So many people can not understand what living in pain 24-7 is really like. They think if we ignore it, the pain will go away and we can have a "good" day. They feel that if we only got out of the house and did something we would be ok. They can not understand how even the littlest chore becomes a challenge or how the fatigue, pain, and frustration effects our every moment.
I invite you to spend just a week sharing my life - the PAIN, the FRUSTRATION, the HARDSHIP. Here is an inside view of MY life with RSD. Yes, for each one of us the pain, the frustrations, the fatigue and limitations might be different but all in all, the life is shared by us all. Perhaps a different town, a different state, a different continent, but the pain and the hardship is the same.
10:30 AM Sat down at desk to write out SEVEN monthly checks ( Rent, Cable, Phone, Charge card, etc). Check book, calculator and pen all ready. Check one was wasted - spelled the company's name wrong!! Ok, I can do this!! Try again!!! Check written, amount noted in check book, put in envelope and sealed. But wait, I did not remember signing my name. Rip open envelope, sign check ( good thing I remembered, huh?) and now have to find a new envelope to use. Succeed in finishing checks 1, 2, and 3 but the pressure is mounting. My bird is chirping and my daughter walks in to tell me something. Get REAL tense. Can't concentrate. Takes FIFTEEN MINUTES for me to write out check number 4!!! Send daughter out of room and SCREAM at bird to shut up!!! Starting to rain and the temperature is dropping. Pain is rising quickly!! Attempt check number 5 but can't concentrate. Get up and make a cup of coffee. Back to desk and check number 5. Can't figure out who to address it to!!! Hello??? I write the SAME checks month after month!!! This is getting me so damn confused today and I am getting more and more frustrated. Scream bloody murder at the bird!!! Neighbors will think I've flipped if they hear me. Noise is driving pain thru the roof and making it harder and harder to concentrate. Close to tears I finally finish the checks. All in all I did pretty well - it ONLY took me ONE AND A HALF HOURS to write SEVEN checks!!!! 12:30 PM
Sitting waiting for mailman. Comp check due on Monday still has yet to arrive. Need to go grocery shopping but have to get the check first. Rain is getting heavier. Can't go out in this weather so pray it lets up soon. 2:00 PM
Mail came. No check. Weather cleared a bit but supposed to rain rest of week now. Can't go out without my check but will have to go shopping whatever day the check arrives. Nothing worse then grocery shopping in the rain!!!
3:40 PM
Picked up phone to make important call but could not remember WHO I had to call. Slammed phone down frustrated.
4:45 PM
Been sitting at computer for a few hours but hardly got anything done. Answered only 4 emails in the past hour. Time seems to be moving but I seem to be sitting still.
5:15 PM
FINALLY remembered who I needed to call. TOO LATE!!! Office closed until 9AM tomorrow.
5:30 PM
Started to washed the dishes piled in sink. Dropped my favorite mug and broke it. Hands are real shaky today. Better stop before something else breaks. The dishes sit.
6:10 PM
Time to start dinner. Had my daughter get me the pots and pans since I am too dizzy to bend. Cracked eggs but forgot to mix them separately first. Made a real mess but managed to beat them and all the ingredients for dinner together. Put dinner up to cook and sat on couch to rest. WHAT'S THAT SMELL??? Run fast - dinner is starting to burn and stick to pot. We are used to that by now!!
7:55 PM
Went to vacuum floors and blacked out while leaning down. Stopped cleaning. This house is never clean any more. Embarrassed to have company drop by but after a while stop caring!
11:00 PM
Watched a movie for past two hours but can't even tell you what most of it was about!! It was something I really wanted to watch too!! Feel like I'm in la-la land. Concentration and memory are out the window.
1:30 AM
Pain is TERRIBLE!!! Ankles and left hand are ballooning up, throbbing and burning SO BADLY!!!! Spasms in neck and upper back won't let up. Headache from pain and grinding my teeth. Eye is starting to bother me so shut computer down. Time to call it a night.
2:15 AM
Can't sleep. Staring out window and enjoying the fresh air. Quiet and peaceful outside. Would love to go sit on the front steps but in too much pain to walk down 3 flights of stairs. To dizzy to go down stairs alone any how.
