HealingWell
Search Close Search
☰

Help getting up

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/11/2010 4:01 AM (GMT 0)
Hi all,

 

I was dx with Fibro back in 2005 and had to leave my job of 17 years in early 2009 because of the pain and fatique . I am now having a lot of trouble getting out of bed. When I was working I had no problem at all getting up at 6:30 and out of the door by 6:45. Now I feel that I have no motivation to get me up. There are times I can just stay in bed all day.  I will sometimes set the alarm get up turn it off and get back into bed.  I have no children at home and a hubby that is very cooperate with me so no one is pushing me to do anything. I did have my own vehicle until June of last year so I feel as if I have lost all sense of indepedence. There is a mall accross the street but I can only walk over so many times. I have a ton of things I could be doing around the house but I tire so easily. We are also just coming out of a bankrupcy so the stress of the past year and a half has been awful.

 

The one thing that I think would get me out of bed is volunteering but because I am in the process of appealing the decision Canada Pension made regarding my disability pension I am not allowed to volunteer. They figure if ya volunteer then you can work. I believe I can volunteer once the decision is made, hopefully in my favour, then I will.  I have been fighting with CPP since June 2009 and it will finally get to court March 2011. 

 

Looking forward to your responses.

 

Lorraine

Posted 11/11/2010 7:15 AM (GMT 0)
HI Lorraine!

I'm sure glad you posted this. I had to quit working just over 2 years ago and it tore me up inside. It still hurts but I'm starting to get back to who I used to be...make sense? I do understand that feeling of uselessness. Sure, there are things I could have been doing but staring into space was easier. I would get spurts of energy but the never lasted long.

I talked to my doc about it and we have worked together with a very light dose of an antidepressant that I can tolerate and it works well. I'm wondering if this would be something you'd be willing to do...talk to your doctor. What you describe could be signs of depression, but it's very treatable. I balked at first because of the stigma, but once I realized I was in a 'hole' I decided I best try if there was any hope of me climbing back out of that hole.

Give it some thought., OK? we care very much about you.

Oh, and about volunteering??? There are plenty of things you can do for others without physically going anywhere. Do you knit, sew or crochet? Hospitals all over the country can use many items that are handmade for preemies, children and most any patient for that matter. But the need if often in the NICU and infant nursery. And even though it sounds sad, they also need small "gowns" for babies who don't survive miscarriage or stillbirth. Here are a couple of organizations who could use some help and I believe you can donate anonymously. You could always stockpile things and give them later after the government decided on your case. Just a thought.

Hugs,
Chutz

www.childrens-mercy.org/Content/uploadedFiles/Sewing%20for%20Charity.pdf

www.projectlinus.org/links.html

www.bevscountrycottage.com/bereavement-gowns.html
Posted 11/11/2010 8:12 AM (GMT 0)
Thanks Chutz you are the best.  I am actually on 2 different anti-depressants. I also see a therapist once a week. It is so very hard to go from such a structured job/life  I loved and to be doing nothing.  When folks retire from a job they usually have things lined up but in my case I thought i would retire from my job in another 10 years or so.

 

The ideas of knitting etc. are great ones but I am not good at any of it.  My job was for a non-profit organization and I did work with many people who had special needs. Now if I could just think of a way to help out with out actually being there.

 

Lorraine

Posted 11/11/2010 4:01 PM (GMT 0)
Hi Rascal, just thought I might mention this. My husband has been on anti-depressant since 2005 but over the last year I could tell they werent doing the job well enough. I talked to his dr. about it and they gave him a new one that has worked out well for him. Maybe yours are no longer doing enough for you. I know there have been times where they have switched mine because they were no longer helping.
I hope you find something soon.
Gentle Hugs
Shirley
Posted 11/11/2010 4:36 PM (GMT 0)
I am by myself 90% of the time.  I'm a widow and my children are all grown.  There is absolutely no reason for me to get out of bed except to let my dog out.  But I know if I stay in bed, the pain is worse when I do have to get up.  It's much better for me to keep moving and motivated.

 

What I do is make plans ahead of time for the day...at least the mornings.  Mornings are my very best time and I have the most energy.  I set a goal for each day and when I meet them I feel so good about that and that I'm accomplishing something.  I might just pick out a closet or a corner to clean out and you feel so good when it is done.  Don't procrastinate though.  That's sooo easy to do.  Just jump in and start and before you know it you will have your accomplishment under your belt.

 

As Chutz mentioned, finding something you love to do helps.  I love working on genealogy and can do that from home with Ancestry.com and other sites.  It works my brain and I'm creating books for my children to pass on all about their roots.  Maybe this would be something that you would look forward to to get you out of bed!

 

Like you, I have always done volunteer work.  My mother was very active with charities and taught me and I was collecting for various charities when I was a teen. This continued into adulthood.  But when fibro hit, I didn't want to volunteer for something and then not keep my promise.  (You never know with fibro.)  That's where HealingWell came in!  To me, I'm volunteering here trying to help others.  So is everyone else!  It not only helps us but it helps others...even lurkers.  So this is my volunteer program and I can do this from home.

 

I think once you start doing something, you will get more motivated.  Then, as the accomplishments pile up, you will be very happy about that and you just might not need medication.  Some people still do but even so, you will feel "brighter" and happier.

