Thursday, March 30, 2017
There is a term called "Fibro Guilt" that I'll bet every single person that has Fibromyalgia can immediately identify with and that most of us who have this debilitating disease have shed tears over. I think all people who live with "invisible illnesses" like Fibromyalgia, Chronic Fatigue, Lupus, IBS, Rheumatoid Arthritis and other autoimmune diseases that have had their lives so dramatically altered suffer from frustration, anger, and lots of guilt. We feel guilty for not being able to do the things we used to do. We are not able to be there for our friends and family all the time and have to bow out of events and plans when the pain and exhaustion get to be too much for us, many times at the last minute. If we are still able to work outside the home, we feel like we are not giving 100% to our job and that our coworkers are having to pick up the slack when we cannot get it all done. If we are no longer able to work outside the home, we feel guilt for not contributing financially to our family. And speaking of family, we are frequently not able to be the same parent or spouse that we used to be and that leads to huge amounts of guilt on our parts. Today was one of those days that the "Fibro Guilt" hit me hard and left me in tears crying while my husband gently held me in his arms.
I have been having a bad flare that is going into it's second week now. Between my Fibromyalgia and my Chronic Fatigue Syndrome, I have been in lots of pain (to the point of wanting to throw up) and have been getting very little sleep, although that is exactly what my body needs to heal. Within the previous 2 nights, I had gotten a total of 6 hours of sleep and that is with the "help" of sleeping and pain medications. Tuesday I managed to go to work for 2 1/2 hours for the MOPS program after only getting 2 hours of sleep the night before. Laurie and I had 15 kids to watch between us ranging from babies to 5 year olds. The other person who was supposed to come in and help cancelled at the last minute. We both were going full bore the entire time. After we were done, I stopped to pick up a few groceries, grabbed some lunch to bring home and then collapsed on the couch once I made it home unable to move much at all. I dozed off for about 20 minutes. Tuesday night our Heather got ahold of me telling me that she was not feeling well, was in pain and wondered if I could watch the boys if she had to go to the doctor the next day. We had already planned for me to go over the next morning to help her homeschool the boys, but now she was not sure she would be able to do that. I told her to let me know Wednesday morning how she was doing and what she needed me to do. I was really worried about her. I got a call Wednesday morning and Heather was not doing well at all. My son Chris asked me if I could come over and watch the boys so I got myself ready and out the door. By the time I got there, I could see that my Heather was in lots of pain. They headed out and it was just the boys and I with me not having had my coffee yet. Heather, even with being in pain, had made me a pot of coffee because she is just amazing like that.
Bradley and Isaiah were so sweet and so excited to have me there with them. They both gave me big hugs...and it hurt, bad. 😢 I came close to crying but I was so afraid that if I did cry, the boys would feel awful for "hurting me" even though it would not be their fault at all. I told them I loved them but we had to be gentle with Grammie. Since my body was aching and so was my head, I took some ibuprofen while I sipped on my coffee and had the boys play hide and seek with me. They hid, Grammie seeked. It gave me a chance to drink my coffee and to have the pain meds take effect. We then sat down to ready some books together. They cuddled in on either side of me and when one of them leaned in too fast against me, it hurt, bad. 😧 I had to tell them again to be gentle with Grammie, because my body was hurting. While we sat there reading together, I kept telling myself to focus on those two amazing little guys that I loved with all my heart and being able to spend special time with them and not on how bad I was hurting. We then found other activities to do like seeing what kind of metal magnets stuck to (Science), where the kids in the Lego magazine were from on the map in the school room (Geography), and Bradley got out his reading book and he read to me (Reading). We had lunch and watched some Lego episodes on Netflix. After that we built with Legos. Yes there is a theme here with Legos. I poured every bit of energy and strength I had into my grandsons for the 4 1/2 hours that I was there while Heather had her doctor's appointment and had some tests done at the hospital. Once I got home, I was done...like exhausted, hard to keep my eyes open, but not being able to sleep and my sciatic nerve decided to just act up too to add insult to injury so to speak. I heated up some soup for our dinner and then burst into tears.
Everything came pouring out of me...how I felt guilty for having to tell the little boys that they could not hug Grammie tightly because it hurt me and that they had to be very gentle when cuddling with me. I never want my grandsons to be afraid of hurting me. I felt guilty that I was so exhausted and an emotional wreck. I felt guilty because I can not contribute financially to our household like I used to. I felt guilty because my husband has to pick up the slack do lots of the things that I used to be able to do. I felt guilty that all the financial burdens are now on my husband. I felt guilty for not being the wife to him that I once was. I felt guilty for costs of all my supplements that I need to take and for all the medical expenses. I felt guilty because I have not had the energy to even respond to the comments from so many kind people who have commented on my past few blog posts and I feel like I am being a horrible friend. I felt guilty for all the stress I feel due to the horrible and hurtful behavior towards my husband, my kids, grandkids and myself by my husband's relatives that just makes my Fibro flares worse and that has caused this HUGE flare that I am in now. I felt guilty because I feel like I am a burden. I just felt guilty.
