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Accepting Disorder/Illnesses Ourselves

Nov 11, 2015 12:23 PM

I guess I am afraid to accept my Fibromyalgia completely because I am afraid I will get really depressed! Don't get me wrong, I get around, do things, work--- but it is difficult and painful! But so is sitting at home!
My most recent hard thing to accept is that I now do notice the connection between doing even 15 minutes of housework vs none. Yikes! I want to be able to do housework- simple dishes or dusting- but now I am accepting that I have to really shorten and limit it. Same with too many social or fun stuff. boo!
I am really bummed with my reality.
Anyone else having problems accepting and does it get easier?

Nov 11, 2015 12:31 PM

Yes I'm with u. This time last year I was an up and coming pasrty chef for an upscale restaurant. Now I can barely walk up the street without being in tears . it's hard to accept and I'm still dealing with it day by day some days better then others. But I do understand.

Nov 11, 2015 12:44 PM

I have trouble accepting my limits, partially because they vary from day to day. I'm in school right now, and it basically means I be mildly social all day, then emotionally and physically crash at night.

I've always had pain, been awkward, shy, and seem to have issues trusting anyone.

Lately, I've been just choosing one fun thing to commit to in a week, have one day spent mostly cleaning, and do random minutes of homework in between naps, being online, research, getting ready for presentations, etc.

For me, it got harder to face my reality until I got a stable pain, and an ability to think, from lower daily pain.

A six is livable, a daily ten is barely surviving.

At this point, I'm in school, exhausted, but glad that I can walk, and occasionally talk, and even sometimes enjoy classes.

It is easier some days than others.

Like the days when I feel like life is beautiful, and I'm happy that I can touch leaves and stomp through piles of leaves, even if my feet can't feel the ground.

Then the next day, I'll feel so horrible, because the pain got triggered by a skateboard injury or being tackled in theater, and I don't want to be alive, and there are just tears, making me more dehydrated than I already am and things just get worse until I exhaust myself.

I don't really have an answer, just that life has good days occasionally, and bad days, but you never know how you'll feel, until you're in that moment

Nov 11, 2015 5:31 PM

Yes. I think it is something like grieving the life u had expected. I am struggling with this myself. But there are good things. My daughter, my wonderful boyfriend, my family.... I want a clean house but if I have to choose between a puzzle with my daughter and cleaning the kitchen then the kitchen will wait.

Nov 11, 2015 5:35 PM

It will get easier. There will still be days of depression, I won't lie. But the more ways u explore to cope with the diagnosis & your support team things will get better!! U can use many tools & workbooks to help also. The biggest thing is not going over your limits! You will hv boundaries & new limitations and you need to respect those & not over-do it. Gentle hugs :)

Nov 11, 2015 6:38 PM

Jess, yes I'm still grieving the life that I once had. Able to do and go without batting an eye. Now, I'm lucky if I can go for an hour in a vehicle without starting to hurt. I think I'm beginning to better understand my boundaries and limitations, but that doesn't make it easier to live with them right now. I used to be able to clean the entire house in several hours without a break. Now, I'm lucky if I can get through it in 3 days.

Nov 11, 2015 6:45 PM

Yes..for me we r having a fair in my town that I use to attend as a child but once I moved away and was working was never able to make it home to go. But now I am home but have fibromayalgia and have walking limitations and my family is affriad to gonwith me because of that
They have said if i went i would have to take a wheelchair. My mom has one but I don't like to use it. And I don't want to use it for the fair.so having to accept this a my life is hard to deal with.

Nov 12, 2015 7:48 AM

Jesswoo, I started having fibro symptoms in 07'-08, and every time a coworker would tell me I had fibro I'd laugh and avoid at the idea. Then as I kept getting sicker with other various pelvic symptoms, the fibro pain increased along with the fog. I was struggling to remember my work processes and physically struggling to move through the day. In July of 2010, a month after they found the pelvic mass, I was hurting so bad at work I had to be rushed to the ER. They gave me pain meds and put me out of work until surgery. Thinking I'd be back to normal after the surgery was my biggest struggle;depression #1. They removed the mass along with doing multiple surgeries in one, and told me it would take a year to recover; setback with depression #2. Fast forward a 1 3/4 yr later and not only was I not able to go to work, I had multiple new dx with surgeries, and the doc finally dx fibro (2012). I've continued to develop new problems and dx, and its overwhelming at times. But last year I realized and accepted I would never be able to return to work. And I filed for disability. This year when my rheumy doc dx & treated the sjogrens, and the endocrine doc dx & treated hypothyroidism, that's when I began to have tolerable pain. I have learned my limits, how far I can go before feeling extra pain, and how far is too far. I use to keep my house spotless clean and super organized, but not anymore.
I've learned to prioritize and take one room at a time. It exhausts me to clean the shower or tub, so when I do those I sit and rest awhile. Then I tackle the sinks and toilets. My hubby does all the mopping and I don't vacuum or sweep much. Those actions trigger headaches from my cervical discs. In the 5 years it's taken for me to truly acknowledge my illnesses and disabilities, I've also learned how far too not push myself and things that are off limits for me. In the kitchen I either sit at the table or sit on a stool at the counter to prep for cooking. Depression is a very big factor in all of our illnesses, because it's like our old lives died, and we are grieving. But just like grieving the loss of someone gets easier with time, so does our acceptance & ability to cope. Acceptance & learning your own boundaries are the key. (((Hugs))) & prayers. You can do this because you're never alone. We're all here to help each other. 🙏🌼

