreck.Lol !!!
Weezy12 I have the same happening to me. No one in my family understands, they often think I'm just being lazy or something that I could just SNAP OUT OF if I want to. Everyone except for my 14 yr old son who has just been diagnosed with depression and anxiety. He understands me. He does not have fibromyalgia but we talk about it and he understands me. The pain I have when I wake in the morning and throughout the day, how hard it is to get dressed, brush my hair, or put on makeup. I no longer do any of those things. I'm in my sleep shorts and shirt all day, keep my hair in a ponytail, and no longer wear makeup. I hardly get dressed up unless I'm going out, which is rare. Now my arms, hands, fingers, legs, feet, toes tingle and painful Like a tight rubber band been left on too long. I cannot go outside, I just sit all day in the same spot on my sofa. I hate who I've become, sometimes I wonder if I'd be better and off not here. I don't know anymore. I used to be so independent, now I just don't know anything anymore. :(
Dalyay you do need to be here what would happen to your Children if you weren't here for them. Who would take care of them, I know that it can get so depressing at times. But you have so much to be thankful for, I know that sounds crazy but if you stop and think about it you have beautiful Children that are healthy. You are able to get out of bed every morning even if you are moaning and groaning as you sit up. If you are like me I sleep on either side and I have to throw my legs out to the side of the bed then push myself up by using my elbow then push myself up. You can walk around your house in your sleeping clothes which I am guilty of doing, I hardly ever put clothes on to go somewhere. It's so hard to get motivated when you hurt all the time it's such a chore to go down the steps, and climb in our truck to go somewhere. I am guilty of running around the yard in my PJ's, we have to go out side to the shed to wash and dry clothes that is where my washer and dryer is set up at is there isn't room in the cabin. I know you feel like you are useless know that you can't do like you used to do. But there are the small things that matter to your Children sitting on the couch with them talking about their day, asking if they need anything you can still give out hugs and kisses. Play board games, listen to music with them watch TV together. Some of these things you can do laying down if you need too. I am finding out all types of ways to spend time with my granddaughter while I am in bed. Make no mistake you are needed and loved by your family,so b you can't do everything like before but you can still be there for you Children. Because they still need their mommy. Will keep you in my prayers.
Hi Everyone, This pain took my lively hood been out of work for 2 years, cooking, laundry, traveling, sex, exercise, driving, sitting, standing, sleeping, housekeeping chores, socializing, hobbies, and dance.
Camping. Been going for 20 years. Riding my motorcycle? I can if I really push myself but then I'm down for 2 or 3 days. Luckily I work from home. Medical transcriptionist. I wouldn't be able to commute anymore. I barely have enough energy for the typing. So I am in tons of pain if I sit, stand and more recently sitting down. Every inch of me inside and out constantly hurts. I have lost my smile which was always there. I rarely find myself happy anymore. My 40th class reunion is coming up on August 1st. I am praying I make it there. So many good friends ... I can't play with my 7 year old grandson like I could even 3 or 4 years ago.
I miss loads of things I used to enjoy and take for granted and I'm trying to find ways to make it possible to enjoy some of my hobbies again.
Woodworking Walking Fishing Going to the park with the kids Going for nights out Going to the cinema Sitting on the computer or tablet too long Camping Gardening DIY Drawing,
I find it really difficult to let go of my hobbies as I was a very hands on crafty person and now I get pain doing most of the above, tried to just continue as normal but it became painful and I would end up in bed for days to recover, also hate the thought of getting people in to do work around the house when I know I can do a better job than they would and at a fraction of the price and having to bite the bullet and admit defeat gets me down, so now I do the small things and plan them over a few days and just get tradesmen in to do the big jobs that would take me more than a week to do, things like replacing the bathroom suite and fitting a walk in shower, I can do all the joinery, tiling,plumbing and electric work but I don't want to start a project like that and have a flare up halfway through and end up with no working toilet and shower and an angry wife and 3 kids nagging my head off so sticking to small jobs that don't have any urgency and can pace out over a week
Thank you weezy12 for your inspiring words. You're right,, my boys need me. I just need to learn to space myself. Try the "spoon" method. Sometimes I over do it because I'm feeling good, then I'm down for a few days because I went overboard. I haven't found my happy medium yet but I'm working on it. I'm planning on starting a diary that includes pain levels, med intake, activities, and food intake. I know that it will take awhile to set up because of the pain in my upper body (took me 30 minutes to sweep and I have a small house) which prevents me from doing many activities which involves my upper body and when I sit too long my lower body pain is excruciating. I'm working towards my goal though. Thank you always sharing inspiring words.
