Oh, Sheri, I hope you feel MUCH better about the fact that your house is your house and your plants are your plants, the way they are. . . do people really just think, or say that you're lazy? Nobody would volunteer to live like we do. Good luck!! God speed!! Hang on for the ride!! Have courage!!
Fibromyalgia & Gardening #2
Yes, Carrie dear, people really do think and say those things to and about us. I have been the recipient many times. Including from the medical profession and my family and friends. Thought it many times about my DH when he wouldn't do anything but refused to take anything for the pain he said was preventing him from doing anything. I mean, not even a tylenol or aspirin much less the morphine and other pain meds he was allowed to take. He later admitted he was just lazy which only helps others to lump those of us who really are in pain and lack energy and drive together. Don't get me wrong about him, in his younger healthier years he was not that bad. But as he got older the laziness/maybe fibro or something like it set in he got worse and worse. Then we found out he had hypochondriosis- iron/blood volume overload and had to donate a pint of blood(which was pitched)everytime it got over a certain level. So, the loaded question is, was he really just lazy in his later years, or was he really in pain/sick but to stubborn to take anything for it? Because if he took something and it worked, he would be expected to do something he didn't want to do. I think it became partly real pain and partly learned behavior. He had several serious health issues which ultimately lead to him going home to be with JESUS.
Oh yikes, now for THAT you get sympathy. Anyone can learn to live with pain, I think, but learning to live with derision and rejection is really hard or impossible - it hurts!
Edited my previous message. I hope you have all have less pain through your prayer.
is anybody still reading / writing here??
Me, sort of. (I don't have fibro....)
we have just been busy but I try to check in daily and respond to anything I can answer or whatever or just to say hello. I will do better.
Carrie,we have grown to love you already and can't let you go. You are welcome here, anyway you are going through something we may have to deal with someday. I was in wheelchair for a while until I started getting epidurals for back. I can barely walk today and need one to do house work from. I use a rolling desk chair to sweep and mop because back hurts standing. So you understand things we might have questions about. Not to mention Gardening from chair. Right now while building house I am not doing any planting so I have not talked about gardening much lately but that will change when house is built. I will be begging for advice and flowers. LOL.
I thought that I was in bad shape till reading all the stories here, I have minimal pain as long as I do nothing. My house hasn't been cleaned in ages, is so cluttered that I would not dare let anyone in. I do wear Fentanyl pain patches, and am working on decreasing my dose, until the VA messed up & changed pharmaceutical providers (dose for dose id not the same), so now am battling dosage issues again. this leaves me tired all the time. I was anyway with the CFS , so what's the diff. Sometimes (often really) I truly wish God would take me. Why He doesn't ,I don't know. But I do know after reading how much so many of you do even with the pain a d disability that I feel like a failure. I should be doing more...you are. I shouldn't be so "lazy"...you guys aren't. This is one of those days that I just want to turn over and go back to sleep (actually I have for 3 days now)...so now I add the guilt of not following thru on little things that I was supposed to do. it is a vicious cycle that I want off of....Maybe tomorrow will be better. Hey , don't worry bout me, not enough meds to check out and wouldn't do that, but sometimes wish I could.
BB, it sounds to me as tho you are battleing clinical depression caused by the lack of energy. Talk to your doctor about an antidepressant. Many people refuse to admit depression. Please don't be one of them. An antidepressant could make your life so much better.
Jack & I wondered too why he had to live when he was so miserable and sick. I know it taught me to be much more patient & kind. He went from being almost a genius with such wonderfully dextereous hands & 20/20 vision to being forgetful, almost totally blind, clumsy, bumbling and rambling about things that made little sense or telling such normal sounding tales about incidents that never happened. People would tell me about how he had recounted some incident in his life since I had known him and believed every word of it. It took a while to convince them he was imagining it all. It was so sad to see that happening to him. Bell's Palsy took away his ability to eat or even swallow so he was on a feeding tube in his stomach for the last week or so.
