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Feel like a slumbering sloth
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surviv4 posted:
I used to be a somewhat productive person and I still had fibro then, but I HAD to work (I guess I functioned on auto-I really don't know how I did it) and now I don't work...outside the home anyway, although I don't work very much inside the home either if you get my drift. At any rate, my husband does not have fibro and he wants to go, go, go, all the time-and he's legally blind which leaves me to chauffeur. My energy level is to sit on the couch and watch TV and watch the pages turn on the calendar. I get so angry when anyone needs something from me like running errands because I don't feel alert or awake enough to drive most days and I just plain am too exhausted for any activities. How do you all handle the anger?
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annette030 responded:
Although I think sitting on the couch watching TV is bad for most folks with FMS, I don't know what other problems you may have, so I would suggest you just say NO, when he asks you to chauffeur him around and you do not feel up to it.

If you say no and refuse to do these things, perhaps you won't feel so angry inside....We cannot control what other people ask us to do, but we can control what we actually do and how we respond to those people. Getting angry increases pain for me, I am unwilling to do it.

I do what I feel like doing and other than getting basics done, the rest is what I feel up to doing that day. On really bad days, I don't even get the basics done. My husband knows that, and respects that.

Take care, Annette
 
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booch007 responded:
Good morning,

He doesn't need to shorten his movements or you lengthen yours over your line to pain.

At least in NY, the services for the blind gives people assistance to travel everywhere, we also have the program for the deaf. They have alot of available volunteers and programs for them.

Now if MR chooses you only! Then you have to have a talk. Look in the computer or phone book in your area and check out the services for the blind. YOU will be amazed what you might not know.

I am always surprised when I see people coming in the office with "stuff" or helpers and ask what is that , who is that...and find that they are part of a program. There are programs all over the place. Look into the "office for the aging". Social workers are so good at knowing programs.

When I trained years ago as a nurse it was part of the trainin g, to know the programs for people, assistance for the patient. In the ICU we didn't discharge to many home from me, so I lost the curve of home care asistance.

BUT I TELL YOU..IT IS OUT THERE! We poor guys who do it all and ask for little, know not that there is help around the corner.

So, today look things up, make a plan and check it out on Momday. I don't even know you ages....but it doesn't matter. He is legally blind. I had a boss, he was driven around by a program all the time...........

I can't believe it is just NY who helps, these have to be federal programs. Good luck, I hope my brain just waking up helped here....Nancy B .

In my town it is called PART, (Putnam Area Rapid Transport) They pick you up at the house and bring you to your destination and plan for the pick up.....Westchster where I work, it is Paratransit care.....you goet a handicap pass and # and call for your plan to go and they go. Tricky with the blind, they are also hooked up with the "school for the blind" here and there is a volunteer with them. Again, look in to the options....be PRO-Active in this. You need help.

The pffice for the aging can refer you to an avenue to that is in your area. OK, enough chatter....Nancy B
 
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booch007 replied to booch007's response:
Another thing. YOU ARE NOT A SLOTH. (man the picture I have in my head, I am sure you don't look like that* at all )!!

You know I just had an incident with my husband where he watched me get into trouble and didn't help me. I yelled at him twice during the gathering that made this happen and then let it go. I forgave him, that I was in the bathroom crying with the pain, forgave him that I was on the floor cleaning a spill from the company and couldn't get up....BUT in 3 days from then, we talked about it. When emotions were better.

NO judgement, just...do you realise the issues that brought me to those reactons. ( You are not aware we had a death in our family) and he is suffering terribly with this, I was gathering my children for a remembrance dinner and got WAY IN over my head.....so, it was alot in the mix.

You, have a man who can't see you, can't read the pain in your face....change in your walk, know if you are almost asleep when he calls.

Alot on your plate. For me, if I wore your shoes. When I am asked to do something I know I am not ready for...I repeat my meds to ge through it Maybe the doctor can have a helpful say here. I have a scale of med use for me. 2-3 times 3-4 times and prn (when ever needed) so it works for me.