Whoops that was just #1 and I'm going to add dancing, skating and horseback riding to #1
2. Having the energy and mind capacity to hold an educated conversation after work or school. I work and am working towards my Masters in Nutrition and have barely enough energy to accomplish these tasks
3. Not having to be a walking pharmacy. I'm in my early 20s and take quite litterally a handful of pulls in the am and pm. All say consult with a dr if you are considering getting pregnant. Eventually I do want kids. Though I have always wanted to adopt the fear of my meds causing problems for my future baby(ies) is something I wish I didn't have to deal with
I can't go out & shop I can't exercise go for a walk or anything. Not even swimming this summer Enjoy a good roll in the hay Cooking, cleaning I feel like a big blob of nothing I can't make the bed or do laundry like I use to Just to go outside to be outside I can't enjoy I had to sell my skin care business I'm struggle each day to have a good out look on my day but it is not easy but I'm glad when I can go to sleep each night & struggle with the next day.
I have recent pictures of a parasite that is causing pain but I haven't shown my kids because they refuse to believe me. Instead they choose to think that I am unstable. It is very hard when people feel that they can know longer trust your mind when people a couple months before and still do call and ask for advise and whatever wisdom you might be able to share with them. I use to be known for my strong mind and physical strength.
I use to love to cook. I would cook 3 times a week. My wife and kids loved my meals and looked forward to what I would create. I can't do that like I use to. My right dominate arm is almost useless with excruciating pain. I cooked three times in two weeks but I couldn't eat right away. I had to tell my family I wasn't hungry yet because it was to painful to hold up a fork after cooking.
I loved vacations, mainly going to the oceans. I mostly see God's power and beauty in the ocean and the human body so I miss going to the ocean and seafood.
I miss music. With all the medications my doctor has me on. It has taken away for the most part, the joy of music. The feeling like you want to move with music.
I miss intamacy with my wife. Sex too. But intamacy more. I miss holding her. It is to painful. I miss touching her face, she doesn't like that anymore. Intimate kissing is gone. I sound like a girl. But I liked making my wife happy and making her feel special. I liked being at work and picking up flowers once a month.
I miss going to church and seeing my many good friends who love me. Every time I am able to go, it is like they are meeting a new person. We missed you. So glad you are here. They mine as well ask where the heck have you been? My interpretation. They are being kind. I just feel bad for being to ill to be there. I listen in by phone. I just wish they would say hi? How you been? Like I have been there all the time and I am not like the agoraphobic I have become with this disability.
That will be the end of my list. It could go on. But you all would want to throw eggs at me😀. Hope everyone is feeling as best as they can today
Profiler, you have NEVER sounded like a girl. Do you know how difficult it is to find a man who wants to please his wife and make her feel special. Touch her face and make her know how much she's loved?? There are many men who like to hit it and then roll over and go to sleep. I am so sorry that children don't believe you about the parasites. You have been in a bad way with this for quite some time and have had no real resolution. You are always here willing to help others feel better despite how badly you are feeling. I think you're a wonderful man and I pray for you and hope that you can get some help and relief soon. Is there a link you can put here so that we can see the most recent of these parasites? I'd be interested to see what it looks like. I have to go to the doctor next week and he deals with all kinds of problems, perhaps he would be able to give me some helpful information to pass on to you. Hang in there, Proiler, I'm here for you!! 💕😊
Profiler, you are a very sensitive and caring man. AlwayZ is right about. To many men are "wham, bam, thank you mam" and gone. I use to think my hubby was different because he always gives me or misaddressed me, regardless of inability to have sex. Now he never kisses me more than a peck and rarely hugs me. But because I either have thrush or sjogrens related reached in my mouth he treated me like I have the plague. I miss the surprise hugs & kisses he used to give. He also never brings home flowers to chewed me up and say"love you. ". Chronic pain has totally changed all our lives, and our families. 🙏🌼
Flappsy, that is so very sad. I'm sorry that your hubby has been less than attentive. From what you've said about him, he sure loves you. Perhaps you should chat with him and tell him that you miss a loving hug, a gentle caress, flowers just because. Perhaps he has gotten into a routine of worrying that hugging you the wrong way might hurt you but he may need to be reminded that gentle, physical contact is wanted and needed. I think some men have difficulty with intimacy with no sex. Kind of sad actually because intimacy can be so much more than having sex. Sending you hugs and I hope that you can chat with your hubby and perhaps he'll surprise you. You're in my prayers. 💕🙏🏻🌻
Thanks AlwayZ. Wow, I had no idea at the auto-correct errors in my post! I have talked with him several times over the past three years, and he may be more intimate occassionally, but always goes back to routine. And sadly, my sjogrens caused rash &thrush in my mouth he said he didn't want to risk catching either so he won't kiss me except on the cheek most of the time. He is really good to me, but I miss the hand holding, hugs, and kisses. Cuddling can't be part of it because he always seen that as "soon goody!" Not!!! Lol I hate what all this has done to my life, his life, everyone's lives! I think we should have bought a loveseat recliner instead of 2 chair recliners. 🙏🌼
Not to sound awful, but I am relieved I am not alone. I thank all of you that are sharing your feelings. My family thinks I am isolating. They don't understand how exhausting it is just to shower and try to look presentable. I've tried twice in the last 8 months to return to work but the exhaustion/adhesion pain always takes me back out. I LOVE my job. I fought to get this job then this happens. My job is all physical. I'm terrified that I will have to change professions and/or will be let go. My family and friends are all telling me to find a different job, a desk job. I might have to, I won't be able to live on disability forever. Maybe I'm in denial and think the adhesions will just go away, and I'll continue working as I was before. I miss hiking, walking, playing drums, running on the beach, and work!
