Gee . . . I didn't know I was lucky!

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I have been sick for 11 years and thought I had heard all the horrible things someone could say regarding my 'invisible' illness.  And yet . . .  I was explaining ME to a co-worker.  I informed her of my symptoms and how difficult my life was.  I told her how often I get really sick, the huge number of doctors visits, the feeling like I have the flu everyday, etc.  My co-worker smiled at me and said I was lucky.  I leaned on my cane and with some caution asked why.  She said that me being sick is a blessing from god because I now know the pain of Jesus.  This makes me blessed and I should embrace being sick.  I should work on enjoying being sick and not on symptom relief or eventually a cure.  She said I was LUCKY!  Do you think I showed too much restraint by not thwacking her with my cane?  Anyway, this response was a new one on me.  Odd what people will say when they find out you have a chronic disease.

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  • Posted

    Unbelievable! I am a Christian but would never dream of saying anything like that to anyone!  She's not going to convert anyone like that is she! I certainly don't think my CFS is a blessing from God! Apologies on behalf of sensible and sympathetic Christians! 😳 Well done for not caning her! 😉
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  • Posted

    Yep Ravenwood;  that one Certainly "takes the cake/icing".......I don't think I would have taken it........why does there always have to be someone who has to be "so out of touch with other people", that the only answer to Everything, has to do with Jesus/religion....and "our burdening souls"..".paying the price for our sins"...."having bitten the apple"....etc.....I have said to myself at times.."what have I done that is so bad to be like I am?" and can't come  up with an answer... I know others have done most of the sins that I have committed, and don't have any medical condtions....what about the babies/young children who havn't even had time to sin/or learn re Jesus' suffering, who have horrible diseases (cancer/Genesis Imperfecta/Haemaphilia....the list goes on)...why do they have to suffer?  What's your work colleague's answer to that?....              Bronfrown
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    • Posted

      Hi Bronwyn

      It's not about who you are ! It's about what you are...you are a human being with vulnerability.

      Does a virus make a distinction between humans ? I'm not sure...

      Whatever the answer, no one needs to search for answers that question who we are. You did nothing wrong; you are a human being just like the rest of us, continually seeking answers in this world of uncertainty.

      You could look at it as...we are the chosen few ! ...but I doubt you would consider yourself so selfishly.

      I try not to query my circumstances, look forward every day and forgive myself whenever I cannot find the discipline to keep myself in check.

      Oh for a life out of routine, just for a day or two.

      Alas, it would be one step forward and three steps backwards !!

      Why are we so cruel sometimes, lacking compassion ?

      Best wishes

      Jinny 🐭

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  • Posted

    Yes you were showing too much restraint by keeping your cane in bay, joking wink

    What I've learned from this illness is that there are only 3 people who can understand ME/CFS; (1) people who is actively suffer from CFS, (2) people who had CFS at some point and somehow recovered, and (3) people who deeply researched CFS and understand the symptoms and its uniquness, i.e. it's not just "fatigue" as in normal post-exercise fatigue, it a "sickness fatigue", its not just a "headache", it's an "excruciating headache", and so on. How long would a normal people feel "pre-flu sickness" when getting flu? 4-5 hours! Then the flu symptoms appear, and recovered within days. I bet most people won't even remember how the "flu sickness" felt.

    Please be careful on whom you explained to, in particular to strangers. Empathy alone is definitely insufficient to understand this illness. I did that sometimes initially in the past, and I was truly annoyed. But of course, brain function was so impaired I couldn't even get angry neutral

    At that point I figured out that I rather stop trying to explain this to people. Just a simple excuse, "No, I'm not feeling well" works better. They just don't understand, unless they got CFS.

