I know we have all reached this point of being fed up with our Fibro diagnosis and other diagnoses that many of us suffer from. I am at a point today where I am done; done with the pain, done with the fatigue and done with not feeling well. It is a normal circumstance in life to get sick, catch a cold or whatever; but this is a never ending parade of different pains, feeling tired all the time and being limited on what we can accomplish. The hardest part is not knowing what the next day will bring. Will I feel better tomorrow or will I feel worse? What kind of pain will I experience? Will I struggle to get through work or will I be able to make it through the day? I AM FED UP. If I think about having to deal with this for the REST OF MY LIFE, it is miserable and I don't know how to keep the hope alive. Maybe a treatment will come along that will help or maybe it won't? Every day is a battle sometimes and I can't fight this war the rest of my life...what am I supposed to do with this life sentence?
oh gosh.. i think i could never feel i have a gloomy life sentence. i just want to believe and feel that i will get better either with treatment , cures or miracles. I have not worked and been disabled for 28 ish years . so for me doing anything as simple as washing my own face, reading, writing , talking, typing, cooking and eating on my own is amazing now and wonderful for me. Not being able to do anything on my own at all for the first 10 of these 28 years made me so grateful for my life now and that is why i believe in getting better and only projecting that in to my day and the next day and the future. Meditation. imagery and meditation are tools i use . I envision myself in wellness. Sure i do get down at times but i remind myself that it is not the picture i want for myself. I do not mean to sound simplistic or judgemental by no means. I feel the heaviness of everyone who suffers with chronic illness . I have been on this journey for about 29 years. I have been through tears, pity, desperation and laying in bed and on couch waiting for my husband to wash me, feed me , and do all things that had to be done. I agonized with fatigue, pain and flu symptoms and neuro( seizures, aphasia, vertigo,migraines with auras that were relentless and seemed to have no ending. i felt so desperate, hopeless . But eventually i turned those feelings and thoughts around. I did take some course in mind training and learn how to meditate and begin to change the negative thoughts and feelings i had and help myself to change those mental patterns. I am still fairly homebound but not bedridden and as you see i can use a computer and some other basic daily things for which i have become very grateful for. I am just saying some of this stuff because for at least 10 years of being bedridden and so sick we thought i was literately dying to being able to gain a percentage of functionality that has given me hope for the future. one where there are cures. effective treatment and /or miracles.. There are many things i can not do like drive, dance, and other stuff. I was happy when i could dance. it was a huge part of my llife. i studied ballet for 18 years. It was a lovely part of my life with great memories. But now I focus and can enjoy other stuff. I can still write poety whihc i love and i learned how to design cards and i do that for occasions for my family and friends. Ps i was talking about CFIDS with FM.. i had a very severe case of cfids( chronic fatigue immune disfunction syndrome) a complex , multi symptomed illness). I dont want anyone who has any of these illness and think i am giving the impression that one may or could become as disabled as i was. Keep in mind people have different levels of these illnesses. Some folks can function better than others and are more responsive to treatments. My message here was not to convey gloom or doom but to share hopefullness.. Alll the best to you and HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
Sara,, sometimes feeling like this means it's time to call the doc. Have you had a recent appointment? Is it time for a medication adjustment?
I would also suggest working with a therapist on relaxation techniques and mindfulness, which can help take out of thinking about the pain of yesterday and the fears for tomorrow and can put you back in the present moment.
Here is a visualization that may help. Close you eyes, and imagine serenity and good feelings in a color of your choice entering your body from your feet and flowing upwards. At, the same time, imagine negative feelings in an appropriate color flowing out of your body from the top of your head. Breather deeply at the same time, and repeat until you feel calmer. Repeat as necessary. See if it helps just a bit.
I sort of feel like this now that winter is here. My pain is so much worse and I am spending alot of time in bed with my heating pad and taking painkillers! I am currently waiting for a hearing date for disability and that is very stressful also! I just take one day at a time and try to do something I enjoy each day..for ex: watch a good movie, do a craft, read a book, do a crossword or jigsaw puzzle. I also like to practice my guitar but I have to have the energy and concentration for that! Another thing that really stinks for me is that I am not moving as much in the Winter cause my pain is worse and I am gaining more and more weight. This also makes me depressed. One other thing is to get relaxation CDs and play them either during the day or at night when you are ready to go to sleep. Other than that, just know that you are not alone!! We are all in this together.
Suzie, wow, I didn't know you were a ballerina. That is so great. I hope you can dig up a tutu picture and post it sometime.
Hi dancermom, sorry i dont have any pics of me in dance mode. many things like pics and poetry i had written got lost during one move ..i was sad for a very long time over that but had to finally let it go.. thanks for the interest.. i have wonderful memories of the joy dancing brought into my life. HUGGGGGGGGGGS
Sara,
I have felt like you are feeling. I have gone to bed hoping I would not wake up. Remember the people whose hearts would break if you were gone - then take one day at a time. Keep reaching out, trying new therapies, talking to people who understand. Maybe your local hospital has a pain clinic and hosts meetings for people with chronic pain. It helps to know you have plenty of company. Someday there will be a cure - or at least a safe, effective therapy. You want to be here to celebrate that day.