My sweet husband just held me while I cried and let me vent. He then gently told me that he loved me and that he was there to take care of me...that was his job. He told me I am not a burden and that I take good care of him and he appreciates that. He also told me that we are in this together and that he will do whatever I need him to do to help me through this. I calmed down and we talked some more things through, helping me to process them. But you know something...the guilt is always there and some days it's "voice" just screams at me making me feel simply awful about myself.
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I'm so sorry you're having such a bad flare-up. I can definitely relate. I deal with all the guilt too, especially guilt over not being able to do all of the things I used to do. I used to be the only one who kept the house and did all the cooking, but now the hubby has to help with things like laundry, vacuuming, and mopping and I hate it. I hate that he has to earn all the money AND help with cleaning the house. Lots and lots of guilt comes along with it. And I certainly understand guilt over not getting to comments and reading other people's blog, I feel like I'm the queen of that!! :-) Just know, I don't think you're a horrible friend and you're doing the best you can. Everyone is just trying to do the best they can. Take care of yourself because the blog and comments can wait. I really do hope you feel better Debbie, I'll keep you in my thoughts. xoxo JessicaReplyDelete
Thank you Jessica. Your sweet comments touched my heart and I am so sorry that you too are going through this. ((((((HUGS)))))Delete
So sorry to read that you are in such pain, Debbie. Your family sounds like they are very supportive, especially your husband. Feeling guilty is just part of life. You have to let it go. As for not responding to comments, I think I can speak for fellow bloggers, that we understand. Have hope that tomorrow will be better!ReplyDelete
Thank you Jane. I wish I could let the guilt go. That is something that I really do need to work on. I grew up being expected to be the "strong one", the one that took care of everyone else's needs ahead of my own. It is hard for me to let go of that kind of thinking. I think as women, it is also something of a societal expectation and we are viewed as "less than" if we practice self care. Guilt is a horrible thing. Thank you for always being one to give me "permission" to take care of myself. It really does help and I appreciate you more than you know. Be blessed.Delete
Oh my goodness, Debbie... I'm so sorry you're going through all this. I'm really glad that your husband and family are so supportive though.ReplyDelete
I understand the guilt. Not for the same reason that you do, but for a lot of things and I especially understand feeling guilty about not getting back to our blogging friends. But you know what? We'll all still be here when you feel better. You need to take care of YOU. And I really hope you feel better soon, my sweet friend.
I hope your daughter, Heather is okay too!
Thank you Rue. I really am blessed with a supportive family and an amazing husband and online friends like you. Our Heather was starting to feel better by late last night after the antibiotics started to kick in. That was a huge relief. It breaks my heart to see anyone I love hurting. Be blessed and thank you for the hugs...they are much needed and appreciated.Delete
Hugs to you. I am sorry you are dealing with such a horrible and debilitating illness. Your immediate family sound very loving and understanding.ReplyDelete
As for your husband's family, unfortunately, sometimes in life we need to cut out some relationships. My MIL could not be a part of our lives for a number of years because she was (for lack of a better word)toxic. She had her own issues to deal with but dragged everyone down with her. It is not worth your mental health and your family's peace to continue the relationship. Ultimately, you need to decide whether they are allowed to continue dragging you down. It is something we each have control over. Do not let them destroy your happiness and undoubtedly affect your health any longer.
Thank you Theresa and you are right, we need to make those tough decisions, as hard as they are. After the last stunt that was pulled my husband is just done with his family. One of them went out of their way to hurt one of our kids. I'm so sorry that you also had to deal with toxic familial relationships. They really do take a toll on us.Delete
Debbie, I feel so bad that you are experiencing such pain. I will pray that you find some relief. I can relate to the feelings that come along with not being able to do all that you would like to do because you feel physically limited and exhausted. Your husband and family sound like they are very understanding people and that is a true blessing, there are so many people who do not empathize or understand how a person with health struggles can feel like at times.ReplyDelete
Please give yourself some grace at this time and relieve yourself of the guilt. It kind of sounds like you have a lot going on and you are sweet enough to try to be there for everyone else. I think it helps to recognize that there are just times when you will have to take it easy on yourself and let some things go for another time. You are a wonderful lady who cares so much for the people you love and would do anything to make things easier for them and help them to feel their best. Please extend that care to your self right now and just take it as easy as you can. And that extends towards answering blog comments as well- I'm sure everyone understands if you do not comment. We would just like to see you feel better, my friend. ((Hugs))
I hope Heather is feeling better too.