Nov 12, 2015 7:59 AM

@Newfibrogirl, I took my first long outing last weekend, at a crafts fair I've missed for 6-7 years. Instead of walking with my cane I used my rollator, which allowed me to sit down and rest throughout the 3 hours we were there. The crowd size only allowed slow browsing, which was good for me. By the time we made it back outside, to wait for my hubby to get the car, I was exhausted, but I really enjoyed going. I did absolutely nothing on Sunday because I overslept for church, and I took a 3 hr nap in the daytime. I've found my rollator is easier for me than the can, because it evenly dispersed my weight, so I'm not relying more in one leg over the other. Maybe you could get a rollator, if you don't have one already. I went to a store then came home and bought the same one @ Amazon for $40 less. It's pink for breast cancer awareness, which is fine with me. But what I really like about it is that not only can you adjust the handles height, you can also adjust the seat height so t that your knees are a perfect "L" bend, instead of your thighs being higher than the knees. I oppose you can go, if only for a short while. Our fair has benches, and if you're does too, you could sit on a bench to test while the family does whatever, and then you could rejoin them. Good luck & have fun! 🙏🌼

Nov 12, 2015 8:05 AM

OK, just for the record, every time I type hope this autocorrect says "oppose"... So if ever you are the word oppose in my msg then know it should say" hope". 😫 I hate autocorrect! 🙏🌼

Nov 12, 2015 9:35 AM

Jess, it's taken me almost a year to come to terms with it, but I'm finally beginning to accept and understand that things will never be the same as they were before the accident. It never gets easier to deal with but I'm just now beginning to know that I will always have limitations. It's not so much strange as it is different I know that I need to conserve energy on some days and when I feel good, then go for it. For me, house cleaning and laundry is always going to be a struggle. Before accident, it would take me several hours to get everything done. Now, I'm lucky if I can get everything done in a week or longer. Just depends on energy level. Like for today, I know that when I get home, I need to bust my ass to get done, cause I have surgery next Thursday. It's just a fact of life.

Nov 12, 2015 10:59 PM

I have had to mourn the life we had planned twice! We had kids early so we could get them out the door and travel in our 40s. Instead, my husband had back surgery that the doc screwed up and left a shard of bone behind. Three surgeries later and he's on morphine for the rest of his life and some days he can't get out of bed at all! About 6 months later I was having all sorts of pain creeping in that I couldn't explain. I was exhausted, couldn't sleep, couldn't think, etc. Couldn't get anyone to listen. I would work with a towel in my lap to sry my tears from crying due to pain. Finally I see a Rheumatologist who diagnoses fibro, another doc diagnoses bulging and herniated discs, and I get to a pain doc. I got some of the pain under control, but still couldn't work enough days in a row and kept making mistakes (I was a medical transcriptionist). I had already mourned the loss of our future together once, then I had to mourn the loss of it again, AND the loss of my career. Still waiting on disability too.

Nov 13, 2015 11:48 AM

There is so much to learn to deal with I can't say I have accepted anything. I tolerate a h*!! Of a lot. From diagnosis to misdiagnosis and lack of diagnosis, not being able to work, battling for disability, battling for my disability retirement, the downward glances of others, putting my family through it all and poverty to top it off, grieving for the loss of who I was and unable to accept this is life at 46 not being able to do anything, to not be hugged how does one really "accept" it?

I was diagnosed with fibro 10 years ago became severe over a year ago maybe two, darn memory! I fought acceptance of fibro all the way and I continue to do so. Had I sat down and accepted it I would not have learned I have a lot of other issues causing a great deal of the pain.

So i guess for me lack of acceptance keeps me pushing the doctors to do thier job to the fullest of thier capabilities and not letting them sweep me under the fibromyalgia rug so to speak. ( ;

Nov 14, 2015 5:12 PM

I was just diagnosed with a frozen shoulder and I am awaiting an mri to varify that diagnosis. My right arm is so numb, it burns, aches. The shoulder too. I just want to be better. This is my dominant arm and I am a full time college student its really hard for me to try to do my hw with this pain. Im also struggling to accept being reliant on my boyfriend to help me with my chores. I have been independent most of my life so its a big adjustment for me. I hope I can get better soon because this just makes me so depressed.

Nov 15, 2015 3:42 AM

This all was so good for me to read. I have had depression and anxiety and pain since my 20s. I'm 47 now. I lost my dream job back in 2003 after working with the company successfully for 7 years. The reason was completely political and I was not given a reason nor did I have any warning. That was the beginning of my demise into the depression and pain hell. I had been diagnosed with fibromyalgia around that same time. Reading this posting hit home. I had big plans, hope and dreams for my future as well. On top of my stuff, my daughter became a drug addict 3 years later and almost died of a drug overdose on her 18th birthday. She is clean from the drugs and still drinks some and every day is a struggle for her. I had my kids early, too, and so i thought that at this point in my life we would still have our beautiful home and some money in the bank. Boy, was I wrong. Each day is a struggle. Some days are better than others. There is no consistency other than the every day physical and mental pain.
I think it's time to pray for acceptance.
Thank you for sharing.

Nov 16, 2015 12:32 AM

I have PTSD and likewise, am still commit to terms with it as a reality. I like to think of myself as a strong resilient person, but I've been stuck with pain (resulting from the PTSD) for 12 years and I still have a hard time accepting that I have PTSD simply because I'm afraid that admiting I'm not resilient will make it worse.

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