Logic puzzles. I used to do them all the time, now I am lucky if I can read through all the clues without messing something up Walking. I used to like to walk a lot but now i find that if I walk too much I pay for it dearly Remembering things. I used to have a great memory for my job. I remembered dates, names, numbers, etc. now I have to write everything down Housework. I used to be able to keep up,now my husband has to help. Makes me feel like less of a wife and mother
Both work and college. I have my good days but my symptoms are too inconsistent to be a reliable employee/student.
I can only choose one "major" activity for the day which means I have to pick between showering, grocery shopping, cleaning, cooking, or being social. Most of the times eating (cooking) wins so I go days with dirty hair, or seeing anyone, or even feeling like a human being.
Having kids right away. My husband and I have been married 4 years and want children desperately. But between my knee surgeries, Fibro pain and meds all resulting in weight gain I'm just not healthy enough right now so we keep waiting.
Photography. I still take pictures occasionally but I pay for it dearly. Holding up a camera really flares me up.
Being outdoors much. I can't go anywhere that I won't have a seat to sit down and take breaks In. I can't lay on the ground, go hiking, and light and temperature sensitivity means no going outside at all some days.
Hi Danie. I have read your posts and I play games on my phone. It helps my mind and my pain. I will havedays where my pain is so bad. I have to rest. I'm always doing remedied without taking my pills. I hate pills because during that time when I take pills I was dizzy and tired and my body was different so I decided 4 months ago to stop all my pills and I still feel pain. Pills do not work at all because after awhile your body gets immune to it. I only take Tylenol for my Chest pain and it goes away. The pain I get everyday that will never go away. It only lessen it.
Every time I walk I feel sore and wrose and even swimming. I was always very active when I was a kid and adult life. I feel worse when I walk and jog. But my rheumalogist I can't run anymore only walk and swimming. I feel like I overworked my muscles
Oh, can we add more? Haha! I can't work, stand long, sit long, can't even shower & wash hair everyday, can't drive much cause also have narcolepsy and hypersomnia. I have found a light sweeper stick I use during the week cause its light then hubby uses the vacuum on the weekends, and I can use the swiffer to mop but can't use a regular mop, its hard Some days just to fold laundry but I also have a lot more going on than just fibromyalgia. Multiple chronic pain issues.
1.dancing - used to dance 4 times a week not only lost the dance but the friends with it. 2 . socialising - always end up cancelling or venue unsuitable. 3.housework - further and further behind with the jobs.
So true LMB, I have been hurting badly since the back procedure and I have been over doing it since yesterday, son had 2 football games and today hubby and I are currently picking up his 1969 car from our friends and then off to the storage unit to try and empty it then head home and that's a 2 hour drive, then I have to make dinner and head on out to the fair to see me daughter's art work that the school put in. My kids keep me going and the pain trys to keep me down.
Pain has become my master. It controls my activities, socializing, creativity, mental alertness,and quality of life. It is an unwanted guest on vacations. It craves meds and inmobility. It makes me want to hide like a wounded animal. I miss the transcendental experience of being in nature. The reward of volunteering. The creativity of photography and having my work published. Being totally engaged in an activities without the nagging pain at my side. Feeling free is a distant memory.
Work at the job I went to college for. Housework. I cannot clean my house the way I would like it to be. Sex is too painful. Plain torture and putting a strain on my marriage. These are three things I cannot do anymore because of severe backpain and spinal issues. I am 42 , married with 2 preteen daughters. Not sure how long I can do this for. So tired..so much pain.