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Struggling here :(

Jan 18, 2015 11:31 AM

I am trying to keep my whits about me but in all honesty I have basically been in a flare except for maybe two days over the last two weeks. I cancelled plans today, did some light cleaning for a couple of hours yesterday, but really have been trying to lay low. I am just struggling so much with the guilt of needing to lay low. I feel "lazy". It's just feelings. I am also quite scarred today and have some fears going on inside my head. mainly about finances and am I going to have to cut down more hours for work. I don't know how to handle this all. I think it was easier when I was in denial around my fibromyalgia for so long. But as I age this disease is staring me in the face. I am so nervous that people won't believe me and I am fearful that I will become nothing. :( sad

Jan 18, 2015 12:10 PM

I can definitely relate to your feelings. They plague me too. At the same time there is a part of me that feels entitled not to think/feel this way and to just go with the flow of the day. If I need more time, need an extra break, so what! Others do too although their reasons may be different. Why do I shortchange myself by expecting superhuman performance of myself? I will never be nothing! I always have something to contribute except maybe my sphere of influence will be smaller. And that's okay! I did dishes yesterday and cooked for yesterday and today. That's all I had energy for. I know I should go grocery shopping but I just don't have it in me today. Tomorrow is another day... Do something you enjoy and let the rest of the world worry about their own stuff!

Jan 18, 2015 1:05 PM

Jesswoo, I know what you mean! I guess I am in denial about my fibro too. But some days reality hits me hard and I find myself fearful of how much worse will this get (the pain) then my mind goes to finances then my pain gets worse. I swear I can feel it in my shoulders (pain) getting worse as I worry...I just recently had my hopes up super high because I thought I had found something that was going to help my fibro. Well my hopes were crashed as the pain has been awful! So I have been extremely upset, and depressed over this.
So seeing how it is a nice day today, I said I am NOT going to let this illness stop me. So I went out for a walk and cleared my mind and decided that just for today I was going to worry about today. Tomorrow has its troubles of its own. Jess, I hope you can get some relief. I sure am thinking about you.

Jan 18, 2015 1:29 PM

Jesswoo, I can relate to you so much...have struggle with similar feelings for the last 3 years. Was a full time working mom (nurse) until 3 years ago when I had one surgery that didn't heal as expected, then a back surgery 4 months later that also sas slow to heal and I never was able to get back to work...chronic pain developed, inflammatory responses, endless dr appt to try to figure what the heck was going on, memory problems, fibromyalgia diagnosed, physical therapy, Accupuncture, and so on and so on. Nothing helped. I was in a dark hole getting deeper with depression setting in from the unexpected situation that I was experiencing. Thankfully my kids were not little anymore. It took my hubby couple years to come to terms with the fact that I would not be going back to work anytime soon if at all. I am grateful he has become super supportive, anyway, sorry I digress lol.
Anyway, year one and two of not working, I struggled with similar thoughts and feelings as you. I couldn't believe I was able to work, able to make a meal, able to go food shopping alone. It was crazy. My life had become someone else's. I isolated myself. I resisted taking pain meds till 1 1/2 yr ago when I started with getting an excruciating burning sensation in both palms.
Fast forward some time, I spend many days not doing anything at all besides laying around in bed or sofa. In the last 2 weeks I have also had some kind of fibromyalgia flare and have canceled a bunch of dates/appointments so I can lay low at home. Because I've had to do this before and had those feelings of feeling lazy, wondering what people, family, hubby is thinking of me, feeling useless, worthless etc.... I have to say I don't feel guilty anymore. I figure I am the only one hat is going thru my pain, fatigue, memory loss, etc etc and if I don't listen to my body I will get worse. I didn't ask for this, I have given a lot of myself to my family, to my former patients. That's all I got. I have to take care of myself.
Jesswoo, you have to take care of yourself. You can't take care of anyone else if you don't take care of yourself first. You have to be kind to yourself. Give yourself the care you would give those you love. The people that don't try to understand you can go to he**...they aren't worth your time and energy. Listen to your body. The stress you incur in all those negative feelings about yourself you have only add to the flare up. Try to live day by day, don't think too much and do the best you can with each day. At least that is what I tell myself to do. Lol. Doesn't always work but I try when I can.

Jan 18, 2015 2:05 PM

Jesswoo, I agree with everything said above. What's surprising to me is really how much all of us have in common. As I read Sandibeachs post, it felt sadly familiar, because mine also started following surgery that didn't go as planned. I have noticed many on this site suffer fibromyalgia after surgery. What crossed my mind was a question, "What was used to put us all to sleep? Is there an anesthesia link, or is it a sex/age relationship?" Who knows really. But on days I don't feel well, like today due to fibro & a headache, I do not feel guilty. I don't keep the house as sparkly clean as I use to, and I don't apologize. If someone comments negatively I ask if they're volunteering to help me out. You rest and take care of you. If someone else has a problem with something not being done, speak up and say you're having a bad time but would really appreciate if they could do something, anything to help out. Get rest & get better.☺

Jan 18, 2015 8:03 PM

You all are grrrrreat! Thank you so much! Your words are all helpful! (But of course I started feeling guilty and like I am being a baby because I have never had surgery like a lot if you)! Negative thoughts! Hopefully tomorrow will
Be better and I will get through my work day helping others. Hope you all are well. Much thanks for the support and kind words.

Jan 18, 2015 11:31 PM

NEVER feel like a baby about surgery. It doesn't matter what kind, you're dealing with anesthesia, being opened up and having work done on your body. I have has 27 surgeries in the last 19 years and was terrified with every single one. Just keep in your mind that you have the best doctor, the best anesthesiologist, and the best OR Staff. Then just keep thinking you're going to have a restful sleep and when you wake up it will all be finished and you start your recovery process. Also, remember to let THEM take care of you. If your hurting or need
Something, ring for the nurses. You will do just fine. My thoughts and prayers are with you and I look forward to hearing about a positive outcome. Hang in there.

Jan 19, 2015 12:29 AM

Jess, I understand where you are coming from. It seems like when we have been down for longer than a few days, that it has been like this forever. But soon, this flare up will pass and you will forget about it. At least that is the cycle that goes for me. I am not trying to tell you how you feel. But trying to offer comfort that soon this will be past and forgotten. But in the meantime, All we can do, is rant and cry. It is so hard, I am so glad that we have this support group because we are surrounded by people who understand and know what we go through because even though we want understanding and empathy from our family, we are glad that they do't feel the way we do. We are glad that our children don't have any idea what our pain feels like especially when it last so long and tears down your recourses. That they can live life as care free as possible. That is what gives me comfort. So I try to iive through them. They get upset with me when I ask them what they are doing today or how there day was? That makes me sad. I wish they knew that I would love to do at least half the stuff they are able to do. But in the meantime, I like to listen to the things that they did that day. And then I have my hobbies. I am sorry that this is hard on you at the moment. When I am in tremendous pain for several day and it seems like forever, I say a prayer. I ask God, if it is his will, can he please give me several hours or more of relief so I can regroup myself so I can refill my recourses for the next wave to come. He always comes through because he says that he will never let us bare more than we can endure. I figure we must be some very strong people. We can feel good about that.But sometimes, I really dont
want to be that strong.

I am writing on endlessly, so I will go. Best wishes of getting your break soon. i hope that your break at least last as long as you have put up with this bad bout of pain. Best wishes to you. I hope you get to feeling as best as you can soon.

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