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Positive or negative?

TopkittenTopkitten Member Posts: 1,263 Pioneering
Today a friend on FB accused me of being negative. I posted this a little while ago. What do you think?

I often have people tell me I am negative. I would like to explain something.

If I go to bed and stay there the pain I suffer will stop completely. If I do not do this I must take strong pain medication to combat the pain which goes on 24/7.

Every time I wake up I have to force myself to get up and move about knowing the pain will get worse and knowing that if I didn't it would stop.

Moving around the house getting food and drink and doing things like coming on here but spending most of the day in my chair creates pain at the moan level. To go out raises that level considerably. Most days I go out because I choose not to give in.

If I go out, sit a lot, stay out for a short time and see few people I am at the shout level of pain. I choose to play games, move about talking to people, going to the pub and many other actions. This sort of activity pushes me to the scream level. I choose to do this also some days.

If I get sciatica (currently in both legs simultaneously) I do not lie down. I take more medication, walk with my legs as straight as possible, accentuate the limp and keep going. I choose to accept this as part of keeping going.

I never give up. I go through this every day and every time I sleep and waken. Am I not allowed to complain at times that I do this with no support at all and am constantly let down for completely trivial reasons?

Now tell me I am being negative!!!!


TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Replies

  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,347 Disability Gamechanger
    No you are not being negative.

    I will post some more this evening as I don't have time now, but wanted to respond.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    Hi TK

    No you are not negative, in fact you are very positive, you know what to expect from the actions you take and are prepared for the consequences. The pain levels you tolerate every day make you one of the strongest people. You actively try and support other people despite your own problems.

    Here is the problem. You expect from others the same as you are prepared to give and that my friend will always bring disappointment.

    Eveyone has their own problems which are more important to them than yours. They all want someone to listen to their woes and support them but the majority of people  have little left to give back.
    It can also be uncomfortable to listen to someone with genuine problems that you can do nothing about. I am sorry to say that you expect to much from other people. You have a giving heart but that is a rare thing in todays society, we live in a selfish world.
    I came to this reluctant conclusion, I give what I can with no expectation of anything in return and that way I am never disappointed.

    CR
     
    Be all you can be, make  every day count. Namaste
  • MarkmywordsMarkmywords Member Posts: 419 Pioneering
    The truth is the truth.
    However, non-disabled people don't want to hear the truth about bad things in life. I don't mention my problems "out there" unless someone else brings up health matters.

    What people are actually saying is that they don't want to hear about it. :/
  • Neil2017Neil2017 Member Posts: 158 Courageous
    @Topkitten

    Sounds positive to me as you trying to balance quality of life with pain management. 
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  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Ty all for the replies. I had a "you need to be less negative" message from someone, hence my post. Unsurprisingly she hasn't responded, not that I expected her to.

    It was in reply to something I asked her. I was fairly certain about a lady trying to get a response from me on new years eve. Normally I would just have acted on my own thoughts but currently I have a lady I can bounce things off. She agreed with me but then came the don't be negative message, lol! A lot of people think I am negative and I AM a pessimist by nature but they don't know me or what I go through. I have posted some of my issues there before and they have been ignored so I don't normally bother now, just felt I should on this occasion. I never post there what I post here though.

    I do tend to moan and groan here a lot but not as much as I actually feel like I could. Too much of anything is always too much. I do trust people here though so do post the worst of times instead of keeping it in. I do post the good times too, it's just that there are too few of them.

    I have never expected people to be more like me. I have been told I am fairly unique too many times over the years to expect that. I do like people to be open and honest with me though and, although I can be a bit harsh at times, I am always that way in everything. I do understand though that for some it is a very hard thing to do. Too many years of being "out there" where secrets are important and truth isn't.

    I know I will never get the support I would like. I think it unlikely I will even get the amount I really need. What upsets me is when I get none at all from the system that is supposed to provide it. I never expect help from people as such and am not particularly gracious when I do get some. I am too independent, too stubborn and too suspicious to believe that some just want to help me without wanting something in return.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,347 Disability Gamechanger
    @Topkitten What I wanted to say this morning was while I have a few disabilities pain wise I do not suffer pain anything near to the level you do. However there are periods when things get worse and what I don't mention to other people in general is how taxing it can be, not just physically but emotionally and mentally. 

    With regards to people not responding to posts, and this is from my perspective. Sometimes the sheer number of posts on here and lack of time makes it difficult for me to read through all the posts. Those I read if I have something to contribute I will, but sometimes even a short reply takes me time and sometimes a couple of edits which eats into the time I spend on here. There are times where I would like to go back and check with the person on how things are, but find it difficult to find the right post.

    There are times I would like to respond but however much I look at the blank box or keep editing a post to finally just delet it because I just don't have the right words. A good example of this is your post on suicide. As hard as I try to think what to say nothing comes. So the last few days I have logged on and looked to see if you have posted. Each day I am just happy to see you have. So please don't think that a lack of response is a lack of interest or care about what happens to you.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Topkitten How are you?  I know all of us in the community have had negativity in their lives.  I hope and pray that we manage to cope and start to feel more positive.  Life is never easy for all of us and we all strive to live the perfect life.  I have seen your posts on several topics and how you cope with things I do not know.  I have down days and try to be positive.  What helps is sharing our lives.  Helping each other with struggles.  No one knows how each of us are feeling.  That is why I begin with how are you?  I know you are in pain trying to positive and upbeat for the time I am here talking.  I am sure that person who described you as negative has probably no idea of you inside.  The feeling, emotions you are going through.  Have honesty and be open on themes that all of us try to be understanding.  I was reminding myself that I have bad days but I stay positive and have things in place to ease and comfort me through the day.  I have my life at the end of the day and no one should be critical of the way you live.  I will accept views and opinions that I take with gratitude.  I hate it when people who do not understand start to have judgements.  My mother was all those things, critical, overpowering, controlling and look where it has got her and what has done to people that she knows.  Especially family.  In the end we have to live our lives the best we can do.  It is one chance, one opportunity.  We need to get that and grasp hold of the truth.  People do not know you do not understand the truth.  I wish you the best and hope to talk to you soon.  Take care my friend
    Community Champion
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  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Ty for the comments @Geoark & @thespiceman .

