I haven’t posted in a very long time; maybe because I’ve had Fibromyalgia so long I’m used to it, or maybe bc I just tried to keep it all inside.
But today, today, I need someone to remind me that better days are ahead. Today, the pain, fatigue, depression are bigger than me. I hurt so bad in every muscle, joint, even my face (my upper body had it the worse). I want to just either sit here on the recliner or go back to bed and cover my head. But, I can’t…
You see, we are guardians of our 8 yr old granddaughter who has cerebral palsy, seizure disorder, dysphasia, developmental delays, vision problems… She needs help getting on and off the toilet, getting dressed and with grooming. She also wants a lot of attention. My oldest daughter just had a baby and asked me to take her and the baby to his first Dr appt.
I’m not up to doing any of these things, yet am expected to do so. So, here I sit… feeling my frustration and anxiety building, which doesn’t help the pain…
Hello Willow, I am Annette one of the moderators on the site I know how difficult i is when you are ill and having to care for someone with special needs I have a Downs Syndrome son and I was ill over the weekend and could not care for him the way I usually do certainly he is not as disabled as your little granddaughter you did not mention if you have a partner who can maybe give you a bit of a rest by taking over for a while,I would have a chat with your GP he could maybe arrange for carers or nurses to come in daily and give you time to have a bit of a rest ,as far as your elder daughter you have to learn to say no I am sure there is someone else that can help.you enquire and take any help you can get you cannot keep doing all this on your own.Hope you feel better soon come on here and talk to me anytime. Annette.
Hi, Willow. I am new to this site, but not new to fibromyalgia pain. I had a really bad flair over the last 3 days, but am better today. Try to remember the “better” days you have had and know that you will have a better day ahead. Maybe not a pain-free day (I never have those, and it sounds like you don’t either), but a BETTER day. Saying prayers for you, Willow.
Annette had such wonderful advice for you. I hope it helps to know that we DO hear you and you are not alone.
I don’t have anything to add, but really hope you will feel better soon and that you can get some help in dealing with your situation. Thinking of you!
Its easy for those around you to forget that we have limits…in our hearts we want to be those people who help everyone else…but that is not our reality. Great advice to see if the dr can get you some help…
Willow, I think we all hear you and will try to understand. I have had Fibro for almost 32 years. I don’t have the care of another now but did before my husband passed away from Alzheimers. If possible, try to find some kind of in-person support group. Often you will find names and suggestions for help that others are using. Help from your church, Dr. etc. Good advise from Annette. People on this site are hear to listen, at most, and maybe offer good suggestions at least. Be kind to yourself, lower overall expectations…and know you are not alone.
I don’t post bc I am too depressed but your post really made me think about how self centered I have become. My heart and prayers go out to you!!! I wish I could give you a but of do anything to help. I hear you took are not alone. What a loving kind and giving lady you are. I am also praying for your little grand daughter. You are loved.
All who have Fibromyalgia suffer in many ways, but you have so much more to deal with than that. The first step to getting help is to say you need it, which you just did. Let all your family and friends know you need help. Look in your community for agencies and groups that might give some assistance. Ask your granddaughter’s doctor for suggestions. Don’t give up. You’re on the right path, you should be proud of what you’ve been able to do up until now. You are a good woman!
H ello and thank you Spunky good advice from you too to Willow sorry to hear that your husband has passed on mine has too and it is not easy but we get the strength and it is great what a few words of support from people who understand can do hope you are well. Annette
Willow , as this day comes to a close and you are preparing mentally for the next , take a few minutes to give yourself a gentle hug . I kno for myself if I get stressed or too emotional it makes my overall pain worse. Practicing self care and knowing our limits is also equally important for us to play the vital role of Mom, wife , family member, employee and so on . If I don’t pace myself it’s harder to imagine being in this for the long haul . Finding someone who can help out with even the little things like to cook a meal or load of wash or a plan B person on your flair days that can help ease some of your daily load so you are able to focus on your self care and get yourself back to the daily grind as quickly as possible . Feel better , take care , gentle hugs
Do you let your family and friends know exactly what you go through on a day to day basis? It sounds like you are over extending yourself and when we have one good day, we over do it and pay for it in days. It’s imperative that we all have boundaries with everyone because in the end, we are the ones who pay the price. Let me know anytime you need someone to vent to, cry to, or just someone to listen!! Gentle Hugs
Hi Gramybear,
Thank you for your kind words. I have told me family and for the most part, they are responsive and understanding. However, they all have their own lives and when it’s particularly bad for me, they are unable to help. We own a small business which requires my husband to work M-Sat afternoon. We have an employee who is capable to caring for the store should he be needed at home. But it nearly takes an act of congress for him to decide to stay and help. I have to have a fever and look sick before he gets it.
I have asked for help with our granddaughter through her Drs but her insurance wouldn’t cover it bc it didn’t appear that she medically qualified even
though she has CP, seizure disorder, vision problems, dysphasia… and in a wheel chair I honest to God do not know where else to turn. What I do know is that I am 60 yrs old, caring for a handicapped 8 yr old, and I am tired, just bone weary. Sometimes I have to let the pain and fatigue come out in words that my husband no longer cares to hear. So, thank you for listening everyone, and caring. (((((Soft hugs)))))
You are going through far too much on your own. Your granddaughter does not medially qualify? I don’t understand that at all. If you would like me to see what I can find out for you, let me know in what area to research in regard to getting you the help you desperately need! When I start something, I don’t give up until there is absolutely no where else to turn!! I would be more than happy to try and find out for you if there is SOMEONE who can help you. Gentle Hugs.
you titled this Needing Someone to Hear Me. – on the surface my idea sounds crazy. Thats why I don’t tell anyone. But i am 76. My oldest daughter died at 33, my youngest has an obese husband with sleep apnea, and 18 and 20 year old boys both working but living at home, and she works 4 days a week, 14 hours each day with teens on their way to prison. I have had a teddy bear of some kind every since I was 3. I am now 76. I have a very large, almost 4 feet tall brown teddy bear with a tail. I set him on a living room chair. I tell HIM how much I hurt. When I pray to God, I ask the bear to pray with me. I realize he is just a stuffed animal, but my family cannot help me and i live in senior apts. where Everyone as cancer, or diabetes, or some terrible thing they deal with so THEY dont want to hear my pain stories. The bear never interrupts me !! lol – and somehow it gives me comfort and strength just to say the words out loud and it helps me get through the day. For me, my bear is more helpful than Lyrica or the side effects i get from Rx’s.
Carolyn, I hear you and am so sorry to hear of your family’s tragic losses. The pain we experience from losses causes the physical pain to be even worse. Praying does help and I do that quite often during the day. And I look forward to the promise made in Revelation 21:4