Thank you Dawn. Our Heather is starting to feel better and that is a great relief for her and for all of us. I love her so much and hate to see her hurting. You are right that there are many people who do not understand or empathize with people who have health struggles, some of my husband's family is included in that and they can be downright hateful about it.Delete
Today I am trying to take care of me...my husband told me that he would do the pick up and deliveries for our volunteer work for both of us and I am trying to not feel guilty about not being there to help at all. I usually try to the pick ups and then stay to help for the rest of the time also. I just cannot do it today. I'm still baking the banana bread I promised for one of our college volunteers and Jeff will take it down to him. I don't want to let him down...he needs a
"taste of home" (he is from Ghana) right about now since he has been struggling with homesickness even though his family escaped a horrible situation there.
Prayers and gentle hugs to you, Debbie. I have Fibro, too. Totally understand what you're going through...only difference, you've got the loving support and I don't. Sending good thoughts your way.ReplyDelete
Judy in CA
Judy, I am so sorry you also have Fibro and don't have a loving support system. (((HUGS))) I would like to help be that for you. Praying for you my friend.Delete
Your writing is so honest, I'm just sitting here feeling your pain and I'm sorry. I was worried about you in the last few weeks. Hoping you weren't having a flare and somehow just knowing you were.ReplyDelete
I've felt the pain when people don't recognize that I have a hidden disability, CFS. They don't get or want to understand that when they see me I'm having a good day. They don't see the bad days when I'm curled up in bed or drinking gingerale because my nausea is so bad. Or, that I'm in desperate need of friends but I have to tell then I may not be able to do whatever they've just invited me to.
All this to say - I understand some of what you're going through. Not all certainly.
And for a chuckle - you're story of hide and seek made me remember something. I was visiting a friend's dad and we had a very rowdy 8yo with us. Her dad started a game of Simon Says. At one point he said to the boy "Simon says play dead'. We had absolute quiet for about 5 minutes..The adults hardly made a sound as the quiet was so welcome.hahaha.
Keeping you in may prayers. SJ
SJ, thank you for understanding and for the much needed giggle about the Simon Says game. ;) I think that is the first time I have smiled all day and boy does it feel good. I'm so glad that you and I have become friends and can relate so well to each other. Be blessed my friend!Delete
Hi Mrs. Debbie,ReplyDelete
My heart aches to know you are struggling right now. However, I also celebrate that your husband and family are supportive. I pray for our Lord's healing touch upon your body and your spirit.
Thank you so much Mrs. B. Your prayers and support are much appreciated. I hope all is well with you and that it is warming up in your part of the country. Be blessed.Delete
Please do not feel guilty! You do so much more than I do and I have no job and no illness! I notice everywhere, that people when they retire (and I know you look younger and are not at retirement age) feel they have to "give back" and volunteer. I am old-fashioned...I feel people should watch out for their health as they grow older and they need to relax more. I know so many people who have over-done it and end of falling and having broken hips etc and this only gives a greater set-back. You are amazing at what you do! Try to pamper yourself more, especially in your sufferings. Your husband is wonderful and your family all appreciates all your sacrifices. AndreaReplyDelete
Thank you Andrea...you are very sweet. I have been doing volunteer work for most of my life and it is a huge part of "who I am" as a person. I think if I had to give that up permanently I would feel so lost and totally useless thus feeling way more guilt. ;) Believe me, I have slowed way down because this illness has forced me to (and no, I don't like that at all, I am very stubborn that way). You are right though, I do tend to over-do it when I feel like I have the energy to do so. I think it is because I never know when I will be out of commision so to speak again and I don't like feeling useless when I an in a flare. I am trying to take care of myself today and have been told by my husband that I will be taking it easy through this weekend also. Thank you God for sending me such an amazing man who knows me better than I know myself at times. Be blessed my friend.Delete
I am sorry you are in such pain. I hope your flare up will cool down and you will feel better very soon. You were amazing to be able to do all that you did while in such intense pain.ReplyDelete
Thank you Susie. It has started to calm down tonight and I am praying that I can sleep well. Be blessed!Delete
Praying for you Debbie! I can certainly understand why that terrible guilt feeling plagues you, but am so thankful that your husband is so understanding and supportive! I will pray that you get a deep and restful sleep tonight, and that you are refreshed and pull out of this flare that you are in.ReplyDelete
I think you are going to have to learn to say no! Find things that you can do to volunteer where you are not so committed, but can come and help as you are able, that would take a lot of stress off of you. You need to realize your limitations, and work with them, not against them. You have so much to offer, and there will be days you can do a lot, but days you just can't. It is hard, I can't even imagine having to deal with that kind of issue, but you are a strong woman, and I think maybe you could talk it over with your husband and brainstorm ways to relieve any stress or undue responsibilities in your life.