    Actually knowing that immobility would take the pain away makes life harder to deal with. In some ways I wish I didn't know.

    I get through a day at a time at the moment, waiting for the next disaster. Fairly non-functional though. I keep saying to myself I must do more but all I have done in the last few days was to take the decs down this morning. If itt hadn't been for my son over xmas I doubt I'd have made it this far and he is the major reason I am still trying to do the things I must rather than copping out again.

    I am going to go out this evening to see if that lady is really interested in me, though I suspect she isn't it was just the booze. Still, if she agrees to meet for coffee then I might have something else to look forward to. We shall see.

    Yes, I keep posting but am sleeping too much.

    I had an old tattoo reworked yesterday and am quite impressed. I have other ideas in that line so will book something up next week once I have a picture to show them of what I want. My son did agree to meet me there but he didn't turn up, which was disappointing. Each disappointment is hard to get over but at least no more major problems lately.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Topkitten Thank you for reply.  Yes I see reading today few things you have said good vibes.  I believe some or more positivity.  A lot to look forward to.  There always be disappointments.  Life is like that but I was glad to talk to you and express the positive side of life that we all live.  I think also at the start of each year especially this month.  We want to attain so much.  New me, new diet ,fitness and well being.  Make promises to one self will do this and that.  Have a plan .  I was one of those and all shattered into pieces.  Understand this I have not made any plans just go with what I feel I am comfortable with.  I will always plan though for shopping days and anything I need for house and for me.  Looking at each day well does it matter if house work not done today.  Lacking in energy.  Give myself a chance do it another day.  I usual do housework weekend you see.  Decided to do little bits during week.  It is great these little alterations in a schedule.  Same with what you are doing.  Great minds think alike.  Big bore for me is TV at the minute  so why not turn it off .  Listen to radio or CD soul night  Come on here and chat weekends.  Different times on week days.  These are positive things and we can learn from each other.  Talking about pain can not sit still and lot of restless legs tonight and on it goes.  Big problem for me if I want to watch anything my legs start pain and start twitching and hurting.  I have go to bed to lie down.  So I can understand you issue with pain a little bit.  Hope everything works out weekend and speak to you soon
    Community Champion
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  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I'm not so sure about the good vibes, not from me anyway. To me the start of the year is the start of another year of problems and disappointments. I see nothing positive in it.

    I did go out this evening which made a nice break but the lady didn't turn up which was disappointing. She had replied initially she was going and I didn't say I was until a day or so ago. She probably felt it better to avoid me rather than have to let me down. Still, as I said, it wasn't unexpected as she is working and healthy and I don't make a good catch. It was probably silly of me to read that much into it under the circumstances and, if I am going to date, should stick to my own kind. If I was healthy things might have been different. I intend to go back to the disability centre on Monday and that will be my first use of a wheelchair in forever. I expect to be in extreme pain Monday night and probably end up taking too much medication fighting it but that's unfortunately what I have to go through to hopefully get help and I am not prepared to keep cutting my life into pieces to overcome what should be fixed. I shall see how things go but expect it to be my first call for help. Have been having a lot of pain issues already but have gotten so used to suffering unnecessarily that I didn't bother taking action, something I have to remedy.

    Anyway, it's late and, despite not being tired (again!) I really should try to get some sleep so I shall try and be back later today most likely.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Topkitten Sorry about what happened do you think you were expecting too much.  I thought reading the last post you sent every thing looked good.  What do I know?  I think about your situation and then not being self centered about my own.  Maybe just give some time for your self.  You are important not that lady.  I had this myself a while ago thought about not going but I did.  There I thought for once me expecting too much.  At a glance should have stayed at home.  Got more response and stimulation from the time spending on here.  Chatting and talking.  That has been moments I need to talk and you are there giving me constructive advice.  Not only me though the community is sharing and listening to you.  All of us yes have had disappointments especially as I said this start of the year.  You are not alone in this.   I hope to speak to you soon take care my friend
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I struggled yesterday. The patch barely lasted 2 days and I am so far off my regular bookmarked changes I am beginning to lose track of when I should change the damn things. Consequently I spent all day until about 7pm sitting in my chair or asleep in it. Another day completely wasted when I had plans to do something positive. Such waste just gives the suicidal thoughts power over me and make it harder to resist. The fact that I have to wait so long to see a doctor is making it worse because I cannot even discuss it with someone knowledgeable.

    I know I am suffering more than I should be but not enough to start taking too much medication, therefore I cannot really use the 111 service yet. Life is complicated enough for me without the confusion of medication which doesn't seem to be working as it is supposed to.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • feirfeir Member Posts: 396 Pioneering
    i'm quite negative at times, wouldn't say i'm a pessimist exactly but maybe a realist.
    if someone accused me of that i'd just ask them what the problem is. why do people have to be happy all the time? and then i'd ride off on my unicorn over the rainbows and cloudswhere the leprechauns sing happy tunes with the care bears. yeh... :D
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