Oh tonight has been rough. I work 12 hour shifts as a Dispatcher at night every wed, thur, fri and sat. Tonight when i came on shift i hurt so bad i could not stand it. I walked some to try to ease the pain in my legs. I ate my lunch, and took my meds. The meds did not seem to work on any of my pain. At mid-night i took my "mid-night" meds and it finally started to work some. I don't know how much longer I will be able to work. My pain is getting worse and the meds are not working very good. I'm waiting for my shift change to come in an hour and I'm already thinking about calling in sick tonight because i'm hurting so bad. I need this job for the income and ins. My pain is in my arms, legs, hips and all the joints including my fingers. I know the people that i work with help me alot and im so grateful to them. My husband is very supportive but he has his bad days to (he battles depression and anger issues from childhood) Its hard to explain to my girls that i need their help (ages 13 and 10) I asked them to fold the 3 loads of laundry as i went out the door to come to work tonight and i bet you that they are still in the utility room :-(. I don't know how to get them to help they expect me to do it, even when the pain puts me in bed for at least 2 days. I know this is rambling but i hurt and i just wanted to get this off my chest. Thank you!!
hello lovely I too worked 4 13hr shifts at my local hospital HCA I was I was the same crwling home aching all night waking up shattered and the meds not touching the pain I did this for 5 years my doc said stop work and claim ESA if they can find you a job you can do well bless them because you will get these symtoms all the time and if you over excert your self you will have a flare up, As for getting the girls to help bribery worked with my boys If they helped they could have something they wanted so long as they worked towards it Ie giving them a goal such as they could go camping for a week with a friends family who asked if they would like to go ONLY if the did the jobs I had laid out for them to do it worked as well as it could really I used watching films at home a goal Family treats as a goal any thing they really wanted. I know how you must be feeling and its good to get it off you chest and your not moaning just saying it as it is for you right now \good luck with the girls and work have you any holiday owed maybe take a few days off to rest up in bed and dont do to much best wishe Mad Maria x
take care honey x
I'm sorry you are hurting so bad. It is difficult to do everyday normal things-like make a living. I wonder the same thing-how long will I be able to work. I have panic attacks thinking about losing my house because I won't be able to work. I've called in sick to work at times but I can't afford to do that very much. I hope your girls will come to understand your struggle. Hang in there!!
wonderful post Sandie. thanks so much for sharing.
I am so sorry - I hope having the forum to vent helps in some way. It is not easy doing what you're doing. Can you sit down with your husband and children and try to get them on board with helping you at home? Not sure what else to suggests but I'm sending you a gentle hug and hope you are doing better.
I am so sorry about your situation...I know how it feels to hurt so bad all over that you simply cannnot move. It's challenging to work and impossible to do housework after pushing yourself at work.
I think you need to get some help. Can you work every other day (instead of Wed through Sat) and work less hours? Your husband should also do the housework if you are hurting that bad.
Hello Sandiekay,
How strange that my Mom and I were just discussing this very agenda when I received an e-mail from JC inviting me to respond to this post. Seems that when the 'caretakers' go down, they usually go down alone. It is difficult for others to understand that they are not always well enough, or strong enough, to maintain the level of effort that they have always pushed themselves to give!
Sounds as though a family meeting may be in order, and a schedule of chores and responsibilities put firmly in order. It is the most sensible solution that I can recommend. Obviously it will need to be you to put your foot down, remember, medicine will only help with so much.
I feel your pain, sister!
SK
I understand your pain. Sometimes, it is even hard to get the most easiest tasks done because the pain is so bad. All you can do is lay down and hopefully sleep so you don't hurt anymore. If your meds are not working for you, keep trying different ones until something works for you. I can't tell you how many prescriptions I tried over a 3 year period, and finally, found something that has helped. It is still chronic, but not as excruciating as before, but everyone is different. Also, I got myself a scooter so I can get around better. I worked for 34 years and today is my last day at work. It is hard saying good-bye, but I finally got my disability approved. At the end, I only worked 20 hours a week. Trying to work through this awful pain is relentless, I know, but then you just get to a point where you really need to start taking care of yourself, otherwise it will just get worse. Have you tried to apply for SS disability? It takes awhile for a decision, but if you've been faithfully going to the doctor and have all your medical reports and tests, as well as support letters from people who have known you for awhile and see how much this illness debilitates you, you have a good chance of collecting. Hang in there.
