Do Not Judge

Hi, Tina.

So true...I'm having one of those days, too. I washed a cotton crinkle skirt, and the act of getting it out of the washer and rolling it in a towel to get some of the water out was enough to start the lovely cascade of symptoms I'm so familiar with: allover fatigue; achey, shaky arms; pain in my neck; pressure in my sacrum and down into my foot. That pressure is now also starting to morph into pain.

I was going to try showering before meeting a friend for coffee in a couple of hours. Now I'm not so sure. It might be wiser to not ;(

Hope we all end up having one of our better days after all!

Debbie

I was confused when I first read your post, too, but I looked and couldn't see where anyone on this forum judged you so I assume you are "talking" to the people that judge you in your daily life. Yes, that's a bummer!

I do have to agree with Karen, though. I wasn't trying at first either. I just felt why bother? I'm going to hurt anyway so I sat back lost muscle strength and piled on the pounds. I still had all the pain and actually had more pain because of the excess weight I was dragging around. I finally got tired of living like that so I slowly started to try to get back into life as much as possible. I took baby steps, started eating properly by counting carbs (lost 85 pounds that way), and started to walk as much as I could. I lived up north so I couldn't get out because of all the snow so I got a walking in place video and that did the trick for me.

It did take a few years of trial and error and effort but they sure have paid off big time for me! Sure I have pain but I can work around it now. I'm sooo thankful that I chose try to start functioning again because now I am a widow. I certainly would not have been able to do what is necessary to stay in my home if I hadn't. But I did gain strength and can take care of my home and garden....by pacing myself. Very important!!!! I didn't pace myself a couple of weeks ago when spreading mulch and I'm still paying for it. I had to double up my pain medication (I use 600 mg ibuprofen four times a day when I'm bad like this). So, lesson, hopefully learned.

Just hang around us and we can help encourage you so you can get much of your life back. I KNOW you don't want to keep feeling this way. We all have lots of good ideas as to what helped us and you just might find that these things will help you too. Do feel better.

Sherrine

Rockon, you need to let your sister-in-law know that fibro is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization just to name a few. She obviously is in the Dark Ages when it comes to this illness. I'm sorry your own family acts that way towards you. No one deserves to be treated that way. I know I would avoid all discussions of health. You will only be hurt more.

I remember times when I could barely walk through the grocery store. I can't imagine having to do that twice in one day when I'm feeling really bad. I bet you won't leave your cart again. Most people are kind though. It sounds like you ran into a nasty one today.

I hope you feel better tomorrow and don't be hard on yourself. None of us has asked for this illness but we are learning how to enjoy life in spite of it.

Sherrine

Haha. Twisted shopper. Oh that shower--- it does go on a back burner a lot.

I'm sorry there are people who just refuse to believe fibro is as bad as it is. But I take major comfort in knowing there are people such as here, on this forum, who DO 'get it.'

I remember a few years back, I had horrific muscle spasms and cramping in my legs/feet (still get it more mildly). Driving was impossible.  Walking around in my house was incredibly painful.  Yet, a family member somehow thought I'd have no problem driving 25 miles to run an errand!!

 I guess some people only see/hear what they want to see, unfortunately.  I just ignore it now.  I surely shouldn't need to explain it any more.

Despite the naysayers, I hope everyone has a great day. Things aren't perfect, but good to know we can always 'vent' here.

Thank you everyone for your thoughts. This thread reminded me of a dinner I went to last month and one person looked at me and said "you look great! You will be just fine." at that moment she didn't know, of course, how I really felt,
the pain I had in my right leg, the difficulty I had walking down the stairs to see her new house etc etc. To many we look fine on the outside.

Bella

Fibro was bad enough but now with the vitamin d being low..also .. I am so weak from the d being low...
So i just sat in the sun for my 30 minutes..because after this nasty winter....rebuilding that d is a number one priority...my muscles were tired and sore before, but now the weakness is overwhelming

Took a shower, put in some laundry, plan to stretch..and going to cook an easy meal tonight...its not a lot to get done...but for today it will have to do!!!

Even my husband says its hard to remember the pain levels cause i look ok..by evening he sees my face change..and reminds me to take something for pain...

Diane, I hope you're not taking on too much by yourself?

Debbie

Thats true , we expect more of family...but not always get it

Diane -
I'm glad we can help you some....will be thinking of you, hoping things work out alright...

Haven'tquitegivenup -
Welcome. You make an excellent point. Unfortunately, I'd have to agree with you. Why don't you start a new thread, introducing yourself, with something like, "newbie" in the title? (That way, more people would notice you, and you wouldn't get lost in the shuffle.)

Debbie

My family is pushing me to join the local YMCA.
They shake their heads when I climb onto a cart to shop. They shake their heads when I use a cane for long shopping trips when there's no carts to ride. If I hobble with my pain they think I'm faking how much it hurts.

I would just like to say that when reading the original post on this thread, I felt as though I had myself written it. I haven't been able to hold a job the last few years (the longest lasting about a year) and am now collecting unemployment. I have okay days and terrible days. I don't believe that other people understand my condition, even those closest to me. My boyfriend and family are supportive and I am thankful, but I still feel as if I have to conceal what I am really dealing with just to appease others. I can't expect them to understand something that they cannot experience, but I feel as if my life was taken from me. I have tried everything that I can think of for treatment, putting myself in great medical debt at times only to have to dig my way back out to a place that is no better than before. The judgement I find hardest to deal with comes from within. My mind sees everything that needs to get done, things that I want to accomplish - whether as small as vacuuming the floor or as big as starting a family - as impossibilities. I beat myself up for not being able to perform basic duties that others do with ease and often a feeling of guilt overcomes me. If I cannot muster the energy to clean a floor or get dressed, how will I ever be able to hold a job or own a business, or have a family. I am only 30 years old and I feel as though the life that I imagined has been taken from me, overnight, and for no discernible reason. I see all the things my friends are able to do, how hard my boyfriend works each day, and I find such little pride in the small accomplishments I can make that I realize to others they must appear as nothings. No, I am not lazy, but my body is. It makes all the things my mind wants to do impossible. To add salt to the wound, on days my body decides to cooperate, my mind decides it is time for a vacation. If all I have to look forward to is being able to get dressed, possibly complete some housework, and then perhaps run an errand (that being a good day), then what am I really living for? I am not depressed, I am not suicidal - I am frustrated with my life and my condition. I know it is out of my control, but I feel ashamed for my existence. I wish everyone could understand that we all want more out of life and this is not a chosen path.