PROBLEMS AND MORE

Posted , 3 users are following.

I AM PRETTY SURE THAT I HAVE A GOOD HANDLE ON THIS AS I CAN SEE HOW IT IS INTERRELATED WITH IN DETAIL OF THE THYROID. i DO HAVE CURRENT PROBLEMS THAT I AM STRUGGLING WITH , PERHAPS YOU ALL CAN HELP ME. MY CHILDREN, ALTHOUGH THEY ARE PRACTICALLY ADULTS STILL EXPECT ME TO BE "MOM" THE PERSON WHO MAGICALLY DOES THE LAUNDRY , WHO MIGHT SAY THEY HAVE A DR. APPOINTMENT BUT THEY ARE PERFECTLY FINE, ALL THE MOM'S OUT THEIR KNOW WHAT i MEAN. I BLAME MYSELF AS i HAVE ALWAYS HID PAIN FROM THEM , I WAS SUPERWOMAN.

MY HUSBAND , OH HOW HE TRIES , HE HAS COPD AND IS A STUBBORN MULE. HE ACTS LIKE A JERK ONE MINUTE AND THEN LIKE A PRINCE CHARMING. HE HAS TAKEN ON SO MUCH SINCE I WAS SICK WITH ANEMIA, MY SURGERY, AND NOW. BUT NOW I SEE THAT IF I AM NOT SHOWING THE SIGNS OF I AM IN PAIN HE THINKS ALL IS GOOD. HOW DO I TELL HIM WHEN HE COMES TO HUG ME , IT PUTS MY MUSCELS ALL TIGHT IN MY NECK AND BACK .

WHICH IS ANOTHER REASON WHY I QUESTION IF I HAVE FIBRO, MY PAIN STAYS , IT DOESN'T GO AWAY , IT DOES INTENSIFY BUT IT STAYS .

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16 Replies

  • Posted

    personally speaking from my own experiences. Because we look well their have been times when my son and husband think  theirs nothing wrong with me. its like fibro doesnt exist. With my son its like nothing has changed he still expects me to do what I have always done as a mum. so today I gave him a wake up call and really had a go at him. My trouble is I plod regardless no matter how Im feeling what pain Im in. so its like oh your fine theirs nothing wrong with you. I also got him to research fibro for himself. I think our children should know about it and be educated in it. When my husband comes to fuss me I would say to him to be gentle but now he just leans forward and gives me a kiss.he is frightened of touching me and hurting me.Ive never hidden any pain ive ever been in not with my husband or son. take care gentle hug
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    • Posted

      Well, I told my sons about the diagnosises. I explained that it wasn't life threatening and how it is major pain for me. I can see where they could think everything was fine. For that matter , I often face the "get up and be active moments" to find that my back and neck have beaten me up .
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    • Posted

      The problem we face with having fibro is that its an invisable illness. when people look at us we look well, no 1 can see the excrusiating pain we are in. because we tend to put a brave face on and soldier on kids husbands family friends think we are fine and everything in the garden is rosie.when infact it truely isnt. its hard for people to truely understand what we are going through. The only people that do fully understand is those that have it. It doesnt always pay to put on a brave face. take care gentle hug
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    • Posted

      I fully agree, and think that you are so CORRECT !  Sometimes I am walking , and wonder exactly when is my body going to fall down and refuse to get back up. I have the vision, of the pain just making me fallstraight down.
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    • Posted

      paceing ourselves is the key to having fibro, as if we dont fibro knocks us back down. we can end up in bed for days and feel really poorly. Having fibro means making adjustments from what we were once able to do. to what we are able to do now. all family friends husbnads children need educating in fibro. so they can try to understand what its about and what we are going through each every day. it doesnt hurt for children to help with chores, like make their own beds dust etc.and hubby to help out to.we arnt robots we cant do it all how ever much we want to. if your in pain dont hide it. family need to be fully a ware of how much we are suffering. take care gentle hugssmile
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  • Posted