3:05 AM
Sleep still wont come. Can't concentrate on reading so back on computer to see who else is up to chat with. Pain is real bad for several friends tonight. We chat for a while till one by one they all call it a night and I am left alone. A few games of solitaire and then I go back to bed.
4:45 AM
Still awake!! Back at window. Restless and in pain.
5:40 AM
Fighting tears. Getting frustrated from lack of sleep! Lying here staring at my ceiling. Starting to get light out outside.
6:15 AM
Still tossing and turning
7:00 AM
Woke up after sleeping 10-15 minutes at most.
7:30 AM
Still trying to fall back to sleep!!
12:00 PM
Laundry was way too much for me. Chest pains have NOT subsided at all. Legs and lower back are spasming as bad as neck and upper back by now. Right ankle is extremely swollen and lower back is killing me from all that walking with my foot turned outwards. Lie down on couch -need to rest.
1:30 PM
Feeling even worse. Know I over did it but we do need clean clothes to wear!! Trying to sleep but can't drift off. Every noise seems amplified and I jump up - my daughter playing in her room, the cat walking across the floor, the kids playing outside, the downstairs neighbors opening their door, etc.
2:25 PM
Whole upper arm and across chest have swelled. The bending, lifting and folding the laundry did a real number on me. Cold damp laundry room does not help either! Chest pains are multiplying. Nothing gives any relief.
2:45 PM My daughter is begging me to go to ER. Pain is escalating and I am lying on couch crying. I tell her to just let me rest another half hour as I know the ER can't do anything but give me a shot of Demerol after I sit there for a few hours waiting for it!! ( You do not go to ER's in the summer unless you are dying here!!) My daughter kept coming over to hug me but I kept pulling away. The light touch of a young 11 year old girl was enough to make me hurt even more. I fought the tears. How does a mother tell her own child NOT to touch her?? How does a mother refuse a hug from a child she loves, a child who is her whole world??
4:00 PM Finally feeing tired. If only I can sleep. I let my daughter go to her friend's house so I can rest but truthfully uneasy about being home alone with my chest pains. Neighbor said she will check on me but I know she won't often as she doesn't want to wake me if I really do fall asleep. Still, atleast it helps knowing someone is aware of the condition I am in. This comforts me and I try to relax. 4:20 PM All I want to do is SLEEP. But, the weather is great and there are atleast 15 kids outside playing and making noise beneath my window. While I used to love the sounds of children's laughter, I know find myself pulling a pillow over my ears trying to shut it all out. 4:55 PM The longer I try to sleep the more frustrated I get, so I get up and go to my computer and go online. I have several important emails to answer so I take care of them. Luckily I have spell check because I can't spell for the life of me today. I just hope what I write in answer to these people makes sense.
6:00 PM My daughter comes inside ready for dinner. I have NO appetite and really hurt too much to cook so she makes herself something to eat and sits in front of the TV to eat. TV is low enough but the noise of the cartoons start to send me thru the roof and I scream like an idiot for her to lower it - shaking all the while. I feel like I just exploded. Out of no where I just blew up, never even giving the poor child a warning!!! One minute I was fine (and so was the noise level) the next the time bomb went off. My daughter apologizes and lowers the TV shrugging off my tantrum but I go in the other room and sulk. I feel TERRIBLE for my behavior. I HATE MYSELF when I get like this!! I just can't help it though. My mood swings are out of control when noise or pain set me off and even I don't usually see it coming!! 11:00 PM Tried blocking the pain by distracting myself and playing solitaire for the past few hours. Feeling a bit better but still NO energy to do anything that I need to do around the apartment and afraid to do anything that will bring on more pain. Don't know how the past few hours slipped past as fast as they did but suddenly the day is almost done and other than laundry, I accomplished ABSOLUTELY NOTHING once again. Even the smallest tasks are so difficult and take so much longer for me than they used to that I fall further and further behind in everything. Sometimes I wonder if my small apartment will EVER get clean.
11:30 PM Made an attempt to do some work I needed to online for my support group but my eye is really bothering me and I am having a hard time seeing out of it again tonight. Pain is rising again and I am having a hard time concentrating so will call it a night. Pray for sleep.