    Posting here is 1000x better, no? biggrin

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    • Posted

      Yep....and then they don't understand why "your Not-so-Well"...all  the time.....becomes Very Frustrating....today and yesterday are some of those days.....I couldn't Believe one of my daughter's partner yesterday, when he said "what's wrong?".......b...hell, I thought, please don't ask me to go over me and my body AGAIN....and some say that we are Lucky to have family who support....referring to a comment made a few weeks ago.....there are still people with short memories/.tolerances.....even withing our Inner Circle.....hope all are having a nice day????...................................(even my computor has frozen with it's mouse, and having to use a cord/plug in) which is getting in my way....and adding to MY frustaration redface   Bron
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    • Posted

      Hi Bronwyn, I can definitely understand that. Even my wife can understand this only after 4 months!!!! Also, the difference in brain functions makes it really hard to describe it to others..
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    • Posted

      Thankyou; I am Actually becoming Fed up, as others have said, in Trying to tell them what to expect from me....as they say, "we look Normal" so why arn't we Normal.....I had a hotpack aroung my neck...and the first thing he said is "what's wrong with your neck?"......he has known me for at least 4 years....Bron
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    • Posted

      Hi Bronwyn, as well as my out of 10 level indicatior i have also over time prepared an A4 ME sheet (along with Same for Prinzmetal micro and macro and intermittent arrhythmia) and give that to people who ask so what is wrong then i have been know to put on the number of times i have given them the sheet with persitant offenders but as on another thread on here i still find my daily socr of x/10 gives the easiest answer. When i was working a friend in a different office had neck damage for ma car crash and was in constant pain. She had an F's scale .....it was suprising how many times one word can be used with other words to get across a degree of crossness and level of pain and frutration... i never had the courage to try her scale... when i got into minus figures i knew i was having a bad day...  
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    • Posted

      Bron we try to get up and they knock us back down again so easilly! I'm with you utterly on the frustration.  Hugs
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  • Posted

    just when you think you've heard them all! I was stopped in the street once by someone who wanted to discuss their faith, making it clear I was a non believer for a few reasons he suggested it was a test, he was very young in all fairness to him and when he realised how serious I was bless him he even apologised to me and left me alone. but this! this is something else! I think I have steam coming out my ears on your behalf

    my guess is she's either never suffered real hardship yet and lucky her still has that to come in life, or she has suffered and that's what she tells herself and doesn't know how else to deal with it herself other than keep telling herself that.

    I get your anger, I had pretty horrendous treatment at a place of work even including one person who all the while pretended to be a concerned friend, but actually behind my back emails were going around about me, I'm out of there now. the one thing that abates my anger is looking at those two peoples lives and knowing I wouldn't want their lives for all the money in the world. I think that's the trouble with people like that, they have so little of any real substance in their own life that they instantly look to bring someone else down cause it makes them feel better or superior in some sad little way. you'd seriously think that people who have energy would put it to better use, but sadly it's wasted on a lot of them!

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  • Posted

    It's a blood*y good job I wasn't there. I think you should be suggested for Saint hood. lol
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  • Posted

    Thanks, everyone.  I just needed to get this off my chest.  Some days I found this episode funny, other days, not so much.  It can be so hard to deal with people.  Even if they mean well, they can say some really terrible, hurtful things.  And of course, some people don't mean well at all.
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    • Posted

      I've mentioned this before in the forum but briefly there's a really grumpy old man living next door and on a better day (I prefer better than good because I never have enough energy to claim 'good' physically), I digress.

      Sunny day, not too bad standing up, so I went on a wild adventure with my stick to the shop for a few supplies, and on the way back he was there and said 'Oh, I see you can carry shopping then!' 

      I can't possibly explain the horrifed emotions I felt but you can imagine I'm sure. I was feeling happy and proud of myself for managing it and he completely ruined it. cry

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    • Posted

      Easy to say Georgia, but ignore him; you don't have to explain yourself to him or anyone else, except the DWP! You know yourself and no one should judge another because they are not that person and don't walk in their shoes! Sorry he bought you down from your upbeat mood rolleyes
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    • Posted

      Thank you Andrew, you're so right of course, hard to do because he made me feel like i have to hide away even more because I can't take the verbal abuse and that's probably reducing my healing abilities. But yes, it's my life, not his. biggrin

       