Sara.my heart breaks for you.I've been there done that. My pain and fatigue was so bad,I would pray every night that God would get this over with.Each morning I was so disappointed when I saw I was still alive.Finally after begging God to let me die I decided that I better get up and fight this thing.And fight this I have.It has been twenty five years and I am almost pain free.the chronic fatigue is gone.Twenty five years ago the doctors knew nothing to do.I ha a wonderful Doctor and he tried but I decided that I would have to help myself.I began looking for natural things to help.I went to a chiropractor and he did deep tissue massage.for two hours.He almost killed me.O the relief.The pain was lots better.so I go to him often.I learned that I can take turmeric and it does wonders for the pain.I take B complex for the fatigue.I take magnesium to help me sleep.You can also get Super Snooze from Puritan Pride.I take Prosac for depression.I do strss exercises.One is tobreath deeply.breath in to the count of seven,hold count to four,breath ou to the count of eight..Pool exercises is great for fibro.I include Jesus in everything thing I do.I ask for help each day. I try to stay positive and the words out of my mouth is positive.Everyday I would thank God for my healing{even though I was not healed. The Bible says "speak those things that are not as though they are"{not word for word,but the thought}It does not happen overnight but hang in there and fight like you have never fought before.God loves you and I do too.
Thanks Dancermom for the visualization, that is a great one to try! Sara, please let us know how this works for you.
dancermom said:
Sara,, sometimes feeling like this means it's time to call the doc. Have you had a recent appointment? Is it time for a medication adjustment?
I would also suggest working with a therapist on relaxation techniques and mindfulness, which can help take out of thinking about the pain of yesterday and the fears for tomorrow and can put you back in the present moment.
Here is a visualization that may help. Close you eyes, and imagine serenity and good feelings in a color of your choice entering your body from your feet and flowing upwards. At, the same time, imagine negative feelings in an appropriate color flowing out of your body from the top of your head. Breather deeply at the same time, and repeat until you feel calmer. Repeat as necessary. See if it helps just a bit.
Thank you for the wonderful, thoughtful responses. I'm feeling slightly better today and reading your responses definitely helped a lot! I guess, for me, I'm stuck between wanting to fight it and wanting to accept this illness. Some days it gets the better of me and I feel like I am losing the battle, but other days I feel like I am the one who is winning.
I am seeing a counselor and he is helping me, especially acknowledging my feelings and validating them that this illness sucks! But he is also helping me move into a better place of acceptance vs. rejection and hate. It is a daily battle and I'm definitely going to try some visualization of wellness and relaxation. I thought about getting a relaxation CD and bringing it to work to listen to on my lunch. Some days at work are so hard. I barely have the energy to make myself function let alone help other people with their problems. I don't know how I do it sometimes, but I always manage. I guess that is another thing to be thankful for. My counselor and PCP and also working with me on the pain because pain can cause many things to happen like fatigue, irritability, depression. Pain is the primary cause of most of my symptoms and I underestimated how much pain can affect our daily lives and spiral into other symptoms. I went to bed at 7:30pm last night because my body just needed rest. I fought against it for a few minutes because I didn't want to go to bed, but I gave into my body's need and felt better after I did so. I guess that is the primary struggle for me right now is acknowledging what my body needs vs. what my mind wants to do. I'm working through it and it is hard.
Thanks again for the responses and support. I truly appreciate it.
Your counselor sounds terrific, Sara. I am so glad you are in a better place today. Going to bed at 7:30 was a good move. Sleep is so important. Two thumbs up for you!
Thanks Dancermom! : ) I slept for 15 hours straight and it felt amazing. My body was telling me to rest, and when I finally did, the results were good.
Sara
dancermom said:
Your counselor sounds terrific, Sara. I am so glad you are in a better place today. Going to bed at 7:30 was a good move. Sleep is so important. Two thumbs up for you!
omg. I feel the same way. It is like a life sentence. I wish none of us had to experience the pain, the crude of fibro, but I'm just so glad I'm not alone. I just feel sooooo alone.
You are definitely not alone : ) I also wish we didn't have to experience this illness on a daily basis, but we all know that we can't wish it away (even though I am sure many of us have tried on several occassions, including myself). This website has really helped me in realizing I am not alone and there are others that can help me in times of needs that understand EXACTLY what I am going through. I hope this website can help you as well.
Sending support your way,
Sara
Hopefulfhol said:
omg. I feel the same way. It is like a life sentence. I wish none of us had to experience the pain, the crude of fibro, but I'm just so glad I'm not alone. I just feel sooooo alone.