    Morning Diagnosisisalie; Yes you DO have Fibro.....my pain stays all the time, too....sometimes worse, especially if I have done something the day before  (even driving down to do 30 mins of groceries, and nothing much else.....and mostly I have the groceries delivered)...but for an example, I went down last night for a few things, and cannot walk today (my back muscles are woeful)....my Neck is stiff....etcetcetc....I KNOW it never goes away, just some days are worse....I think after a while the family gets to realize that your body isn't as good as it used to be.....but You have to let them Realize that  (don't do the washing/bed making etc......even the vacuuming/floors/kitchen.....unless you Feel that you can....and if a comment is made re you having done so, say "Yes, my body isn't TOO bad today".....but let them know how you are feeling the next day.....it won't happen overnight, but will take time (me it's been 10 years)....and then I feel that my girls undersand more than the men in the house.....just keep at it.......Bronwink
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  • Posted

    I have had the same issues with family and x partner NOT picking up on the fact that just because I'm sitting here or standing or in bed looking fine and conversing, I'm actually still in pain and the slightest distraction causing me to be ambidextrious mentally can cause the brain to flare a message to the muscles and off goes more pain...  Fact is I'm conversing whilst managing pain...  I don't what or need it loading up more on me.  Others cannot mind read us....

    I have been wondering, what if we use a colour coded variaty of mood and pain indictators with an explanation on them.  Nice pastel shade paper/card, to hard bold colour.  OR a graph type thing that we can put a sticker or pin in to indicate what level of discomfort physically and mentally we are in, and or how physically approachable we are.......

    BEARING in MIND we do have to push through a lot of our pain issues even on Better Days to 'allow our partners, hubbies, kiddies and friends' the appropriate closeness.  Folk can have partners and hubbie become so unhappy not being able to be intimate, or rarely intimate and they could well seek it else where. Reality is that can happen and it does.  SO, being realistic we do have to make efforts  to sway away from our loaded but better days and work with those odds, and get creative with 'how to be intimate on those days'.  Sometimes it can be a great 'pain killer'.   

    With friends and family, it's letting them know that whilst NOT good, that we are still interested in what they are doing, thinking, saying etc... even if my face doesnt reflect it like I would normally...  Tell them that you really rejoice in those better catch up days, that they make your world whole, in good and bad days/months, how precious they are to you and that it is them that keeps you stronger fighting the daily battles.  That those days when you can't bare the hugs is when you mentally need them the most.  

    Find ways of hugging, like resting together on the floor, or couch, in bed, where they are the cushion, and lying till or being massaged or gentle skin brushing is the best comfort and hug ever.  That at these times, sometimes it's the best pain killer and best medicine being rested, held in such blobby relaxed fashion.   Let them know that, tell them.  Get creative.....think outside of the box, free your mind to open up to ways of remaining in contact phyically and mentally 'the pair of you'...  It can be heaven, and it can also be fun.  AND very theraputic for partners mental aspect...  

    Oh how I wish for a large open fire, sheepskin rugs and big floppy pillows on the floor...   and I guess I could put a good man in there ocassionally to.. hahaha.  I am otherwise happy to live on my own, I have not been like some women that don't cope living alone, or must have a man in their life.  I do otherwise get on with my own company, it's quiet, but that's fine I don't mind.  After having a partner of 17 yrs not cope with my days of not being able to physically complete tasks.. I'm not wishing to put my issues onto anyone else again.  

    Out of the 17 yrs, it was the last 5 yrs that I suffered disablement as a result of my MVA, and he couldn't handle the fact that I was broken, and my issues never completely resolved after the accident...I was still trying to work, driving over 110kms/day (there and back from job as we lived rural).  

    He was so self absorbed that he took my disabledness as 'an insult, or threat to him'.. 

    Here's a funny story for you all..   One time he had to go up to the North Isl from the South Isl where we lived, for work, and he rang me early in the morning crying because he couldn't get out of bed, his back hurt and could I ring him an ambulance.

    YES YOU HAVE READ CORRECTLY.....

    I calmly said to him, 'your back is fine, it's just having a muscle spasm, you will be fine.  Ask one of the other chaps if they have any Paracetamole or Panadine or similar, take a couple or three and wait half an hour or so and you will find you'l be able to move.  Get out of bed gently, and do a few gently stretches in the shower with the hot water on the area.

