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learning to live with whats left

strakerstraker Posts: 1,851
edited 06/11/2012 - 8:26 AM in Depression and Coping
hi every one
i have been in pain now for about 13 years in all.like most of you that will read this .i have done the operations .the back clinics/the physio/chiro.pain management.etc! i have also taken a multitude of drugs to help with pain.i now take oxycodone and i use the acticare unit.
my point
for the last 7 years i have been fighting the illness and making excuses and thinking that there will be something around the corner to cure me!and it has been killing me .i can't do the things that i once could.but now i know that its alright .i don't try to be the man i once was .and now i feel loads better.i have had to set my goals a lot lower than before..example..i used to swim for an hour 4 x a week can't do it now .but i could manage 15 mins 2x a week..i used to walk the dog 6 miles a day .no chance any more.but 20 mins a day is a possibility.can you see what i mean?i know that is dose not sound like much.but when you have a long term illness just doing a small amount of something every day.will help.
i am speaking from experience for the last 5 years i have sat on my arse and done the bear minimum.in life.i have blamed it on pain {not being able to do anything that is} but i was in the state of mind that i had to be the fit person i once was .and it had taken me years to accept this
i hope this makes sence to anyone that is kind enough to read it.hears to a new begining 2009 here we come!!
STRAKER
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Comments

  • Thank you for your post,straker. It hit home with me today. (I'm having a pity party in my easy chair.) It's been almost a year since my cervical problems began, and I have to be honest to say I have blamed my complete inactivity on my cervical problems way far too often. I know I can't do all that I used to be able to do, and I'm having a tough time with it at times. I am so much better off than most of the folks here. I'm one of the lucky ones. Thanks again for your post, and God bless you. --Mazy
  • Good for you! your finding the way through and winning!
    thats the essence of movin on and ahead!
  • dilaurodilauro ConnecticutPosts: 9,740
    We all have choices

    To sit and feel sorry for ourselves, mope and do nothing

    OR

    We can make the best of what we have and enjoy every day

    My choice is clear to me!
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • That's a good way of looking at it. Do what you can each day and make the most of things. Making goals that are never reachable is true. Sometimes we set ourselves up for failure by going too far. The little things we do count for so much. I just made out 4 CHristmas cards to send and I know the receivers will be happy with them. I kept on saying I don't have time with all this pain, but I made time. I'm really happy just to do that little chore. Hope you have a great day. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • well done !! as you say ..in the past i HAVE set myself unachievable goals then failed ..miserably! but it has taken a well educated man {me} a long time to accept and achieve this.keep on keeping on !!
    STRAKER
  • Thanks so much for your post!! It's so easy to get depressed about what we can no longer do. As you say, we need to concentrate on what we CAN do. Leaves you in a much better place emotionally!

    I WILL set realistic goals for myself in 2009...if all I can do is 10 min. on the treadmill, it's okay. Maybe increase it by 5 min. each week or so.

    Really good post!
  • Many list here the things that they cannot do and measure what they used to be able to do as a determinant of how they should be able to perform now and for a period that is understandable. It takes disproportionate effort to climb our own personal mountain every day, only to wake up at base camp once again.

    We need sufficient acceptance of the pain to foster realistic and attainable goals and it is not in always achieving but in the doing, goals are only facets of bigger objectives, small attainment help confidence and we try to keep pace with what we think we should be able to do rather than reality. If we attack it the pain increases and we deem that goal unattainable, it is in the amount they we have accepted where the fault lies and not the overall objective, if we broke it down into smaller objectives, this has the notion of failure where in not achieving out set goal we give up on the basis that we think we cannot do this. Anyone as us who lives with pain every day can achieve any goal given the right encouragement support and guidance it is within us all, we exceed the necessary capacity of survival every day so realistic goals can be done.

    Having to live with what is left is the only option for some and it is here that we need to find success however hard that is, trying to achieve what we once did is a recipe for inherent failure disappointment and frustration. To be fair you have to find what is unachievable to create from that what you can do and accepting the minimum is never easy, for the most part this is a head game and winning against that little voice in our head, what our clinical psychologist called an under used resource. In our case, less really is more and we have to stop before that illusive pain threshold starts again where ever that is for us as individuals every day. At least you are living the reality and not chasing disappointment and with you good attitude will get through. The key is to reach the optimum route of performance where we can exist just. He good days and bad, good for you, you have realized you could have tried harder and that is you new objective be proactive and although you may never repeat activities you once did replace than with something you do like and can do and helps lift your mood and confidence however small.

    My goal was to cycle up the biggest hill I could find, it has taken a year to reach my goal through the good and bad times, I have done it as well and through the tears shown myself that things are achievable with support encouragement and appropriate technique, to what actually can be done. We need to look at the bigger picture and achieve every day, 30 sec goals that is what we need and then move on.

    Straker, you are the epitome of what can be achieved by many with determined effort and a good talk to yourself, you are learning who you are and what is achievable and what is not, you are working towards the right mindset to achieve your 2009 goals and we are all here to help you help yourself. Accepting your responsibility for moving forward is never easy and you are doing well, up the pace within your time frame

    Write your goals down, what you will do by when and good luck, we are all right behind you, lead on ! John =D>


  • I needed a reminder today to stop looking back. I have said over and over that I want my life back to the way it was on Sept. 14th before a semi drove me into a rock wall. Now I've learned something today. That day may never come again but I still have some very positive things that I can still do like walk for one. I've had my fair share of pity parties in the past few months but like you this is a new year full of new hopes and a new found determination to regain what I can and stop missing the rest. Thanks for the inspiration. I really needed this today.
  • hi straker,
    i hear ya i hear ya loud and clear!!!
    i have set myself some goals for 2009 also.....main one is to get up off my backside and try to have some normality in my life again!!!!
    i have started a diet and i am out walking everyday so far!!!
    so basically so far so good =D> =D> =D>
    in reading this post of yours it has given me the incentive to keep it going im glad to see so many making an effort for the new year,
    keep it up everyone.

