Why me?

All your fibromyalgia experiences, questions and answers.

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Why me?

Postby fibrobird » Mon Sep 15, 2014 3:52 pm

"It could be worse..."

That one sentence has been uttered to me more times than I can recall - which isn't unsurprising. It could be worse. Yes, it could be. I am blessed with a home, a family, a partner, slight mobility, and many other things that people suffer with. But I'm young. I'm not ready for my life to be dominated by an illness no one can see. I'm not ready to have to give up on my dreams because it's too much pressure on my body. I'm not ready. I'm just not. I lie awake, wondering what my trigger was, what caused this awful illness to riddle my body with pains, aches and throbs, what happened? I cannot find a trigger, I cannot find a reason. So why me?

"You don't look ill..."

The shock on people's face when you explain that you have a medical condition. You have to be polite and agree, explain that it affects the inside of you, that it affects your entire body without anyone but you knowing. You have to remember to not be rude and snap. I don't look ill, you're right, I usually look tired or worn out, that's because regardless of being in agony, I've gone and fulfilled my promise to a friend, I've fought tears and the overwhelming want to curl up on the floor and assume the fetal position. I don't look ill. But that doesn't mean I'm not. That doesn't mean that while I've been talking to you I've not been in pain. I don't look ill, I don't look like I'm struggling or in agony daily. So why me?

I have only had my fibro diagnosis for a year and it's been hard; harder than I ever imagined. It's been an immense battle. As though I'm trying to climb a steep hill with a weight pulling me back. I make three steps and get pulled back 5. I ask myself "why me?" almost daily, when I can't get out of bed, or when I need a nap after walking to the shop and back, or when I get intense pain in my entire body, I ask why me? Why did this happen to me? Why is there no real way to deal with it? Why is medicating the only real solution? Why me?
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Re: Why me?

Postby hazely » Mon Sep 15, 2014 4:21 pm

Fibrobird I think we all do we would not wish it on our worst enemy, but have to live with it everyday. sending you a big hug x
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Re: Why me?

Postby juliekp » Mon Sep 15, 2014 4:41 pm

Hi fibrobird. I ask myself the same question daily. No-one has an answer or a medical cure or even a decent way to deal with it. It is an awful illness. It is worse in some ways that it is hidden but good in other ways. Family/friends dont quite understand. Doctors sometimes dont understand. All we can do is live each day as best we can and hope that it doesnt get is down too much. Take care. Sending hugs. Juliekp
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Re: Why me?

Postby dazzleship » Mon Sep 15, 2014 4:50 pm

hi fibrobird.

it's one heck of a struggle, isn't it. :hugs: I've suffered from this stupid fibro for 2 years now and I still haven't accepted it. yes, as you say, it could be worse (and I also tell myself that at times). but it could also be better, couldn't it.

I totally know what you mean - I'm not ready to stop doing things I like doing, even if they cause me great pain. I don't want to give up the life I used to have and I can't accept that I have to.

I guess all of us can only hope that eventually the public at large will come to understand what Fibromyalgia is in the same way that other illnesses are just accepted and understood. I think that is a big part of the problem that we suffer from not just the illness but the perception of it from people who don't understand. maybe then we wouldn't all have to suffer the inane "but you don't look ill" and "it could be worse" comments.

as for trying to look for a reason? I must admit I never have, and I wonder if you are spending too much energy on wondering why. you say you lie awake wondering about it - but ask yourself - does the why matter? will it make any difference to your life if you had an answer?
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Re: Why me?