Yesterday I left worked and shopped...bad move always. Got to the the last store and couldn't push the wagon (and every store had wheels to the cart that wanted to go their own way!,man) So I repreated the muscle relaxer......got home at 8pm !

DH knew right away I would be in trouble. He did dinner and cleaned up and I actually fell asleep right after our show (flashpoint). This a.m. I am bad, but hopeful to regain myself a bit to do a long list I have ahead of me.

But, the thing I am saying is maybe you can...add another tramadol, or take you relaxant to get the body to do a bit. I love that he pushes you a bit, not too much though.

It has positives to it. YOU GET OUT. (you know the couch calls us all the time) and it moves the muscles and MAKES THEM WORK. Even when they scream no, like a child. There is benefit in movement. SO, I was thinking you may neded a beter medication plan too, to keep up. Let the doc know you are challenged by this man you love. Can you PRN something that you take to help you?

Just another idea................Hugs from me, Nancy B
 
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dollbug responded:
Hello and welcome......MiMi in NC.....I think we all understand and know how you feel....most of us have been there done that....people who do not know how FM affects our daily living have no clue what we are faced with each and every day...

Learning how to pace, pace and pace some more will help you...and also learn how to say no when you do not feel up to doing whatever someone expects you to do....

I do hope that you will ask for help though...as I am sure this is very difficult for you....since your husband is legally blind...

I would suggest that you talk to your doctor about your energy level....but I know that I have talked to mine about the chronic fatigue...and he tells me that there is nothing that will really help it....

Getting enough sleep is really important also....as well as trying to handle your stress level....is does not pay to get angry about anything....for whatever the reason...we FMers....are stuck with learning how to deal with the wrath of the dragon, aka FM....it is not easy, by no means....

I would also encourage you to get your Vitamin D level checked....as a lot of people have very low Vitamin D these days....and I do know that this has helped my pain level a lot....it is a simple blood test....but you MUST ASK the doctor to run it....as it is not included (yet) in the normal bloodwork that the doctors do....low Vitamin D can also affect other illnesses as well....

I hope that you will check out the info under "tips" and "resources" to the right of this page...as I am sure you will find some good "tools and tips" that perhaps you have not thought of trying....be sure and read the "member toolbox" and "nutrition and vitamins"....

I am sure that you will find something that will help you cope better...it does take time and effort though...as there are no quick fixes that I am aware of.....and you should also know that what helps one person may or may not help another person...we are all different and I think this is why the doctors have such a hard time in trying to treat us....

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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surviv4 replied to annette030's response:
Thank you Annette,
I guess I would be saying No all the time, because I'm running on empty 24/7...as for the anger, it never goes away either which is the "norm" for survivors like myself. I've had fibro almost all of my life which started in my childhood. But then more recently,I was violently injured at work 3 yrs, ago by an Alzheimers patient that I was caring for, and that attack stirred up latent issues for me that now cause unrelenting and excruciating pain both physically and emotionally, and the fibro is insane. I could go on and on but I am happy that your mate is so respectful, mine still has alot to learn. huggggs : )
 
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surviv4 replied to booch007's response:
Your response brought tears to my eyes...it reminds me how much I do love this man-he just doesn't get what's going on with me all the time. As far as any medication is concerned, I'm still a few months out until my medicare kicks in, so I only take ibuprofen which does nothing for the pain. Hubby has tramadol but it interacts with a sleep aid I take-I guess it can cause respiratory distress. So I have to just wait to see the doc as I don't have insurance right now. But you were helpful to me and I will take your advice to heart. I'm reminded that he has needs too....hugggggs : )
 
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surviv4 replied to dollbug's response:
Thank you ms MiMi,
As I stated previously, I have yet to see a doc with all of this, but I will definitely keep the vit. D factor in mind when I do go. I'm finding a real kinship of fellow sufferers in all of you and I really value all of your input. As of 2 weeks ago, this was a mystery to me until a friend of mine labeled me with fibro and I started to research it and it all makes perfect sense to me now. All of the symptoms fit---I always thought I just had chronic fatigue syndrome, but it's so much more than that. Finally, a real illness for me that's not just in my head. It was so liberating to discover this I can't even tell you, but I'm learning so much from all of you. Appreciatively...hugggs : )
 