    LOVE P
  • I have grown to have a general acceptance of how things are for me. I still go through periods of sadness and frustration over this disability. But now I get fulfillment in participating in these forums, and focusing on other people's problems. I don't know what I would do without this site. I know that I'm not alone in this thing.
  • Having had increasing pain for 5 years with various operations, drugs, treatments, exercise regimes etc. I finally took the step of having three level replacement lumbar disc surgery a month ago.

    All I can do now is lie flat in one of three positions (moving from one to the other takes forever and is excruciating). With help I can walk a few yards, but getting from lying to standing is unbelievably painful - feels like my back is breaking.

    It was hoped I would have made more progress by now so I'm terrified that this is as good as it's going to get.

    An added pressure is that I had to fund this surgery myself (over £40,000) and I'm currently paying for carers to come in every day and wash me etc. If I don't get back to work soon I will lose my business and my home.

    What achievable goals can I set myself, and how do I shake off this crippling depression?
  • first i would like to wish you a healthy new year.also i would like to say how sorry i am that you are in so much horrendous pain..trust me i do know how you feel.as i write this i have been woken up {again at 3 am } in mega pain.what i meant when i wrote this post was .even if you spend 1 extra minuet on cleaning your teeth or read a page or so on your favorite magazine.or even if things are so bad spend 10 Min's lay on your back deep breathing .anything that you do today that you did not do yesterday.because you will feel better for doing something rather than nothing.again please don't get me wrong there are many days when i can't do anything even showering has me crying in pain.BUT BUT the difference now is .i wont let that beat me .if i need to have a cry i will have on ...and not feel stupid or guilty about doing it.as i have said .i am awake now ..whilst my wife is dreaming about bunny rabbits and butterflies!! .she will get up at around 9am .jump in the shower and be full of life and all happy and smiley.were as people like you and me wont be ..right?.then we will spend all day feeling like sxxit .sometimes its hard not to be envious of a healthy person .but we must not do that.trust me i know how bad things get pain is like having the grim reaper on your shoulder even when you try to do something normal {like shopping} you will get home and feel like sxxit and wonder why did you bother..my point Janey is this .if you feel like you can do something then do it.if on the other hand DONT BEAT yourself up if you can't do anything.that is not easy i know that ..it has taken me a long time to realise that .at 42 i did not want to admit that my life had changed for the worst.{who would?!}.there are many things that i would love to do but i know that i am unable to do them anymore..Janey hun..just do what you can when you can do it.if you ever want to email me .feel free.tony.beer1@googlemail.com.
    wishing all at SH a healthy new year and give us the strength to cope with what this year will inevitably throw at us.
    STRAKER
  • tony.beer1@googlemail.com
    not freetony.beer1@googlemail.com !!!!
  • I'm new to all of this pain and I don't know how many of you have gotten through the many years that you have. But just hearing you have set realistic daily goals helps newbies to what is quickly becoming chronic pain is so helpful. So tomorrow. I'm going to clean one room in my house and stop regretting that the bed didn't get made.
  • My problem is that since the operation I haven't been able to do anything I hadn't done the day before. I can't shower - I have carers come in who wash me. I've pretty well lived in a bed for over a month (hospital bed for 10 days, home bed ever since) and there doesn't look like any hope of that changing.

    Except that when my business fails and I can no longer pay my mortgage (massively increased to pay for the surgery) I lose my home too. And my daughters lose theirs.

    I don't have a partner, I've been a single parent for 10 years. My daughters are older now - 19 and 21 - and live at home, at least for as long as we have a home.

    I'm not just mourning the things I could do before back problems - I have long since accepted I can no longer play in orchestras, travel, drive, go out for meals, do the work I want to, have any kind of a social life. That's been the case for 5 years. But now I can do nothing. I can't dress or undress myself, can't shower myself, can't get my own food. I'm completely reliant on other people, and I stand to lose everything I have.

    And yes, the constant pain is, as for all of us, wearying. And prevents any kind of proper sleep, and the nights just seem endless.

    I've always been a cheerful, optimistic, hopeful person - it's what has kept me going through all sorts of traumas - but I feel I have run out of hope now.
  • I just want to say to you and the others here that you're all my heros. Never give up or give in. Keep on Truckin as we used to say in the 70's. Can you apply for disability? I wish I was close by then I could come visit you and help take care of you. Do you have neighbors or friends that could come read to you, play cards, watch movies? I admire you. Do you take any vitamins...specifically calcium with vitamin D. What is your medication regimen. I'm not a doctor and these are just suggestions from what I've learned.Also are you on an antidepressant? My brother Ben(Agriman) used to be on here and introduced me to this site. I hope I can be of some help to you. Take care.
  • I live in the UK and despite what you might have heard about the NHS, if you pay privately (which I had to as this operation isn't funded by the NHS) they ncompletely turn their back on you.

    I have a really poor response to drugs - whether pain killers, antidepressants, sleeping tablets, even antibiotics - I seem to get all the horrible side effects without any of the benefits.
  • As I've stated elsewhere, I'm no further forward than I was when I posted here.

    Very difficult to be positive in the face of no progress at all.
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