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Old 06-10-13, 07:59 AM
tudorose tudorose is offline
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Feel so disconnected and that I don't belong anywhere anymore (long)

I've been staring at the screen for ages now trying to work out what to say. I feel so disconnected. I feel like I don't belong anywhere anymore - here - anywhere.

I want to reach out but can't seem to find the right words.

Life has become about fighting pain and fatigue. Not much of a life at the moment. The last 4 months have been really tough. Gone from thinking that I had RRV for the last 2 years which was something that one eventually recovers from, to thinking I had lupus which was just awful to getting dx with fibromyalgia which while is heaps better than lupus is not going to go away like I thought RRV eventually would.

I feel like my life has been stolen from me. Now I know what it is the final trigger makes sense - I did a blood donation and since then my life has been ******. I just never ever recovered. So many lost opportunities. DH and I wanted to bike around Europe but that's not gonna happen now. I can't even handle days where the temperature is 10 degrees C as a minimum let alone a maximum so it's not like I'm gonna be able to spend heaps of time on a bike in the northern hemisphere. I've never seen snow. I don't know if I ever can now.

My life at the moment consists of going to work, coming home, riding my bike for 6 - 7 mins a days on the trainer (pain management), having an epson salt bath, having dinner, watching TV and going to bed. If I'm lucky I can get by without needing painkillers (yeah I know they elevate blood pressure but there's only so much pain I can take). And that's a good day if I can get through that and still function at the end of the day. A really bad day involves not being able to go to work or get myself to work independently.

Weekends are spent recovering. All my interests were sporty outdoor interests but I can't do any of them right now. Can't go out for dinner coz there are too many things I can't eat. Got my birthday coming up on the weekend and I can't even have a cake. I have a 6000pc jigsaw on the floor which I'm too tired to do so it's not coming together very quick. I have my laptop but I can only use it so much before I get really tired. It's also why I haven't been posting much since coming back. Too tired to think and too tired to type.

I'm trying to do everything right but it's just not getting better. I'm finding the looks of concern and pity difficult to deal with. DH is so worried about me to the point that he's getting migraines over it. I don't want him to be worried sick.

And I still need to manage the ADHD on top of all this. I took something from the naturopath with chromium in it and it stopped my dex working. My managers noticed the first day and within 3 days I'd gotten myself in a heap of trouble by getting into a fight with someone and ended up in a room with them saying they were very concerned about me. I had to email the big boss telling him about what was going on in my life because he was so disappointed in me so I had to explain. I never realised how obvious my ADHD was that they would notice instantly if my meds were not working. What worries me about this is that when my meds don't work they say I'm not being myself. But the thing is that when the meds aren't working that IS me. Makes me wonder if I'm just a big fraud.

So I have no choice I have to keep taking them even though I feel like they contribute to the pain. I can't afford to get the sack. I just don't take them on the weekends and if I have sick days so that my body can get a break. Sure ADHD doesn't take a break but I'd rather deal with the ADHD than the pain.

I just don't know what to do with myself anymore. And I'm so so tired. It's taken me about an hour to write this and now I feel like I need to go to sleep. I'm not sure if feeling disconnected is coming from the pain and fatigue or and I just depressed again and in denial about it.

Sorry about the whining.
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  #2  
Old 06-10-13, 08:28 AM
SquarePeg SquarePeg is offline
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Sorry to hear you are going through such a bad time, I know how it feels. I had CFS (still have) and remember days when I managed to get to work and then just collapse at my desk for an hour, the effort it took just to get ready and get to work felt like running a marathon.

Itīs hard to give up on stuff that you love doing, but for the moment you need to re-evaluate your life and goals and accept that for the moment, the physical stuff will need to be put on hold, maybe for a long time.

I think I have posted before that you need to accept your limitations at the moment and work with them and not try to "overcome" them by pushing yourself. This will only set your recovery back and result in more pain and fatigue.

I know you really want to get better but you need a ton of patience and to take it easy, this is not a sign of weakness, you are not giving into your illness but working with it to achieve the best possible outcome.

It took me more years than I care to remember to recover sufficiently and to feel that I am halfway like everyone else, but Iīm still not. At one point I couldnīt remember a single day in my life that I felt well and that was depressing, I had no idea what it felt like to be healthy.

As for not taking your meds, me and my 2 teens are on meds and its pretty obvious when one of us has forgotten to take them (although in different ways). My son is the most obvious and his classmates can always spot when he hasnīt taken his meds, thatīs just the way it is

Hope you feel better soon, look after yourself.
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Old 06-10-13, 08:35 AM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Sorry to hear your in so much pain hugs.maybe ask your doctor if you could take have glucosomine and pro crit which rebuilds red cells in cancer patients for more energy.hope you can get some relief
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Old 06-10-13, 08:52 AM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Take it easy and look after yourself.... like SquarePeg says.... re-evaluate what your priorities are and don't long for a lost life.... it might take a while, but it's important to work out how to live sustainably in your present body.