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    • Posted

      ​Thanks Mary! biggrin There's a Leveller's song that says 'There's only one way of life and that's your own!' It lifts me up listening to that and you've lifted me up. 
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    • Posted

      indeed it is your life! be proud of your daily achievements and when he next utters forth tell him "well at least i am trying whats your excuse?" be you to the best of your ability not someone elses toy that they can bat around to their hearts content if he says i see you can carry your shooping, reply indeed i am really pleased that i have made some progress today, if he whinges about you goig for a walk Just say yes indeed today is a good day and i can manage to get out and enjoy it who knows what tomorrow will bring but today i can... be determined, be you
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    • Posted

      Great advice Andrew! That would make him feel guilty hopefully and perhaps cause him to be careful of what he says in the future! 
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    • Posted

      Splendid speech Andrew; the passion of Martin Luther King. I'm so impressed. Have you ever done any work for the ME Association?
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    • Posted

      Hehehehe I'm laughing so hard I'm going hysterial Mary! The man is a sociopath I'm sure and wouldn't know guilt if it hit him with an axe. 

      But most people I think would respond a bit better. 

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    • Posted

      no not yet, i want to do something for us and for prinzmetal people but havent found the ooomph yet!
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    • Posted

      thank you very much, very kind and uplifting too! (see you can do it too...!!!) it comes from coaching athletes, the first and most imnportant thing is believe in yourself that is what i teach all athletes (for me an athlete is someone who pushes themselves to do a bit better than last time)
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    • Posted

      I used to do karate when I was young; I didn't get too far with it because of other life things. I still have my suit in the wardrobe for motivation and I couldn't possibly ever throw it away.

      The official lessons were good but years later I had a really good friend who was very ill but used to be a black belt and he taught me the most even though he was so weak. What am I trying to say?

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    • Posted

      if you were motivated enough to do that both in a group and with your friend... then your self belief is good just needs encouraging a little. Take your suit out sometimes and do your warm ups gently...
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    • Posted

      You just made me cry because I think of my suit as my old skin that I'll never get back but perhaps, perhaps!!!!!!!
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    • Posted

      clothes like books are old friends we can always dip back into... maybe it isnt such a good fit maybe the book is battered but the thoughts it holds are what counts and are always the foundation blocks of new yous to be built on

       

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    • Posted

      Oh no it's a perfect fit, I haven't changed size! Yeah the book's a bit battered though and the muscles are weak. 
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    • Posted

      I do keep the body going by listening to music in my bed. My whole body moves gently and playing the harmoica along with it uses muscles to.

      This is all such great advice Andrew because everyone who has ME has something that's a passion and we shouldn't lose sight of the things we like to do.

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    • Posted

      indeed they may be on the horizon but they are there, sometimes we can get there sometimes we cant, when we can we need to enjoy the monent(s)
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    • Posted

      Enjoying the moment right now! Lemmy, Motorhed and Hawkwind AND I DON'T CARE IF NOBODY ELSE LIKES THEM, I BLOODY DO!!! hehehe,

      Well it's our own lives. cheesygrin

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    • Posted

      Morning GeorgiaS;  As we have been saying...some people just don't "get it", do they...why do they do their "utmost" to bring others down...If your neighbour was so well/had the time to spend watching you bring home a couple of bags of groceries (which I know is a Real effort)....why wasn't he making use of his time by helping you?  or someone else....perhaps even working to pay his own way????...People who are soooo horrible/selfish, I just can't seem to fathom how they get away  with living with themselves......it seems as has been said on other sites, it's those that do care re others, that seem to always keep getting the knocks, and I know it's because they actually can Empathise with others....know that not all others are the same....there are Many types in this world, and thank goodness I can actually say that I am lucky enough to have real people in my life (some very special people to call my friends).................Bronsmile
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    • Posted

      Grrr .... what a horrid man!

      You know, I have found that being really sweet back to people like that can bring them more shame than a sharp remark back can: Smile, "Yes I'm having a really good day today, nice of you to notice, it can be so depressing on days when I'm unable to do these things - Thanks." Smile, and hobble on.

      And don't let them spoil any more of your 'good' day.

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    • Posted

      Agree with that one Olivetree.....as they are so engrossed in being nasty, they prob wouldn't have "a response" to that one....cheesygrin   Bron
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