barefut

Got Motivation?

20 posts in this topic

How does anyone in constant pain even get out of bed in the morning to take care of themselves let alone the house, the kids, go to work?

 

I feel like I am becoming a lazy, whining, sympathy monger who no one wants to listen to or be around and frankly if that is the reality then I don't blame people for not wanting to be around me.

 

Gotta go, my fingers are blue.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello Barefut

 

Now let me think, do I have constant pain...yes, do I get out of bed in the morning...NO! Do I go to work...NO! I get up in the afternoon, am unable to work and need Ma or hubby to help me out around the house. If you're lazy I must be a walking corpse! :lol:

 

If we sclerodermians were lazy, whiners we'd have every right to be, we have scleroderma, the truth is we're anything but!

 

Take care. :flowers:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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Barefut, I can't even imagine being in constant pain. I think the fact that you can still log in to this forum and share your feelings is remarkable - I doubt I'd be able to do even that! I wish I had some magic cure or advice that would make things better for you, but I don't. All I have is sympathy and a promise to keep you in my thoughts. And some hugs, if that will help.

 

Hang on to your sanity and I'll keep my fingers, toes, eyes, etc. crossed that you get some relief soon!


Sharon T.

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Hi Barefut, I agree strongly with Amanda. I don't have it to the degree that either of you do, (now), but 3 years ago I remember feeling just the way you describe. Looking back from where I am now, I think I was pretty strong to go through what I went through, whether I talked about it, or whined about it. I won't be going back to work, and at first it was hard to realize. But now that the decision is made, I'm feeling pretty good about it actually. I know I couldn't do the job (tire builder). And on days when I can do nothing, then that is what I do. Any "sclerodermian" is far from being "a lazy, whining, sympathy monger". Not everyone could do this. Only the strongest of people. And I consider you, my friend, one of the strongest. love and Hugs :emoticon-hug: Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Hi Barefut,

 

Nothing to say except I am so sorry that you are miserable. What you are going through is a major bummer and you can only do what you can do. You have had a life so far of doing stuff and I bet your family knows that you as the true you. It's natural that you feel so bad about complaining or not being as productive as you want. Your family knows you, cares and feels bad that you are suffering. They probably feel unproductive because they can't take away your pain. Hang in there and know that you are not alone. Hope it all gets better very soon. Thinking of you and wishing you well.

Lucy

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Well I have the same issue: Too tired to be motivated. I found a solution. This year I wrote to Santa and I asked for a portion of energy, enough for 365 days and a dozen cleaning and cooking fairies :lol: Now only one issue: Finding energy to make cookies for Santa when he comes to my house with the energy and the fairies... just kidding!! I must be silly, or I won't manage the cold this year!

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:temper-tantrum: I'm sitting here with a scarf around my nose and just pulled off my gloves as my typing looks like this wedweythin when I try to type with them.

I certainly do not have so much pain as others seem to have. I suppose it's another thing to look forward to. But I did have my first serious "I'm looking at the rest of my life" downer the other day. I was like a sock in the gut.

But the dog has no sympathy she wants breakfast. So do the other animals so I roll out of bed due to guilt. And usually it's not as bad as I was fearing. The little creeps usually can make me laugh.

I don't have anyone who I can guilt into doing for me.

But if you do not make some noise about it, then how are you going to get the help you need. You know kids- it never occurs to them that things have changed and they now need to assist. It won't hurt them to learn this as long as they also see the effort you make to help them too.

So :P on scleroderma, :P on forcing what you can't do treat yourself like you would someone else who is sick and give yourself a break. You'd give it to someone else.

 

Gloves on :bye:

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Aww shucks girls. Thanks for the sympathy :wub:

 

I've had to go back on prednsione - not happy about it as I just weaned off and it took a long time. But I cannot function on anything less than 10mg right now (myositis :sick2: ) I will start Imuran as soon as it shows up in the mailbox.

 

I unintentionally fell asleep on the floor this morning for about 2 hours and missed my son's Market Day at school! At least I was able to do the dishes and pick up the house before I went to work this afternoon.

 

Thanks for the love and warm fuzzies and right back atcha! :wub:


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut when you read your first post and then your last you are far from lazy!!! For heaven's sake you had a word in your post that hasn't been in my vocabulary since 2007...WORK! You still work! Good for you. There is no way I could hold down a job and would be so undependable and by Noon so tired that I can't stay awake.

