I can't drive, or walk because I can't keep my eyes open. Not because I'm tired although that makes it worse but because I've decided it seems that it's a sensory overload issue. Too much movement and my brain shuts down. This has gotten worse over the last 2 years but I just got diagnosed with FM last month. I knew something was wrong other than my anxiety disorder, manic depression and other mental diagnoses...I now wonder if it's be Fibro all along. Hum....
Thank God for my absolute trust and dependence on Him. I have all the other symptoms you all have discussed and this site has been a big encouragement for me. An explanation to lots of curious quirks I have but just thought it was just cuz I'm a quirky gal! But regardless of what the fibro brings, I just flow with it and don't feel I need to justify it to anyone or be defensive about it. It's just who I happen to be right now and if I were to wait a few minutes....that will change too HAAAA!!!
The thing about fibro is it's consistent in its inconsistency. I've learned to fly by the seat of my pants and just be happy I have a God who loves me and friends who accept me the way I am regardless. I live alone with lots of cats (yep...a crazy cat lady) and eek by on my disability payments with the help of my aging mother's ss check.
I pray for all of you sisters and brothers. It's not the curse that we so easily are tempted to make it. It's a matter of perspective and having hope in my eternal salvation.
Thanks for reading,
Sage, I do know how you feel about the sensory overload. I have it with tv, concerts, parties, etc. I can only "watch" tv by listening to it. Cannot watch and listen. Makes me so irritable and over-stimulated.
Also have felt that way driving, last night. I think it's smart of you to not drive if it's casing you too much sensory overload.
So sorry you have to go through this, I only have small flashes of this, from time to time, but know exactly what you are talking about, and would never think of driving like that, would park the car until someone could come to get me if I were out and had it happen, not that my back allows me into the car that often!
Sounds like you have a good handle on this, hard as it can be, and I commend you for that, it is hard to come to the right place in your head about some of it, at least.
We are glad to have you with us, thank you for sharing your story!
I have stopped driving because of the dizziness and numbness in my hand and foot. It is horrible not to be able to drive and to depend on someone else for every little thing but I have accepted that that is the way it is and that I just have to swallow my pride, open my mouth and ask. I have always been so independent and it is hard to ask for anything. On the plus side, I have been able to do things like work on my needlepoint, cross stitch and embroidery like I haven’t been able to in the past, although I am limited in the amount of time I can spend on it. I have never been much of a tv watcher but now I have Netflix and am watching all the shows I never knew I was missing. I can lay in bed and watch on my iPad as sitting up for a while is hard on me, as is standing for any length of time. I have found that walking a little in the morning seems to help for a little while, although I sometimes pay for it later. Tai chi is good and you can do it while sitting in a chair. Life is so sweet and this has forced me to slow down a lot! There are some positives to a slowing down a little but the weight gain is NOT one! LOL hey, I Am 48 years old and figure I have earned a few extra pounds.
Wow, walking and tai chi are exactly what my rheumy suggested! He said that gentle exercise releases things that fight the pain signals we are getting.
I'm terribly sorry that you can't drive anymore. I think that would kill me. I'm really impressed with how well you've adjusted with the changes in your life. I truly am. It takes a lot of strength to accept that things are no longer as they were and live within the new parameters.
I do well most days but I still have my days when I have a pity party and just mope around. My parents’ 50th anniversary is next month and we plan to go to Atlanta to join my family for a fun weekend. I am dreading it because I know I will get tired but I am excited to see my family- we have not all been together in over two years! My siblings have talked to my nieces and nephews and tried to explain but I can hardly explain it myself so how can I expect kids to understand. I think that two days of being with them will be worth whatever comes after! Meanwhile, I have been baking and freezing so I have treats to take with me. The kids are even getting a personalized big cookie from aunt Mary Beth. So fun!
I don't own a TV and can't even really watch sermons or my Netflix without closing my eyes...I just listen. Same thing in church and even just talking to people...I have to explain that I'm not being rude by closing my eyes, I just can't keep them open! Most of them understand that I love them and give me slack for just being different than them.