 

Sherrine

 

 

Posted 11/15/2010 12:28 AM (GMT 0)
HI,

 

Thank you so much for your replies. I always feel uplifed when I come here. I am off to the Dr. this week and I will talk to her about my anti-depressants. I have started to see a therapist and I do think that is helping. I do think I am too hard on myself so i guess I will have to learn to be happy with things as they are and as they will come.  Loss of control and independence is such a big one for me.  I think I have just learned that I always say ...tomorrow I will....then tomorrow comes and I don't feel well so I don't do what ever it was and I beat myself up. No more.  When tomorrow comes I will try to accomplish the best I can and be the best me.

 

Take care,

 

Lorraine 

Posted 11/15/2010 3:06 AM (GMT 0)
Hi Lorraine,

I too can emphasize with you. I've been on disability from my job for just over a year now. I honestly thought when I started short term disability that I'd be back to work within a month or so, but it didn't happen like that at all. I don't know if I'll ever be able to go back to work - I can't sit, stand, lift, carry, bend, etc without being in constant pain - plus the fatigue is awful.

I am on Cymbalta (along with other meds) for my Fibro, and I found it did help lighten my mild depression, but it's taken me a long time to accept these life changes. I've had periods where getting out of bed was impossible and I only got up to use the bathroom. I have several hobbies that sat undone for months and months while I tried to accept this deeply un-functional body. My husband has always treated me like a princess and taken care of most of the cooking and cleaning (including the laundry - I haven't done it once in 16 years), so there was no issue of me letting chores go by undone.

It was really just a nagging sense of "who am I now?", "what is my role?" and trying to figure out how to best repair this worn out body. I'm better now about being honest with myself on what I can and can't do, and I've stopped pushing myself to do stuff when I'm in agony. I"m giving myself permission to say "no" to doing something I know won't benefit my health, and I've stopped feeling guilty about any of this.

I didn't ask for this, but obviously my life isn't going to be exactly what I thought it would. I'm going to be living with pain until the day I die...so I'm learning how to make the most of it. I've also made new friends and connections because of my chronic pain...I wouldn't know ANY of you here if I wasn't hurting!!

I hope you have a good doctor visit, and that you're able to work together to find a dosage of your meds that might be more helpful. Just remember, you are NOT your pain.

hugs,
Pam
Posted 11/15/2010 4:52 AM (GMT 0)
Lorraine

I sympathise with you. I went from 40 hours per week, to 30 to 20 to 14 to 10 to 6 then 4. It hurt, cause I loved my job. Now I only work 2-4 hours a week. Fibro really gets to the core of our personal growth and self image.

I was like you. Who am I now? I always identified myself with my job. So I do volunteer work. They usually have social events attached to them as well. So I get my diary and put in my appointments and to do list (Ha!) for the week. But instead of taking a day to do tasks it now takes me 5-7 days and I only allow one appointment a day - that may be paid work or volunteer work, but mostly medical appointments. Some days I can't make it due to pain, immobility or flu like symptoms, so I reschedule. But I'm a Virgo and I need structure and this is what props me up, and it makes me feel important, or worthwhile. I try and do one thing a day - clean a drawer, cook a meal, go to an appointment. Just one thing a day - that's all I ask of myself - fibro may have affected my self image but it won't take away my self esteem and personal growth.

Goodluck with your court case. Lots of gentle hugs.
Oxygene
Posted 11/15/2010 4:54 AM (GMT 0)
Pam

Please tell me how you were diagnosed with Renauds, if you don't mind.

Oxygene
Posted 11/16/2010 11:12 PM (GMT 0)
Wow.....you ladies are the reason I come here. It is like you took the words straight from my mouth and are living my life. It is so very comforting to know someone feels exactly like I do. Not that I would wish Fibro on anyone.

I do believe I am still very hard on myself. I do like the idea of just getting one thing done and feeling good about it. Being a perfectionist and multitasker as I am sure we all are it will take a while. I think I am all or nothing and nothing is just not working.  I still have a lot of guilt about my role at home and in lfe in general. I have worked since I was 15 and I am the big 50 now. I still think I am in shock about this entire thing. Even though I had to leave work almost 2 years ago I adored my job and had no intention of ever leaving unless they dragged me out.  I too went from from 40 hours down to 18 hours a week and even that became too much.

I do have a couple of appointments this week and they are hard to get up for. I even told my therapist last week that I am too depressed to get of of bed to see him to talk about how depressed I am hahaha.

I think I just need to reconcile all of this and stop being so stubborn. I know it is never going away so I will have to make the best of it.

 

Thanks again...I appreciate the help so very much. wink

Posted 11/16/2010 11:39 PM (GMT 0)
Lorraine,

It makes me mad to hear that they won't let you volunteer if you're trying to get disability. It's not the same thing at all! With a job you have to be there whether you feel well or not, volunteering is much more flexible and you can do as much or as little as you like/can. Oooh, that just burns me! All that goodwill and caring intentions going to waste.

Debbie
Posted 11/16/2010 11:55 PM (GMT 0)
Me too Debbie.  At my job I depended alot on volunteers. I ran a charity for people with special needs so a lot of volunteers were always needed. I know it would bring me great satisfaction and something to get up for but for now I have to follow the rules. I wish I  could volunteer from home:-)

 

Lorraine

✚ New Topic ✚ Reply