Postby iblinkin » Mon Sep 15, 2014 5:10 pm

Hi fibrobird, sorry you are going through this horrible illness and like yourseif this hit me in my youth except i spent most of life thinking it was me and why was i alway in pain and wishing i could never feel pain and feeling like an outcast and dealing with all the classic putdowns comments and physical attacks even into adult hood even just before going off work permantly and did not get diagosed till i was in my 50's and then the Dr. just let me leave without helping whatsoever and spent several years just dealing with it until an accident at work changed all of that for good. I would like to help you as i have found some things more tolerable. First things first; The mindset of a fibro warrior can weaken due to constant wear and tear on our bodies and mind from waking up each day to a new or recurring pain, aches or whatever decides to visit us and beat us down. The one most important thing we must do is try to keep a positive frame of mind and believe it or not "happy thoughts" as the negative ones will suck the life out of us. This a very important first step in making improvements in your life and yes it is possible! One other thing is you are not alone in this battle as we are fortunate to have this forum to visit and share with one another, so i would like to ask a favour of you and that is to steer yourself away from the "why me" frame of mind. :-) One thing you have in your favour is your youth as i believe they will find the key to this illness and my clock is ticking but i still think it will be in my time as well! You may find some other suggestions that i have posted here in the forum on foods and such that may make a difference in your life.. i know it has with me. Stay strong we care. Hugs and good thoughts going your way.

p.s. I will repost them if you cannot find my other ones.
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Re: Why me?

Postby denys » Mon Sep 15, 2014 5:59 pm

Hi, like the others I'm sorry you are suffering so much at the moment, I know what it is like to question and to ask 'why me' but on the other hand I then ask 'why not me' this condition is random, its not caused by something you did or didnt do.

There has to be a trigger, but often its not obvious and maybe never will be. iblinkin is right, that thought will drag you down. It will stop you making any sort of progress towards acceptance and so it is really important to try to steer away from it and try to think of the positive things you have in your life.

If you look at the topic viewtopic.php?f=2&t=10653 you will see we go through different stages of grief

We often revisit the different stages and its easy to get stuck, you have to take charge of this condition and dont let it browbeat you. Your life isnt over and neither are your dreams you are just on a different path and your dreams have had to change a little but there is still and awful lot you CAN do, change the negative CANT into the positive CAN and :fingerscrossed: :fingerscrossed: you will start to see things differently :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Denys

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Re: Why me?

Postby Butterfly8588 » Mon Sep 15, 2014 7:25 pm

Hi Fibrobird,
I'm really sorry you're struggling so much, I have asked myself that question on occasion as I'm sure we all have. I've had fibro for 5 years now which is not long compared to some but I've felt every single one of those years.
The funniest thing happened to me the other day, I was stood outside and I was in agony and I looked up at the beautiful full moon and I begged Grandmother Moon for her help. BUT the help wasnt for the pain to stop, it was for something else and it was for someone else and I realised I haven't cried over the pain for several years now and I havent prayed for it to stop. Yes it stops me from doing things, yes I get a lot of pain and I need to vent on here and yes i cry because I'm emotional and frustrated. But not because I'm in pain.
The point I am trying to make is at some point (and it's different for everyone) you will reach the stage where you can find small ways around your problems or they might not seem so impossible anymore and you won't even notice it's happened.
Please hold on to your dreams, you don't know what's around the corner. I always think that if this pain can start so quickly, it can leave again just as quick. That thought gets me through.

Gentle hugs to you xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Why me?

Postby Theresa34 » Mon Sep 15, 2014 8:21 pm

I am one of those who do say that it could be worse. I'm sure a lot of people hate those words but I have the same condition and I do use them. I've been through all the emotions since diagnosis this year and went through an emotion or two last yr being diagnosed with arthritis and both in my thirties with a young family. I get down days but i like to think that most days are good. I am still learning about flare ups and how to recognise them. I've recently gone on an added medication to take with my current med but thankfully I don't need painkillers too often. I've had the thought, why me when I'm feeling down and sorry for myself. Nothing wrong with feeling upset. It's perfectly normal x. I've learned how to live with this condition. I've realised it wont go away so I will make the best of it. Learning to manage it rather than wishing it away. Making lemons out of lemonade :-D I try to stay positive but I do get upset sometimes x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Why me?

