There are specific strenghtning exercises one may benifit from even with degerative disease. ..it may lessen symptoms. I have a collagen hypermobility syndrome that progressively worsens with time.. My doing proper PT can delay some sypmtoms. Stabilizet muscles need to be focused on strenghtning more so than the mover muscles. NOt everyone knows which muslces those are or how to activate them. they do not cause damage and only need to be initiated in baby steps., building gradually.Quality not quantity is important

Thank you for this! I have a few different chronic illnesses. This is honestly the very best way to describe to someone how a person with chronic illness lives. I have used this to describe my illnesses to my husband and my mother along with some of my friends. Thank you again!

Melanie..I understand. Love, Kay

Some days, my mental illness leaves me without any spoons for the day; or do I need a spoon for sleep? If so, I have one spoon used for the day.

In my experience, if you do something with no spoons left, you definitely don’t get more spoons the next day, you get even less. It’ll sometimes cost you spoons for days after.

I’ve always hated the idea of “no pain, no gain” or “work through the pain”. That may work for some things in life, like a healthy person exercising, but you CANNOT apply that logic to a “spoonie”. “No pain, no gain” implies that you can receive a gain, a reward. But for us, the reward system is broken. I don’t get rewarded when I force myself to keep going and “work through the pain”, I get punished. Let’s say I actually feel up for going for a robust walk. I’m moving forward, right? I’m making my body stronger! But then you go on that walk and for 3 days after your body hurts so much you can’t even leave the house. You can’t even shower! Is that moving forward? That little gain you may have received by that cardio work is overshadowed by being unable to do even minor cardio (Like going to the store or meeting a friend) for days after, PLUS extra pain for days. That’s punishment, not a reward.

So remember, “no pain, no gain” for us is “some pain = more pain”. Dealing with chronic illness and pain is NOT like exercising.

