I'm fed up !!!!!

I am sick and tiered of my kids and parents just not understanding what's going on with me and my pain. I have CRPS and have had for nearly 3 1/2 years but it feels like forever. I want my old life back ! I miss running and teaching boot camp , I miss helping peoe get fit and I miss being fit and healthy too. My family thinks it's somthing that will go away in time and I'll be all better and then they won't have to watch me not being able to do things for myself. I am so mad , I am so fed up , I'm sick of having pain everywere and it hurting to use my body for the most simple tasks.

Sorry I had to vent ..... I want to scream shout and .... !

21 Replies

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  • Feel free to rant if it helps to get it out a bit and why not we all do it mate. I fully understand what you was saying people dont understand and that can be so frustrating when your racked with pain and not being able to do the things you used to be able to. It is not only frustrating mate but its the boredom as well when you cant do your hobbies like you used to or even just get out and about because of the pain. But remember mate on here we do understand what your going through as we are going through the same sort of things as you. So if you need to talk or just vent a bit. On here is a good place to go it does help just to talk and get it out sometimes. I know because it has helped me and i have only been going on Pain Concern for a week now and it has helped me just to talk/vent and get it of my chest. Best Wishes and Good Luck mate. Poohbear'

  • I can imagine it can be boring but there are new things to get involved with on the Internet. So much to learn. In the past it would have been ten times worse without the Internet just at our hands. I'm grateful for that.

  • I know what your saying mate if i did not have the internet i think i would of died of boredom all ready. I agree that with the internet it makes things better i would be lost with out my Lap Top and Internet Connection. As i am not used to having all this free Time on my hands Best Wishes mate. Poohbear'

  • Ooooh, I do understand...been there, got the T-shirt. Rant away, whenever you feel like it. It seems very difficult for people that don't experience pain to understand what it's like to experience it (especially if it is constant) I honestly don't think anyone will understand unless they experience it. So, keep coming on the site and yelling your head off:) All the best to you :)

  • Sometimes the kids are scared to death of losing you little by little. They don't understand pain because they don't have it. It's like explaining the color Periwinkle Blue to a person who's been blind their entire life. The kids especially don't want to lose you. Slowly you're fading away and distancing yourself. Sit by them. Don't complain about pain. Observation is quite enough for them to know that your body hurts severely.. have a big crying party for one when they are gone. I have one about 2 times a week on a good week. Let them

    see you reading books or talking on the phone to someone about something other than

    pain. It will reassure them that you are trying. If you have to talk about pain, close the

    door in your bedroom and call a friend, use the computer, see you right here..on HU..

    I get pain twice a week on average that makes me look forward to death and

    the peace that it may bring..Those are the times when I sit in my room alone

    and listen to music, cry, pray, over medicate. and I say that because I may take

    a half pill extra = borrowing from end of month amount of pills left..

    Get on here and have a rant, a cry, tell your frustrations because you may very

    well be our only outlet as well. In person, no one wants to be around someone

    who is not coping with pain well *even psychologists are paid, look closely at

    their watches so we get out of their space for after that hour. It's just no fun

    to be in the presence of pessimisticism...Every One of us has days like this

    every week or more. =)

  • I think you should be more honest with your kids. It's also not fair to

    not let let your kids know the truth. Sure, they don't need to hear it all the time. But doing a show to hide your pain is not very nice for them. Kids pick things up and they will know your are being deceitful about something. Share with them, make it normal. It's part of you and when they are older they will have more compassion for people who are just like you.

  • I feel that what we go through is similar to grief. There s the denial at first that this is happening and is possibly for life, there's anger that it's happening to us and noone seems to understand, there's sadness, guilt and pain at the loss of our old way of living and the loss of independence,friends, and patience of our families and ourselves. Then comes acceptance and we adapt. We reflect. Grief takes people in different ways and loss can take a long time to come to terms with. Ranting is absolutely normal, healthy, understandable and a necessary part of living with your condition. So rant away! Nearly all of us can empathise with you, and share this frustration and anger. Just don't let it rule your life. Tell your family how you feel and what they can do to support you. You may be surprised to learn that they have been wondering just how they can help. Its hard for them too, so perhaps they can suggest ways you can help them deal with things too? I know that, even though they don't really understand what I'm going through, I would be lost without my family. And to be honest, they can all be quite annoying and would still cheese me off if I wasn't in constant pain.! We are just human after all :) x

  • hi sweet pain is a very hard thing to deal with i my self used to be very fit and used to do weights and dead weight lift and worked up to the age of 37 years im now just turned 47 i feel like yourself but we all can help each other im here to help and talk i understand all about kids and familys not understanding i have had years of it myself i have tried to do things like yourself and failed im so sorry to hear of your problems but please dont forget we are here to help and if you wanna rant please do so as im here to read and listen my kindest regards to you david x

  • Thank you for your wonderful words David, there much appreciated.. I will definatly be bending your ear again real soon .