Hello everyone, I have to take antidepressants or I would have too little energy to get out of bed. Sometimes the chemicals in our brains are just not at the right levels. Various hormones etc can get out of whack and really mess you up. I know that people in my moms generation felt strongly about antidepressants being for mental patients and that was taboo. but even thyroid disease can cause your levels to be off. So the way I look at it is like a car, if it is low on gas we fill it up. If it is low on oil we fill it up. Our bodies have levels that have to be checked as well. if you are low on iron your body will get weak and so on. If you are chemically embalanced you will feel depressed. i hate it when people say well just don't think about what is depressing you. Or get over it. Not all depression is that easy. Depression is based on lack of seritonin etc and you may have to try several different meds to get the right balance but it really helps. I encourage anyone who is having depression problems to get help through their doctor but also having an understanding friend makes you feel like you are not alone in the world. That is the least a person can do. I have felt like I was alone before and it is not easy. Depression makes that harder. Goodnight and God Bless.
Thank you, Scraps. That is a good explaination. BB, there is NOTHING wrong with taking an antidepressant. You do NOT have be thinking depressing or destructive thoughts to be depressed. Sometimes the only symptoms of depression are fatigue and/or pain. And that is a chicken/egg issue. Which come first? Each case is different. If you don't get the compassion from your current doctor, find another one. Use the internet and other people to find a compassionate doctor. Not just a pill pusher. Someone who really cares about your symptoms and is interested in helping you feel better. The first med may do it, but it may take some switching around to find the right med or combination of meds to give you the relieve your symptoms. Just don't give up.
Another thing that makes us different on this forum is attitude. We are survivors. We refuse to be whipped by disabilities. Or circumstances. We will overcome. We will be positive and speak life and vitality into our lives & the lives of those round us. We will be encouraging, patient, loving, and giving. Because in giving to others we recieve what we need from GOD and others. Actually the others are just the hands, feet, and mouth, & purse of GOD. You cannot outgive GOD.
GOD bless & keep each of you.
Hello everyone, Hope you are all having a good day. I am rained in. Hurricane Fay or tropical storm fay whatever it is today is causing alot of rain. Just when we need to get the tin roof on house. It has already been one of the wettest August on record. I know the rain is good for the flowers etc. but I need a few dry days to get the roof on. I am taking a lazy day today and do not plan on doing any chores or accomplishing anything worthwhile today. My poor husband is sooo tired of working full time and building the house that he is going to rest today so I am also. I know the fibromyalgia is making me feel fatigue worse than normal but I feel the need to rest and let muscles recover. I hope you guys get a day to relax and refuel as well. Good Day and God Bless.
You do need to rest, Scraps. It has been a long hard month for you and your husband both. Don't let the fibro get the upper hand thru exhaustion.
GOD bless and keep you both.
Thanks guys for all of your love. I have appreciated it and it has meant lot.
--Birdie
I'm ba-a-a-ck! Resting is what I do best.
I've been checking in, just haven't posted anything. Just enough time to read a few. Got some sorely needed rain today...almost 2 inches!
JoAnn
JoAnn, I am glad the hear you got the rain.
I'm up to my elbows in grapes and now crabapples that taste more like Jonathans and Golden Delicious. Wonderful but very small. I'll make sauce and maybe mix some of them with grape puree for a different sauce.
GOD bless and keep each of you.
hello everyone it has been a busy week for me and I am all out of energy. I have been rounding up suppies for hubby for the house, bathtubs etc. Who knew all the different kinds. All these awesome tubs and I had to get the cheapest one, just a plain ole' single piece white fiberglass tub/shower unit. How boring in comparison to all the fancy ones available. I am Blessed to be getting a house built and have to watch budget but the imagination runs wild looking at all the choices. Just once wouldn't it be fun to go all out and buy the model just a bit higher maybe the second to cheapest.LOL. Oh well, maybe next time. I still have to go back and get toilet.Ha ha maybe I will at least get a throne of my choosing.
He is getting a pot of homemade chilli for lunch, my back hurts to bad to take it all to houseplace and serve today, they will have to come and get it. No more Mrs. nice guy around here. Just a little humor makes it all easier to take. you guys have a good weekend. God Bless.
