I suffer from severe Fibromyalgia as well as a number of other disorders (Bipolar, psoriasis, hypothyroidism, TSPK, IBS, GERD, TMJ, cervical spondylosis with herniated disk, chronic migraines..). They all add to my FM and increasing stress. The bipolar and fibro feed each other. It's a horrible cycle! I am a single mother of two girls, 17 and 11. I've been sick for 10 years so my youngest doesn't even know who I used to be. I was telling her of when I played tag with her older sister. She said, "YOU played tag???" That deeply saddened me. I carry so much guilt of not being able to do what other moms can do...even simple things, like cooking home cooked meals every night! I would love to spend my days cleaning our home but am in so much pain and fatigued I can barely manage personal hygiene. I worry about my girls. They hug me gently. They do get frustrated even though they try to understand. It's not fair to them to have a mother like me. If it weren't for my oldest idk what I'd do!! She has had a lot on her the past few years. I feel so useless! God does bless me with short remissions and I make the most of them, but then it's CRASH!!! I feel alone. Any pointers?? Please help!!
Hello, melissa and welcome. You are among friends here.
I'm sorry you're going through this with two daughters. Ask the older one to tell the younger what you were like before FM, how you could run, play, cook etc. Can you manage group cooking for meals? One daughter helps cook, the other handles clean up. Or gather everything on Saturday or Sunday for cooking during the week. Simple, good recipies can be found all over the web. Some of my faves are cooked in one pan, easy on clean-up. and very easy to adapt to your taste, food allergies, etc.
Can you get a friend to help you out one day a week? Your older girl might need some respite, I can only imagine imagine how she is trying to help. Let her know how much you appreciate her help.
You have a lot going on, and I hope your docs are taking with each other. I've heard of cases where one med adversely affects another because Doc 12 didn't know what Doc 2 has prescribed. DO make sure your meds are compatible, even if that means spending extra tike with a doc, NP, PA or pharmacist.
There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to your girls and other people what it's like to be in your body.
Have your doc check you for Vitamin D deficiency, too. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.
Hello Katmandulou! Thank you so much for replying and for you tips! I will try those. I love my crock pot too but I forget about it sometimes. As far as my meds, I only see the one physician. She is my family doc and continued me on the bipolar meds my psychiatrist had me on. It was so hard making the drive to see him that I missed too many appointments (I think 2 in less than 24 hour notice) It is horrible that psychiatrists will not accept medicare patients! That is WHY I am disabled! because I have bipolar and yet I cannot find a physician to see me because I have to be on Medicare if I am disabled! It makes absolutely no sense! I have digressed.. I have never heard of the Spoon Theory so I'll definitely check that out. I am Vitamin D deficient and take a supplement everyday. Have a great day!!
Take each day as it presents itself. If you have a good day DON'T try to get everything done! Go slow, do what you can. If the next day is a good day too, go slow and do what you can. Rest when you need it. Save up energy stores for what's important - you and your girls.
I have an electric skillet I use often, and forgot that crock pots have become popular again. DH is an awesome, cook, and took over the kitchen when I had my last bout of lower back problems. I'm not ready to do it all yet, but someday"026
It sounds like you are having a particularly hard time of it right now. I'm so glad that you have come here to find some answers. There are so many ways that our lives change with fibro. And of course, the fibro and bipolar feed each other. You mental and physical health are so interdependent.
Please try to accept that you are the best mother you know how to be. Do you love your girls? Do you spend as much time with them as your conditions allow? Do you fix the best meals you can within your limits? I bet you answered yes to all of those questions.
Believe me, your daughters know that they are loved. If you have been following this site for a while, you know that my younger son is schizophrenic. Believe me, there are a lot of "what ifs" on my part. Years ago, I mentioned all the things I couldn't do to one of his teachers. She looked at me in astonishment and said, "Anyone can see that you son is loved. It radiates from him. He is the most loved child I have ever seen! What more could you give him?" What a wonderful thing to hear! (That particular teacher went on to become a school psychologist. We are still friends.)
Do what you can. Do the most important things first. Do not worry about the rest. Please conserve enough energy for the time you spend with your daughters. They don't need your cooking or cleaning anywhere near as much as they need you.
There are so many things we cannot do. Dwelling on them is a trap. Try to be happy about the things you do do. Take as good care of yourself as you can. It sounds like you have a caring doctor. This is great. Specialists often help to diagnose us, but it is the family physician who sees us for everything. Consider yourself blessed.
Bette, what an encouraging post! I finally learned to not dwell on the things I cannot do anymore. (was beginning to learn to play the piano and guitar when I started having fibro symptoms.) I was so disappointed that I couldn't continue the hobbies, especially as my husband had left me before the fibro. I now just try to focus on the little things I can do and spending time with my grandbaby. She turns 3 on the 13th, and sometimes I think the fibro happened so that I could stay home and spend more time with her.
Those of you with grandchildren make me so jealous. My younger son (the one who is mentally ill--but has a lot of sense) had a vasectomy as a present to himself when he turned 18. My older son--for reasons known only to him--has only started dating in the past 14 months or so. He'll be 43 this Wednesday, owns his own home, has a steady job with state benefits, and is one of the nicest people on earth. (Even if I am his mother.) So far he's had 3 different girlfriends, and all of them have children, so we'll probably have instant grandchildren someday. And that's O.K., too.