Thank you for all your wonderful replys, well when i got home this morning I had a complete breakdown. The full tears from the pain, I had to have hubby help me even get my jammies on. The girls looked very concerned because this is the first time i have totally broken down. My 13 year old sat with me till the bus came. They are gone on a sleepover till sometime tomorrow. They did do the clothes last night so i was greatful. I talked to hubby about me not knowing how much longer i will be able to work. He said the same thing about wondering about work. Only thing is I make 1/2 of our income and i have to work to pay the bills. After our talk i had a full blown panic attack. Unable to stop the tears for a while, he stayed with me till my musle relaxer put me to sleep at 7 slept till 1030 ya i just love getting a whole 3 30 hrs of sleep. But the pain just would not let me sleep. I've been watching tv most of the day trying to relax. I have to get ready to go to work now. Thank you so much for the replys they are so heart uplifting.
Do you absolutely have to work that many hours? Can you apply for a desability benefit? It doesn't look like you will be able to continue much longer. I understand that you need to work to pay bills. I also contribute more than half of the household income so that we can pay bills (including my own medical) but I don't work long hours like you do. 13hr shift?! That's hard on a healthy person! Can your husband also work more?
I don't work full-time because I know I would get sick and the medical costs will go up as a result. I also know that I won't last, either. I work part-time not only for money but also for my well-being. I love my job so it actually helps me not get depressed with FM.
It is so important that you get better sleep - I feel like what you described when I am sleep-deprived. Do you have a sleeping medication? I hope you take good care of yourself...and please let your family help you.
I agree, ariestlt. Tough it up approach doesn't work for FM. I used to that but I broke down completely, so I don't do that anymore. It's true - we all try to look all right when we see people (even family members) so they may not understand how much pain we are in. Most people don't realize that I have FM but sometimes people ask me if I am all right because I don't look so good. FM can be visible! My face looks very tired when I have a flareup.
We all have to decide what's good for ourselves. Each person with FM is different so how much work you can do is also different. I think of it like this - I fill up a tank of gas in my car and it must last a week. If you spend more on one day, you need to conserve and drive less the next day. If you spend it all in a few days, you won't be able to drive at all for the rest of the week. You also won't be able to get to the gas station to fill your car up again!
So sorry for your pain. . .vent away!! I too am contemplating whether or not I can continue to work. I am a PT housekeeper and PT Housekeeping supervisor. . .I live on my feet at work. . .today was horrible. .. my heart to you. . .be strong.
Those of you who are in extreme pain and force yourself to work, you are not doing yourselves any favor, you are just preparing yourself for more pain, if you can imagine that! Remember, this is a disorder of the central nervous system. The more physical and mental stress you put on yourselves, the more pain you will have. I can't imagine those of you who are working in a physical capacity. For over a year, my husband had to help me get out of bed, even had to help me get dressed. I also had a hard time getting in and out of a chair or in and out of the car. I found myself moaning and groaning from the intense pain. Like you, I literally dragged myself to work everyday. After a year of that, I felt I was disturbing my co-workers and my boss finally told me he could not bear watching me in such pain anymore; that it was time for me to start taking care of myself. Start the process of social security disability or social security income; it takes time, so start now. Everyone has different levels of pain you can tolerate, but if you continue to push yourself, eventually, all you will be able to do is lay in bed. You need to ask your doctor for different medications until you find something that helps you. It took my doctor three years to find the medications that at least help to the point where I can bend (ever so slowly) and I learned a trick by leaving my medicine by my bedside, take them, rest for about an hour, and then get up. Finally, my husband does not have to help me get out of bed in the mornings. I'm not saying I'm 100% better, no way, but at least I can do things more on my own now. I also will start collecting disability and have not worked for about a year now. So, when I feel okay, I do all my chores, then take a nap in the afternoon, rest is very important, as well as a good night's sleep. Ask your doctor for Lunesta, you will sleep like a baby and feel refreshed in the morning. The money you are working for now will only end up in the doctor's pocket. Like FibroChou said, don't try to tough it out.
Definately can relate to the pain everywhere. I am a very large man who has never let that effect my work or doing things with my kids. This however has taken my strength, sanity, and dignity. I work in social work and also wonder how much longer I can do it. Have a great wife and co-workers who help as much as they can. I have 5 kids. 3 will do anything they can to help. 2 of my daughters, ages 17 and 21, have no compassion what-so-ever. This blows my mind as we were always very close. As much as people say they feel bad or understand what we're going through, I believe they have no idea.
Aloha Bestdad: Not too many men on this forum. I think mostly women get fibro. I'm glad you have good support with your family and co-workers. In time, they will see how much you are hurting. You can only do so much physically and mentally in a day.
I know how hard it is to get disability and these private insurance companies decline you the first time, just a delay tactic. I once read about a man who had breast cancer and applied for disability, but they denied him because he never had a mammogram and he was a man! It is amazing the lengths they will go to to deny your claim.