Ha ha ha that's what I have: a throne. It's a custom box built up (and covered with whatever cheap flooring we used) so that the toilet (yes, it's a raised one) is exactly the height of my wheelchair. This makes transfers very much easier for everyone except my husband, but since he's only doing 49% of them, and he's twice as strong as anyone else, I figure it's worth the trade-off.
I know JUST what you mean - my grandmother died, and my mother sold the property she inherited and with my share of it, improved my bathroom. My dream bathroom, no Jacuzzi, no steam-sauna or built-in speakers, but, get this, I have a blue fold-down grab bar and a round mirror! I felt like quite the queen, until the flooring turned grey in one big patch. Still, it's all just for ME. A few things are maybe one notch above cheapest.
When you choose your toilet, remember that the squat down and back up is one you'll be doing many times a day for many years to come. It is SO MUCH EASIER (and cheaper) to spend an extra $100 now for a higher toilet than to put in all kinds of after-market gizmos that don't quite work to make it less painful later.
Put in studs for grab bars under the walls - even if you don't need them now, you may need them later, and if not you, the next owner might. (Town Commissioner now stepping down from ADA pedestal.) I have lots more universal design ideas - should have spoken up sooner! (Or just shut up.)
Scraps, I agree with Carrie, get the handicap height stool now. You won't believe how much easier they are to get up from and down onto. The grab bars are a good choice too as are the hidden studs just in case. Better to start using the grab bars immediately if you don't already have thems and relieve the strain on the muscles now. That will put off the absolute need for them for a while anyway. 'An ounce of prevention is worth a pound of cure' is what I heard from childhood.
I'm taking it fairly easy today. Just putting up already canned sauce and juice and finding more jars to use. I bought a doz. pint jars today at the grocery store. $8.50 I think. I think I'll advertise on my local radio station and see if I can find some for less. No none cannin/freezing jars tho unless they are free or maybe $.10 each. Which is about what I sold my good ones for. I need to pick grapes for the coworker whose family is giving me the crabapples and Friday I learned I am getting some plums too. I'll give them Braeburn apples when they are ripe. We are going to have so many B. apples as well as a nice harvest from the poor Harrellson whose main leader has been broken off 3 times. It is suppose to be a semi dwarf tree the same size as the Braeburn(about 12' - 15')but it is maybe 5' at the most. Several branches and is a wonderful apple.
GOD bless and keep each of you.
leaflady you have a birthday thread!
Carrie and leaflady I already have a high toilet now in old house. I have had few years, I love the higher one and will be sure to get new one that is higher and easier to get up from. I will also tell him about using extra studs for grab bars etc. We will be living there forever and will need them I am sure.Thanks for the advice. Send any this way. I will be happy to listen. I have learned that someone who has been there done that has good advice. When young we all laugh at good advice when we should be soaking it up and using wisely.
I feel like such a slug when I read of all the things, canning, building, cleaning, cooking....that so many of you do... I live alone and it is often all i can do to get out of bed and eat, bathe, go out onto the back deck and "force" myself to eat and enjoy nature. I have plants...(ordered last spring) , that will probably die, since I cannot get the ground dug well enough or ammended to even make planting worthwile.(we have hard red clay here in NC, that must be ammended or the plants won't survive even the 1st yr).....I think that if I did not have my beloved Evis (12 yr old min Poodle) and 2 cats to care for that I would just stay in bed and sleep all the time... I am so sick of the pain, the weakness, the loneliness... heck , I hav'nt been to church 1 service out of 5 during the last 2 weeks and have also missed my wed morning ladies bible study where I prepare the welcome cart of coffee and goodies.for the women...... I just have not been able to .
Wrecked my car tues!('07 Dodge..so am Very bummed about that too).....I'm OK, car is in shop and I have a nice '08 toyota Prius with a moon roof to drive for a week........ I .still wish that concrete light pole base had not jumped out of nowhere in an empty parking lot and hit me though!....LOL....Deductable is only $100 (thankfully), but even that is taking my major food budjet for this month.....oh well, friends, ..I think that I really.Just needed to vent......sorry, ....but at the same time......Thanks...and I do know that you do not HAve to read my entries..so.......
