My pandora's box of emotions that I have about FMS - I wanted to share it with you.... it hasn't been easy and it isn't over!

My pandora's box of emotions that I have about FMS - I wanted to share it with you.... it hasn't been easy and it isn't over!

I have spent the week considering 'how' I feel about my diagnosis and the impact it has on my life. The important aspect of this was to be aware of my emotions. When I thought about it, I visualised it as a 'box' a bit of a Pandora's box I suppose. I was aware that it was there, but avoided looking at it or thinking about it. It has taken me sometime to consider what feelings there are in 'the box'.

I have created the visual - although I am definitely no artist, and used that to build some words around my feelings and why I feel that way. I wanted to share it because it makes it 'out there' and no longer the secret that I am embarrassed by.

The box is surrounded by a grey fog - a smog that gives me an overwhelming sense of sadness. I have felt this so many times and turned away - put the box back on the shelf out of reach because it is too painful to get too near to. To be close contact gives me a sense of an avalanche of tears. Each tear has a range of emotions within then. ANGER - at the condition and the effects of it; my constant pain, fatigue and the unpredictable nature of the the many other aspects of the condition. I feel BITTER; why me? I want to pretend that it doesn't exist and I will recover, I want to believe that it will not stay with me for ever . . . but it makes me angry and unhappy that I feel angry and bitter,and fatigued and in pain and the myriad of other debilitating features that rise and fall like the waves that come to drown me. I feel frightened. I feel broken hearted a feeling that I can only recall when my Dad died. My life is gone, my aspirations dashed, my future uncertain, my hopes lie on the floor dormant; I don't know if I will ever be able to pick them up, the limitations of the condition have robbed me of the things I can see, I can smell, and cannot touch. The feel that my hopes are behind a glass screen created by the pain, fatigue and debilitating, yet invisible effects of FMS. I feel resentful towards others, who I percieve to be abusing their bodies when I have never indulged in recreational drugs or excesses of alcohol, I have exercised and been a caring giving person try to eat healthily and be a good person in the community. I envy others without the condition, when they are out running, I only wish I could do that to, when my friends talk about getting fit by cycling and I wish I could be doing that too. I envy others who feel refreshed by sleep.

I am disappointed with the life I have, I know that I am grateful for many things, yet disappointed that it isn't the life I pictured for myself at my age. It is the inner turmoil and anguish caused by the unpredictability and turbulent nature of FMS that takes away the strength that I have and resolve to keep FMS from taking over my life. This leads to frustration and ambition for denial. I am anxious about my future, how long can I keep on with work for? How long can I sustain it, and provide for my teenage daughter. Without work, as I have done all my life, what is my status in the world. Will I be insignificant to my friends and family, will I be considered 'one of those layabouts' who don't even try to find work? After all, I look okay! I feel selfish, when I say no, mostly to my daughter, when I tell her I can't manage to run her about or when I need to stop and rest. I feel guilty, that her teenage memories will be made up of a life with a Mum (as I am a single parent) who is always tired, feels physical pain when she hugs me, too grumpy and fractious to tolerate the teenage tantrums. What kind of memories will she have of growing up?

All I aspire to have now is inner peace, these emotions are a barrier to that inner peace. I desire, a freedom to do what I want, when I want, how I want - but find that desire to be across the chasm of pacing.

7 Replies

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  • Wow! what you have done by putting your feelings down in words is a skill I'd certainly like to have!!! It takes courage also.I was diagnosed at the end of July this year and I'm nowhere near to making sense of what I feel.Thank you so much for sharing what a lot of us are probably feeling x

  • Again wow! You certainly have a gift being able to write with depth and feeling. I could relate to so much of what you said (only recently diagnosed myself). I felt again many of the emotions I had and yet couldnt put into words.

    At times it is desperate and there seems no way to comperhend all that it means. To manage, well I guess it has to be faced in small chunks a few days at a time, learning what you can do and celebrating your acheivements however small and insignificant they may seem.

    Life will be different and yes I agree with you, not what you may have imagined. You have a daughter and want the best fr her. Remeber she wants the best for her mum too. Teach her to understand what has changed and find new ways of coping. I have been doing this with my teenagers. It doesnt always stop a teen tantrum (why cant you go shopping/cinema etc etc like you promised). Its best not to promise too much and spur of the moment will often be best (when you do have a good day/few hours). She will love you just the same.

    Good luck with it all and keep using this site. I pop in and out for advice/information often (and a bit of a laugh sometimes too).

    :) xx

  • Ohh Suzy I fear your desperation and fear. Fibro is a hard thing to cope with, yet we have to find the will power to overcome it. Sometimes I feel that only strong people are inflicted with Fibro, a weak person would crumble never to recover, and between your poinient words I detect a remarkably strong personality who will prevail.

    ((((( gentle hugs )))))

    Julie xx

  • I know exactly how you feel suzy, ive had fm for over 11yrs now and my health is getting much worse, flare-ups are more frequent and take longer to recover from. I have 4children and a one year old grandaughter and feel sorry for the things i cant do with them. I work nights as a care assistant but im really struggling to carry on working, dont know how long i can carry on doing the job i love ;-(

  • You have managed to put into words exactly what so many of us are feeling. We may not be able to run,cycle,etc but we have other talents that are just as meaningful. Most of all we are strong enough to learn to live with this condition and Suzy you sound like you have the courage and determination to cope with whatever life deals you. Remember even the smallest achievement is a positive step in the right direction. And it sounds to me that you a wonderful caring person ---good luck :)

  • I feel the hardest part of the illness is accepting it and trying to learn to live with it, warm hugs x J

  • After 20 years of it hun I think my box is now overflowing. Now I never put things in but I move them around to suit my mood. But what you have done is fab xxxxx

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