Postby robbiecramp » Mon Sep 15, 2014 10:20 pm

Hi fibrobird I am truly sorry you are going through this part of the process that every person who found out they had fibromyalgia does and it now isn't about what triggered it, it's about how far I can do things and these dreams you have of what you want to do how can you adapt them so you can achieve them ok not the way you imagined but you can say

Hey I did it

My trigger was spending the last 30 years from age of 11years old helping my mum who was disabled with MS and my older twin brothers who lost oxygen at birth and had co-ordination problems and signs of autism and aspergers I felt help was needed to them as well. My dad was around and did all he could and worked very hard in his job and I kept doing it and hen went into care work doing support work for people with mental health, learning difficulties, young and old but also worked with some people who thought right I do 35 hrs a week so I am going to do 2x14hrs and a7 hr shift and take 4 days off. ok good on them but they would have them 4 days off. Me was totally different I chose that job because I wanted to make a difference and if they were short I was called and I accepted the shift. I remember one shift it started at 2000 and finished at 1300 the next day and if someone had not come in it would have been 1500 a no-one was prepared to do it and that's what I did often I would work a night shift till 7.30 in morning go and have a shower cup of coffee and travel to my next job at 10-midday. This was a home support visit that was done daily by me as I dad all his support plans and reviews and it was brilliant. The managers were always on at me not to work all these hours but understood why if they were a member of staff down it totally disrupted the clients day as someone would suffer as they could not go out. In the end I was doing a double shift 14 hours New Years Day started at 7.30 and had a real bad pain in my neck and shoulders for a couple of days so still went in, got told off, carried on and at 1300 was literally sat on a sofa with other staff and clients in a room and the shift leader looked at me I managed to get up to leave room with her and she rang 999 a complete wave of pain like I had never felt before swept through my body and the ambulance was on blue lights and at first they suspected a major heart attack so got me in did the usual tests on way (normal) ok was made to hold on in a corridor with a trolley for 4 hrs and it was not anybody's fault blood tests were fine and within 14 days was diagnosed with fibromyalgia. That cost me my job in the end and I have since been awarded ESA Support Group for 12 months which is what I wanted as am now going to see what I can do.

A job I loved, A Parent I loved, Brothers I love and clients that needed my help they all contributed in some way to me having this condition and I do not blame one of them at all if I could would do it all again even if I knew what awaited me.

My multi discipline team including my psychologist were amazed how positive I was as I was not going to let it beat me, but deep down I had them to words (why me). It is the question that can never be answered you now have to find how much you can do in a day don't rush work it out and you may find hopefully with the right medication the right type of physiotherapy you may improve.

I wish you all luck in the world and everyone else on this forum you are wonderful I don't post on here much and very rarely reply but I do read most of forums and they help so much

My advice is don't look for a trigger gently and slowly overcome it and get what you can out of life and adapt to it and do not let anybody grind you down saying there is nothing up with you they are not worth it

Good Luck

Robbie
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Re: Why me?

Postby Helhit » Tue Sep 16, 2014 10:10 am

Robbie

Thank you for what you wrote, its actually bought tears to my eyes.

You are completely right.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: Why me?

Postby Zia2014 » Thu Sep 18, 2014 5:09 pm

I could have written your OP too. Word for word. We only present ourselves at our best because it's human isn't it? We don't go out when we look a mess, can't stand or keep our eyes open, haven't combed our hair, etc etc. People only see our best, whatever that is, because we don't want them to see us at our worst.

I was on a course recently and this one woman went on and on about how ill she was. Then near the end when we had to say what we would be able to do as prep for the next time, I said that being ill meant I couldn't promise I would get my quota done. You should have seen her face! It was all in one - how dare you be ill, I am the ill one in here, you're too young to be ill, you don't look ill, I hold the rights on moaning in this group....!

I kind of had an inward smile because I thought it served her right that she hadn't known and it had shocked her. Why should anyone have to know? But I won't sit there any make excuses for hours, I just needed to let the tutor know in case I let him down.
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