I WANT ME BACK !!

All your fibromyalgia experiences, questions and answers.

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I WANT ME BACK !!

Postby changeoflife » Mon Jul 20, 2015 10:08 pm

I think I've been doing quite well up till now, but I'm just having one of those days when I'm really missing 'myself', I so badly want my old self back. It's like missing someone you haven't seen for a long while, an old friend that's moved away. I so hate being at this in-between stage, when I so struggle to walk out with my husband and he turns to me and says "enough now, time to get you home" I hate this so much. Today isn't one of my 'strong days' when I soilder on as if nothing has changed. I refuse to ever use a mobilty scooter, I would feel like a fraud, yet I have to be taken home like a rag doll. I hate being in this middle, grey area, where I still believe I'm capable of anything (the old me) yet fail so very often but still get praise from my rock of a husband for trying. It's like a bad dream that I keep thinking I will wake from but never do. I had so many plans and dreams for our future, I know we can adapt and still have good times, but I'm sad and angry at the same time. I feel like I've been brutally mugged, someone/something has stolen my future, my life. I have no energy or patience to explain to old colleagues or friends how my back/neck is. I see my words visibilly flying over they're heads. I am strong and I know I'll get along with my new friend mr fibro one day, but for now we've had a fall out. My mum said never go to bed not speaking, so I'll tell you, not him that at the moment he's really p#####g me off !!!! Goodnight :sleep:
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Re: I WANT ME BACK !!

Postby Susan Stokes » Tue Jul 21, 2015 1:28 am

Hi changeoflife, Hope you feel better for getting that off your chest - I know where you're coming from and you expressed it so well. Being mugged is just how it feels. It's 1.25 am and I haven't managed to sleep yet so goodness knows what tomorrow will be like. It sounds like you have a very caring husband, that's one battle you don't have to fight. Hope you feel better soon. Sending wishes for lots of 'good' days. Night night.
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Re: I WANT ME BACK !!

Postby Jasperheidi » Tue Jul 21, 2015 7:50 am

I SO agree with everything you say x
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Re: I WANT ME BACK !!

Postby Jasperheidi » Tue Jul 21, 2015 7:51 am

I SO agree with everything you say x
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Re: I WANT ME BACK !!

Postby carolad » Tue Jul 21, 2015 10:28 am

I know this is easier said than done, but try not to compare yourself to others or your 'old' self....that will only lead to frustration :cry:

Try to concentrate on the things that you CAN do, not on the things you can't. It takes a while to change your mindset but accepting your situation means you can make the most of what you have. :-)
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Re: I WANT ME BACK !!

Postby changeoflife » Tue Jul 21, 2015 11:12 am

Each day when I feel sad or angry about my changed life, I automatically remind myself of so many others who are so much worse off. What my dad would do for one day back, living. I've had quality time with my grown children, when bedridden, to have some heart felt talks, to really notice things in the garden, in life. I sometimes see myself as one of the chosen ones that probably tried to give too much, and nothing would have stopped me, except this! I used to be the joker at work, the one who couldn't bare the silence in the room so would start making people laugh, now I hate crowds, enjoy watching things grow and really take everything in. Maybe that's the big plus thing with this illness, it's made me stop...and literally take time to smell the roses. Above all I think I hate being regarded as a non worker, many people just can't associate with that. I was a grafter and so dam proud of the job I held. My life was based around work, I didn't expect to have days to myself for another 15 or so years. I feel like I have so much more I could of given, but my body now says, enough. I feel today is a better day, I don't feel like I've just done 10 rounds with Tyson. Time to smell the roses x
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Re: I WANT ME BACK !!

Postby carolad » Tue Jul 21, 2015 12:14 pm

changeoflife wrote:Each day when I feel sad or angry about my changed life, I automatically remind myself of so many others who are so much worse off. What my dad would do for one day back, living. I've had quality time with my grown children, when bedridden, to have some heart felt talks, to really notice things in the garden, in life. I sometimes see myself as one of the chosen ones that probably tried to give too much, and nothing would have stopped me, except this! I used to be the joker at work, the one who couldn't bare the silence in the room so would start making people laugh, now I hate crowds, enjoy watching things grow and really take everything in. Maybe that's the big plus thing with this illness, it's made me stop...and literally take time to smell the roses. Above all I think I hate being regarded as a non worker, many people just can't associate with that. I was a grafter and so dam proud of the job I held. My life was based around work, I didn't expect to have days to myself for another 15 or so years. I feel like I have so much more I could of given, but my body now says, enough. I feel today is a better day, I don't feel like I've just done 10 rounds with Tyson. Time to smell the roses x


You have a great attitude...keep that positive outlook! :-) xx
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Re: I WANT ME BACK !!