 

I wish I could stay in bed all day but for some reason I pull myself out of bed and shower and make the bed and get in comfy clothes and then curl back up either back in bed or on the couch. But before that I have to get stuff done around the house no matter how bad I am it's the perfectionist in me. It's terrible. It's almost like OCD. It's just the way I was brought up. That's probably why my family doesn't see me as being as sick as I am because I still do all the grocery shopping; all the laundry; all the cooking; all the ironing; everything I used to do I'm still doing, even though it is sooooooo hard. But if I don't do it it will bug me to no end and I mean bug me so how does a person turn that off. I have terrible, terrible muscle pain in my legs and arms that is constant and in fact has worsened so much in the last 2 months that I finally called my doctor about it. He's running some new labs on my blood but I really don't think there is anything other than the pain patches thath I wear and the oral pain meds. IVIG hasn't worked; Methotrexate isn't working. The Cellcept is helping with the skin and I hope with the lungs, even though they are worse every time they're tested.

 

Sorry I went on and on but to answer your question you are far from lazy. I applaud you that you are still working and I wish I could rest like I should and stay in bed on days that I should be staying in bed. Maybe I can learn from you.

 

Warm hugs,

Peggy

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Hi Barefut....me again. I just read that you went back on 10mg's of prednisone. I was on it for 2 years at 80mg's, then like you weaned off of it for the next year. Well, couldn't do it. I have the polymyositis and scleroderma too. I went back on 5mg's of prednisone. I take 150mg's of imuran. (50mg's 3 times a day). It's been great for the polymyositis, my blood work is perfect. Like you, I don't want to be on the prednisone either. My bone scans aren't coming back so good and next year I may have to go on some heavy duty stuff for the calcium. It's the one done by infusion once a year but one of the side effects is that it could deteriorate your jaw bone??? So the end of Jan. I'm gonna try and wean right off the prednisone again. But if I can't do it, then I'll stick with it at this low dose. I could stand to go higher but I find anything over 10mg's I get side effects. I hope that you do as well on the imuran as I have. I don't "think" I have any side effects, but I don't know what are side effects from the drugs and what are effects of either of the diseases.....anyway, hang in there and I'd like to hear how you do when you get the imuran. They told me that it would probably take about 3 months to take effect, and it did, so don't give up on it to soon. Good luck with it! - :emoticon-hug: Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Barefut,

 

I don't know how you do all that you do, with or even without scleroderma and myositis. My hat is off to you. So what if you can't manage absolutely everything perfectly--after all, who can?

 

Hugs,

 

warmheart

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Hi Barefut,

 

How can you call us lazy? You are doing a lot more than majority of us can do. Regarding motivation, Scleroderma is like a downward spiral. It needs to be stopped and steps to be taken to move forward. For me, items which helped me reverse the cycle were:

 

1. Keep on reminding myself, what are my choices?

 

2. Keep busy

 

3. Take control of my health issues myself read, investigate, questions, etc.

 

4. Finally, breathing exercises, yoga, walking, etc.

 

I know you can do it.

 

 


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

I don't mean to sound like I am calling anyone else lazy. I feel lazy myself when I look at my home and know that I could pull myself up by my bootstraps and tackle the chores if my life depended on it but moving a muscle takes so much energy and hurts! So I sit and look at my mess and just feel lazy and ashamed of myself.

 

Today I never got out of my jammies. I had all these plans and all I did was make the boys breakfast and lunch. They are on their own for dinner. Still no holiday decor or tree up, maybe there won't be this year. (kidding)

 

Anyway, I used to have motivation to at least clean up for company but I find myself just cancelling get togethers. I have postponed a dinner party here at my house twice now!

 

I feel a tangent coming on but I can't stop myself from going off on one right now - it's the most motivation I've had all day. Maybe this should be a blog. I actually sometimes try to convince myself that the pain and fatigue is really just all in my head and mind over matter will prevail. Yea, doesn't work.

 

I see commercials for sports drinks and athletic shoes where the athletes are shown in slow motion, muscles flexing, sweat flying and teeth clenched, faces in agony as they strive to reach their goal - no pain, no gain, yadda, yadda, yadda....Well I can't help but think that's what I look like trying to get dressed in the morning - minus the muscles flexing part of course.

 

My recliner is calling...


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Serena,

My apology for the typo. I did not mean "us". I meant, how can you call yourself lazy. Having work, family, kids, health issues are platefull for any healthy one also.

 

Take care of yourself.

 

Kamlesh


Kind regards,

 

Kamlesh

 

 

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