My 'get a clue' moment for quitting driving was trying to make a trip to a town 30 minutes away and I drove into a sharp curb shredding both tires on the passenger side of my wheelchair van. I live in a very small town and my parents are elderly (I'm about to be 50 sept 4th) and they had to come rescue me. I had no money to fix the van but God provided the saints to do it for me.
I drive to church and to the grocery store and my volunteer gigs that are close to home with one eye propped open with my fingers!
Thanks! Never though about doing it in a chair before. I'm also a crafty person and have been blessed with all sorts of craft supplies to play with when I can't think straight but can mindlessly paint a ceramic chicken fluorescent colors and kooky things like that...I also make disciple crosses which is another mindless but rewarding task. You guys are so wonderful! I thank God for leading me to this website!
Thanks Petunia Girl! I have gotten a great dose of humility through this, that's for sure but humility is a good thing. And my rheumy is Dr. Chou...give you a clue what he suggested I do?!! And I've already studied Tai Chi in a past time pre fibro so now I just need to find someone to brush up with.
I have experienced similar reactions but never thought it was related to fibro. A few years ago, my eyes would start closing when I was driving. I had to hit and slap myself. Sounds bad now that I’m writing this…ha!
I have issues with large crowds and noise, sunshine during certain times of the day, the noise produced by sporting events on tv (my husband loves sports) I could go on and on…
Make sure to put those on your list, Sunny!
am i the only one who has stock in post-it notes and puts them and pens in every room, my purse, the car, refrigerator and any other place I might have a thought I don't want to forget?
No - I use lists at home with. Magnet on back
At work my office is covered in sticky notes
you work?! It must be at a job that allows great flexability...I can't promise anything to anybody but what I DO promise, I do so with great forethought. I keep my word even if it means paying a price later.
I'm weird that way.
I wish I could work! I had an interview in February and could barely walk up the stairs to get to the office to interview. I didn’t get that job and I finally stopped looking about a month ago. My lawyer said I had to stop getting unemployment as I was applying for disability. So now, no income at all for me and my husband is way underemployed. He is looking for another job but jobs are scarce and we would probably have to move. Now that is an overwhelming thought!
That brain fatigue sucks. I sometimes can not remember if I took my meds so I had to get that thing that you put it in by days. Makes it easier for me but it is so frustrating. I baked some cheese straws this morning and I am about to shut down. I get a couple of hours of good time in the morning and than bam, down I go. I hate my bed!
Oh yeah, I have lists everywhere in my house. Drives my husband crazy!
I wish I could offer you words of encouragement but my experience in your situation was not pretty...but it DID work out in the end. I got disability after 6 yrs of trying and did not qualify for SSI because I earned too much money in my working years. You've got a lawyer which is the best step towards getting disability but if you have family, you will need to accept all the help they can offer and any help that anyone offers. Humble yourself and beg if you have to...look at all the resources listed on this site and follow through on every possibility however far fetched it may seem. It takes work to get help but you are going to be your own best advocate because no one else will be. Just don't give up, there is hope. And I can't stress enough that being a born again Christian and the support of the body of Christ in the church is the basis for all the support and strength I get on a second by second basis...in the lowest deepest darkest times and I have found absolute joy through all this suffering I've lived through in my 49 years...including a successful suicide...Documented by medical records I just received from the hospital that got me by ambulance DOA in Feb of 2009. I was in a coma for 4 days but obviously lived. God put me here to testify to what is possible and how to do it.
I don't know you but I have deep compassion for you and your situation, having been there myself. There IS hope.
I will be praying for you.
I was out of work 6 months on full disability then went back part time. I work 30 hours a week but due to the commute, it is a very long week.
The job’s contract ends in September so I will be unemployed unless I find something else.
My husband was laid off in January. Thank goodness he got a new job!
My doctor doesn’t think I’ll be able to work much longer, and I’m not even 40. My career went to crap due to fibromyalgia. It sucks because I enjoy getting out of the house and going to work.
A site someone referred me to is the JAN website. It gives tips on working while disabled. My employer did a number of things to modify my workspace (special keyboard , chair, etc)
This is the site I mentioned