    Jane

  • Firstly show them this then get then to try the experiment.

    youtube.com/watch?feature=s...

    Then print this out and give it to them

    Please read my life with RSD/CRPS

    These are the things that I would like you to understand about me before you judge me.

    Please understand

    that being sick doesn't mean I'm not still a human being

    I don't feel well often times and I might not seem like great company, but I'm still

    me stuck inside this body.

    I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.

    Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.

    Please Understand

    the difference between "happy" and "healthy".

    When you've got the flu you probably feel miserable with it, but I've been sick for years.

    I can't be miserable all the time, in fact I work hard at not being miserable.

    So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.

    Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.

    Please understand

    that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.

    Imagine an athlete after a race. They couldn't repeat that feat right away either.

    With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.

    So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.

    Please remember

    that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.

    Please understand

    that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.

    Please don't attack me when I'm ill by saying, "But you did it before!".

    If you want me to do something, ask if I can and I'll tell you.

    In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

    Please understand

    that "getting out and doing things" does not make me feel better, and

    can often make me seriously worse.

    Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

    Please understand

    that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.

    Please understand

    that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.

    It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.

    Please If

    you want to, you can suggest a cure to me, but please don't act as if

    it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.

    If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.

    There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.

    I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

    Please understand

    that getting relief from an illness like this can be very slow if not imposable.

    People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

    Please understand

    that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.

    I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.

    THANK YOU!

    For yourself try these.

    openfocustraining.co.uk/exe...

    paintoolkit.org/assets/down...

  • Wow that is fantastic advise.

    How long have you had pain in your life ?

    Thanks again, really thank you

  • RSD Started in right hand June 18thh 2009 spread up arm to elbow April 2011when specialist touched arm with sensitivity pin. Started both legs Nov 2011 when mty toes were trodden on.

  • This is brilliant & thank you for posting it. I will be getting my family to read some of it & they have no idea of what CRPS is really like. They have a little sympathy & then expect you to 'pull yourself together' ha bloody ha, if only!!! Thanks again

  • Please try and understand it from others view too. They can't and

    won't ever be able to understand this kind of pain. I had no idea abut it.

    I think we need to go easy on people who are just trying to help but they don't understand. I don't judge what hey say. I just smile and know they were just trying to care. That's kind.

  • Sounds tuff. I notice you write my 'family thinks'...

    You would need to ask them what they think. We can't see

    into another's mind.

    Why not tell them how you feel and tell them that you use

    places like this because of how pain is effecting your life.

    Good luck.

  • Hi there I have tried to tell my family but they just say yeh ok !

    And I'll say to them do you understand I can't do certain things now, it's not that I'm trying to get out of doing them I just can't do them! Yep is there reply but they still don't help out (enough)

    My 20 year old is special needs and really can't stay on task to help me but that really annoys this three sisters because then they don't think it's fair that there doing more.

    I'm trying to be more positive but I'm feeling crafter than usual at the moment. Lots of bugs going around I aupoae.

    Take care and thank you

  • it almost feels like you are still trying to have a body that can run boot camp activities. That is past. You have trained with your body and that knowledge should be still there somewhere. You should be able to re-train with your body to do things differently. Study how you do things and look to see how you can do this more efficiently using gravity as an aid instead of fighting gravity.

    Ask yourself the question when doing an activity: "Am I putting too much effect into this? Can I do this activity with less effort?".

    You ability to get people fit should still be there, however you need to look at how can I get people with health disabilities more functional and more mobile.

    There is a saying: "As one door shuts another door opens. You just have to find the open door."

    Hope I was able to make a few helpful suggestions.

  • I'm in the same boat chawne, 30 years in the gym, 6 days a week, years ago I was training well hardly any body fat 16 stone of good muscle and then my right elbow gave up to arthritis , I was in agony. Now I struggle to stay awake with meds I'm on and I'm being blood tested for chronic fatigue , can't beleive it , after all the effort I put in to stay fit and strong I end up worse now than someone who never looked in a gym. You aren't alone, though we feel it.

  • Hello. This sucks! I do feel for you.

    It would be wise to show your family this post!

    I also think you may want to scream for real! Go into a field and do it. I know

    I can't wait to do it! I miss the things I used to do but that is the past.

    You and I are not dead, so we still have things to do. New things. I hope

    you can find new enjoyment in life and learn to live with with this pain.

    I think it starts with letting the old you. Grief is painful.

    Best wishes and make sure you go on a SCREAMING trip!

  • Thank you, i will go up to the mountains and scream my lungs up.

    Have a merry christmas

  • Scream shout break something (not you lol) do what you need to to get the anger out, I have been known to just scream at the top of my voice when no-one is home or shit myself away which in the long run doesn't help. I know how you feel I repeatedly get comments like , oh are you still like that , I thought you would be better by now. Sooooooooooo frustrating!!! But that's their issue not yours I tend to ignore it now we'll I'm trying hard to.

    Most frustrating is when sport was our life . Now it feels like a distant memory!!

    Rant all you want we understand!!! 😋

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