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Explaining the Pain


#1

This is a poem I wrote to give my family and friends in an attempt to explain the pain we experience.

too much…

in too much pain to work anymore
in too much pain to dance
in too much pain to reach out
in too much pain to take a chance

in too much pain to sleep
in too much pain to try
in too much pain to read a book
in too much pain to cry

in too much pain to shop
in too much pain to cook a meal
in too much pain to clean the house
in too much pain to feel

in too much pain to travel
in too much pain to walk
in too much pain to worship
in too much pain to talk

in too much pain to celebrate
in too much pain to give
in too much pain too much pain too much pain
to live

ks 12/05/14©


#2

Shadalear you have to push yourself to do more,going out and socializing is very important.I go dancing and walking,I cook yes it hurts.My explanation to this is I have Fibromyalgia but does not have me.


#3

The only thing worse than having friends and family refusing to validate your pain is when a fellow victim of fibro does that to you. I’m genuinely happy for you if you can still go dancing or for walks. I’d give anything to be able to have just one more dance. :slightly_smiling_face: My pain level is so debilitating, I can barely get out of bed to wash a few dishes (sitting on a stool), cook a simple meal ( still on my stool) or a load of laundry. Taking a shower and getting dressed, then going to a doctor appointment will require at least a day for recovery afterward. I’m still dealing with my disappointment over a failed suicide attempt a few years ago. It would be so easy to just give up and stay in bed completely, but pushing through the pain with gritted teeth gives me a psychological boost I desperately need. We are all struggling with this same monster but we’re still individuals with varying levels of disability and pain.


#4

I push myself to go out dancing and yes the next two days I suffer.It is worth it to me because with my friends having fun helps me,forgetting about how much pain my body is In.Suck it up and go you may be surprised what u can do,especially if a song co especially on u like.


#5

Dancing? Good Lord, I’m grateful to walk to the bathroom! I’m stuck in bed most days. Pain is so bad. Some days I rock and cry. I always carry a vague suicidal feeling. I’ve lost my career. Lost my friends, social life. It’s no joke and when we come on a site for fibro to vent, we want validation. Empathy. I miss my life. I miss out on so many social events. Family events. I am so hurt, crushed, angry! Pissed off! I was a very active person before I got sick. It’s just such a huge loss. Thanks for listening.


#6

It is great Sassy that you can still continue to have a bit of a social life but understand there are people who the illness has progressed so much myself being one of them who cannot I was a very active person and a Balroom Dancer and I was always out walking my dogs I can hardly walk about my house now and when I do get out I am in a wheelchair being a retired nurse I know what to do to try and help myself but nothing is helping .So as I said I sincerely hope you continue to be able to have a bit of a social life but spare a thought for us who just cannot.


#7

I used to also be able to go out and do things and take a break for a couple of days. now it’s so bad I can’t even tell when i’m actually sick. I feel for you all because I know what it’s like to live through this and want to die cause you feel useless. but God loves you and you are not useless. we all have to go through being debilitated and some point in our lives and deal with the problems both physical and emotional that it causes. for some it’s shorter lived but for us it’s really not. I hate to tell you sassyfrace but this gets worse with time in my experience. I have lost everything. last year went well for awhile but I ended up down again. telling someone to suck it up when they don’t want to live anymore cause of the pain is not good. some of us can’t just suck it up. that’s basically what my husband said to me yesterday. I got told about how tough his dad is and what he’s been through and pushed through I also got told about his discs in his back being messed up and how he still works. I thought at one time he might have had this but I know he doesn’t. he likes to get out and do things and he works a hard job. it’s humiliating having someone come over to clean your house cause you haven’t. I had a really bad day today and I thought I caught a bug but realized it was the fibro. i’m so sick of this and the meds don’t work for me. one did for awhile but not anymore. but you have to look at the good things in life to make it through this. look at your blessings whatever they may be. for me I have a house on the water and I have a beautiful 9 year old girl that loves me very much. I also have a husband, while not truly understanding, loves me and takes care of me. I also have other family that loves me and people in have known that love me. I know of one other person with fibro. we don’t usually talk about it though. i’m not saying all of this because I don’t understand your depression. I just realized I have to be grateful to keep myself going. it will always be hard though.


#8

Great answer Jenni! I love how you stay grateful! That’s so important!


#9

Jenni, thanks for sharing. I’ve been alone so much since I became ill, I started to question myself. It’s amazing for me to see everyone’s stories because I relate to everything. I don’t know whats worse, the fibro or the deep depression I’ve fallen into. I do feel useless and when I woke up alive in the ICU 2 and a half days after I took a ton of pills I felt like God had rejected me. Everyone who looks at my blood test levels that weekend can’t believe I didn’t die. I was in blackout for 2 days after and no one realized it at the time. This disease/syndrome destroys lives and the relationships we have with our family members and friends. I’ve had so much rejection, it was really hard for me to reach out for support, so I want to thank you for yiour kindness and understanding. :slightly_smiling_face:


#10

Sorry, I meant to include Jennifer and Annette for their kindness and support as well. It feels nice to talk to people again. :slightly_smiling_face:


#11

Totally relate to what you saying Jenni when I am feeling down I pull myself together by counting my blessings I have two lovely sons my second son is an adopted Downs Syndrome young man there is only him and I at home now and I love him so much he helps me so much cheers me up when I am feeling depressed he is always giving me a cuddle and saying do you know I love you mum when my husband died he just took over thr things his dad used to help me with I always say he was a gift to me from heaven.Hope you are having some good days


#12

I truly wish that I could do what you state. Just walking to the bathroom hurts the bottom of my feet so bad I just want to scream. Can you walk over hot coals for 15 feet?


#13

I can sooo totally relate to you! I miss my old life. I can remember a time when I would be dancing to a CD while cooking a special meal for my boyfriend. I sometimes think I wish I would have known that was going to be the last time I really danced. Pain has robbed me of so many things in my life now. Fatigue comes in second place for ruining plans. I really HATE my life now. I have a family reunion in another state coming up next month and I just can’t go. Too many people, noise, stimulation, not to mention summer heat. I want to go but I know I will be miserable so decided not to. :frowning: