I feel sad, tired and I feel defeated. I am trying so hard to make a better life for myself. And it just seems when I feel a little hope in my heart, someone comes along and smashes it. I try to be kind, instill joy in others and have a positive outlook life. Not this week. Not last week. I was told by my long term insurance company that they were evaluating me to see if they deem me permanently disabled. I was supposed to find out at the end of August. It’s November and they are still looking at all my medical history etc. I’m not upset that this is happening. I’m upset because I feel like they don’t believe me. Or that they are trying as hard as they can to make it look like I can work part time. This probably sounds like I don’t want to work or that I’m lazy or that I’m trying to use the system. I’m not. I was a nurse. I loved helping people. The varying degree of pain and fatigue I experience every day is overwhelming. I never know from minute to minute if I’m going to have a flare. I was on the couch all day last Sunday, Monday, Tuesday and Friday. I was in horrible pain last night until about 4pm today. I would be willing to try and work but I don’t want to get fired. I’ve never been fired. I don’t know. I know I’m feeling sorry for myself today. I guess it didn’t help that three times my sisters have called me the last week or so and I couldn’t answer the phone because they don’t want to know about fibromyalgia and I was in pain at the time. Today I sent what I thought was a respectful text saying that maybe we should have a code that I can text to say I’m ok but can’t talk because of Fibro. One sister told me to just not answer the phone and let it go to voicemail. I thought that was reasonable. My other sister texted “. TO HELL WITH ALL OF THIS!”. If my sisters always treated me this way, it wouldn’t be a big deal. But… they practically raised me and were the best sisters anyone could ask for. They never said hurtful or mean things. It is my fault. I attempted to take my life in 2018. And since then, they have treated me like I’m defective. I told them I was sorry for hurting them. It didn’t help. Both of them don’t want me to tell them if I’m sad or have Fibro pain because it causes them to lose sleep and have nightmares. So I caught between a rock and a hard place. Whatever I say or do or don’t do, is not good enough. I really wish I was good enough or that I felt good enough. Having people, friends, family or who ever tell me I’m not enough, makes my heart cry. Sorry this sounds so depressing. I’m sure other people on this site have similar stories.
I understand where you’re coming from. It’s difficult to live with fibro as every moment can change from the one before. It makes it difficult to make plans. Others don’t understand it. Maybe if there was a clear signal like a purple mark on the forehead people could understand it more and treat it like a “real” disease.
I had to go out on disability because I just couldn’t do it any longer. I can’t sit for long periods of time, I need my daily nap, and some days it’s all I can do to get out of bed.
Do your best to take care of you. Let your sisters deal with it in their own way. If they don’t understand (or want to understand) then that’s on them, not on you.
We are all allowed to have bad days, and you know that you can reach out on this site, as often as you need to, because we care about you.
I don’t understand your sisters shutting you out in the bad times. And the text your sister sent to you was very hurtful - how sad. The hard times are when we need our family the most. Your sisters can’t expect you to just pretend that everything is roses all of the time! Could you and your sisters maybe try going to a therapist together to sort through whatever issues they are having in dealing with your FMS?
My heart goes out to you, Freedom. Are you currently in the care of a good therapist? ’
Please know that you are loved, and we do understand your pain. And, being a nurse makes you very valuable on this site - I have already seen the way that you use your medical knowledge to help others. That will always be a part of who you are.
Hang in there, my friend. You are not alone.
PainedOne, you may have something there!
Hello Freedom I am Annette one of the Moderators of the site and being a retired nurse too we have quite a bit in common thinkin back I think you and I have spoken before. I am sorry you are going through such a bad time at the moment and the non understanding of your sisters stop worrying about them and concentrate on yourself you will come through this horrible spell never feel that you are not good enough or allow anyone to make you feel that way you dedicated your lifeto the sick now its time to give yourself the same loving tender care that you gave your patients we are all here for you I am always about if you want to chat We Nurses Have To Stick Together .Hang in there you will come through this.
