I have had to change my whole life, how I function and learn to be happy with what I can do with each day. I used to do everything and more, if there was something I wanted done, it got done! I have a special needs child, drove to the school everyday and back, it was an hour each way. And still had to drop off and pick other two children who were in 2 different schools.
I have my all encompassing calendar on the wall next to my toilet seat, that's the one place I know I will go everyday. I still keep track of everything and everyone with it. I have a mini fridge in my bedroom so I can always eat. On days I can't walk I would lay in bed and starve. I don't have hangers anymore, it hurt too much to put clothes on them and look for clothes etc...Now I have shelves with light weight baskets, each one has all of my shirts, pants, etc...My husband in the last year has started to bring me breakfast every morning so I can have it at the same time daily, I take my meds the same time. I get up at the same time. Also now that I can get some sleep I go to bed about the same time. If I don't take my meds I will stay up all night and not really notice unless I Iook at the clock. I have to make daily goals based on how I feel, so the more pressing things get done. I have changed the way I eat drastically, not eating anything that will inflame my blood. That has cut out so much of the pain for me. Some days, I feel almost normal pain wise. I plan better, the house has to be organized and everyone has to follow it because I can't pick up the slack anymore. I have my top blanket on my bed and we sleep on top of that with another blanket over us, so in the morning the other blanket can be folded and put away. Then we just straighten the blanket we laid on. Put on the pillows, only the ones needed. I don't do the million pretty pillow thing anymore. Just what we use at night and bed is made. I have a very light weight vaccum. I use a chair to vaccum, it's light and it's an old office chair. I keep face cleaning packets in my toilet area on a close shelf so I can wash my face, in case I'm in too much pain to go to the sink. I also have toothbrush sets that don't need water to brush your teeth with, again in case I am not able to go to the sink. I have hand sanitizers by my bed. I have baby type wipes to use if I need to get clean and I can't stand long enough for a shower or have the strength for a bath, these are also by the facial wash wipes. My husband is very close to finishing a walk-in shower for me. It has a bench and everything will be in arms reach including bars on the walls so I can have something to hang on to when I stand up or sit down. My purse is hung up close to my bed, I have a reclining chair so I can rest without having to be in bed, does a lot for me mentally. I don't like being in bed all day. I use febreeze for the blankets and pillows daily. If I am in the kitchen I use my barstools to do dishes or wash sink. Or clean the kitchen. My family knows that if I need someone to take something from point A to point B, they understand that they are my legs. I can't run around the house anymore. I read the book "Figuring out Fibromyalgia" and also do gentle excercise almost daily now. Before without any sleep I couldn't do anything, just sit and hurt. Now if I get 3 or 4 hours of rem sleep then I feel better and can actually do things. I hope this helps!
I’ve never thought of it this way before, but this makes total sense. I to am an overseer, own my own flower shop, have a really big wedding and event business that I do most if the work myself. It’s not unusual to have 3 to 5 events a weekend during wedding season. After a crazy Saturday, I find that I’m pretty much out of commission on Sunday and Monday. Sunday I pretty much lay around and then by Monday, I’m starting to recover. I believe mine started 2 years ago at Valentines day when I had phenmonia and then last year I had Mono and Parvovirus. I worked through both and never really stopped. Now it appears I have Fibro and an autoimmune disease, probably Lupus, but no firm diagnoses yet, just on the meds for it. I feel for everyone who is in such pain. My pain with Fibro is not so bad normally. Yesterday I hung 600 balloons for an event and then had to attend the event and by the time I got home at midnight, my entire body hurt so bad I didn’t think id be able to lay in the bed!
Definitely still an overdoer, just can't (or wont, not sure) accept my limits! I just feel like I'm inconveniencing everyone in my life, not because they say so or feel that way, but as long as I can work and reach my goals I'll keep on going and not make everyone around me "take care" of me!!! As I dont have kids myself (not sure I'll be able to handle it right now) I take my hat off to all the parents out there living with fibro, you are all amazing!!!
I was definitely a Type A personality. I had to be the best at everything I did. Even if there was none, I made a competition out of everything I did when others were involved. My chemistry lab team was the best, my physics lab team was the best, I was chosen to come back to do Science Day Camps at The Univ. of Miami, et.al. There are many more examples of winning grants to study in other states while getting 2 masters. I was 1 class away from a 3rd, but I was ready to get my pilot’s license, and I did after I turned the flight instructor and owner of the plane into the FAA. I discovered they weren’t following proper procedure. I didn’t see the sense in paying to take a written course when I could read and take the test. Oh, the instructor and plane owner were gone the next day. I found a new one and borrowed a plane.
So, yes, I was a bit hyper. Btw, I got my license while teaching full time and sick a lot. I was always at a university doing chemistry or physics. I won more grants for the school than anyone. The $$$ I made paid for my masters degrees and first two computers. I had all type of equipment for my classroom. Unfortunately, A LOT of my peers were jealous. I was a target. But, my gosh I never stopped until I was done. Then I crashed. That would be bad.
Now, my boyfriend, who is my basic caregiver gets me out on Sundays. I try to get really dolled up. I got two random compliments today. However, today, I gave out in <3 hours. I was almost falling in the store. He practically carried me out. Now, I’m in bed using my pain pills. I can’t do anything anymore. I’m disabled with many chronic illnesses. I’m spent…
Oh missy, you have really been through it! I hope things can turn around for you now, it's certainly time! Hope that you are soon able to take care of you, you deserve that!