But we will read your posts, Birdie, and feel deeply for you. I still think you need some antidepressant. There are even herbal ones that you can try. Aromatherapy helps many people too. Please make an effort to see your doctor and try some of these alternative treatments.
I picked the grapes for the coworker who is giving me the crabapples and plums. I know there are way more c.apples than I want or need and I have no idea how many or what kind of plums there are. I have really taken it pretty easy today. No major cleaning, just vaccumed the living room and took a couple filters out to the garage to use the air compressor to blow the dust and hair out of them. Now I am half asleep and really need to go to bad.
GOD bless and keep each of you.
Go to bad or go to BED, lol.
Birdie, I take antidepressants and four or five different pain meds and still I spend most of my time in bed - it hurts too much to sit up. Know that we are reading your posts and paying attention. I am SO SORRY to hear about your car!!! My brand new 2007 van with about 6000 miles on it had a fatal collision with a moving fire hydrant in February. It was awful, and depressing.
Scraps, if it's not too late, if you think a wheelchair might be anywhere in your future, make the doorways and halls at least 36" if not 48"! I can't tell you how many times we have tried to stay somewhere - motel or whatever - and even though the toilet is high, the chair won't fit in the to the stall, or houses where the wheelchair blocks the bathroom door from closing.
And even if you don't think a wheelchair is anywhere in your future.... my husband had an OJT fall 3 years ago which actually fractured 2 vertebrae. All he ended up with is chronic back pain. A few inches either way and we could have had his'n'her wheelchairs, or no husband at all, or he could have walked away from it unscathed. All of saying is none of us knows the future, so planning now for any contingency makes sense, since you've got the house all open, right?
Google "universal design". See what you get.
I will once again echo Carrie's advice. Jack & I have lived thru this and it limited the amount of the house we could access and the amount of safety we lived with when we had to use the bathroom for any reason. Especially since his was an extra wide. I would go with the 48" and just use fancied up sheets of plywood. Our oldest DS lived in some duplexes once where every door and window was at least a 4' X 4' and of course doors were all 4' X 8'. Easier to build using sheets of plywood, wallboarding, etc. You can use all kinds of things to make those 4' X 8' sheets look nice.
Carrie, you are very wise woman. Please accept our thanks for all your wonderful tips.
Carrie, I did have to use a wheelchair for a while because back pain was so bad I could not stand for long periods of time. I did make him do 3 foot doors but I had to really fuss. I told him I would probably be in a wheelchair or scooter of some type within the next few years with the shape my back is in. I have bulging disk and herniated disk and arthritus in every joint of my back and dr. said there is no way to fix all of it. I am not sure about doors if I did them correct or not but I tried to think it through. I will take them off if necessary and hang a curtain. I am afraid to make to many demands if you know what i mean, I am so Blessed to be getting a house. If he was not a carpenter and doing it himself I know we could not afford it with all my medical bills and medicine. Do any of you feel guilty about all the money spent on that stuff. I hate it. I feel like my kids would have better things if not for my medical bills etc.
(sigh.) Been there, couldn't do it! My DH got me a button (you know, like a campaign button) that said "to boldly go where everyone else has already gone"! One last thing - make the dishwasher higher. 50's DW's are installed so you have to bend down from the sink to load it, and then bend over again to UNload it. Sadly they haven't changed most of the standard specs for kitchens and baths.
Oh man, do I EVER feel guilty!!!! My DH would be the disabled one if I weren't stealing all his sunshine. DD#1 has celiac disease, DD#2 has behavior problems, and if I were the perfect Mommy none of this would be happening, etc.
Once again Carrie is sharing her experience and wisdom. If I was remodeling or building a home I would want her phone # and email address so I could consult her on ever decision. GOD bless you for allowing GOD to work thru you.
Carrie, there is no way you are responsible for DD#1 having Celiac. I don't know how old DD#2 is but if she is over 10 or 12 she is old enough to be responsible for her own behavior and not be blaming anyone else for her bad choices. Put the monkey back on her back and stop feeling guilty. You did not choose to be unhealthy, it just happened.
