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just want todo nice family things without being in pain

Posted , 5 users are following.

sarapainfree
sarapainfree

so after being stuck in the house all week with the kids as it's half term decided Togo for a short walk around the shops big mistake within 10mins bang the sharp stabbing pains was back in my legs having to stop and hold on to the shelves in the Isle looking silly people looking at me like a freak why carnt I just do something nice without feeling this horrible horrific pain this condition is ruling my life and the time I get with my family

1 like, 18 replies

18 Replies

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  • kaz_40
    kaz_40 sarapainfree

    Posted

    Hi sarapainfree its so hard for us when we want to do things,but end up being in agony for trying to do something. weve all tried it but paid the price for it. fibro just doesnt like us having a life it just likes to make our life a misery. curl up with your children on the sofa watch a movie or play a game with them. whether your in or out your still spending time with them. its nice for us to be able to go out but pay the price when we do. hope you can understand what Im trying to say. brain not functioning great todayrolleyes flaming fibro. your not a freak you didnt ask for this illness nor do you want it hun none of us do. take care gentle hugs
    • sarapainfree
      sarapainfree kaz_40

      Posted

      thanks kaz just makes my blood boil that iv been in all week and first day I feel ok and go out without my crutches as don't want to be dependant on them I'm in agony within 10mins it's just so unfair u take care hun
    • mel77
      mel77 kaz_40

      Posted

      Hi Kaz:

      By the way, my name is mel and first time talking to you.  Here is the point.  Since I am quite active in this forum, I get emails from here indicating someone posted and is similar of the conditions that I have.  I can understand what you go through with pain.  Not only do I have fibromyalgia but spinal stenosis.  When I start to walk, my pain in my lower back really starts to hurt.  After a short while, it gets pretty bad.  Going to the market takes it's toll and have my hand on the area it hurts.  Maybe it lessens the pain but I feel dumb holding my hand there.  That is what I have to go through each day,  I used to be able to ties my shoes by bending over. Now I have to sit on the floor to put them on an tie them.  I would like  to talk more but is rather late and tired and time for bed.  I hope your pain subsides and feel better/  Take care.

      mel

    • sarapainfree
      sarapainfree mel77

      Posted

      I too have spinal restrictions and hurts just going 5mins to local shops also in my lower back know how u feel I have to stop and try bend and stretch bit hard tho on crutches ha x
  • deb97936
    deb97936 sarapainfree

    Posted

    Yes, in the very same predicament, hence why I now use an elbow crutch.  Not a convenient thing to use but boy when the crippling pain locks me up and cause's me to halt in my tracks, anywhere I am, at least I have my crutch to help my balance when I need to breathe through the pain and keep balance.  I actually have two elbow crutches and boy oh boy they do help alot!!!   BUT very inconvenient most times, especially in the supermarket, or trying to walk the dog on the lead anywhere..  

    If you haven't a walking cane or crutch, you could trying using one.  Took me 'a while' to actually get the courage up to go public using one...but then I realised it's got to be better than falling over as I have done a few times, or being locked in pain gripping the supermaket shelves which can be risky, or even the low freezer units they are handy to grab when near them.   

    BUT the very biggest decision breaker was the fact that I walk so awkwardly with my balance, and now also being so dam slow on my pins,  folk probably think I'm drunk or on something.  It's embarrassing.  Well the crutch helps my walking and keeping my balance, so instead of looking at a woman walking really oddly, now they see a woman with a crutch and they don't probably question anything in their minds about that.

    There are plently of second hand crutches and walking sticks on Trade me, Ebay etc ....or New ones of course.

    Yes I get the gravity and pain issues from head to toe in every limb and digit!  Even my eyeballs and tongue!  Noring pain, sharp deep pain, searing pain both inside deep and muscular/skeletal.  Drives me balmy most days... and I have to rest and even sleep now a lot more through the day than I used to!  I have no control really over my body. It controls me.  It's pain 24/7.  The Flares are another issue which is what I DO TRY TO PREVENT.. as they are out of this world, and devasting.

    BUT we survive!!   One has to pull out and hold on to the brighter moments, the so few minutes of 'less pain' when we are able to focus on something momentarily.  Take in and hold the beauty of nature and the good deeds that we hear about... draw from those experiences, make them colour up your day, that's what I do.  It's really all I have left to do, and when I'm feeling up to holding concentration and a paint brush, I paint..    :-)

    Just recently I got approval to attend the Hot Pools locally!!   The system is assisting and paying for me to go. I am feeling so so SO blessed!!  Oh the joy to be able to float and stretch in a big heated pool and the spa pool to!!   

    Take care sarapainfree..   keep looking at ways to distract yourself from pain issues, and pacing yourself ever so gently when you wish to 'do something'... 