2:30 AM Actually slept for close to 2 1/2 hours!!!! Feel wide awake so got back on computer to work on support group things - answering emails and sending out info. 6:05 AM Getting real dizzy so back to bed. Actually got a decent amount of work done online so don't feel too discouraged. Still so far behind though and feel guilty people wait so long for replies from me but if they are dealing with RSD, they do understand.
10:30 AM Pain is back up. Believe it or not, all I did to bring the pain back on was TAKE A SHOWER!!! The water on my back brought the spasms in my upper back and neck on again full blast. Raising my arms to wash my hair did not help either!!! To make it even worse, my fingers swelled from scrubbing the shampoo into my hair!! In a HUGE flair!!! 12:15 PM Friend called to see if we wanted to go to the mall. KNEW I shouldn't but tired of feeling like a hermit!!! My daughter has been having a lot of fun this summer with her friends but we have not gotten out much together so thought it would be fun to go and get away for a bit. We were not going until evening so I decided to take it easy and baby myself all day so I would be up to going. 5:30 PM Getting ready to go out. Real couch potato day. Did EVERYTHING I could to keep my pain down and prevent it from flaring which means I sat at computer playing solitaire or laid on the couch doing absolutely NOTHING most of the day!!! 11:35 PM PAIN IS THRU THE ROOF!!! So sore I can barely move!!! Only went to two stores but the walking did me in. We went out to dinner which was nice but my pain was mounting and I barely had any desert (which is NOT me!!). By the time we left the restaurant my lower back was SCREAMING at me. I know the more I walk (with my right foot going outwards) the worse it is for my back and the worse I feel. Car ride was hard coming home. Pain was increasing the longer I sat. Had a hard time walking up the flights of stairs to our apartment once we got home and my friend ended up having to help me. Feel like someone is kicking me right in the small of my back and wont let up. My daughter had a GREAT time and got a few goodies so that is all that matters to me. The pain is worth knowing SHE had a good time and went to bed happy. 1:15 AM Afraid to go to sleep! Chest pains are real bad. Came online to chat with a few friends so I would be less alone. 3:55 AM Getting tired so off to bed. 6:00 AM Pain is slowly starting to subside but still no sleep. Getting frustrated lying tossing and turning and getting more tired by the minute but it does me no good.
2:30 PM Totally wasted day. So sore I can barely move. I think all I have accomplished so far today is to get dressed and water my plants. I keep going back to lie on the couch to rest. If I could only get some sleep I would be less irritable and perhaps could handle the pain a bit better today. 5:35 PM My daughter keeps asking me to come outside and sit with all the neighbors who are enjoying the good weather. Hurts too much to walk and I know going up and down the 3 flights of stairs is nearly impossible so once again I play the hermit and stay in by myself while the rest of the world gets to enjoy the summer eves. The others sit and relax and enjoy each other's company while watching the children play and have fun. I, on the other hand, sit alone, a prisoner in my own home due to pain and symptoms left untreated. At 41 years of age I do less with my life than many senior citizens still do!! 7:30 PM Dinner time came and went with me once again not wanting to eat and in way too much pain to cook anything special. Luckily frozen leftovers satisfied my daughter and while she ate, I laid back on the couch. 9:00 PM Got up, washed a few dishes, feed the animals and swept the floor. What a work out!! Felt like I ran a marathon!! I was sweaty and shaky by the time I finished but atleast I got SOMETHING done today!! 1:45 AM Rested an hour or so, but could not sleep. Spent some time online answering emails and working on my projects. Barely got any thing done considering the amount of time I worked at it but something is better than nothing!! 3:00 AM Can't sleep yet so am flipping thru channels trying to fins something to watch on TV. Nothing interests me but there is nothing else to do that I can concentrate on with how groggy I feel. 3:45 AM Give up on TV and go back to bed praying to get some sleep. 8:45 AM Ok, MUST push myself and get going here. MUST get some stuff accomplished today no matter how much I hurt. Start with cleaning the stove. Takes over TWO HOURS as I have to keep stopping to take small breaks but, it DOES get done!! From there it is washing the kitchen counters and then I have had enough!! 