You are doing very well Carrie. The best you can, I feel sure. I think you were being facetious with your "if I were the perfect Mommy" comment and do not believe that, but those words may have come out of a DD's lips and surely must have hurt. Parenting sure doesn't sound easy at all, nor with out its share of heartache. Hopefully there are some good moments amidst the turmoil that are helpful and cherished by all. I need to say that I know a 10 or 12 year old may LOOK like a person capable of being responsible for their own behavior, however those are still the ages of children, not responsible adults and they are just learning how to be responsible. Stepping off one of my soapbox's now, thank you.
(smile) you guys are the best. I'm the only one who thinks I'm not the perfect mommy - my kids worship the ground I roll on.
Leaf, a lot of this info is from being on my town's disability commission; we read architectural plans for new apt. bldgs and condo construction, each of which has different rules under the ADA. Most of us are in wheelchairs so we look at a floor plan and try to imagine could I go visit someone living in that unit?
I want to make a bumpersticker (maybe on zazzle.com?) that says DARE TO BE COMPETENT.
goodness, I get tired just reading what all you ladies do. I did something this morning tho. My daughter had a small porch and steps added to her mobile home and i asked for the old steps to put my plants on So my GS and SIL brought them up this morning and i put the plants on steps except for a couple my GS would'nt let me touch. I'm so lucky to have him here. He does so much for me. Too much sometimes.
Oh Steph you have a tin roof. How very wonderful. There is simply no sound as restful as the sound of a a gentile rain beating down on a tin roof. We wanted one so bad. but it was not to be. We do have a large screen porch tho,that is almost as good. You must be so excited. I could,nt get fancy stuff for my home either but managed to add some things later--one by one.
Birdie,I have a special (((HUG))) and special happy thought sent your way.
Chronic Depression is something i know alot about since have had it since age 30. Am 68 now. You are showing the classic symptions of going into crisis mode. Letting housework completely go No Birdie YOU are not lazy. Fighting this horrible disease is taking your energy. Yes, i can tell your're fighting or you would'nt be on this forum talking about it. Ultra tiredness.Been there! This is a to the bone drowning tiredness. No wonder you can't make yourself do things.But Birdie, listen to me, things will get better. This will not last. God will show you the light at the end of the tunnel.I promise it is there. God has not left you nor will HE. All This is caused by malfunctioned chemicals in your brain. This disease is no different than diabetis just located in a different area of your body. With diabetis your chemicals are messed up with blood sugar and certain organs. With depression your chemicals are messed up with feeling good and not feeling good instead of blood sugar working or not working. There is medicine that improves the the chemical imbalance of seratonin just like diabetis meds improves the imbalance of insulen uptake. There is help for you.
Back to the symptoms, Giving up "Wishing God would take me" Wondering why he does'nt.
You hinted you thought that pretty often. Again that is the disease caused thinking ,not you.You are a fighter.
Feeling like a failure. That is one of the most devestating symptoms of Clincal depression. At least to me.
How many good things have you done in your life? I know you can't think of a thing. Come on Birdie. Just come up with one and hang on to it. I can think of one. you are active in your church. What a blessing you are to fellow members. You've given a dog and 2 cats a home and you all have each other.You're not alone. And you've got us.
Feeling like a failure and should'nt be lazy. I garuntee(SP) none of us would be doing much if we had appendicitis or kidney stones. BOTH PAINS are the same in amount of suffering.
That leaves you going to Doctor and getting some releif. You deserve to and can feel much better. It will probably take time but it will happen.
Am i supposed to make a disclaimer here. I was an EMT But not a doctor.
Birdie you are a super sweet person. Hope you feel much better. Keep us up to date on how you feel.
Hugs,kisses, and sunflowers.
Vickie
God still has plans for you. HUH?
To all my precious and beloved friends here - I was doing the best I had in 10 years from 3/07 - 4/08. I went off of all antidepressant meds in 10/07 and remained very active: working hard in PT, walking ...working in water on fitness conditioning and strengthening and losing 25 lbs. (201 - 176 ...am 5'8"). in May the Veteran's Administration changed the pharmaceutical co that provided my pain med...the new med was not the same in efficacy (I wear a pain patch and instead of lasting 72 hrs, the new one lasts 48-60 hrs.....+ It does not adhere worth a hoot!) I had to drop out of my water exercises due to the patches coming off...the VA is like talking to the wall.... (BUT...I have a new Dr (new to the VA system also)...He is a believer and in fact knew my pastor and his wife and family closely a # of years ago. He listens, he cares and he wants to help. I am well pleased and hopeful for the 1st time in many months regarding my health care situation.