    It took me ages to actually convince him he wasn't dying that he didn't need an ambulance to the hospital.  His work colleage arrived at the door and so he asked him for painkillers, which the colleage did have.  Within half an hour he was out of bed running out the door he told me later.  He said,quote ' well if that's the sort of pain you experience when you say you are having muscle spasms and cramps, WOW and you have more area's than my one spot, I certainly got a look in didn't I' unquote.   He was grateful I talked him down, and that I did know what I was talking about.   He said he was panicking at the time.   All I could do was smile, and say well just learn from it, and you know what to do next time.  Also get some more fitness in, and do some gentle exercises to strengthen your back area.   Did he ever do that, NO.   Did he ever take into consideration after that what pain levels I was in that painkillers don't go anywhere near at times..NO... He used to lose patience, because it was all so very 'inconvenient' for him that I was disabled/broken, and couldn't regularly mow the 2acres, weedwack, keep house, cook, paint the huge massive barn and mezzanine floor upstairs which was a massive play and entertainment spot where we had car clubs come and locals had birthday partys, climb the ladder up an embankment and plant plugs of grasses in a hard clay bank.. wash and hoover all the vehicles, maintain the huge orchard I had created as a future business if I should lose my job which was on the cards then, keep the huge vege garden going and remain ever so socialable   and I wasn't allowed to show fatigue or signs of being in pain to anyone,  and the list goes on.. No it wasn't a healthy situation. Yet I bowed down to him and nursed him when he need help etc and never rediculed or behaved negatively towards him.  I genuinely cared for him and his welbeing.  Was it reciprocal, NO.. 

    We had a good friend in common, who moved into the area.  Being a respected policeman he could see what was transpiring and he later took me aside and told me, ' that whilst it is none of his business and not wanting to interfere, but from his observations he just wanted to caution me from a policemans perspective, that it would be a good idea to contemplate leaving my partner.'  I was not surprised that he said that..  I was quietly grateful that he showed enough concern to tell me, no-one else did.  But then my partner didn't show his 'true side' infront of everyone...  To this day, everything that goes wrong in his life is everyone elses fault, and when folk don't follow his advice, do as he states, or they disagree with him, then those people are A holes and don't deserve his friendship and he flys off the handle.  

    So disabled or not, I learnt from my friend to be stronger and know it's not me that's in the wrong.  Over months I was planning how I would leave, as all my money was in the property, which once was freehold, till he selfishly mortgaged the hell out of it...  He exploded one day violently so I did what I threatened to do for years, I called the police.  (No not our friend in common, he'd left the police force after 25 yrs and took up other employment elsewhere).  

    He spent a night in the City jail...  was charged with spousal abuse, man on woman, and also property damage. My items he smashed..  So that evening was the catylist and I left....  I now have since lived alone and better able to self manage 'me'..  with out the abuse of a nasty partner.

    There are some very good partners and hubbys out their and they deserve 'your loving respect, care and attention to'... BLESS THEM...  as these good partners and hubbys suffer with you/us...    Take QUALITY TIME OUT TOGETHER...

    A few shared ramblings from me, whilst it helps take my mind away from my physical pains...

    Our storys are what folk can learn and share or draw similarities from...

     

    LOVE and HUGS everyone.....

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    • Posted

      Once again, Deb, you have been very brave to have told of your life and the issues that brought your  relationship to fall apart........and from my research, and a comment made by my Rhuemy "that I have found the stressor in my life", when talking to her about what I discussed with my Psychologist, leads me to believe that the Researchers/Specialists DO believe that a Causative factor in Fibro, is sufferers living/having had  a Traumatic Stressful Episode/living a Stressful life (which is an issue for many of us, after having read many comments put onto this forum)....if partners have a Personality Disorder/our careers  puts us under too much stress (my working as aSupervisor/Cordinator/Triage Nurse in an ED) for 10+ years and raising a family of 5 (7 in household) and as many others, state, trying to Have ALL perfect for our families..........these all contribute to our Condition.....So, Yes, I do Believe that Major, Long-term Stressors are a Cause for Fibro..............perhaps if we all thought Hard, and were honest, as you have been, we will find these Stressors; try to eliminate some, and we may find some relief from our pains?????   .....Bron
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    • Posted

      Thanks soo much for sharing deb....being soo vulnerable with us is just so beautiful, your words are soo important in helping others who suffered like you did, well done you for finding strength to help yourself , while I have one of those hubbies who are just sooo awesome and understanding..I tell him that he blesses me everyday..certainly helps with a positive partner...you are such a blessing to many..never stop sharing..your helping...I really pray that your helping yourself continues..be blessed deb...have a lovely weekend..gentle big hugs...:-) xxx
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    • Posted

