So I went to the zoo today with a friend…walked around pushing my daughter in her stroller we walked up to the gardens…about a mile up an extremely steep incline. Felt pretty good doing it. My knee was hurting. But good still. Then came home and took my son to ride his bike was walking again. So it was 6 pm-so been going for 12 hours. (Normally I home and stay active at home-but take lots of breaks in between doing my chores-etc). I cam home made dinner for my cute little ones. Sat down and OMGosh…just glat out exhaustion. Felt like I had been beat up. Just a huge overall ache through out my entire body. I just sat there also barely being able to stay awake-and thought how much I could be doing. I have so many chores to do-since I was out all day…and I literally could not get up. Or couldn’t bring myself to get up. Or even make myself dinner…uhh. I feel so lazy.
Anyways I have my follow up tomorrow. 2nd rheumatologist appt.
Oh goodness…should have previewed this…sorry for my grammar/spelling errors. Lol
I have made this mistake so many times in that last few months, I get one good day and completly overdo it and then pay for it for the next 4 days!
My flare seems to be calming down but the soles of my feet still hurt so badly that I want to cry sometimes when I put any weight on them at all. I have noticed that if I wear supportive shoes all day and try and stay moving then it is easier to make it through, but if I sit at all then I know getting up is going to be an issue.
Best of luck with the pain and exhuastion because I know what you are going through!
I completely know what you mean. If I have a full day out doing errands (including public transport, which is quite jarring in itself), walking, and carrying bags then I know i'm going to need the next day off to rest. It's hard figuring out the balance of doing things that need to be done and having to take care of yourself.
I have spent the past year trying to find balance between motion and stillness, and can do a fairly good job most days. If I don't, I definitely pay for it for days afterwards!!!
If you don't know about The Spoon Theory, you should read this: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ . It has been immensely helpful not only to remind me I need to conserve my "spoons" so I can balance my day, but to convey to others why I might need to rest, cancel or postpone plans, or reprioritize my day.
I definitely understand. I work mornings only, 4 days a week (about 18 hours a week). I usually work until 1 and then come home, make my lunch and sit for just over an hour until I have to run & pick up kids. I probably drink too much coffee too! I need at least 8 hours a sleep a night or I am hooped. And, every once in awhile, I'm just hooped anyway !
I think physical activity is very very necessary for us, within our ability and depending on the day. If I don't do any activity for 2 or more days, I am in quite a bit of pain, and it will take a few days to reduce. Consistency is the key ! That & I think variety and pool based exercise is are good ideas too.
I keep a couple of frozen pizzas around for the days I'm half dead. ;-) Cook up the pizzas for the family (as a celiac I just have something else) and toss a salad and that's supper. Crockpot roasts are good too and jarred spaghetti sauce and pasta (just gotta get hubby to open the sauce 'cause that REALLY hurts). I love to cook but there are days where thinking of cutting up veggies makes me cringe.
It's all about modifying and making plans to make it all work - I hate that it can be so unpredictable. It can be obvious when you are in a big flare or first thing in the morning is bad, but sometimes it just hits out of the blue midday or evening. Ugh.
nym,
I just read your link on the "Spoon Theory". Wow. It almost made me cry. That is a great description of what these type of diseases are to live with. Thanks for sharing.
nym said:
I have spent the past year trying to find balance between motion and stillness, and can do a fairly good job most days. If I don't, I definitely pay for it for days afterwards!!!
If you don't know about The Spoon Theory, you should read this: http://www.butyoudontlooksick.com/articles/written-by-christine/the... . It has been immensely helpful not only to remind me I need to conserve my "spoons" so I can balance my day, but to convey to others why I might need to rest, cancel or postpone plans, or reprioritize my day.