Thank you for your support everyone. Unfortunately my sisters live out of state and they have told me in the past, they will not see a therapist with me. I feel like I live a double life. Happy and ok when I talk to them and in pain and silent when I’m alone. Basically my sisters raised me indirectly. They are 11 and 14 years older than me. My brother in law just retired and they moved to Arizona. It’s not that they don’t love me. They just have worked hard and want to enjoy retirement. Both my sisters have said that when I tell them things, they can’t sleep and have nightmares because they are worried about me. My sister did apologize for having that angry response. I’m so grateful for all of you. Annette, we have talked to each other before. You were getting out of the hospital for the second time. I do hope you are feeling better. I’m really, really trying to put my life’s challenges in God’s hands. I feel so bruised and broken. I’m trying so hard to make a better life for myself. And I think God is teaching me about forgiveness. Still, there are so many things I don’t understand. But I’m not giving up. I’m beyond tired and sad. But I’m not giving up. Thank you everyone.
Hmmm, these sisters are also like “parents” to you, it seems, from what you’ve written. Pretending that you are always “okay” may just come back to haunt them someday - because they aren’t really there for you in the way that they should be. I have a feeling that you would never treat them in that way. But, Annette78 and PainedOne are right - You need to concentrate on YOU. I absolutely don’t blame you for not answering when they call, if you are in a bad way. If the one sister is fine to let it go to voicemail, that would be the way to go. I am glad that your sis apologized for the awful text. That’s something, at least. But, pretending you are okay and shutting out any FMS talk? I just don’t get it!
And, you don’t have to be silent when you are alone - Just start a topic, and tell us what you are feeling, or message any of us that you are close to. That is what we are here for! Forgiveness is a beautiful thing. When you treat your sisters with love and respect, they may eventually come around and offer the support that you need from family. Don’t lose hope!
I am so glad you aren’t giving up, Freedom! You are a very special person. I will have you in my prayers!
Stop worrying about what ANYONE else thinks about your illness. Start making yourself, and your happiness a priority. I accept my pain, fibro fog, and lack of mobility as a part of me. Try to get up each day with a plan to do something you are able to do, and will enjoy - whether it’s listen to music under a snuggly blanket, do a jigsaw puzzle, read, crochet/knit, watch a movie or sit and watch things outside your window. I work when I’m able, but I listen to my body. Take care of yourself…and be yourself, as everybody else is taken. (Not my original quote.) Most people I’m around think it’s a bad day if they break a fingernail. People are thinking of themselves, and don’t have a clue what we go through on a daily basis. We only get to live one life, so choose to cherish it - no matter what comes with it! I’ve taken anti-depressants for years, and they really help me.
Thank you sunshine for this really encouraging email. I do worry about what others think. So often if I am asked how I am and if I do tell them I get back, ‘well you look OK so there cannot be much wrong with you’ If I am having a bad day or week like this one has been I tell them ‘I cannot help my looks’ I am waiting for another OT assessment but how do you get it over to them the difficulties I have with the pain and fatigue. I have a carer for 3 hours once a week and she fills a folder in to say what she has done during her visit. I might be able to show that to the OT. The last OT assessment I had she did not even know what fibro is!
If she’s empathic and listens and can adapt well, and reads it up, then she may still be a valuable help, is my experience with other docs and therapists…
Just wanted to say: This is similar to me and my wife, including angry responses and apologizing. Her counsellor advised her to set a time-limit for talking about health, like 15mins., because she says it feels to her as if I’m talking only about health all the time. I’m pretty sure I’m not. But I do have the urge to share with her. Well for a time I actually went as far as counting the minutes. Like: OK, that was 4 minutes - that was another minute, even counting the times she asks me things. At the moment it’s better. Perhaps I’ve learnt to summarize. Or by counting we’ve both got it under control more. And my blog is helping me - imagine talking to her about all of that stuff… It’s not so much that I have to vent, it’s more like it helping me to find solutions by talking about it. I wonder how she’d feel if I had to vent more. She didn’t mind me crying with her after the first week of work. But I didn’t talk then.
Like you I don’t blame her, she has so much of her own, a tough job and many strokes of fate.