People do not have any idea what this pain is like. Try a support group in your neighborhood. I found one here, and I'm sure they are all around. It helps to talk to other people who understand your pain and what you are going through.
Just know you are not alone an we all here you.I know its really hard to get but have you looked into diabilaty? My meds right now don't seam to be working anymore either and I've read that you can build up a tollerance to them and maybe this is what has happened. Your children are old enough to help and chores are part of the job of being a family and try to let them know that and that you are also preparing them for when they are adults. You can also try trading or rewarding them with something for helping you out more around the house especially now that summer is almost here. Gentle hug. Hope you can get some relief soon.
Hello Bestdad. I just wanted to let you know that I go through the same thing with people not understanding. I used to hide my fibro and a lot of people didn't even know about it, but lately it has gotten worse and I've felt the need to share even though it doesn't seam to make hardly anyone feel differant. People who do not have fibro cannot understand, or at least cannot hold onto that understanding. My parents took a trip a little over a year ago and visited my great aunt who also has fibro and when they came home they seamed completly changed. My mom literally looked at me and told me she didn't know it was that bad. But only a couple of months later that flew right out the window and now they don't seam to care or understand anymore. My dad was even poking me in the ribs the other day, which is one of my worst spots. This is something he stopped after talking to my aunt and he was laughing about it trying to get my little ones to do it too while I was asking him to stop and not cry. Best of luck to you and just know that you are not alone, sometimes it helps.
I am so sorry you are having such horrible days. Many of us have family members that just don't get it; friends, too. One moment you seem fine and the next you can't fold a towel. I guess we can't expect them to understand it -- we sure don't. For me, without any issue, I would have a family meeting. I would give each one of them some spoons - literally. And, I would read carefully the spoons theory online (If you put that in a search you might get But you don't look sick . com and it will be in there) and I would use whatever your symptoms are most of the time with the spoons.
Some days we are fortunate because the weather systems are not bringing positive electricity to our body and we have 8, 9 spoons and seem so well. But on day two, clouds come and our veins can't handle that pressure and we wake with only three spoons of energy or light pain to last us all day long. When they are gone... our body just caves in. Then, some days we wake more tired than we went to bed and nothing helps.
Assure them you are not going to die from this its all about your connective tissues in your body and how toxic material and viruses have worked their way into them and made you sick.
You need their help! Without it, you can't go on and will be totally bedridden. You need them ALL to understand that setting the table, helping with dishes or folding the clothes; making the beds gives you energy to save up to be able to breath and be their wife and Mom ! Period. And, at this point there is no cure... (though I can see one around the corner) so its going to have to be life-style changes the whole family makes.
13 and 10 even are old enough to understand the finances if you have to quit work, and you may have to many of us did. For my family it was traumatic.
They can't see what is inside you. Kids don't like to do anything anyway and hubby thinks he married a maid... they all seem to and you have your roles in that department - hard to understand you can't fulfill them. But we can't so everyone has to pitch in.
THEN, when you have special days that are less painful or fatiging, do something special with the girls and tell them often how much you appreciate their help. Today, you have a little more energy and would like to do something JUST for them.
Some people with debilitating illness are in wheelchairs and can't walk. I was. Some have to have canes and walkers, I did. Some can only go a few blocks others a few feet. Its time the family understood what it feels like because they can't see it.
In the meantime 13 and 10... oh gosh even with a well body the teenage years are in front of you. I will say a prayer! I had two girls, also. One at 39 still gets mad when I get sick and can't do what she expects.
On my frig I put a number. A big huge number with magnets. Like Poster board. 7, 4, 2 . This is how I feel today or this morning. I am a 2. I can't do the things I wish to do today and really must have your help. Soon when you have an 8 on the frig they are going to know Mom's available and be excited.
I get angry over this mess too and its easy to want to blame someone or be angry AT someone. Tell them all to be Angry with Fibromyalgia or Angry with ME/CFIDS. It invaded your life... just like a week long virus. But you refuse to let it win! Everyone has to help you fight it.
I ramble, sorry... BUT YOU DONT LOOK SICK. COM / "Hop"-Cheryl
My situation is just about the same. I have no husband though. Have to work to keep a roof over our heads. And dont qualify for disability unless ive not worked for a year. Who can do that? Applting now for disability through a policy at work. I feel for her situation. Do u have any words of wisdom for me? I am at my end. I dont have the chouce of retreating ti bedre but maybe once a week when i get gome. Thanks so much! Sandiekay, ill be praying for u