1:15 PM Against my better judgment, my daughter and I are heading out the door to go grocery shopping. We have no choice. My WC check finally came (now 6 days late!!) and we really need milk, fresh fruits and some other food in this house!!! I tell my daughter we are NOT going to get much and this will be a FAST trip but since I can no longer walk to the store like I used to before my legs got bad, I now have to pay for a taxi both ways. If I am going to spend over $11 round trip to go shopping I BETTER buy enough to make the trip worth it. 6:15 PM Please tell me again why I was STUPID enough to go shopping the way I felt!! Grocery shopping ALWAYS makes my pain worse and I pay for it for DAYS!!! We did not even get half of the things on my list!! I just started feeling so bad I had to get out of the store so we paid for what I had picked already and called for a taxi. Had the same driver going home as we did coming and he said I looked like death warmed over and 1000 times worse then when he had left me off at the grocery store. He kept asking if I would rather go to the ER instead of home!!! I barely made it up the stairs to our apartment and then collapsed on the couch!!! Luckily my daughter and the cab driver carried all the groceries upstairs and then Heather put all the food that needed to be refrigerated or frozen and some of the other stuff away. If this is like most of our grocery shopping trips, the can goods and boxes of food will stay in the bags on the floor for atleast a day or two until I feel well enough to put them away. Bless my daughter, she helps me so much but the cabinets are too high and it is just too dangerous for her to stand on a chair and put the groceries away!! 11:00 PM Been lying on the couch not doing any thing for the past few hours since we came home. Did watch some TV with my daughter and hate to insult her but am so out of it I couldn't even tell her what we watched. Atleast we were together! 12:30 AM REALLY need some sleep. Pray it comes fast and easy tonight. 2:00 AM Still tossing and turning! 4:50 AM My daughter wakes me - says I am screaming in my sleep. Have a terrible foot cramp and can not move my toes or foot. She rubs it for me and tried to help me relax. Leg cramps subside but keep returning as soon as I move the leg. Have definetly OVER DONE it this week with walking - the LITTLE bit I've done. 5:20 AM Leg cramps finally stopped. Going back to bed. 1:00 PM Managed to shower, make my bed, clean the living room and wash a few dishes but am falling asleep standing up now. Must go take a nap. 6:00 PM Spent most of day in bed. Barely slept but no energy to get up. Pain level is thru the roof and body aches ALL over from grocery shopping. Hurting way too much to even make dinner so called for Chinese Food to be delivered. My daughter deserved the treat after me staying in bed all day and her not getting to do much of any thing. 9:30 PM Just feel like crying!! Pain is so bad and stress level is so high. Allowed my daughter to invite her friend over to play for a few hours after dinner. The girls are great together but the extra noise in a small apartment makes my head spin. I want to crawl out of my skin each time they walk into the living room to talk to me or show me something. It is NOT them!! It is me!!! 11:00 PM MUST get to some of my work on the computer. So far behind and feel so bad that so many people have to keep waiting for me to get them the help or information they need. I start so many projects full of enthusiasm and energy but lose it all so very fast!! 1:30 AM Time to call it a night. Not thinking straight and just sent the wrong email to the wrong person TWICE in a row!!!! 3:15 AM Still awake!! 4:30 AM Tossing and turning!! 6:45 AM Just awoke to the sounds of birds chirping outside. Actually dozed off for a bit there!!! 11:00 AM Off to a GREAT start. Walked into the kitchen and out three times not remembering what I went in there for. Finally remembered I wanted COFFEE!! Put the water up but forgot about it and almost all boiled out before I remembered. Had to put the water up again. Water boiled but forgot to put the instant coffee into my mug and poured the boiling water any how. Went to drink the "coffee" a short time later and stared at it not able to figure out why "something" did NOT look right!! Third try is the charm and I finally got my cup of coffee!! (For those of you wondering, I should note: I am NOT on ANY daily form of medication - prescribed, over the counter or herbal supplement and have not been for close to a year. So, medication can NOT be blamed for my insomnia, lack of concentration or forgetfulness. I was NEVER like this until AFTER my RSD progressed and it seems to be getting even worse with time. I am sure the constant pain and lack of sleep play a HUGE part in the difficulties!!). 12:00 PM Went looking for something to drink. I FORGOT all about that cup of coffee after I finally succeeded in making it!!! 3:15 PM Several hours have passed. All I have managed to accomplish so far was to wash the kitchen counters, put away a few dry dishes, put away the rest of the groceries from the other day and sew ONE button on my daughter's shirt. I am TOTALLY WIPED OUT. Not an ounce of energy left in this body but yet SO MUCH more left to do. A 5 year old gets more done then me!!!! I WANT MY LIFE BACK!!!! 6:15 PM Rested for the past two hours. Well, tried to but the I was in way to much pain to get comfortable or relax. 8:00 PM Made and ate a big dinner with my daughter and now promised her we would watch a movie together. 11:25 PM Movie is over and did a bit online. Going to feed my frogs and call it a night. Really tired and REALLY need some sleep.