      My having Spinal,  Head Trauma issues with CNS issues, threw my life inside out painfully and mentally very limited.. Over time now my head can cope with more..   I found the stress of dealing with the deviousness of the ACC denying me help with treatment Stressful on a daily basis for Years! I think I can throw in the Anxiety issues there to..  and coupled with living with the Stresses caused by a angry, off the wall partner made life quadrupley hard.  The same terrible painful issues would just go through the roof 24/7..  I cannot believe I didn't wind up a real cop case, dead, comatosed head case or flattened under a car.  (I wasn't suicidal and haven't been, although you wonder and question  ' just sometimes', what is the point of my existance like this if I cannot contribute to society on a whole, when I can hardly do for myself most days?) hohumm..   

      ACC will get a hold of my posting here, and use it against me in court.  Watch this space.. They will cherry pick what they want out of it and use it against my diagnostics back then..  They did this once before in a Review case I had.  They raised the fact I had been posting in a forum from such n such a date and had printed out all of it.  I was warned they could do that, and they did.  That's how far their devious minds and fingers go to get dirt on you..to use against you, how ever they can screw you out of treatment or recognition for injury/s.   My court case is booked and I await my case to come up.  It may take 2 - 3 years but it's booked.  

      Be warned if you have an accident in Auzzie, the same tactics will apply as you guys now have our ousted CEO and their tag team in your guys ACC system helping to 'orgainise' the system to reflect ours, which is the American Atos and the other Insurance Companies business model.

      So between being broken up in a serious MVA and having that trauma and physical trauma, there is all the other head/nervous system assaults with and causing huge STRESSES from our everyday lives.  

      FOOD FOR THOUGHT... YES I agree it is..

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    • Posted

      Thank you for sharing what you have said to...   Your and some others are blessed to have 'real human, hubbies and partners' that are living in the real world and LOVE their betterhalves 'you guys'... as much as they want to be loved 'in kind'..    Hence even though we live in our world of painful daily battles, it is also their mental and emotional battle to survive adjustments in the relationship/s.   We cannot just switch off mentally from them thinking we are 'self preserving our energy all the time'...  Again get clever and think outside of the box of how to keep that bond, closeness, and physical closeness.  We all know what simple warm skin on skin can do in a relaxed personal space, even just to lay and talk, and sleep is a tonic for 'both'...   

      I have a much younger sister who has battled terrible serious health issues, and still does.  Now because of surgery she is wheel chair bound and paralysed down her left side..   She and hubby have been together since school days.  Miracles did happen for her/him, when she later 'fluked' having two children, at big costs to her health still.  Anyway, my lovely sister who is a sitting time bomb, doesn't give up.  She has an amazing support team, family help on both sides and the other sisters are fantasticly understanding to.   She has pushed through life, and continues to with obtaining further education quals and a dam good job in the Health System, only recently she has left that job, as health hadn't been to good.  She is and remains a valued person in that employment by her colleagues and bosses.  She has since got another job which is I think a little less time taxing on her when she's not well.  Her condition is serious and there are only a handful in the world know with her condition which again the specialists have no knowledge of the 'how and whys' ...

      What  am going to stress is, she and her husband also practice 'Quality Time together, and also they have their own Quality time apart'..both being equal that they together share interests, a hobby of each others chosing that they can do of a week.  Apart, they have their niche of friends that they may go out of a day or go away for a week somewhere.. Each other having Respite type time apart.  And Quality time together, which involves at times just themselves together going away, OR they of course involve quality time with their children.  It is maintaining the balance,  She is a very 'on to it' girl, and leaves no stone unturned...   However stresses can reduce her to a depressed mess, and now colouring books 'mindful colouring' are her best friend to!   

      I do Oil Painting and have for a while as an exercise for my brain....That's when I can focus on good days and hold a paint brush. :-)

      We can sometimes find with fibro brains we slip into a routine and forget our better half, hubby...

