Hello, I am not really here

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Hello, I am not really here

Postby Ennead » Tue Mar 19, 2013 8:53 pm

I am in denial.
My latest of a long line of consultants tells me it is one way of dealing with it.
But not the best. I have apparently been given all the support, and everything in the arsenal, that the system has for me and yet I am still there, trying, hoping something will shift. Approaching my life as if this is not happening is a coping mechanism, but it is not a way to buck the boom and bust, and it does nothing for the constant pain. Every day spent in bed is a personal insult to myself.
He tells me I am an overachiever, what he has no idea of is the fact that, in my eyes, I achieve nothing. He tells me to rest, give myself an easier time. That this is why I have been in this mess for the last ten years.

Diagnosed 2006 FM has taken my confidence, my friends, my marriage, my self esteem. My bank balance. I have always excelled at everything I attempt. I will not give in and give up. I cannot let it get to me. I cannot admit to it. That will make it real.
I am embarrassed by it, anyone who I have told treats me differently, friends who 'don't do needy' have dropped me. Single for four years I cannot see any man being interested with such a compromise involved. I rarely go out. I cannot work.
I hide my symptoms from my kids.

My ex is totally unsupportive to the point of abuse, still bitter that I dared divorce him, he lied in his court deposition. An Osteopath himself he claimed that to the best of his knowledge there was nothing wrong with me.
I feel utterly betrayed by him, my so called friends, but most of all by my own body.

I am an artist, curator and writer, there is still so much I have to do.
I am sick of being strong and coping alone.
I cannot abandon denial, if I do it will have won. Won't it?
Last edited by FluppyPuffy on Tue Mar 19, 2013 9:44 pm, edited 1 time in total.
Reason: Split into clearer paragraphs for easier reading.
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Re: Hello, I am not really here

Postby denys » Wed Mar 20, 2013 12:36 am

Hi and :welcome: to the forum :wave: in answer to your final question/statement, no giving up denial means you are ready to face things and as such you will become the victor as you will be able to make the necessary changes to your life that give you the tools you need to fight.

We all fight everyday and it can become exhausting so we allow ourselves time to re-energise. Friends or lack of, most of us have been there too so you have my sympathy, include your children in your condition as childrens imagination can make things much worse in their minds. If they are older not getting information from you may mean they start to believe their father as thats the only information they have to process :yikes: :yikes: :yikes:

As for you ex, he doesnt deserve a second thought, if he can stand there and perjure himself in court :evil: :evil: :evil: :evil: :evil: for his sake I hope he never has to suffer anything like this, but for yours maybe just give it him for a couple of days :twisted: :twisted: :twisted: :twisted: :twisted: :twisted:
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Re: Hello, I am not really here

Postby Ennead » Wed Mar 20, 2013 2:24 am

Thank you Denys.
Denial means I have never really spoken to anyone else with FM and this is my first forum.
I guess that is a new direction at least.
Hey ho.
I keep thinking, why me? As a firm believer in 'what goes around comes around', I can only wonder at what I have done in this life or the last to warrant such punishment?
I do sound sorry for myself don't I?
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Re: Hello, I am not really here

Postby LouLou » Wed Mar 20, 2013 10:57 am

Hi Ennead

I think we all go through that stage of denial when we get our diagnosis. I had my FM symptoms for about a year before I got the official diagnosis and although part of me was relieved that there was a name for my pain and fatigue, there was still part of me that hoped the doctors would say it was something else........something they could fix. I spent a whole week in my bed crying and thinking the same things as you, "why me?" "what did I do to deserve this?" so you are not alone at all in your thoughts. In fact I still have those thoughts on a bad pain day.

You have taken a bold brave step to come on here and share your story with you and that is a positive step. Just because you are acknowledging what you have it doesn't mean you are giving in. It means you are being proactive in finding ways to live your life around FM. I joined this forum the same day I had my diagnosis and I could never have coped so far without it. Just for the simple fact that everyone on here feels the same pain I do, feels the same fatigue I do, gets fed up and down like I do. It helps you realise you are not alone.

Before FM I was really ambitious, had lots of plans, was developing my career in Finance then FM hit and all that went out the window. But my GP once told me that FM is life changing not life threatening and that really got me thinking. It's taken me about a year to get a routine and find things that help me, don't get me wrong I still have bad dayd where I do just have to stay in bed and rest. But I am still young, I still want to do and achieve things and you still can with FM.

You say you are an artist/curator and writer, they all sound so creative and interesting. How are you finding doing those things still with FM? I find that if I pace myself in whatever I do most of the time I can get things done and achieve something. It may take me longer to get there but I do in the end.

As for your ex, I totally agree with denys, he in't worth your time and mind space.

Sorry for waffling on a bit I've gone a bit foggy now. I just wanted to let you know you are not alone in your thoughts and feelings and that we are here.

Hope to chat to you on here soon.

Lou
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Re: Hello, I am not really here

Postby FluppyPuffy » Wed Mar 20, 2013 1:31 pm

:welcome: to our little sanctuary Ennead :cow-wave: :cow-wave:

You are really here, you've found your way to place where there is support and understanding as well as being full of all sorts of info and advice, plus a little light relief to try and help you thru the Fibrodays :bear-dancing: :bear-dancing: :bear-dancing:

I'm so sorry to hear how things are for you, I too spent far too many years hanging on to denial as it seemed the best way for me to deal with what was wrong and happening to me. Unfortunately it doesn't work, as I know to my detriment :facepalm: :facepalm: I ended up with a whole host of additional problems which, as well as adding their effects to how I was, contributed to changing the type of person I was. I eventually started to get the right kind of help and very slowly things have improved and are now much more manageable, altho far from being where I would want them to be.