Also in May at about the same time of the pain med change, A new Psychiatrist did get me to agree to try a new antidepressant (Cymbals) more because of its positive effect on nerve pain for many people. It did not help me, nerve pain or mood wise (well I had had no signs of depression in a long time (9+months), so there really was no "mood wise" at that point to help!. Anyway....I have been off of the Cymbalta for 3 weeks. Dr ___ at the VA has educated me that this is exactly where many patients go into a severe slump due to the changes from eliminating the med and the body adjusting itself back to normal.....I have every hope that in the coming week the original (effective) pain patches will be approved, and that as my pain once again is controlled at a level where I can again become an functional & active person who is able to participate in life, that my current depressive state will lift. I strongly believe that what I am now experiencing is indeed situational depression,as opposed to chronic Major Depression & of course complicated by all of the medication issues.
This is much more info than I am really comfortable putting on line, but I feel that a # of you are very concerned for me (possibly even my safety), I also feel that I am loved by some here and wanted to give additional info to hopefully ease some of your concerns.
I do plan Pshyc. follow up....mainly to provide documentation of my state and that I am doing well (as I did for so many months) without any antidepressant meds. Over the years I have taken so many...the list would probably be about 25 different ones. A times i did well, but my system quickly goes into "poop-out", which is where the med that has worked ,& suddenly no longer does. No one has yet to provide any test result either that shows any "brain chemical imbalance" either.!
I prefer to lean heavily on the Word of God, Scriptural study and a minute by minute daily walk in touch with Him, and since that worked well for so many months ( I actually was doing better than I had in years, and I have to say that those years had me functioning on this, that or the other antidepressant.) Sooooo......I do recognize that there are some that are greatly helped by antidepressant meds, but as a retired Registered Nurse (12years in mental health)...I also believe that many who do not need to be on them are and that another large group that would have been helped by short term therapy are encouraged to continue these meds when counseling and faith would suffice. Just for me! MY 2cents worth! I am so very touched by the encouraging posts for me and many concerns and prayers ( hope they continue, too! ;-))
Thank you for the personal infomation, Birdie. Yes, many of us do care. Some of us have medical training & experience too. And I think all of us believe that GOD is on your side.
Cymbalta removed all my fibro and arthro pains but sent me in to a manic state for a few weeks. I went over 4 days & nights straight once without sleep before I quit cold turkey. I hadn't been on it but about a month or so. I thought I was losing my mind before I came down off that stuff. It turned out the depression was a spiritual battle brought on by someone bringing evil into our home without our knowledge and hiding it. When I found and destroyed it I felt like a normal person again instantly.
GOD bless and keep each of you.
Pain and depression are somehow intertwined - the more pain you are in, the more depressed you get, and the more depressed you are, the more painful you experience pain as being. I don't know how to say that in a way that makes sense!
I just wish those stupid Outside Agencies - Medicaid, Medicare, VA, whatever would realize that we are people not just dollars and cents!
OK, Birdie, we'll take you off the suicide watch list - only half kidding.
I just reread my long post and apparently I did not catch that the spell check had changed my 1st use of Cymbalta to "Cymbals"...well I think cymbals would have been much better for me than Cymbalta...........just thought I'd share a chuckle.
Thanks for the caring....and I hope I was not truly on anyones "suicide watch list", as I would not want the worry, but appreciate the concern., AND caring.
Naw, no worries . . . I don't have that much energy. LOL. I have had a few DG friends die, but none committed suicide.
Once i had to pledge to my MD that I would call him before jumping out the window. Of course I couldn't really jump at the time and we live on the ground floor!
hehehe---Carrie, you are such a cat bird and I so appreciate you!
Have a blessed day!
--Sheri