I suffer from fibromyalgia, which was caused by an injury to my, I’m gonna say hip cause it’s too much to explain, it put me out of place with my legs, one being longer than the other, and it refused to respond to standard treatment. In the time between injury and first surgery, the other side had become damaged the same way because of taking all the responsibility of me being able to walk. I dragged my leg behind me for years. The first surgery also caused my pelvis to be tilted in reverse and the pressure of the out if place left leg, the new injured hip, and pelvis angle pressed against the disc at the base of my spine and caused it to become a bulging disc, it’s also slipped slightly to the side. That disc alone is able to cripple my legs and give stratospheri pain. Things that set it off, standing, sitting, bending, turning at the waist, reaching for something, picking up a plate to set down for a meal, walking, driving, laying on my stomach, side, back, any form of excercise…everything I do including reaching my arm out just to move it for blood flow. Though the injured hips are both now fixated and turned into solid bone, meaning what once allowed me to have a shock absorber for any kind of impact to my body at any spot, like something as simple as crossing my ankles to walking, to riding in a bumpy car, to putting on my shoes, feels like I jumped from a plane in a parashoot and pulled the cord late and landed so hard I broke my lower back. But it’s my whole body and it’s everything I do. The disc is one of the easiest things I deal with and one of the worse because it blocks completely or interferes with everything I try to do. I also Have Epstien bar syndrome, the chronic version. Chronic Migraines. Mild Sculiosis,I think it might have healed through my use of corsets as a prop to hold me up so I can basically multiply my spoons for a few hours over the course of no more than two days in a row. It squeezes my pain to the point I don’t feel it and I only have to deal with the rest of my body. I gained weight excessively from food allergies and not enough money to buy the food my doc recommended and was and am unable to wear a corset because I buy off the rack and am too poor to buy even those the last three years so I’ve been unable to wear it so I’ve been unable to use it to pretend to function like a normal person and get a bit of ‘exercise’ by getting out of bed and just being able to walk around my house let alone do anything real. I’m losing weight and hopefully will have dropped enough to wear one of my older corsets that I didn’t get to break in, whole other health tragedy, by mid summer. How I’m losing the weight is the IBS-CD I suffer from has been flared for 4 months and it’s worse than ever to the point I may have developed Chrons disease or lupus or Ulcerative Colitis or some other lethal immune deficiency disease like the ones mentioned, I suffer 24 hours a day from that alone but it’s not alone, I have been experiencing for about 6 months, constant cramping in my uterus, like the worst day of a period, and I thought it was IBS induced but learned it’s not. It feels like the fibroids I suffer from that I found out after a miscarriage in 2013. Fibroids, among other things, knock the fetus from the uteran wall, inducing miscarriage. I am childless. I am devastated. I’m 45 and still haven’t found peace. I am cramping all the time. Fibroids are lethal. I know nothing more because GYN’s in my area don’t take medicare. It has gotten worse day by day. It used to be days of breaks, it’s escalated to cramping all the time, the pain increasing to the point that it’s unbearable. My abdomin at the uterus distends and becomes hard, I look like I gained all weight back. My belly distends from the IBS. Both are constant pain. The cramping is so bad I have to stay in bed. It hurts too much to move. A full bladder is literal torture. It saps my energy so I can’t stay awake but hurts so much I can’t stay asleep. I use heat on it, drink the most carbonated water I can find, have very little appetite unless my meds hit me wrong and I get mildly high and the munchies. My husband had to cook for me. I feel sick and nauseated most of the time and have extra drowsiness and trouble thinking. Something more may have developed. I also Have ovarian cysts. I have undiagnosed problems in my left shoulder. It is curled from the muscles staying in spasm and half it’s size and when it gets grumpy, I can’t use that arm. I have severe depression, panic attacks, obsessive compulsive, half my teeth are pulled the other half just rotting away since the dentist broke our deal, I chew with my constantly breaking and billowing front teeth.All are full off holes, and breaking apart, cutting my tongue and cheeks up. I have hypertension. PTSD. The side effects of the fibro keep my body so swollen I can’t remove the two rings I wear and it hurts to move. Everywhere. Walking was recommended and is always recommended because my doctor can’t remember my injury, so since I can’t do any other aerobic exercise, he keeps recommending. I respond well to swimming, if I could afford a pool that didn’t have too much chlorine, which sets off my migraines, I’d swim. Now here is the important thing about your letter, everyone in my life knows what my health issues are. Every single person has told me, in stern lecture mode, that I need to start walking, as if it’s there business, then accuse me of not doing it because I’m being difficult on purpose. They lecture me like they know me better than me. Telling me, as if I haven’t heard this for over twenty years, that I need to get up and move about every day. Pick a chore and do a small part of it, building up my stamina on a daily basis and with the addition of walking, and just dealing with the fibromyalgia reaction, that is like getting hit with a brick wall and flattened in bed for days or weeks. But since they have decided the know my medical issues better than me, I need to just do it because they are so strong and would just fight through so I should do the same. It’s an order. Majority of same people can’t remember when they invite me for a meal that I’m seriously allergic to gluten and dairy and don’t tell me they are making a meal heavy with those ingredients to give me a chance to bring my own food.And the expect me to eat it. Most forget or just don’t care or maybe believe about the disc and that walking sets it off severely and I will end up on the ground when my body gives out and shuts down on me. I do try doing stuff. It never turns out well enough to let me keep up with it. The power of loving someone is incredible. When my husband ended up in the hospital last summer with a gall bladder going bad, I had been dealing with awful inflammation all over my body. It was like being an overinflated balloon only the space filling the inflammation was like being filled with blood in gel form that was liquid pain. My feet were so swollen they rolled from being so squishy when I walked. My whole body like that. And I could feel my individual bones and joints, like having an extreme case of arthritis. Even in my feet. I felt the squishy hit my bones and could feel the bones in my foot so strong and painful I could envision my feet and the bones shape. My back spasms into Charlie horses up and down until not one is loose when I do stuff, especially when I overdo it. I found the mental strength to overcome the need to be in the Emergency room myself and I stayed at the hospital, took the lead, took care of the dog at home who was close to dying. Every step was like walking up a hill at a ninety degree angle and I was dragging extra weight. But I made those treks. I got the job done. He got through surgery, came home, I drove him, he has other illnesses so his recovery was not just days but six weeks. I got up at 6 am, like usual and took care of the dogs needs, which involved picking him up, putting him down, carrying him, and he was about 60 pounds. I’m not allowed to pick up that much. But I did it. Did the grocery shopping for the month with mom in law who was paying so we’d have food. I gave out before the end. I made food every day. Did dishes. Did aftercare taking. Took care of plants mom in law decided I needed to be doing and bought the stuff despite my repeated reasons why I was not willing to do gardening in our particular yard. But she wanted me to and I wasn’t going to kill plants to spite her. For six weeks I fought my body, suffered, cried through it, had the fibro shut me off like a switch and be passed out on the bed, wake up and go back at it. At no point did it get better, easier, extend my time daily able to do stuff or have any positive or healing affect on my body or my illnesses. Still, I am being judged, told to walk, how to take care of my belongings down to suggestions of things I should rid myself of. If I just give it a try, I might see some results and get better, calm or reverse the fibro. Forgetting the disc that does not allow for walks or exercise that I would happily do. I’m just being stubborn, a bad wife, unfair partner to my husband, a selfish person. I have always attempted walks and tried regular attempts only to end up in bed for weeks. I have done home exercises until I got so sick from the new stuff I couldn’t try. The stretching felt good. It didn’t fix or change a thing. The people in my life, some gone, have all felt that it was their right to tell me what to do and explain repeatedly in detail what I was supposed to do in order to increase my time daily, get stronger, healthier and be a better person. No one hears me when I say I’m, I do that. They talk over me, my mother calls me a liar. That’s the other part. The abuse. I’ve been verbally abused by people I loved so much. Because I wasn’t easy. My life is depressing and a burden to them and they don’t want to expend the emotion or effort on me. My mother was and is the worst. To this day thinks she knows more about my health and what I need to do to fix it, that I’m just refusing to do what the doctor and her are telling me to do and when I lived with her cause I couldn’t take care of myself, she would yell, threaten, accuse, blame and punish. I almost killed myself on three separate occasions. We are at the end of our ropes and every day is a fight to live. If we could do something that helped, we’d jump on it and do jump on it. But it’s hard to love yourself or like yourself when your world is a living torture and the people you need understanding that much, treat you like a disappointment. Stress makes it worse. Suggestions we do things we’ve heard from everyone from our doctors to our friends and family and strangers make us angry, hurt, stressed and that makes us sicker. So that’s your answer. Hope it helps you understand someone better and maybe, help. Baby them. Comfort them. Tell them you’re proud of them. Cause they need it, and so much more.