You've taken a huge first step in sharing your story with us, and another positive step in making your list of helpful numbers. Hopefully the next one, talking to your support worker about things, will be that little less daunting for you to do, and from there you will start to find your way along the path to find how to live with your condition.

Sadly most of us have lost contact with people who we considered our friends thanks to this condition. For me, it says far more about the type of people they are rather than it does about me. The few people I do have contact with now are the ones who have taken me for me, illnesses, conditions, warts and all. It took a while, but it has finally helped me realise just who is important to me, and if someone can't accept me as I am, then they are not the kind of person I want to be associated with these days, esp with my reserves being so low at the best of times.

I've no advice about your situation with your son I'm afraid :( :( It's not something I have encountered in my life so can't even begin to imagine just how much it tears you apart having to see him under these influences :grouphug: :grouphug: :grouphug:

I'm sure there was more I was wanting to say, but I'm not too sparkling myself today :( :( :( :(
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Re: Hello, I am not really here

Postby denys » Wed Mar 20, 2013 3:16 pm

No you dont sound sorry for yourself :nono: :nono: :nono: :nono: you are having to come to terms with something huge. As for why me, I started that and then turned it round, why not me :?: :?: :?: :?: :?: same question just the other side of the coin. I believe no-one has ever gone through life without making a few mistakes etc.

If we were perfect we would be robots not humans, we have emotions that sometimes overwhelm and lead to us dealing with situations in ways that we sometimes regret. That doesnt make us bad it makes us normal and so the fact that this condition has raised its ugly head is no reflection on you as a person. If I were you I would stop looking for a reason and start to live despite the condition not because of it :-D :-D :-D :-D :-D :-D :-D :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
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Re: Hello, I am not really here

Postby Ennead » Wed Mar 20, 2013 5:59 pm

Thank you to everyone for your great messages. It is great not to be judged.
If only everyone else could react this way....
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Re: Hello, I am not really here

Postby shazq » Wed Mar 20, 2013 6:37 pm

:welcome: to the forum Ennead :wave:
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Re: Hello, I am not really here

Postby Ambercatgoddess » Thu Mar 21, 2013 9:43 pm

I just joined today out of frustration from being ignored basically by my GP's of which there have now been four. They insult me everytime i go. They do this by telling me that there is no magic pill, no cure all. But the hardest part to swallow is realizing that my limitations seem so large. I overcame so much already in my life how dare this happen. That is how I feel. I mean god homeless, raped, ex military, wheelchair bound determined medically unable to walk ever again. Well i do walk now, lost over one hundred pounds and now this..it is hard to cope at times.

I take on too much and rest too little. I try to explain to people that tell me *I hope you feel better* that this is not going anywhere. They do not understand. Ever feel like the majority of your day is you explaining yourself to others? sigh.

But I do understand. I understand how you want to fight and never give in. It is a very hard thing to accept.
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Re: Hello, I am not really here

Postby LouLou » Fri Mar 22, 2013 10:51 am

Hi Ambercat

:welcome: to the forum.

I am so sorry you are having somany issues with GP's. So many of us have faced that fight throughout our Fibro journey so you're not alone.

Like you, I tend to do too much and not rest enough, I'm getting better at the resting part but as I'm still quite young I struggle to cut back as I still want to do things.

Well done for your progress on walking and losing weight that is just amazing.

I hope to chat with you and hear more of your story soon on here.

LouLou
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Re: Hello, I am not really here

Postby sweetie pie » Mon Mar 25, 2013 9:36 pm

i am also in denial its very hard but i just hope one day we will have what the ladys above have,very good advice so will work on that,it might take awhile but we will get there,best wishes issy :-)
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Re: Hello, I am not really here

Postby LouLou » Tue Mar 26, 2013 1:18 pm

Sweetie pie/issy

Don't worry about being in denial, we have all been there and I still sometimes try and carry on and pretend I'm ok. It's taken me a good year/year and a half to get myself to where I am today with regards to coping and we all have our own little ways of dealing and coping with things.

You will get there hun the main thing is to remember to put yourself first (easier said than done I know lol) and to remember you are not alone.

Take Care
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Re: Hello, I am not really here

Postby sweetie pie » Thu Apr 11, 2013 3:07 am

Thanks loulou for your words it means alot,hope you are fine today and not in to much pain,yes it takes time but will get there,best wishes XX
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Re: Hello, I am not really here

Postby Iceskatemum » Thu Apr 11, 2013 5:57 am

Hi Ennead & Ambercat goodess .

Welcome to our little FM world were we regulaly take refuge in the fact that no matter what, we have each other to support & help us through all stages of grief inc Denial. if you have a look at other posts you will see how each of us has at some point been exactly were you are .

It is perfectly natural to feel how you do as we mourn the the loss of the life we thought we were going to have and come to terms with the life we have now.

Have a look at some other post (type in the word or phrase you want to look for in the little search box at the top of this page ) hopefully you will get other posts on the same subject and will see you ar enot alone. Try and follow any tips or hints on how to cope with this stage of grief.

Good luck, take care and hope we will see you on chattering in the weeks to come.

Soft hugs
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