    We do as sufferers, need to be mobile for at least 20minutes a day..  Up and moving to keep our circulation going for our muscles, regardless of most pain.

    HUGS xx

  • gill50535
    gill50535 sarapainfree

    Posted

    It really is a horrid illness, i'm 38 years old and can't do anything i used to, no drinking, no pub, no socialising at all in fact, i can't exercise or exert myself in anyway without feeling faint, resigned to a mobility scooter if i want to go anywhere of any distance. it has taken a long time and anger a tears to get where i am now mentally. the way i see it if a mobility scooter means i can get out of the house then so be it.. i will not feel ashamed, it's not my fault so scooter or solitude.. scooter it is. 

    I hope you find a way around your restrictions.

    take care 

    Gill

    x

    • deb97936
      deb97936 gill50535

      Posted

      yahooom whoop whoop... have scooter will travel!!!   Cool, absolutely!!   YES..  Where there IS an alternative, go for it, use it, go for broke and 'enjoy life' by all other means possible..   We should remind ourselves that there are plenty other folk living in a 'hard basket to'...BUT they also learn to do the same thing, find alternatives to be able to get round, get out, and do!.... 

      FACT is, we as pain sufferers DO fall into LOW Mood zones and get that way we cannot stomach or handle ourselves, rather I mean handle our S l o w n e s s, our Pain and stiffness publicly.  But there are the occasions where we can 'some day/s' push ourselves for an hour or two to 'Socialise, or GO out and DO something'....

      ME, on the day/s I want or need and can push to GET OUT,  I love to get out in the car and drive...taking in the day, the scenery, it relaxes my mind, it can help ease back some of my pain issues.  Sadly though I cannot in my own car as it's off the road.  I have a loaner car at the minute to help me get to appointments, shops, chemist, doc's, our winz system etc, BUT mainly the car is loaned to me by a gentleman whom the family have asked I take the car so I can call in on him from time to time and for any emergencys should he have another Stroke or such.  I very rarely get to travel as such unless I am taking the gentleman to his Appointments 250km away at the main hospital.  Love the driving, but I do pull over when I need to, to rest or sleep.  I have often wondered when the time will come that I need a scooter or an Electric wheel chair, and there is no way I could use my arms to aid moving the chair... Scary really when one thinks about things like this, especially when one cannot afford such luxury!...

      If the ACC here admitted my injuries and subsequant Chronic Pain, Poked Nervous system were the result of my MVA, I would naturally qualify for a Scooter, and or Electric Wheel chair when it comes to that stage... BUT sadly of course for me, ACC cut me off illegally, and it is to cost me several grand to fight them in District Court.  I know I would win my case hands down, and like many hundreds of other folk suffering from accident injuries and being illegally cut off claim, we sadly no-longer have the financial luxury to take the damming ACC to task in Court!...   So we all have to 'suffer' in life, whilst others are granted the luxury of Electric Wheel chairs and Scooters, ramps and other aids.  Unbelievable really....  And the ACC staff, take home huge massive salaries and don't give a jot, about what devious actions they drum up to knock us off, so they get their bonus's..   I LOATHE that Insurance company with a Passion.

    • gill50535
      gill50535 deb97936

      Posted

      Oh i know, everything is a fight, i had to buy my own scooter, out of what little money i get, i had to save up for it and in the mean time pay for taxi's to get me everywhere, there are some day's even with the scooter i can't face even leaving the house,even getting the scooter out the door would be too much.. it really is a horrid thing to be stuck with. 

      x

    • deb97936
      deb97936 gill50535

      Posted

      Wow, you have my deepest sympathy..   the struggles are huge aren't they!!   I do understand and I know how you feel.  Big Hugs
    • mel77
      mel77 deb97936

      Posted

      Hi Deb:

      First let me tell you I found the link to your post from my email.  It seems that everytime I write to some other patients, my email keeps track of various response even though is not directly to me.  Right now, I have a backlog of 25 posts.  I am very active here and I must say that some of the posts are directly related to my conditions,  By the way, my name is mel and nice to meet you.