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homecoming responded:
I'm sorry you feel like this. My days are very similar. My worst enemy is me for the guilt and uselessness I feel when my fm and cfs make me unreliable. That was a quality I was proud of. Have found a a little bit of a different way of looking at that. Ok, to some ideas. Sorry if there r some errors the meds I took an hr ago for the stupid pain and sweating than woke me up.as our fellow fm life lines, your husband is eligible for transportation service. I don't know what state u live in but in RI it is the RIde program. Although not working I am a social worker. Places to inquire are your state disability and rehabilitation, local senior center if applicable and a case manager from your insurance. As for absence of energy, I have had some help w Adderal. For people who do not have ADHA it provides energy. The generic is amphetamine salts. It doesn't last all day but it certainly helps. Maybe ask your Dr. As far as doing for others, I ask for a day notice prep the best I can. Can u go to the places needed when they will be the least busy or the better time of day for u .also if u can do the most enjoyable "go go" thing. The same services above can inform u how your husband can do what he does Now is a time for each of you to empower yourselves and each other. If I get angry I eventually remind myself I'm mad because I can't do what I want when I want. I hope this is helpful. Blessings
 
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annette030 replied to booch007's response:
Hi, Nancy

This is different from one area to another, also in how well it works. A close friend of mine didn't drive and used public transportation all her life. No problems because she could walk to the bus and stand around waiting for transfers, etc. When she could no longer do that, she tried the medical transport in her community, she had to make an appt. well in advance which was no problem for her, as she only used them for doctor's appts. Getting to her destination was no problem, but getting a timely ride home was nearly impossible. She finally gave up and made her appts. when a daughter or firend could take her and pick her up to go home.

I tried taking a cab to a massage once, I was on a new medicine and didn't want to drive myself. It took me right there, but never came back for me. I called them three times, and finally walked home. I think it was too short a fare for them, they didn't make enough money going 12 blocks or so. I tipped well because I knew they really wanted a longer fare. It was money wasted for the massage for me, because by the time I got home, the walking made me hurt so bad nothing really helped for a couple of days. Thank goodness, that part of my life is over.

I do agree that her husband should check out what is available for him, but that is his job, not hers. He may be blind, but she didn't, mention anything else being wrong with him.

Take care, Annette
 
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annette030 replied to surviv4's response:
See a professional about dealing with your anger. It is not normal to be angry all the time, even if you have good reason to be angry. Besides, it makes you hurt more. It makes every muscle in your body tense and tight. Not good if you have FMS, or even if you don't. I used cognitive behavioral therapy to change how I responded to stressors in my life. It worked for me, and I keep at it.

You husband will likely learn with time.

Take care, Annette
 
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booch007 replied to annette030's response:
So agree here Annette,

Being angry wins nothing but sucking energy from you. It increases pain and also the bit of balance you may have in your life. Learning to forgive or to let it wash off of you is such an important gift.

I am so much better once I found here and can believe in all that I feel is real, I don't care who understands it or not. (Well maybe the doctor I am with....) I just move on and away from the issue. Hope you can all learn a technique to help with this. Nancy B
 
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annette030 replied to booch007's response:
I let go of being angry over the small stuff in life years ago when my son was deployed to Afghanistan. I let stuff go...only I will suffer for it if I don't.

Take care, Annette
 
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An_237151 replied to homecoming's response:
"My worst enemy is me for the guilt and uselessness I feel when my fm and cfs make me unreliable. That was a quality I was proud of."

This is EXACTLY how I feel. It is as if I have lost myself.
 
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sweetpatches replied to An_237151's response:
know right? and even though some people understand , some dont- if you say it you should do it , you always have before.
well, anyway , when this happens it becomes a very lonely world. making one more depressed.


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