Postby bandj » Tue Jul 21, 2015 2:41 pm

I so understand! I've been saying much the same thing today. I'm 46 and feel 86, plus the hot water is killing my asthma and I'm breathless all the time. Oops! That should have read hot weather, not hot water! :-D predictive text is so much fun! And I've just heard that I can't have ill health retirement so they'll just kick me out. I've always worked, I've found it hard to adapt to being on the sick.

However, big plus is that I've more time for craft work and I can still help others. I took 46 hand made cards to our local hospice last week which gave me a boost. It's also time I started making some more beaded baubles for them. :-P it's a nice feeling that, by doing something I enjoy, I can help raise precious funds for the hospice. :lol:
There are these three things that remain: faith, hope and love. And the greatest of these is LOVE.
1 Corinthians 13:13
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Re: I WANT ME BACK !!

Postby jules50 » Tue Jul 21, 2015 9:34 pm

I completely understand how you feel and you have found the words to express it. I also retired early from a career I loved but it was a good few years ago. It does get easier you get better at being at ease with your new way of life. A good husband is a life saver and you learn to find activities with new people who accept even if they don't always understand fibromyalgia. Every so often things do upset me but eventually I have made a new life even though it looks different to what I expected. Keep battling on.
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Re: I WANT ME BACK !!

Postby UnderSiege » Tue Jul 21, 2015 10:09 pm

I understand this too but for me it's not the feeling like crap that gets me down, it's that my family demand so much of me, leaving me with so little of myself and so damn angry that I can't indulge in my hobbies/things of meaning to me which a little of would actually do me good and increase my morale... so stress rules here and makes me worse which gets me more grief and so I get angrier which...
Yeah, a vicious circle. Been 71 days now since I last had decent, meaningful quality time to myself...
My family like to argue that when I lived away from them I didn't get up to much but I was still unwell then, the only (and major, game winning) difference being that I wasn't exposed to overbearing, ignorant and arrogant expectations and without that stress and anxiety they inflict, was happier, the master of my destiny (as far as fibro allows) and actually did more and worked harder because my limited resources weren't being worn out battling unnecessary and stupid grief and being stressed out, anxious and utterly furious at the treatment...

So I miss me, not because of how I feel from one day to the next... I've already had chronic arthritis for 20 years so being hurting and slowed down is something I can take up to a point. What I miss is the me who was free from the shackles of a negative mental and emotional state inflicted by my own blood who cannot be made to see the damage they are doing and are sending me to a very dark place as a result...

I can only persevere for now but I'm at the point where just until a few days ago I had several weeks of real bowel trouble, only being able to do number two's 1-2 times a week and y'know what? I was actually hoping it was 'curable' bowel cancer... so it wouldn't kill me but make me really ill for a while and maybe my family would finally get the plot and be sorry (though too late imo) or all the neglects and abuses would come to light and the NHS or some other outside agency would step up for me. Other than that, the fact I've considered doing nasty things to myself involving rope, razors, pills or plastic bags should be enough to give pause but I guess I've actually got to do that to make it count by which time it would already be too late. Funny that...

I deserve better and I'm willing to go all out to fight for it within my limitations but I'm already done in before I even get clear of the nonsense. This is demise, long and slow, lonely and tortuous. I'm only 38 and I'm about done with this life already while everybody I know is having a golden age.
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Re: I WANT ME BACK !!

Postby Polaris » Wed Jul 22, 2015 6:57 am

I resisted getting a Mobility Scooter for a very long time but I just had to many flares after going out and eventually gave in. For the most part it has been a huge success and I can enjoy going out without experiencing a flare. This means enjoyable days out. Having said that, yesterday I took my scooter to the zoo, (they used to have loan scooters but don't anymore) and ended up with a flare and migraine. I don't think I would have got around the zoo at all without the scooter.
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Re: I WANT ME BACK !!