There'll always be sadness about what you could have done..... however there's 2 ways to look at that....

1) You had an outdoorsy life for a while..... it's rare to have one for ever.

2) Who knows where your life might have gone if you went on the cycling holiday.... possibly under a truck.... or maybe your partner would have been the one under the truck.... so you've just saved his life!

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Old 06-10-13, 09:02 AM
amberwillow amberwillow is offline
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

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I want to reach out but can't seem to find the right words.
This... I feel this all the time.

I have nothing but (((hugs))) for you Tudorose... Some days just seem immmpossible don't they.
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  #6  
Old 06-10-13, 12:05 PM
josh989 josh989 is offline
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

My girlfriend has fibro and RSD, so I (almost) know how tough it can be. She "developed" it when she broke her ankle several times in the same spot. The doctors set the bone wrong or something, and it went downhill from there. She went into remission for a few months then got into a car accident and it came back full force. Shes tried a bunch of surgeries that try to trick the brain into resetting itself, but to no avail.

Hers was really bad and she was basically bed ridden for years because of all the medications she was put on. One thing that changed her life completely was medical marijuana. She tells me it's better than any pain medication shes tried. Apparently marijuana works on nerve pain in a very special way. She doesn't take any painkillers at all anymore other than what she smokes. I know it's not an option for eveyone but you should look into it if it's a possibility and you haven't already. Before I saw it in action first hand I would never believe it would've been that effective. Seriously.

She lives a normal life now though, but still has some bad days. For her the weather, temperature, and stress play a major factor in pain. Sounds like you're kind of new to this so you're going to have to get used to your body and how to manage your life from now on. The good news is it'll get better! It'll be easier to manage when you have more experience with your body/pain and are able to deal with it accordingly. You're going through the hardest part right now.. the "unknown", and the best way to deal with that is by talking to people who love and support you.

Your life is not over, you've just entered a new chapter. You may think it's scary now, but once you get to the next few chapters it might start to make sense. Anyone who deals with chronic pain becomes a stronger, more understanding, well-rounded, and humble person. I know it's hard but try to stay positive. Mood/stress plays a huge role in fibro/RSD pain.

Never say you're sorry for "whining". You aren't whining in the slightest! You're going through a huge change in your life and it's only natural for you to have a billion things on your mind that you NEED to let out. If anyone has a right to vent it's you. Stop worrying so much about how others are being affect by YOU and worrying about... YOU! Focus on yourself and what you need, because that's what's important!


I'm going to list a few tips I've learned from my girfriend. I know everyone's different but I might aswell list them

* Try to keep a healthy diet.
* Get enough sleep!
* Keep a daily journal. It helps to write down exactly how you feel and it's easier to organize your thoughts. It's also a really good way to go back and compare days/weeks/months and spot trends.
* Don't overdo it. Know your limits and try to stay within them when possible.
* Focus on yourself rather than everyone else. You can't make everyone happy. If you try, you're setting yourself up for failure.
* Talk about your problems and whats on your mind. Don't worry about being perceived as a "complainer". If anyone has the ******* right to complain it's you! Maybe join a fibro support group or see a psychologist if you think it will help.
* Try to stay positive. Life sometimes throws curve balls.... curve balls that smack you in the teeth. You're still alive and have people in your life that care about you. It could always be worse, right?
* Remember that it will get better.

Last edited by josh989; 06-10-13 at 12:34 PM..
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Old 06-10-13, 12:35 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Tudorose ......awww sweetie ......this is another time when I really wish I had a magic wand to wave away your pain ......you are an important part of this forum, and we're on your side .....vent all you want, and just come as much as you feel comfortable doing .....

....this is a huge thing to get used to, and the people before me have given you some great advise .....I just wanted to add my 2 cents about take care of yourself, and don't ask more than you can ......makes it hard to get any better .....

and if you have always been an active person ...this is doubly hard for you .....I wish I had better ideas .....

HAve you read the Spoon Theory ? .....

http://www.butyoudontlooksick.com/wp...poonTheory.pdf
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Old 06-10-13, 12:45 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

((((Hugs))))

Wish I had answers, but all I can offer is support.
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Old 06-10-13, 12:46 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

I can't think of anything more to say than what Salleh just posted!
you mean so much to us, I wish I could help.
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Old 06-10-13, 01:25 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Tudorose you have described me to a 'T' and all I can do is send you a warm comfy hugs and all the hope I can put on a plane. Focus on you, I think I know How lonely N empty
It can be. Remembering to stop N JUST breath is very hard to do in your place. and besides we care . You are O.K. lady no matter what shape you think you is in. hugs me is soo slow 3 people posted in the time it took me to get mine on the board lololol OLD fingers
and fast brain???