You COULD just use the share button, which is what most of us have done. It is printing that is forbidden by copyright.

I love this thank you.I have RSD and would love to lay my family and friends know about this how do I go about getting permission to share this post on fb? Is that possible ? I know people mean well but I can’t take the “you will be better soon, or your still sick? ..etc ” they don’t understand the one that hurts the most is you would feel better if you just got up and moved around more try and exercise I can’t even imagine how many spoons that would take 🙂

SO VERY TRUE! I just wanna scream every time I see commercials or other info stating “research suggests” or “doctors agree” that exercising helps ease Fibromyalgia pain. I wonder how many people with Fibromyalgia they have actually listened to. Not to mention, that is is VERY common for people with Fibromyalgia to also have other chronic illnesses. For myself, that list includes Polyneuropathy, Interstitial Cystitis, Osteoarthritis, Sciatica, as well as a plethora of other issues causing pain in my lower back – herniated disc, degenerative disc disease, and extremely tight muscle knots that never go away. I don’t have a single day pass that doesn’t include debilitating pain or fatigue. When simply running household errands or other chores takes everything out of you, how can they expect exercise on any regular type of basis? I’ve tried even light walking around the neighborhood, and so far, I’ve never been able to accomplish doing it more than a couple times a month…forget being able to do it enough times in a week to get any benefit from it.

Do you struggle with a chronic sickness?

There is no recovery. There is no increasing what you do when you have nothing left. What you are suggesting is not only ridiculous, it’s dangerous.

IP you are trying to be nice ..
But I”ll be blunt here dude …. you don’t get it … you assume there is a recovery . some things just can’t be fixed …. sometime there are no more ” spoons ” on the table .

I want you to know that the spoon theory has BLOWN UP and become absolutely ENORMOUS in all circles of life from mental illness to physical disability. This “spoon theory” has completely revolutionized the way people talk about their struggles. I tell people “oh I don’t have enough spoons for that” or “today is a good spoon day” all the time! I also see it all over Tumblr, Facebook, and hear people talk about it in real life in passing.