I showed my wife a picture with two figures, one called “What you see” smiling with nothing and the other “what I feel” with red splots and black lines everywhere. She seriously wanted/wants me to get that printed on a t-shirt… Might make a point. Would need a big pic one tho…
Shows she knows tho, too…
Wow everyone! Your support and ideas have really helped me a lot. I don’t feel so alone. I was not allowed to have feelings or be authentic growing up and well into adulthood. Long story short, I was abused by many different people in many different ways until my early 40’s. I turned 53 a week ago today. But about 2 years ago, I make pact with myself to be as authentic and real as possible. I’m really trying to be “ me”. Not what others want me to be. I’m really trying to tell people the truth when they ask how I’m doing and not tell them what THEY want to hear. Boy is it hard. Having my sisters put limitations on what I can talk about really hurts. I go by the name Freedom here because that is what I long for. I’ve made a lot of positive changes in my life. I don’t have tons of friends. And the friends I do have are pretty supportive. They do their best to understand and care about me. Now I only let true friends into my heart. I don’t want to be around people who betray or hurt me. Family…that’s one I’m still working on.
Similar here, Freedom, I can relate lots. Having left home at 18, of course not before, of course no later, the first thing I did was to listen to the ‘new family’ I was with to tell me listening to rock music was bad, long hair was bad, to wear different clothes. It was a long hard slog finding myself and growing up, going thru unhealthy relationships - I probably wasn’t capable of living in a healthy one, but in each, I got better, it was always uphill for me, and when realized it wasn’t, I left the relationship, until now where I’m happy and learnt not do depend on my relationship and care for myself. The relationships pushed my home-born lack of self-esteem into social phobia and anxieties, which made my co-dependency worse, but I got out of them too bit by bit, with the help of therapy and friends.
Thankfully & luckily fibro waited for that moment in which I have the inner stability and strength to cope with it fully - it isn’t making me fall back into any old patterns, is making me learn to be even more self-aware and self-caring and I think even happier and content with what I have, despite new diagnoses and pain.
I only hope and am doing all I can not to get CoV or any other virus for that matter…
I still feel really defeated. So much has happened in the past 7 days that it would take a very long time to explain. I’ve been having bad Fibro flares since the cold weather has arrived. I realized how much worse I am compared to 1 year ago. Today when I was limping down the hallway, I wondered if in a couple years, I’d end up in a nursing home. When my pain is everywhere and I can hardly stand, I wonder what my future is going to look like. Does fibromyalgia get worse over time? I’ve only had it 2 1/2 years and I just turned 53. I feel so helpless and hopeless right now. I know I’m feeling sorry for myself. But, I’m scared. I’ve never felt scared that I might end up in a nursing home. I have fibromyalgia. That’s all. I don’t have any autoimmune diseases. At least my labs always come back fine. Anyone else feel this way? Do people end up in nursing homes just for having fibromyalgia? My whole body aches. My body whole body tingles and burns and my joints throb and I get sharp random shooting pain in my arms and legs. The few people I’ve met in person seem to have localized fibromyalgia in trigger points. They have said their Fibro pain is not as extensive as mine. I want to know the truth even if it’s bad. During a 7 day period, I have flares at least 4 days. Maybe not in a row. It’s worse in the winter, I think. I’m in whole body pain every day which is about a 4 (0-10). On flare days it’s easily a 9. Freedom
I’m so sorry you are going through this. Please try not to be anxious over the future - Stressing over things can also make FMS worse I know that is easier said than done, as I struggle with anxiety on a daily basis.
As far as the cold temps - My fibro and arthritis are flaring, as well. Are you sure that you don’t also have arthritis in your joints? Has your doctor run x-rays to look for arthritis? The pain from arthritis and other conditions can be magnified by the FMS, unfortunately. I do not know if FMS gets worse in time, but I know that my arthritis is spreading, which makes my FMS pain worsen, as well. Fortunately, my pain management doctor can give me injections to help block pain caused by arthritis and sciatica.
At 53 yrs old, you are still young, my friend! Do you have a good doctor, that you trust, that you can go to with your questions about FMS?
I will have you in my prayers. Here is a Bible verse for you from Matthew 6:34 (NLT): So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.
I have a verse from Joshua 1:9 here on my desk: Be strong & courageous, Do not be afraid; Do not be discouraged for the Lord, your God will be with you wherever you go.
Sending tons of hugs, dear friend!
I can so relate to this! I will get the localized “hot spots” at times too. But the greater part of the time I deal with just what you describe. I often describe it as having a bad case of the flu all the time, except you are not throwing up and don’t have a fever. I don’t know if Fibro can get worse over time or not, but I know I can’t do today what I could even a year ago. And at 46 that is frustrating!