      For me it was a matter of no matter what I did to explain things, or explain why I couldn't do some or all things of a day, 'not being taken seriously' was the breaker...  I had no true support from him.  I was worse when he used to put on the caring act infront of some folk, and when they were gone he'd grill and tear strips of me.. lol... CRAZY..  It was always me that was the calm one, and it got to the point my words meant zero nothing to him.  He actually never had an ounce of respect for me, or others so I began to notice, as it was all in his head and all about him, always....    Yes the matrimonial counscellor that you have to see when going through a seperation, made notes and told me she had heard back from the Tutor of the Anger Management course he was made to do through the courts for so many weeks, and it was duly noted by the Tutor also that 'everything' was basically a waste of time. (In not quite the same words also but reflecting what the tutor and couscellor said, was Quote' That my X partner at the end of it had not taken on board a thing, refused to acknowledge responsibility and continued to act as everything is my fault and everyone elses fault..unquote.   

       She lent over to me looked me in the eye and basically said, 'Because of the Privacy issues I cannot reveal indepth anything to do with your X and his Anger management sessions, but I'd like to personally stress to you the Tutor contacted me, and if you can see through way I am telling you just  this much, then you'l realise the 'danger' you can place yourself back into. It is your decision if you wish to try exploring getting back together and working with issues, but the decision is yours. I cannot tell you what to do, I can only convey what you wish to convey to your X before you finally meet with me and your X together, in the last appointment.

      So it wasn't just me, it wasn't all in my head...but I knew that anyway..  But the stress of trying to leave when everything is tied up and botched up and your physically and mentally challenged with damage issues... oh my gawd... not easy.  Thankfully my friend took me in with my dog, and I sadly had to leave our two cats (brothers) behind.  He did love the cats and was reasonably good with them...to this day I don't see him, the X anymore.  I did go through a couple of weeks grieving for the friend I once had in him, it was terrible.  Unrelenting crying.. but I cried I guess out of relief to!  Tears of Release.... after that, I was again fine and put that behind me, except I still had near 14ths of sorting out the property issues...  He hid stuff, moved and hid stuff, sold stuff, and got devious to.  I didn't care to much about stuff, but i did want just a few items of my mothers back.  I managed to get some back.  As I had mentioned before, he had mortgaged the property up to the hilt with purchases of his trucks and endless spending on them..  spend spend spend what him..and loan to pay the taxation man to!!!   Yeah, brilliant aye!  and he calls himself a business man.  He wouldn't practice good accounting and putting appropriate $'s aside when each bill was paid to pay the gst, provisional tax,  tax and ACC levies!   Nope for years he put it all on the mortgage.. the fool.

      Oh well that's all his problem now, I don't have those worry's anymore.. I have my own set of worry's and problems...lol..   The health issues though only started from the moment and there after from my Car Accident.  I never had any before hand.   And now those other stresses are gone, I still am left with 'these Fibro issues'....   

      I believe causations to be, and just my observations: -

      living with Pain from a physical trauma long term

      and/or

      Serious Emotional Trauma from a bad visual episode

      and/or

      Serious Stressfull Emotional Trauma from Overloading the brain eg: people who are High Achievers, people who work better under stresses but don't realise the long term effects..and that include sports people pushing the physcal boundaries and the Mental top 2inches 

      and/or

      Lesions in the brainstem, spinal cord....

       

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    • Posted

      WOW Bron... you have had a FULL ON time of Career and a big family to!  Triage nursing in an ED is full on!  and with it the stresses and emotional feelings that you have to deal with.  

      The Stresses of family issues and having to split yourself into many portions  on a daily basis...tsk tsk it has to take a toll on the body, just as much as a person who is full on with physical sports....   

      The Brain is a funny thing!...   It can be pretty hardy, but yet so dam delicate to... wow..

       

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    • Posted

      Just want to encourage you deb, you are just awesome...such a marvellous, beautiful person..and I pray that very soon you will receive just what's due to you..all goodness of course..you have been/are through soooo much.....you are unbelievable...you have been made very strong and wise through you trials...even though you still suffer...out of the goodness of your heart you share...sooo eloquently and truthful with others..you have made yourself very vulnerable with us all...what an amazing help to many of us you are, thank you very much..your special deb...nobody can take away

      your experiences or you voice..be encouraged deb..you have really helped many..keep sharing...your words must be heard..they are important to many..and they come in truth, we are from all over the world on here..your voice is global...be blessed, thanks forbeing part of my day...:-) xx

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    • Posted

      Hi Christine, again thank you....  I do kind of feel a tad odd after I post thinking that sometimes I'm to much of an open book...  But then I think, well we are human, we do overlap in experiences similar or same or totally different and how we each approach in attitudes, strengths, or how we come out the other end..good, bad, indifferent, or through good choices or ill informed, or from plain not having a clue what to do choices....  WE as humans are 'on the same planet'..   