I appreciate your friendship so much, and will plead the blood of Jesus for healing for you, and for sweet peace and rest tonight. Hugs to you my friend!
Thank you so very much. I did get better sleep last night and with the sun shining outside to brighten my mood, it has been a good day! I was relieved to be able to stay home yesterday while my husband did out volunteer work. He was able to get the pick up and deliveries done within 40 minutes. You will be proud of me, I did not feel guilt while staying home. ;) Jeff and I did talk about more ways to relieve stress and came up with some more ideas so that is good.Delete
I'm looking forward to coming and visiting your blog and getting caught up soon. Be blessed and I hope you have a wonderful weekend. :)
Just wondering if you have done any reading about the Autoimmune Protocol - I commented about it on your blog on a previous occasion. Instead of feeling guilty, you need to spend that time researching things to help heal you, like changing your diet to an anti-inflammatory one. This protocol has put my autoimmune diseases in remission. Believe me, I know what it is like to be chronically ill and how it makes you feel. Best of luck to you.
Thank you Sheila and I am researching that now and making some changes. I'm glad that you are in remission...that is wonderful!Delete
I thought I replied to this yesterday, but I must have done it on my sleep :D. Lots of gentle cyper hugs. I wish I lived closer, so I could help out with the little things - to make it easier for you to do the big things. Love ya.ReplyDelete
Awww...thank you De. :) You are so sweet. I hope you have a great weekend!Delete
Debbie, I've never commented on your blog before, but today, I just had to.ReplyDelete
I'm from Portugal and I read your blog. I'm AMAZED at the amount of work you do. Even with your health problems, you do more than me and that most of the people I know.
I hope you get some rest and PLEASE, don´t feel guilty because you're a wonderful woman and I'm surethatyour family is the first to say that. Because it's TRUE!
Have faith. Read Psalms 46:10. Trust in Him and He will do the miracles and the answers come.
God bless you and your family!
Welcome Paula and thank you for commenting on my blog. :) I guess that sometimes I forget all that I am still able to do. Believe me, I used to get so much more done than I am able to now so when I compare those different chapters in my life, there is a big difference. I am trying to learn to give myself grace. That is one of my favorite verses, thank you for reminding me. Be blessed!Delete
And another thing - I have a difficult time going and/or staying asleep when I'm in crash mode. It's so hard to explain to the people who say 'oh, just get more sleep'. If only I could!ReplyDelete
It's also so counter-intuitive. Before my CFS, I always relied on my body to indicate when I needed rest and 'allow', if you will, that rest. Not the case for me - when I'm in crash mode, it's as if I'm wound tight and my body won't release.
For all those well-intentioned people: no, I am not worried about anything.
With this disease, it's like my body is not responding normally like it did in the past.
Ok that's my rant for the day. Stepping off my soap box.
Still praying for you. SJ
HI SJ, I am the exact same way. I think you described it perfectly! I was thrilled to get 5 hours of sleep last night. ;) CFS and Fibro seem to do battle with each other and OMGoodness, there are times when I just want to pull my hair out.Delete
Today was a good day. It was sunny and I took a walk around the yard enjoying the flowers that are coming up. Jeff and I also took a drive to get his paycheck, get that deposited and then stopped by Safeway to pick up a few things.
Thank you for your prayers my friend and I hope you have a lovely weekend with no crashes. I think you should also treat yourself to a pretty bunch of daffodils. ;) Be blessed!
I know exactly how you feel. I suffered for 20 years. Couldn't hold a job, missed many things with my family. Had so much guilt. I tried all the different meds, message, chiropractor--which I have to say the chiropractor gave me the most relief but it was short lived. But last fall God decided to brings a medicine into my life--that isn't even for fibro--that changed my life. I had went to the emergency room because I could not get either of my arms to wake up and they gave me an anti-inflammatory medicine call diclofenac. I have been pain free ever since. I am not saying that this will work for you or anyone else. I am saying don't give up hope. I had almost now at 51 I can go and do more than I could at 35. I'll say a prayer that you find something that can give you relief.ReplyDelete
Good luck and God Bless,
Jeanna, I am so happy that you found something that worked for you! What a blessing! I will talk to my doctor about diclofenac the next time I go in and see if that is something that he will let me try. Be blessed!Delete