I know what you mean about not doing your hobbies anymore. When I was in my teens and 20's, I roller skated 3 times a week. It's where I met my husband, where my sister met her husband, and how I got my exercise. (You wouldn't believe how heavy those skates are--or how great my legs used to be.) Every few years, I'd go skating, but my family never wanted to come along. At 70 and with a hip replacement, it has a little less charm to it.
You're right about those in the deep South not being ready for cold, winter weather. (Most of us here in W NY are really thrown by the 2 weeks or so of hot, humid, insufferable weather we get most Julys.) I'm sure that if you got an inch of snow on the roads, the city would come to a standstill. Our township has every road plowed before the first schoolbus rolls through. Here on the farm, we have 2 backhoes with front end loaders and a bulldozer, so our driveway can always be managed.
I am constantly amazed by how people with such different lives are united by this thing we call fibromyalgia. It reminds us that we are all so very much alike deep down. We all have the desire to do the best for our families. We all have the same problems dealing with our healthcare system. Many of us have had to deal with the joys of obtaining SSDI. We do what we can to work as long as we can, but there are limits. I'm sure that Nancy and Cory will agree. Those that still work do it by making their wellness a second job. Those of us who cannot work find that our incomes are drastically reduced and that we miss the satisfaction of doing a job and doing it well. It is a catch 22 situation.
One other thing you will find: this is the place where good people try to help other good people deal with the unique challenges of fibromyalgia.
Bette...I just love your writing ! What a great piece. I can remember it being so hard to even drive to work with the pain I was having, but always knowing when I got there it would get better with the distraction of patients and issues. On returning from work it would return and at times not be able to walk from the car. I used each move as a stretch and exercise. Always thinking how to do it for the best of my body. I continued to push and it is so much better now. So I am glad i am high functioning and didn't have to give in to the devil of a problem. You nailed it too, that we are good people trying to help other good people survive through this. It won't kill you but it can steal alot from you if you let it. Fighting is so important. Moving is so important. Good post! Nancy B
I'm sure your are innundated with advice for your SSDI hearing. Please try to bear with me if I add to the long list of do's and don't's.
Bring your meds along to the hearing. If you have kept the vials from some of the ones that you no longer use, bring them along in a separate plastic bag. All those medications are evidence that you have done everything possible to get better for a long time.
Go to your hearing clean and neat, but don't get all dolled up either. Wear comfortable clothes. Don't use makeup unless you normally use it every day. Don't exaggerate your pain and fatigue, but don't try to "tough it out" either. Just show the real you the way you feel on that day.
My judge saw the 10 trips I made to the ladies room while I was waiting for my hearing. She saw me pacing and trying to find a comfortable position. (I was the first case of the day. This normal-looking middle aged woman was doing some paperwork in a room with the door open. She was my judge! She couldn't believe that I hadn't been approved long ago). So relax. This is not an us-versus-them situation. You will have an impartial judge--not some Social Security bureaucrat making the decision.
Thanks for the advice, Bette. I hadn't thought about the meds, yes, that's a great idea. I still have a couple of prescriptions that didn't work. I'm worse off physically now than when I first applied, and Allsup has agreed to represent me, so I'm hoping and praying for a quick hearing and an approval.
just able to read kind of 'skim' lately. dont know why--I hope things seem easier for you (beginner of thread)
this is my first day home alone since before christmas--lots of guests and then finally ended with family for football last night.
I saw a photo recently of the snow we had in our home town in 78 and thought-wow i walked through that for blocks to get a ride to work from my dad who met me at a plowed road. It was about chest high.
That was something I could do before fibro. although--I think I had some fibro type thing when I was a kid too.
Anyhow-- don't don't don't want any snow here now. (SC) brr. Got my old 'fargo coat' on this evening to take my jeep to my daughter as hers is dying a slow painful death I think. Hubby worked on over the weekend but every time one thing is fixed another engine light comes on.
Anyhow-- there are good days and bad days for all of us, and over the years, we probably do a lot more than we think we do. The situation our children are born into--that's really in my mind, up to God more than anything--He knows his purposes.
I know my Gramma's mom died when she was 3 leaving her with twin younger bros. I don't know how she died-but I've always thought probably child birth. Anyhow-- a hard life for a young person is not the worst thing that can happen. We all need to get a better perspective I think on what life is about.
Thanks so much for posting. This has created a great "thread" on the site. I think as moms we are always so focused on our failures and what our limitations are going to do to our children -- whether we are sick or not. And if we ARE sick, it only magnifies this tendency.
I have 2 kids also -- 10 and 7 -- and I actually have the opposite problem. My oldest has been witness through my battles with Major Depression & Anxiety and now Fibro, and now that I am -- for now -- starting to feel a little better, it's my youngest that will benefit from having more of me available for more of her life. My youngest was the one who was there during the "dark years" and will get less "light." What has this done to him? I fear it. It keeps me up at night, honestly.
Some of the best advice I've received about Fibro, illness, disability is focus on what you CAN do and not what you CAN'T. I think this is good advice for mothering/parenting with Fibro, too. I am working on trying to live it.