A little thank you

Posted , 6 users are following.

I know exactly how you feel, I was complaining to my mum about being awake in the middle of the night for the third night running and her response was that I should try staying up past 8pm at night, because I get more sleep than anybody, up to this point I thought she had been supportive, I printed off some information for her which she read and said that it explained it well but I'm not sure she's really getting it.

My friend calls fibro sad life syndrome as only people who have nothing better going on in their lives get it so I've not even told her about my diagnoses.  She has also said she doesn't believe in depression and most people who have "depression" are looking for an easy way to get out of work. She quickly added, oh I don't mean you, I'm guessing she really did. 

​Apart from my hubby I feel like I have nobody to talk to and I don't want to burden him all the time.

This forum really is becoming my lifeline so I'd like to say a thank you to everybody for your help and support xxx

2 likes, 5 replies

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5 Replies

  • Posted

    Don't know where the I know exactly home you feel came from, gremlins in my computer xx
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  • Posted

    Nice. I had something from a Dr that really Peed me off "you must have something in your life you're unhappy with?" 

    Implying the pain is in my mind caused by depression. I said yes I'm unhappy with being in so much pain! 

    Just beggars belief when people you trust say things like that. 

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  • Posted

    well she dosent sound much like afriend to me .

    the next time she has flu and feels like total sh*t tell to get up and go to work

    when she says she cant .

    then say well i feel like that every bloody day.

    its good u have a supportive husband. but it is a lonely condition because no one can see it.  i dont know what your taking ,but some alternatives i find helpful are b12/ q10 and gold supplement. along with magneisum oil rubbed on the body to ease the pain ..

    getting out side is the best way to feel better even if its just siting and getting some air. my fibro swings from pain be worse to the fatigue being worse

    i am going thru the fatigue part at the moment and its the worst bit for me , i can reduce the pain with my oil rub , but the fatigue theres nothing that really cracks it not that iv found any way .all the my SAD lamp does help ,its just being bothered to use it  every day .regards tian .in yorkshire.

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  • Posted

    Wow Daisy you got one heck of an opininated friend there - who needs enemies?  Of course, if you're still friends I'm sure she has other rather lovely qualities even if her strong opinion about depression and Fibro is wrong (bless her, guess we all can't be right all the timefrown).  If her opinions about the pain and suffering you are going through are making you worse you might need to try to get her to understand or reduce the amount of time you have together - for your own health.

    There is a piece called The Spoons Theory which I showed my family. You can find it on the internet.  It is written about Lyme disease I think but it works for us too.

    My OT explained something to me last time I saw him.  He said that if you think of our energy as a battery.  The amount of energy goes down in the battery when up start using it during the day.  For non - ME/CFS / Fibro sufferes theirs goes down too but when they take a quick 5min tea break their energy battery fullness has a quick in-fill.  Then again at lunchtime it gets another in-fill.  Not to it's fullness as that is done during their sleep but the amount does peak as the day goes along when they take quick breaks.  ME/CFS / Fibro sufferes are not so lucky.  Our energy battery wears down, we take our quick breaks but the amount hardly fills, then we use it again, lunchtime gives abit of a better fill if we rested.  Therefore by the end of the day our energy battery is looking pretty empty (we may of even gone so low we were in the negative).  Therefore we need to go to bed early if we didn't get a good recharge during the day because our batteries are empty!  Then we get (or try to get our nights sleep)  However because we have a silly system our batteries don't even fully charge during the night either, so we start the next day (as every day) with a 3/4 full battery.  This is partly as my CBT told me is that we run our batteries down so low during the day (even into the negative) that when it tries to recharge at night it really struggles. Just like your phone battery, if it is flat and you only charge it a little (like us at night sleeping) the energy in it the next usage isn't nearly as usable as if it the battery was only 3/4 empty and you give it a charge up at night.

    Hope that helps.  When my OT and CBT people told me it kind of made sense. 

    I was speaking to a friend earlier this week and she said she was feeling rotten that day cos she had a rough nights sleep the night before (I silently thought - we get that every night, try having that feeling every day).  I didn't say it cos we know it and she needed a little moan about it to feel better.

    Depression is real otherwise the doctors wouldn't give medicine for it.  The doctors can only give out medicine for something that has been medically proven to exist and medically proven to help the condition.

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  • Posted

    OMG it sounds to me like you need a new friend. It does not matter what challenges anyone has none of us have any right to judge.

    You really need the right people around you.

    I have had the same challenges re family and friends and even after giving them literature, having a proactive approach they just odn't get it and then it drives me crazy as I never mention what my challenges/pain levels are and when they complain about not being able to do this that and the other I have to bite my lip ha ha (so trying not to judge them for that was a toughee ha ha).

    I agree this forum is great and do you know what from my experience so far it is the complete opposite, those that have worked soo sooo hard and care for others etc are the ones with FM and it is our bodies way of telling us to put ourselves first and slow down and regroup.

    All the best 

    E

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