      I can waffle at times and I certainly can vent ....lol... 

      I'm no-one special and there certainly are many others here in NZ in similar and worse situations believe me!  It's getting worse.. 

      Because I live a little more quietly than most now these days, I suppose I tend to write more..hahaha... not just a paragraph, Nooo   they turn into Novels! hahahaha

      It's looking at the simple things, appreciating the small things, keeping things simple that helps me and trying not to get to hooked up and stressed over things I used to think were very important and reflected who I was, eg:  my clean tidy house, not so some days, since pre accident as I have had to learn to live with a little of dust, a few odd rinsed dishes on the bench till I have a better half day to get these jobs done. Not hoovering every day or 2nd day like I used to...  Now it takes it out of me to hover my penny stamp flat..I love to have my place neat and tidy but, hohummm having to live with a little imperfection now..just for a few days or a week, by then I'm fumbling round to get things done... and I do.   I have a tiny little electric law mower, so easy light to use, I love it. Problem is I am running out of area's and places to put the little collection of lawn clippings ahahaha, no car to get to the recycling centre!   Yup, life does get trickier bit by bit...  We don't have road collection pick up.  hohummm Yes been doing the, 'build up the built up' garden area round the back.  Now cannot do any more...lol..   Thank fully my wee lawn is a quarter the size of a penny stamp lawn... haha  I'm so grateful it's an easy care tiny wee section.  But I do have to spray the large gravelled driveway and double turning bay and round the back of the two flats for weeds.  Exhausting but it forces me get outside and do those things, a positive.   Fact to my neighbour isn't able to do those sorts of things, she is younger than me but has either MS or MD cannot remember which, but is becoming basically cripped with it, and uses the walking stick aids.  Lovely woman.  She gets out and about more actively though that what I do!!!!   As she admits she doesn't suffer pain with her condition, just numbness in areas, and very little balance and strength in her legs period.  

      Thank you Christine, kind words...  we are all special and courageous as battlers of our war...  (I know we do all give into that those little moments of 'dam and buggar'..and feeling just a pinch sad for ourselves, and that's okay to, we/folk should not feel quilty for having those ocassional feelings as it's actually our way of internally venting and releasing that emotional valve...   :-)  )  

      HUGs 

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    • Posted

      Thanks for your lovely message once again....your absolutely right...we should never feel guilty for sharing even external venting...we, especially all understand...sometimes that's all we have....".mmm just thinking about thise grass clippings.....we buy a hessian bag on a stand that we put any green waste in and the company checks it out every month any replace it is necessary..there is a little cost...but boy o boy it does make a difference....amazes me what creative ideas people have for making a business....such a help to us, when we downsized our home..20 years ago..we were very insistent on having only half a block of land..in Australia the usually building block was 1/4 acre but we had a double block before, so we ended up having a small block......sooo much easy to manage...my husband has made it beautiful...he is able to use it as his down time-(from me no doubt) it was a new house so there was no gardens, he has done an awesome job with gorgeous10ft hedging, right around, can't see the fences at all....makes our place very private.. and tree and shrub planting, ...Even managed to put 3 little Vegies boxes in...he loves it...so do I, I love him to have his own time.... Have a lovely Day deb and be blessed..we have snow here today...sooo unusual and so very pretty..a day inside for me in the warmth....:-) xxx
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    • Posted

      Thank you for sharing what has happened in your life bless you.you have been very brave to open up to us my heart goes out to you for all that you have been through. When we go through things things like this, I have found from my own personal experiences. That It made me stronger i was with some some one that was abusive. I did somehing about it, by going to court and getting a court order against him. anything like this takes its toll on you both physically and mentally. But I found I came out the other side a much stronger person. Look after no 1 now which is you be kind to yourself and treat yourself put yourself 1st, you deserve it. take care big hug coming to you xsmile
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