So you’ve made a HUGE difference to all these communities and I personally would like to thank you for that.

Exercise is GREAT for building and/or maintaining strength IF ONE DOES NOT HAVE A DEGENERATING DISEASE. Remember that injuries take time (and energy) to heal. With degenerating conditions, anything one does can cause injury to underlying tissue, which will require healing. Yes, one can push beyond one’s spoons and borrow from tomorrow, but there comes the point at which one must spend DAYS in bed to recover if one borrows too much. Hence the need for spoonies to remember to hold on to a reserve of spoons rather than keep pushing the envelope because OUR envelopes tear easily.

It’s great that you are able to come up with a way of explaining your feelings but just wondering how helpful this is for someone moving forwards? Surely the way to recovery involves increasing what you can do day by day. In a way doing something despite having no spoons left, so the next day you will have more spoons.

This is so me, Diabetic, post 3 strokes with in 2/12 years, and while I can borrow a little, I find borrowing takes 2-3 times the amount of time to regain.. sometimes people just dont get how driving 5 miles away takes a plan… or if 1 little thing is added to a planned outting my day is off..

I suffer from Bipolar and I do see myself as a spoonie, I didn’t think it entirely explained my illness.

Spoon Theory explains existing with many mental illnesses, including a debilitating depression in myself, but I suffer from mania too. So sometimes instead of not being able to do something because I am out of spoons, I have to do something even though I am out
of spoons.

It feels like a knife to my back. It feels like I
am running on a knife edge. I can’t stop doing something, as unhealthy
as I know it is for me. It’s a compulsion. It’s not the ability to do
something, it’s the inability to stop.

So I added knives to the
theory. Sometimes if I have spoons, I can knock the knives away. When I
am out of spoons there is nothing I can do to stop.

Please
don’t make jokes about how I should come to your house, when you hear I
spent 5 hours cleaning a cupboard, or did 6 loads of laundry, or
reorganised the bookshelves in order of something that only made sense
at the time. It is very insensitive. It hurts. My activity is a bad
thing. Doing something uncontrollably is the only thing I can do not to
cause myself permanent damage.

I am surrounded by knives and I can’t fight them off, all I can do is what they tell me to do.

Thank you, I have been looking for a way to explain the way I feel to people who just don’t get it and this is exactly how I feel most days and it gets worse when I get sick. Again thank you.

Thank you so much for this. Not only did the article hit home with me so strongly that I was in tears, but it was also the breakthrough I so needed for my husband to truly understand what daily life is like for me with Fibromyalgia. Again, Thank you!

Fabulous description to pass along to family members, friends, coworkers, children, this will help them understand better. Thanks for sharing!

I read this yesterday for the first time, I was recently diagnosed with Lupus. It put into words exactly how my life has been for so long. I was in tears, I could not have explained it better myself.

Thank you for this. Gosh I have never seen a more perfect explanation.

Last year, I was informed that I have an auto-immune condition. I first fell ill in November 2014, mind you. I have not had a full diagnosis yet, though current suspicions are Hashimoto’s or any other forms of Thyroiditis. I tend to rate my health with a feelings scale (horrible being the worst, it means I may require a trip to the hospital…good being the best, it means I can accomplish some tasks and not feel too undone afterwards).

There was a day though that Dad came home from work and saw I had managed to do some minor housework. He jokingly asked “you sick or something?” (I was not offended, he used that when I was healthy and had done housework without being asked) and I replied “yes, but I had enough spoons to manage it today”. He’s been hearing me talk of the Spoons theory ever since I was introduced to it through posts shared on Facebook and is understanding that there are days my spoon count is low so I am not able to do much (also rated as an Ugh day), but there are also days my spoon count is a little higher than the day before so I can at least manage a couple of easy chores without risk of overdoing it (also rated as a Good day).

It at least helps my father understand I am not being lazy, but simply just can’t push myself.

Thank you! For years it has been so hard for me to explain to people what it is like to have Lupus, I mean to really have Lupus, and this explains it so well. From now on when someone asks me what it’s like to have Lupus I’m going to have them read this so they can understand what my life is really like with Lupus.

Despite having Crohn’s for 10 years, I never thought to look up what spoons meant! This was a moving and relatable post. Thank you!