DAY ONE:
9:15 AM Phone rang and woke me. YES, I was actually sleeping for the first time in THREE DAYS!!! Tried to go back to sleep after the call but that was the end of my slumber. Who needs sleep anyhow?? After all, I DID manage to sleep a whole 4 hours!!! Guess that should last me another few days!DAY TWO:
9:15 AM
Got maybe another 1¼ hours sleep. Time to get up and get laundry ready to bring to laundry room before it gets busy down there and there are no empty machines. Spend the next 1½ hours walking up and down three flights of stairs in our building, across parking lot, and down the stairs to laundry room in other building. Thank G-d my 11 year old daughter can do all the carrying. We throw 3 loads of laundry into the machines. Go back home for 25 mins then go back down to remove clothes from washers and put things in dryer that need to be dried. My poor daughter gets to lug 2 huge baskets of wet clothes back up to apartment where we hang them in bathroom to dry. 45 minutes later it is back down to get clothes out of the dryers. Can't make it up stairs last trip. Chest pains are getting bad. Had to sit a few minutes to rest. My daughter gets scared but at same time she is becoming very used to me having to stop and rest.DAY THREE:
8:45 AM Woke up again feeling refreshed!!! Pain is lower than in previous few days. Really stiff and had a hard time getting going, but feel sort of human this morning!!!DAY FOUR:
8:50 AM Never did get any sleep. Finally gave up trying. Another sleepless night and people wonder why we can't function! The pain is bad enough but add no sleep and you have a person who can't even remember their own name at times!! DAY FIVE:
7:15 AM Dozed off here and there, but bad spasms down my arm finally got me out of bed. Feel like my whole body is on fire. Check my temperature and it is 100.3° which is common for me during a bad flair. Have the chills so climb back on couch under a blanket.
DAY SIX:
9:50 AM Actually got a FEW hours of sleep. Woke up several times in between but managed to drift off again each time. Feel like I've been run over by a Mack Truck. Going to be another WASTED DAY. DAY SEVEN:
9:45 AM Finally dragged myself from bed. Totally exhausted!!! Sometimes I wonder why I bother sleeping as I am just as tired (or more so) when I get up!! Have ALOT to do today and pray for the energy to get it done.
You have just spent one week in my shoes. One week out of the 3½ years I have suffered in pain. It really was not this bad at first, but has progressively gotten worse as time went by. Yes, this IS a typical week for me. Some days are better then others. Some even worse then I've described. I am NOT telling you how my life is for your PITY but rather for your UNDERSTANDING of what living in constant pain is all about and the changes it causes in one's life. I am VERY lucky in that I have a GREAT daughter who helps me but still, think about the impact this has on her life. Think about how unfair it is that at the age of 11 her priorities lie in taking care of me, helping me, and checking up on me rather than having a great time with her friends and thinking about what girls her age might think about. RSD effects not just the patient but their entire family and loved ones as well.
Thanks for taking the time to read about my life with RSD. I hope it gives you a better understanding of what our lives are really like! I have lost count of the people who have said things like "You are getting paid to stay home", "You are SO lucky not having to get up to go to work every day", "Gee, do you ever do anything besides rest?", "Why don't you ever get out and do something?", or other similar comments to me. You think we ENJOY this?? You think we WANT to live like this?? You think we want to feel like failures and that we can no longer accomplish our goals in life?? Believe me - if someone could take this all away from me I would waste NO time taking back my life!! I would waste NO time going back to work and living like a normal person contributing more to my family and society. I WANT MY LIFE BACK!! THIS IS NOT living!!! We are all merely surviving now.