Postby Dieselbear » Wed Jul 22, 2015 1:12 pm

Oh I so agree! I broke down at the doctors yesterday when it turns out the the "virus" I thought I'd had for about a month is actually "just fibromyalgia". My sore mouth and throat, that feels like it's been shredded with razor blades most mornings, is actually the result of "dry mouth". How much more can it throw at me. I just thought I'd got to grips with all the other symptoms and then out of nowhere springs a new one! I have just had to give up work (my dream job), as I was struggling to go in for the 1 day per week which my lovely and unbelievably supportive employers had agreed and I really really just want to be normal. I want my life back. I want to get up at 6am, stride across the fields with my dogs, enjoy my job, or run around an agility pitch or take the dogs to the beach or spend a day wandering around the shopping centre with a friend and then be awake and lucid past 9pm and actually be able to socialise with friends. I just feel like screaming, if only my throat didn't hurt so much! Lol!
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Re: I WANT ME BACK !!

Postby changeoflife » Wed Jul 22, 2015 2:56 pm

It's seems by far I'm not the only one feeling like this from the many responses both on here and FB !! Oh how I'd like one huge gathering so we could all have a good old moan and talk about ways of dealing with this together. My husband says so often how positive I am and how much he admires me for coping and pushing myself. I think I'm nearly at that stage when I can close the book on the first chapter of my life and begin on the next. I'm grateful like others that this hit me at this age (nearly 50) and I was able to be active with my four now grown children, enjoying activities, holidays, camping, swimming etc, I just would have been a little more accepting if I'd had just a few more years of working to secure our future. I love life with a passion and can't beleive at many times I'd contemplated giving up. I'm always scanning the internet looking for breakthroughs on a cure, you never know!! I've certainly learnt to pace myself better (well mostly ;-) I've tried to cut down as far as I could bare on the painkillers and I think I'm just about there with the combination I'm on. For now I will have to accept the size 8 clothes will prob have to stay in the drawers for now ;-) and all my lovely heels, but the nail polish and hair colour are back in use. :lol:
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Re: I WANT ME BACK !!

Postby carolad » Fri Jul 24, 2015 11:04 am

Dieselbear wrote: I really really just want to be normal.


I do know what you mean...but if you can accept that what is 'normal' for you now is different from what WAS normal for you, you won't get so frustrated :-) I think it is a process you have to go through - there is a period of grieving for your old life, before you begin to accept that things are just different now.

And actually things change throughout life for everyone, not just people with a chronic health condition. Being able to accept your present circumstances and adapt to the way things are now will make life easier. Mindfullness is very helpful here - it helps if you can concentrate on the present, not look back to the past or worry about the future :-D
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Re: I WANT ME BACK !!

Postby UnderSiege » Fri Jul 24, 2015 1:04 pm

In my experience and circumstances mindfulness is a self defeating scam (but that's just me though... for others with head and air space I'm sure it works fine)
For me, it exists to bolster the feelings of certain others to act with impunity against me.
For instance, I've had chronic arthritis for 20 years and Fibro for possibly 8 years (though only a real game changer since last summer/autumn)
For years I've put the interests of the family first over my own, whether by free will or coercion and received nothing but abuse, neglect, ignorance...
I've had to let go of my own interests whether it's because I've been in great pain, fatigue, brain fog or ppl just demand and insist I perform to their expectations. Sometimes I feel like some kind of amusement. A dancing Bear perhaps...
And I've kept telling myself 'maybe tomorrow, yeah, I'll stay the course for now but maybe tomorrow eh?' and been disappointed every time while I keep getting more and more unwell, have less and less of myself left to me and my horizons creep closer and closer...
And, yeah, it does irk me that doctors and physios tell me all about mindfulness... Yes, I'm very mindful of my health and my faults and how utterly awful and useless a human nonbeing I am.
I'm mindful of my low state of morale and how I keep being brought to the point of breakdown and despair. To the point of snapping and being arrested for assaulting my main antagonist. How would you deal with having cold water poured on you every morning while you writhe in pain in bed after spending days and weeks overspending your spoon allowance and having your every thought and feeling, including your position in life (signed off by doctor, receiving hospital treatment, a ton of meds and ESA) ridiculed and rubbished and having no refuge or escape from it?
I'm mindful of how I've done for others what I could when I could and though it's tired me out to my bones and my soul, has been for nothing and no gain whatsoever for me. And the merry dance goes on...
I'm mindful of how I have become a person I wouldn't want to know, angry, furious, depressed, anxious...
I'm mindful of everything while others around me seem to be very oblivious to an awful lot.

Events in the past have led directly and indirectly to current circumstances. Mindfulness to me is 'getting over it' and just waiting for it all to happen again. Sure, I'd love to just let it all go and all but just letting a past which assisted greatly in getting me to the most unenviable position I am in now just drift away like there's nothing wrong doesn't sit well with me at all.

If I can fight I WILL fight as long as I need to.
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