Last edited by dresser; 06-10-13 at 01:29 PM.. Reason: needed lolol
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Old 06-10-13, 01:48 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

I don't know you well enough to hug you in person, but I'll hug you here.

You are honest and not a fraud, whether you're with medication or without it. To the people at work, "you being yourself" simply means "you being the same as when they got to know you" - they have no idea what you were like years ago, or even what you're like on weekends, unless you choose to show them.

Serious long-term pain, and the depression that almost inevitably accompanies that, will make anyone "not themselves".

A colleague of mine went through a long period of unidentifiable chronic pain, lupus scare, diagnosis changed to probably FM, all triggered by an event, strangely similar to your situation (her trigger event was a car accident but whatever). I spent time at her house helping her with things, and though she never mentioned ADHD, there were impulse purchases stashed everywhere, things never put away, and a forgetful disorganized brilliant mind, so probably she had ADHD too. Not surprisingly, she ended up also battling an addiction to painkillers. I moved away and didn't hear from her for some time, but then a couple of years later I went back and met her again - she had made it through, kicked her addiction, somehow many of the major problems were resolved, her life improved greatly, and she was simply in far far better form (much more energetic, had lost the very unhealthy amount of weight she had put on, loved life again). I won't lie - it was obvious that the addiction (plus whatever had taken over her body in the first place) had taken its toll on her, and as they say "she was never the same after that" - but regardless, she was GOOD after it was over. Unfortunately for the purposes of this conversation, I met her that time at a public event and wasn't able to press her for details of how she had recovered so well.

Best wishes to you for your recovery from this mess, and to your husband as well while he does his best to help pull both of you through.

And a cyber-hug again.
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Old 06-10-13, 02:55 PM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Tudorose,

Ditto, ditto to what the others have said so well.

Sometimes all we can do is keep putting one foot in front of the other, and even doing that is close to heroic.

Let me add my cyber hugs to all the others headed your way.
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Old 06-11-13, 05:53 AM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Quote:
Originally Posted by SquarePeg View Post
I think I have posted before that you need to accept your limitations at the moment and work with them and not try to "overcome" them by pushing yourself. This will only set your recovery back and result in more pain and fatigue.
Yeah you have I'm not always good at listening. DH has this problem with me too.

Quote:
Originally Posted by SquarePeg View Post
I know you really want to get better but you need a ton of patience and to take it easy, this is not a sign of weakness, you are not giving into your illness but working with it to achieve the best possible outcome.

It took me more years than I care to remember to recover sufficiently and to feel that I am halfway like everyone else, but Iīm still not. At one point I couldnīt remember a single day in my life that I felt well and that was depressing, I had no idea what it felt like to be healthy.
Thankyou again. I really will try to get this into my head. I'm practicing this right now. I'm getting DH to make dinner while I rest.
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Old 06-11-13, 05:57 AM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Quote:
Originally Posted by kilted_scotsman View Post
Take it easy and look after yourself.... like SquarePeg says.... re-evaluate what your priorities are and don't long for a lost life.... it might take a while, but it's important to work out how to live sustainably in your present body.

There'll always be sadness about what you could have done..... however there's 2 ways to look at that....

1) You had an outdoorsy life for a while..... it's rare to have one for ever.

2) Who knows where your life might have gone if you went on the cycling holiday.... possibly under a truck.... or maybe your partner would have been the one under the truck.... so you've just saved his life!
Thankyou!!! This is so great Kilted. I think I might print your post out and put it on my wall.
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Old 06-11-13, 06:15 AM
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Re: Feel so disconnected and that I don't belong anywhere anymore (long)

Quote:
Originally Posted by salleh View Post
Tudorose ......awww sweetie ......this is another time when I really wish I had a magic wand to wave away your pain ......you are an important part of this forum, and we're on your side .....vent all you want, and just come as much as you feel comfortable doing .....

....this is a huge thing to get used to, and the people before me have given you some great advise .....I just wanted to add my 2 cents about take care of yourself, and don't ask more than you can ......makes it hard to get any better .....

and if you have always been an active person ...this is doubly hard for you .....I wish I had better ideas .....

HAve you read the Spoon Theory ? .....

http://www.butyoudontlooksick.com/wp...poonTheory.pdf
Thanks Salleh (((hugs)))

I have read spoon theory. It really rings true for me.
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