1. Putting on long pants
When your thoughts go like this: “Can I lift my legs high enough? I’m so stiff I can barely move. How does anyone ever do this standing up? If I sit down on the floor to put them on will I be able to get back up again? ”
Help, I’m falling and I can’t get up!
2. To pee or not to pee
When you wake up because you have to pee, but you hurt too much to move so you lie there wondering how long you can hold it. You play a game of chicken, which will triumph pain or pee?
3. Long lines
You’ve got enough energy to run some errands, maybe go to the store. Then you get stuck in an endless line behind 5 people who feel the need to write a check and buy cigarettes. Just get a credit card people, for goodness sake! You can feel your legs start to cramp up as you stand waiting. You know your going to pay for that lame trip to the store. That deodorant so wasn’t worth it.
4. Bras
Anyone sensitive to pain knows that Bras are basically knives digging into your side sanctioned by the Patriarchy to torture women into submission. The second you walk in the door to your house you throw that baby. Freedom!
5. Weather changes
That rain that everyone has been praying for is finally rolling in, but you are in too much pain to enjoy it. Instead of dancing in the rain you’re in bed keeping company with Netflix and your heating pad and cursing your arthritic knees.
6. Keeping track of prescriptions and vitamins
Your medicine cabinet just isn’t big enough so you have a giant bin under your bathroom sink. You try to organize your pills but there are too many to fit in the pill organizer! You give in and use an app to track your medication. The problem is you can’t always remember if you took your medication or not. Did you or didn’t you? If you did and you take another one you could seriously mess up your body. But if you didn’t take it and you don’t take another one then you could also mess up your body? You can’t decided what to do. You’re playing a game of Russian Roulette.
7. Exercise.
You’re damned if you do, damned if you don’t. If you do exercise you know it will increase your pain levels so you will have to ask for more pain medication. If you don’t exercise the doctor won’t believe you’re really sick, you must just be depressed because you aren’t trying to get yourself better by exercising (‘cuz that totally works).
8. Being treated like a criminal for taking medication prescribed by a doctor
The dreaded moment has arrived. You clutch your prescription and tell yourself that a doctor believes that you need this medication so you’re not going to take any crap. Sure enough the Pharmacist asks what kind of doctor you got the medication from. You remind them that it isn’t their business and they huff off to get your prescription. The interaction leaves a bad taste in your mouth and makes you feel like you’re a failure and a drug user. You remind yourself that if you were really a drug user, you’d have better drugs.
9. Heat or cold
You’re muscles are hurting, but how will you ease the pain? Will you apply heat? Will you apply cold? Will you alternate between the two? How does the outside temperature affect the equation? This is getting complicated.
10. Nothing to watch
You’re having a pain flare and you just finished your show on Netflix. How are you supposed to get through this? How can you fight the pain when there is nothing to watch? You watch a few minutes of 20 different shows sitting in your Netflix cue, but they just aren’t entertaining you. Where are all the funny shows? Why is everything so stupid? You want to send Netflix an angry email about their very serious neglect of the Big Bang Theory (seriously, why isn’t that on Netflix).
Great post! You hit EVERY. SINGLE. ONE. OF. THEM!! So very frustrating trying to explain it. I am sharing to FB. Thanks!
Thank you!
I think 4 is the one that is bothering me the most right now. I'm so hot and miserable I can't stand anything touching my skin.
Thank you so much for sharing this at #ChronicFridayLinkup! I pinned it to the Chronic Friday Linkup board at http://www.Pinterest.com/beingfibromom
I agree with all of them – except number four. Thankfully that's not a problem for me (just yet – though the manboobs are getting there!!)
I am so glad I found your blog! You are awesome and thank you for sharing. This has been my life for the past two years and it's nice to find people who completely get it (unfortunately).
Thanks Erin! I know the feeling. I hate to find more people who understand me because that means they are suffering, but it's so nice when there are people that "get it."
So very true! The weather, I'm too hot, now I'm freezing, my muscles feel like fire, joints are hurting terribly. Fibro fog, did I take my meds? How long ago? Which one did I take last? Do I risk feeling ill by just taking it cause I can't remember for the life of me or do I risk the agony I'm gonna suffer if I skip it? I'm so tired, I can't sleep all day I have a family to care for but I want to. Every time I do get the chance to take naps I wake up in a lot of pain again. I'm so tired but I have to wake up to take my medications. What if I slept just twenty more minutes. I dread having to get up and do anything. I'll never get back to sleep any time soon. I have to get up. It's an endless painful and frustrating cycle. I feel for anyone that feels anything like this. I hope more research can be done to help our suffering.