I don't have any answers, but I do have a big hug for you and I am very glad to hear from you again!
I think we can all learn something from your earned practices and philosophies, Rain!
Between the fibro and arthritis, I just never know how I'm going to feel, so I still tend to overdo, when I finally can do! It really does take practice to slow down, but to live consistantly seems elusive!
Oh sarah2, I have seen Lyme disease first hand in a strong, handsome cousin of mine. It was a long hard fight, but he seems pretty well at present! It's a monster to fight, hope you are progressing for the better!
Wow, we have so very much to learn from you! I have up and down days, and when well, try to thin things out, getting rid of things that are not needed or used. So many people's things live here, and I'm letting go. My Mom lives with us, the grandkids come to stay, so I have clothes, shoes, boots, coats, toys for them. It's not stacked up, well the attic is, but I'm thinking of having the granddaughters have a yard sale of excess Christmas decorations, well, all kinds of decorations, just excess, they can have at least half of the money, maybe more. We have things that were his parent's, my late brother and grandmothers, and it's taken years to thin that stuff out, but it's still not finished. What EVER gets finished? When someone admires something, it's not unusual that I just give it to them, then and there!
Sounds like you have a good husband, that's a big part of the battle won!
Take good care, so glad you contributed so much to this!
I have always admired this kind of work done well, we nearly bought a flower shop at one point, but it's just as well it did not happen, as I would not have been able to keep up! It sounds like you are still holding up, however, it sounds like you need a faithful assistant or 10!!
It really does make sense, I have read so many profiles, so many postings, and we nearly all tell the same story, that of an 'overdoer'!
Sounds like you got hit hard all at once, hope you can take better care of yourself!
tricky, I'm just amazed! What a super star you are! I knew you were accomplished, but this has blown me away! In spite of how you feel now, you're still getting 'dolled up'! My husband doesn't know me 'dolled up' anymore, but he surely notices when I make any small effort.
I hope that things can turn for you soon, you have so very much to offer the world, and have given more than I could hope for! I think my biggest accomplishment is being a very good grandmother, but there are so many of them, especially here!
Thanks SK. He does so much for me. It’s the least I can do for him. He sees me in my gown tail all week. I think what happened today is that I washed my hair. I usually do that on Saturday so it won’t tire me out. Oops! Now, I’m hurting all over.
Hope you are okay SK. I could not do what you guys do. I appreciate you.
With only being diagnosed a little over a week ago, I'm still in the learning process. I think I'm second guessing myself because now that I know I have this is it a mental game or am I more in tune to the pain I have. I definitely haven't slowed down yet. Cleaned the house yesterday and could barely walk last night. However, I think after discussing this sight with my husband, he is finally tuning into my pain. That is good ;-) I'm just not ready to give up. Not ready to realize that I have something that can be so cruel to my body. If I could go before I was diagnosed, why can't I after!
Hi D . . . you've just been diagnosed so it's perfectly normal to be asking the questions you're asking and feeling the things you're feeling.
The diagnosis does not define you as a person and it never will. You know who you are. However, it is a warning shot off the port bough, giving you a heads up that there may be things that need to change in degrees to prevent these symptoms from becoming worse.
I've had Fibro for nearly 30 years. I was in denial for a long time, and refused to make the changes that were so vital to keep a modicum of management over the pain and progression.
I would suggest doing the research and as all the questions you have. Find ways to de stress whatever it is that is and/or will exacerbate the symptoms to manage the progression. It can come as quite a shock when you first find out and what you're experiencing is a normal knee jerk reaction to this. There's a discussion here on explaining the kinds of grief processes we go through after diagnosis. It's a good discussion if you want to participate.
There's lots of good discussions here. Definitely include your hubby because this effects both of you and it's important that you stick together. "Through sickness and health". This is a real test of love and commitment.
Prayers that you will find what you need to manage this. :)
SK, Yes, like I said, I'm by no means perfect at this. Far from it. I also have osteo arthritis and I'm really sorry you suffer with both.
There is no consistency with these diseases. It is not that we don't want to be consistent, but fibro is constantly morphing and changing, which of course is that elusiveness we experience.
It's why we live our lives, sometimes, from minute to minute, hour to hour, etc. We can feel fine one minute and the next we're down.
Slowing down has allowed me to track it somewhat, but I don't trust that from day to day, I can do the same thing and get the same result. I could seemingly do all the right things one day and the next, it feels like I did all the wrong things lol! I just try and find a baseline way of management, which, for me, requires ignoring those energy surges I get to clean the entire neighborhood ;)
I think the book is called "Blown Through Life Sideways". Sounds very familiar ;)
Good for you Rattled! No one knows your body better then you do. I get that kind of "junk" all the time from friends who think they're helping me. "You gotta get out more, participate in life more, be more active!" It's as if they think I never had a real life and that I miss doing all those things.
I'm not willing to get even sicker and wind up on a gurney just to prove to someone else I'm really not able to function out in the world the way I used to. If I say I need to stay home and rest, then that's what I do.
My world has gotten very small, but it needs to be that way and you're so right, we don't need to make excuses or got into detail regarding what we do or don't do. You really find out who your friends are around being in chronic pain.