11 thoughts on “When You Miss Out On Life

  • April 9, 2013 at 2:16 pm

    This is so true. Rather than beat myself up and feel bad about what I can’t do, I try and take advantage of the time alone. I do some of the above for myself.

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  • April 9, 2013 at 4:51 pm

    I can really related. I worked non-stop, expect for the birth of my only child in 1985, since I was 16 years old. I had suffered Migraines for 25 years now and in May 2010 they became daily intractable migraines. Nothing I have tried with traditional nor non-traditional medicine has worked thus far. Have tried over 50+ different medications as abortives as well as preventives to no avail-still have not found a good med combo yet. I go for my 2nd round of Botox treatment for Migraine on April 16th and praying w/all my heart it works. I was diagnosed w/FM & CFS late Dec 2012. Also PTSD, OCD, IBS, SAD and Depression I’ve been battling for years. Because of my daily migraines it’s put my life on a standstill since May 2010. I cannot plan on much because the pain prevents me. I have lost friends and family don’t understand. I don’t get a lot of support from some family. It’s very isolating and stigmatized. They see commercials about taking Excedrin and the pain will go away. Well, if only it did. I have migraines each week that can last 3-4 days at most. Then the pain level lessens some but never goes away completely and another one comes along. When I do go out on rare occasions I have to be super careful of my surroundings and environment-cannot tolerate bright light, loud noise, strong odors as they are triggers. If I go to a store I have to say way far away from the scented candle or laundry soap isle. And if someone passes me that smells like they are wearing a whole bottle of cologne it sets me off. It is so restrictive and to get people to understand is almost impossible, until you get online and join bloggers w/same or likewise disabilities. I’ve been disabled for almost 3 years and won my SSD last April 2012 after appealing. I try to stay upbeat though by prayer and mediation and keeping a positive outlook because when I was negative and whiny about it things felt worse. So I loved this site so much for its positive, upbeat message and your attitude is amazing. Keep it up and keep us all encouraged. And you stay Happy, Healthy and Pain Free. Kudos.

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  • April 9, 2013 at 11:35 pm

    I hear you, loud and clear!! I try not to dwell on the “used tos”, of course when I see young moms with their kids I say to myself, I did that once upon a time, where did the strength and energy go? Now my kids are in their late 20s! My husband and I are both disabled, with some of the same things (weird)& some not the same. We don’t do much. Good points and bad. We “get it”. but there is so much neither of us can do. I see all the “Spring Cleaning” stuff and wonder when that was last done here. It’s frustrating when others don’t understand, but I try to keep in mind that’s their problem. not mine.
    Janet

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  • April 10, 2013 at 7:21 pm

    Thank you for this! It’s a wonderful post with a great list. It makes this reader feel a lot less alone.

    Christina

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    • April 11, 2013 at 8:47 am

      I have neuropathic pain, described by some people as the worst pain you can have. In my case it is controlled by medication. I also have tinnitus and arthritis. I have had a life of neck/shoulder/head pain – probably due to whiplash suffered ( but not in those days recognised )in a traffic accident when I was six years and twenty years old. I am 64 tomorrow. I have also suffered from both OCD and depression. The OCD is largely cured and the depression controlled.
      My advice to anyone living with chronic pain is not to let it rule your life. Find fulfilling ways to occupy yourself and turn it round so you rule it. Look after your general health and pamper yourself whenever you can. Oh and get a dog – they are very good therapy. Mine is the love of my life.

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      • April 12, 2013 at 12:19 pm

        Bentleyfox

        I totally agree w/your outlook! It’s terrible to suffer so much pain and I will pray for you. But no, you cannot let it rule your life. There are small blessings that come out of living w/chronic pain and we need to focus on that to get us through day to day. And I 1000% agree that getting a dog is the best therapy. If all Doctors wrote out an RX for that. They are excellent therapy and my little fella is the love of my life as well. He brings me such joy, love and happiness. And that is something we can all use a little extra of.

        Peace and prayers to you.

        http://julieg350dayinthelifewithmigraines.wordpress.com/2013/03/28/unexpected-lessons-learned-and-old-ones-renewed/

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  • December 1, 2013 at 12:13 pm

    I have spent way to many holidays, birthdays, and family get togethers in my bedroom as the family celebrates, but I have learned over the past twenty years to enjoy the noise and conversation and the laughs of my beloved family even though I may not be able to particape fully. As I listen I feel proud that these are human beings that I helped create and nurture and I am so blessed that they come even when I am not at my best. Most of my family are supportive, some not so much, but that is life.
    I also have learned to say, no, that is something that will cost me days of pain or discomfort, and do what I can do without the cost being too great, I do have little dog, who has been with me for 14 years, he and my loving husband are my best support system, they help me cope and keep on keeping on, I have fibromyalgia, complicated by a neurological condition, called CIDP or chronic inflammatory demylinzing polyneurophy, I would be interested in hearing from anyone else who has this condition. Yes, it is sad to miss out on so much, and I have over the years seriously considered just bailing out on life altogether, but just couldn’t do that to my husband and children and grandchildren, and now two great grandsons, I am now 78 and amazed and delighted to have survived this long. Do not know what this illness means or is for in the scope of my life or why I have it, gave up those questions years ago, just trust that the universe is compassionate and that good things may come of it in the world, such as treatments and cures, as I have certainly done all I can do to bring it to the attention of many, many doctors! Stay the course is my advice to all fellow sufferers, we may not know how much good we are doing! Shirley

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  • March 15, 2014 at 1:01 pm

    Thank you so much for sharing this post. I have had to change my life because of chronic pain and fibromyalgia. It’s hard to adjust when your family still expects mom to jump and go do things like I used too. It’s an emotional and physical toll on me. I was once active, now I’m a couch potato. I have written several posts about my chronic pain and parenting with chronic pain. I also blog bc I can work a normal job.

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  • September 28, 2015 at 4:23 pm

    I had it with life passing me by. This last nerve block gave me 3 days of pain free for the first time since I was in grade school. Well. it’s back and I am really pissed. I am here home alone, life going on for everyone else out there in the world. This has gone on way past acceptable.

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  • September 23, 2018 at 11:41 am

    It was a car accident with whiplash that caused my fibromyalgia, spinal stenosis and DDD. I hope whomever was texting when they hit you loses their license. Usually, they just walk away, after the 2-minute inconvenience. It is unfortunate that we are only given 2 years to sue them, as my real pain didn’t even start until way after that and my lawyer made $16,000 for making a couple of phone calls. The truth is no amount of money would mean anything when I’m in this much pain. So take away the opioids, make it impossible for me to get epidurals with liability concerns of the hospital and make it so I can’t even afford medical cannabis. Make me bite the bullet because I somehow deserve this. Oh, and make assisted suicide illegal, too. Not too many choices left. Heroin is cheap and readily available, maybe I’ll try that.

    Anyway, I’m sorry for your loss and happy that you were able to manage some sort of life before you got chronic pain. Maybe someday, the pain profiteers will find something that actually helps, if we give them enough money. At least the rich people will be able to afford to live.

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  • December 4, 2018 at 4:54 am

    Chronic pain is different. Your body keeps hurting weeks, months, or even years after the injury. I don’t even know how I finished up right here. You are so interesting! I do not suppose I’ve truly read through a single thing like this before. So wonderful to find.

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