I have PsA and I am overweight. People are quick to judge me and say if I would lose weight it would help my joints, also there are plenty of people who suggest exercise. I don't disagree with this opinion, if this were a perfect world I would be healthy and I would be able to exercise. I am not healthy and I am not able to exersise. It's a cycle that I don't know how to stop. PsA effects 8 of my toes, my ankles, knees, hips, neck. When I walk it feels like my toes have been broken, I try to not bend them, so I shuffle my feet instead of walking normally.
Resisting the urge to over do it when you have a day when pain is not too severe is the hardest thing. I learned from my previous experience with the chronic pain clinic, that this is an integral part of managing/surviving with a chronic illness....the specialists refer to it as "pacing". If you are an active person or a person who likes to "get things done" by nature, it is really difficult to learn how to do things for 15 minutes -20 minutes (or whatever ends up being "your" time frame) and then resting for the same amount of time. It took me at least a year after my 3rd back surgery to FINALLY come to terms with how to function with the pacing method and I never was able to return to work after my back surgeries. Then developed PsA 4 years ago and am finding that the pacing skills are really useful in managing fatigue and pain (as much as you can with this disease). Although I still don't get as much as I would like done, I feel that I can still accomplish a few thing using this method, without totally wrecking myself for two or three days by overdoing it.
I think pacing yourself is REALLY important at all times, even on good days, with this disease.
I have been over doing it lately. This past Sunday-Easter. We were having both families over. I literally cleaned my entire house in record time. Vacuuming, bathrooms, literally everything. I felt fine- I was thinking to myself that I was surprised. I was all done (thank God) and I went to bend over to pick something up and I felt a popping feeling in my lower back and then pain. I had to call my husband-i was crying in pain. I didn’t know what had happened. I sat down and gave it a few minutes. It slowly became more manageable but hasn’t been the same since. I don’t know what it was. It was right over my tail bone. Any ideas. I never know if this is stuff I need to tell my dr. Or if this is related.?? Hmm?
Sounds like you pulled a muscle or shifted a disc in your spine. You should tell your doctor everything that hurts or is a concern. I'm not sure the doctor could do much. A chiropractor may be better in this case. 4 years ago I put my back out bending over and couldn't move for days. It took 2 weeks and 8 chiropractor visits to be able to walk properly. One thing my chiropractor had me do was put ice on it (20 minutes on, 20 minutes off) and no heating pads. Something you can start at home before you can get into your doctor.
My life has also changed so much in the last year or two without me even realising it. I have now come to terms with the fact that my life has changed and is never going to be the same. I have also learnt that I hav e to pace myself especially at work. Even though I was never really a very active or sporty person I did enjoy walking or taking my sisters dogs to the beach. Sadly I can no longer do that as my back hurts too much. I no longer even do my own housework I find it too exhausting! I heard cycling is good so my next step is to get a bike to at least get some form of excercise.
There is not a more difficult thing to do than housework ESPECIALLY vacuuming. I do training (on a national basis) of professional cleaning people and consult for a major vacuum manufacturer, so trust me on that I am an expert. You should get a pass. A few hours a week from a good cleaning"lady" (and thank goodness we are anonymous here because I consult for one of the big ones) NOT a maid service will keep your house pretty ship shape. Do not vacuum, someone else in the house can do it. IF YOU MUST: don't use a self propelled (only Kirby an Hoover make them anymore) the jerking motion will screw up your wrists, shoulders and neck. ESPECIALLY don't use the 8# vacuums (Oreck etc.) the scrubbing motion and quick movement will wear on your hips, lower back, lower back (I know I said it twice) shoulders elbow and wrists. If you must vacuum a canister with power nozzle and 2:4 time (slow is better and backwards stroke do 80% of the cleaning) BUT SERIOUSLY DON'T DO IT
That being said, you need to do something every day even simple stretches. With this disease you to remeber any joint that doesn't move rusts (and some pretty quickl) Ever taken a car ride strting out feeling fine, arriving at your destination and need help out of the car? Thats "rust" I can't even sit at my 'puter long enough to type a post without some rust.