Oh my goodness, this is exactly how my mind works! It's an endless cycle.
So very true! The weather, I'm too hot, now I'm freezing, my muscles feel like fire, joints are hurting terribly. Fibro fog, did I take my meds? How long ago? Which one did I take last? Do I risk feeling ill by just taking it cause I can't remember for the life of me or do I risk the agony I'm gonna suffer if I skip it? I'm so tired, I can't sleep all day I have a family to care for but I want to. Every time I do get the chance to take naps I wake up in a lot of pain again. I'm so tired but I have to wake up to take my medications. What if I slept just twenty more minutes. I dread having to get up and do anything. I'll never get back to sleep any time soon. I have to get up. It's an endless painful and frustrating cycle. I feel for anyone that feels anything like this. I hope more research can be done to help our suffering.
You have just taken words out of my mouth…
You are spot on with everything you have written! I'm trying to work full time at a job where on average I walk briskly 4 miles per day. I have to be there at 5am….we desperately need my income. I come home from work and nap…then take my night meds…then back to bed…then up again at 3am to do it all over again. I am missing out on life…on everything with my family because I am so exhausted from work. The weekends I rest and do nothing and go nowhere. There has got to be more to life, even for a Lupus sufferer….along with fibromyalgia and a genetic lung and liver disease. I need a double hip replacement due to chronic steroid use for my Lupus so my hips and legs hurt very bad all the time deep in my bones and joints. It is a vicious cycle. Any advice from anyone suffering would be greatly appreciated!! And prayers are always welcome!!
I can't imagine how hard it is to be in a job where you have to work on your feet so much. Are there any jobs that you could do that require less walking? Sitting in an office chair would probably be a lot easier, even though I know finding a new job isn't usually that simple.
One of the best thing that has helped me to deal with the pain when I have to be on my feet a lot is doing a lot of stretching and yoga. It's the last thing I want to do when I'm tired and hurting, but it helps my pain levels in the long term.
When I'm suffering (which is a lot of the time) I also can't help think that there has to be more to life. Surely this isn't it for me, just constant suffering until I die? I try not to think like that, because it is depressing, but sometimes it is hard to get past. What helps me is just focusing on the small things, instead of the big picture of my life. I try to note when something good happens, even if its small. If I can laugh, then it's been a good day.
Best of luck to you, and you definitely have my prayers. This chronic illness thing is hard!
To Victoria- please be prayerful and patient for an opportunity that's less physically demanding and allows you time with family. Speaking from experience, not only do chronic pain sufferers need physical support we need the emotional support and rest too. I recently quit my sped teaching position simply because it was becoming too draining both physically and mentally. I no longer had the energy to enjoy my husband, kids, nor grandkids, especially my job.
I'm still with school system as inclusion support but I have much less demands and can start to manage my pain better. I hope I can give u hope to grow on. RA, OA, Fibro, autoimmune sufferer.
I have gone through some of the same with pain due to disc problems but have ditched all the drugs except ibprophen once in a while which doesn't really help and even my asthma meds. It really bad when your trying not to have an attack because you were in the hospital the day before and your insurance doesn't pay for the meds because you lost them in the hospital then a cop gives you a ticket for jay walking in a location that just is short(haven't measured) of the 100 yards, so it may be bogus. These to me are minor and now that I've stopped all meds except coffee and cigs(my assisted suicide) the major problem are visions which the BS artists say is in my head. I say no sh*t Sherlock, the question is what electrical source is putting them there and for what purpose. Try having to question the things you see, hear, taste, feel, smell, and sense your entire waking hours then call me. And let's not me too the IT BS
Oh my goodness, that is horrible that happened to you! Being sick is so frustrating.
I was literally just thinking about how long lines can ruin my day. Or week. Ugh.
We need a special line.
We do need a special line. I try to be patient when someone is taking forever in a line for no good reason, but it's so frustrating when you know every minute you stand there is going to make you feel worse.
Here’s two of mine;
You feel sick and only something tasty will make you feel like eating it but, all you have the energy to make is yet more cereal/toast.
You desperately want to reach out to a friend or family member but aren’t well enough for them to visit you, or, maybe a phone call would do? (just to hear someone’s voice and have them tell you that they love you, and you them) but you can’t call because the call may go on forever and totally wipe you out for the rest of the day xxx