      You being in the UK and me from the State of WA, we are a long way distance wise but right here instantly.  Oh, the wonders of technology.  I am very sorry to hear of what  you are going through.as pain and other symptoms that go along with it.  Having injuries in such as a car accident can really mess you up.  Talking about insurance companies, that is another matter in itself.  It's not only where you live, it is bad in our State as well.  As a matter of fact, it's probably bad everywhere in the whole USA.  As long as a person does have lots of money, then they are at a disadvantage.  They charge a fortune, make tremendous profits and offer hardly anything.  Always, no matter what we don't have the say in any of this.  I really hope our next President will fix these problems.  But, I doubt it because congress has to approve it and you know the we have with our own political system.  I am not going to touch this now.  How can your insurance company cut off a claim that you badly need.  Going to a lawyer is almost nil as you have to pay them unless they will take it in contigent which is very rare and they have to know that they have a sure win in a case, maybe in a good malpractice suit.  Who has thousands of dollars to pay up front unless you are rich.  And your right, we do have to suffer with pain almost endessly.  People today are not as giving as in the past.  No person should have to suffer living a life of distress.  My heart goes out to you and everyone else that suffer so.  I have so much pain and stiffness which really inhibits me from doing the things I have to do and having fun is a chore in itself.  When you are out with others, so called normal, I know I try to smile but it is hard.  For one thing I was brought up in a dismal household with parents who were brutal so growing up you tend to have a frown.  The second thing with me is that I only have 4 teeth left and they are gradually chipping away.  To go to a destist which I fear most unless I was put out, would cost me a fortune.  Not only that but I have gum disease which would have to be taken care of first.  Then I may be able to get dentures.  Now, I can't really smile and have to keep my mouth closed.  The wrinkles in my face really show my age and can't get a face makeover.  I am 76 years old soon to be 77.  The next thing I have to look forward to is dying. Pretty grim, isn't it?  Fortunately, our mind is still intact at least so far for me.  I am having memory loss and my hands start shaking.  My father will really sick with Parkensons Disease and couldn't walk forward.  He fell so much and eventually he started to move backwards.  My mother had to hold him by his belt so he couldn't fall.  He would fall anyway.  Thats pretty sad.  I hope that I wont get PD as it is genetic.  If my shaking gets worse, then I will be concerned.  Meanwhile I have to do the best I can and go on with life.  I will end this letter with a thought which I wrote.  Call it a limerick if you will but here goes.

      Oh, we are in so much despair

      We wonder how we made it here

      To know that our pain is so bad

      We should become mad

      Instead we become sad

      But we should lift ourselves up

      Knowing that God is helping us up.

      Pretty sad, isnt it.  Lately I have been designing these limericks and they help us to see what is ahead of us.  Sometimes, I paint a sad, rather mad, but to be glad that I can do some things in like I am doing now.  I find that writing in this post is therapy for me,  I am glad that I have taken a course in creative writing getting an "A".  Yippy yi yay.  Whoops, I am trying to be funny.  I really like being here as I can help others feel a little bit better and I hope you  do too.  I will say bye for now and please take care of y ourself and write back.

      My best to you always,

      mel.  PS  Some people like to call me tiger as I was called that by my supervisor when I taught school. 

      tigersmile 

       

       

  • sarapainfree
    sarapainfree

    Posted

    thanks for your comments iv been on crutches foe around 8-9 weeks and just wanted to venture out as was feeling well anuff and don't want to be dependant on crutches but it's looking like I might have resigned to the fact that if I want to get out my two crutches r going to have to come with me I too have no social life unless I'm at a friends house or they mine but I don't do pubs etc for the past 2years nearly now my legs and body can not take it I'm only nearly 32 this July and feel 70+ it's not fair along side this I have under active thyroid fatigue ibs and unable to work been off sick for past 6 weeks and having a lot of stress from that
    • mel77
      mel77 sarapainfree

      Posted

      Hi Sara:

      When you don't feel well, even crutches won't give you the incentive to walk and do things that you would like to have done.  At least crutches will get you to the bathroom and eat at a table.  Even with crutches, can you make it to the bathroom when you are having an IBS attack?  My wife has it too and has to go at least 4 x a day and takes Immodium to help relieve diahrreha. (mispelling)  Too lazy to look it up in google.  Your young compared to me.  I am more than double your age and I called an old "fart" by some.  lol  How about a laugh on that one.  ha ha  You have to have some humor in your life or how can you go through it. I don't want to keep this too long as I have a lot of catching up to do in the forum,  So, take care and be well.  Feel good.  Talk to you again.

      mel

    • sarapainfree
      sarapainfree mel77

      Posted

      thank you for your reply I like your humoursmile I feel old before.my time and get rather fustrated with my self as carnt do the things iv been able too before I got ill I do suffer with a funny tummy altho luckily I can make it to the loo just feel bloated and uncomfortable most days but I also suffer with fibroids not nice sad but my kids keep me going bye for now off for a nap as I'm very drained take care
    • mel77
      mel77 sarapainfree

      Posted

      Thanks for sharing Sara:  You are one of the people here I enjoy talking to.  Have a nice nap and talk to you late.  You will feel better after the nap as I do too when I nap.  It seems that people in this kind of pain nap more as we need it.  Talk to you later and feel les pain.

      mel

    • sarapainfree
      sarapainfree mel77

      Posted

      that's very kind of u Mel thankyou nap did the trick smile
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