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Got Motivation?


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#1 barefut

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Posted 11 December 2009 - 06:34 AM

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.

#2 Amanda Thorpe

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Posted 11 December 2009 - 08:14 AM

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:
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#3 Sharon T

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Posted 11 December 2009 - 08:25 AM

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.

#4 ladyhawke

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Posted 11 December 2009 - 09:04 AM

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.

#5 Lucy H

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Posted 11 December 2009 - 11:17 AM

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

#6 Sweet

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Posted 11 December 2009 - 01:37 PM

Barefut,
Loving you from east of the mountains my friend. :emoticon-hug:
Warm and gentle hugs,

Pamela
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#7 Eos

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Posted 11 December 2009 - 03:02 PM

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!

#8 enjoytheride

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Posted 11 December 2009 - 05:26 PM

: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:

#9 barefut

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Posted 11 December 2009 - 06:14 PM

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:

#10 Peggy

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Posted 12 December 2009 - 08:36 AM

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

#11 ladyhawke

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Posted 12 December 2009 - 12:10 PM

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.

#12 warmheart

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Posted 12 December 2009 - 12:54 PM

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

#13 Kamlesh

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Posted 12 December 2009 - 04:28 PM

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


#14 barefut

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Posted 13 December 2009 - 03:52 PM

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...

#15 Kamlesh

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Posted 14 December 2009 - 12:27 PM

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


#16 Tasha

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Posted 15 December 2009 - 05:05 AM

Hi every one I'm new here. my name is Tasha and I can totally relate to what you are saying. I've been on a two week medical leave recently, not able to lift more than 10 lbs.

The pain in my back and ribs area made difficult to get from a sitting or lying position without extreme pain. I have limited scleroderma, and haven't heard of anyone having pain in this area.

I had to miss work work yesterday due to GERD in the night horrible taste that you can't get rid of, not able to sleep kept coughing was totally rung out the next morning.

It's so frustrating when you don't feel like doing things you want and need to do.

P.S Don't have my holiday tree up yet either.

Tasha
-_- -_- -_-

#17 Amanda Thorpe

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Posted 15 December 2009 - 07:36 AM

Hello Tasha

Frustration should be a recognised scleroderma symptom!

I am sorry about the pain in your back and rib area, have you had your doctor check it out because if it's that severe you really should.

We have a page about GERD (gastroesophageal reflux disease) in particular prevention and treatment that you may find helpful.

I hope you get some relief soon, take care and keep posting.


Amanda Thorpe
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#18 Tasha

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Posted 15 December 2009 - 01:17 PM

Hi Amanda,

I had gone to the doctor for the back pain and he prescribed prednizone, and pain pills. He also put me 10 lbs. weight limit for two weeks which made me not able to work as I am a nursing assistant and lifting is necessary.

I usually don't have trouble with acid reflux in the evening if I eat light meal not to close to bedtime. This was one of the worst times I've had with it.

Thank you for you're reply. I really enjoy this site, I don't feel so alone with my health issues anymore, Thank you.

Tasha

#19 smac0719

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Posted 28 December 2009 - 02:01 PM

Barefut,

I hope you are feeling better these days. I remember in the not so distant past days like you describe. I too was working and had children that depended on me. I was a "workhorse" and keep everyone moving and everything in working and functioning order. It frustrated me to no end that I couldn't do the things I was used to doing or that I wanted to do.

But then something happened....I realized I was not Superwoman and didn't have a supply of Kryptonite. It was ok that the clothes didn't get washed, the floor mopped or vacuumed. I did what I could and allowed my body to do it's thing while encouraging my mind that "this too would pass". Because I was not diagnosed yet, none of my doctors would give me anything for the pain.

I began to let others help me which was hard for me to do, even family members; I allowed my able bodied teen sons to help out a little more and found they enjoyed soup and sandwich night as much as I did. I did not cook regularly for almost a year while going through the fatigue and pain. Rotisserie chicken, heat and eat potatoes and frozen steamable veggies also became a staple.

Don't beat yourself up about the current limitations. Accept them and do what you can for the time that you can. If you get down again, just let your sclero family help to pick you up!

Hugs to you! :emoticon-hug:
I may have Scleroderma, but Scleroderma doesn't have me!

#20 barefut

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Posted 28 December 2009 - 04:07 PM

Hi Smac!

Thank you for your kind reply. Yes, I am definately over the superwoman thing and after reading your reply, I realize that "superwoman" is relative. I strive to prepare the meals you describe as staples! We eat cereal a lot. :(

I have been working part time on FMLA and it has made a world of difference in my life in many ways! I am so grateful that it is available and I savor every productive minute at home as well as every precious extra moment with my boys. It's nice to be able to take a nap now and then too!

Thank you again for your encouraging words!
Love my sclero family :wub: