my life

my life used to be a good life here in northern ireland lived through the troubles, no probs. Then i got hit with this horrible disease strips you of your dignity, your ability to be a man, hold a door open for some one, hold it for me please, friends dont understand anything about it, you end up walking away from them, people will only keep asking you to do or to go places for so long then slowly they stop asking because you keep saying no, and dont want to keep explaining i have this thing wrong with me that you cant see but i swear its there, having to keep explaining yourself,then with this you think that your sore have a moan then bang sore you'd love to have sore back, pain that i didnt think doctors would let a human suffer hits you, how long will this last you pray please just a day or two usually a lot longer sitting on the edge of the bed rocking with the pain, crying convincing yourself to hold on it'll get better soon, retreat into the safety of isolation that's what i have down no one ever sees me when im really bad, boys arent supposed to cry, where i come from you never showed weakness ever, going back and forth to the doctor repeating yourself the look of depression on there face nearly here he comes again look i think they just try and make you loose heart i dont really go to see them anymore whats the point everytime its just throw another tablet at me i have boxes and boxes now, i also suffer from ( social something) cant be around people anymore, shatters; me especially strangers, depression etc lack of movement led to diabetties? high cholesteral and now for the last good kick my hairs falling out due to the stress, my doctor says i've going to have to learn to take it easy, easy a good day for me is getting out of bed and making it as to the settee to sit there for hours all it ever is pain pain pain pain, it's all that keeps going over and over in your head, I.B.S headaches ringing in my ears, but people still look at you as if your normal so when you do venture out you smile and do your best to look like everyone else but you not, things need to change, doctors,friends,medication that works, god bless you's all who have this, if i do get a few hours sleep its now day time i will get up and light a holy irish candle and say a prayer for us all. god bless Keith xx only give an x for a kiss as hugs always hurt, ha keep your chin up.

15 Replies

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  • thats the curse of this ilness,we look normal,but its still there.As for being less than a men, your probably more of a man now, you understad what its like to be ill.Depression comes part and parcel with this ilness, if you can get that sorted its a big step, sadly i cant.Friends do leave us, I ve now got very few, Im the same as you hate new places, cant stand noise etc, I hope you ll find the help you need

  • You know the strange thing is having this has in away made me a better person, i'm a far kinder, patient and understanding person, all my life things always came easy to me, good jobs,relationships etc, was always seen as a so confident person, was never bad but in a away never appreciated it, for the depression they now say it also social appna something. the new places we both don't like now's really bac

  • did'nt mean to do that, i was in the post-office the other day was a nightmare, just remember people cant see what your thinking i just try look as if i haven't a care in the world although sometimes i know it must show. sorry that you can't get your depression under control wish i had a few words of wisdom that could help you, i bought a holy candle a few weeks ago didn't really know why i did, questioned it at the time but had no answers, i don't know whether there is really heaven etc be nice if there was no pain and a place were everyone was nice to each other, but maybe i'm supposed to light it and say a prayer for you, so i will, hope it works. losing friends were they friends, don't know but just remember it your friends who have lost out by not having you in their life. hope things pick up for you and thank you for your kind reply. Keith would send you a hug but it would probable hurt, ha ha

  • sending you lots of the most gentle hugs and a smilie face :)

    we know what you are going through here ,i hpe you find the forum useful ,and you can get everything off your chest ,i wish i could think of somthing nicer to say ,but its early and im very stiff and dreading the school run ,so all i can say is welcome ,and as isaid gentle gentle hugs xxxx

  • I know exactly how you feel i have become afriad of going outside and seeing anybody and hide away people who know me shop on line and only leave house for doctors i now have to use a wheelchair and that embarrasess me as i look okay.

    i wont even put my bin out till after midnight. I try to write happy posts here most of the time as it does lighten my mood just a little but we must not give up ever. i even write loads of funny stuff on facebook have decided cyner friends cant see me so cant judge me.

    It takes a real man to be brave enuff to cry and risj being jeered at so my sweetheart cry if you must but not for too long becaus eit will relieve your distress for the moment but if yu dwell on it you may never stop.

    u are still the same manyou always were except that you have an illness ..... gentle loving butterhugz sent tou petal

  • sorry that you've become afraid to go outside, don't really go out anymore myself anymore i found myself hiding in shops etc, wish i could fit behind a lamp post, ha but i'm sure now-days they would notice, hiding from friends used to drive me mad, i would torture myself felt so weak for doing so. I have a walker type thing have used it when i've been left with no choice but to go to the local shop myself, it makes me feel like such a weak person, don't like doing it, i am lucky where i live as i've such good neighbours, they in their own way suffering from illnesses, i feel so bad for you that you feel that you don't take your bin out until no-one see's you, i leave mine outside on the street beside my gate all the time, although i'm not a pensioner i live in a pensioners bungalow so the bin men empty it and leave it back for me, and the nightmare kids around here well they can't see how i'm feeling, i was in agony one night and flipped chased them from the street, not chased as such thank god they can't see how i feel they probably have me tortured ha. i don't really write things on facebook don't really understand it, people write they've just got up had breakfast etc, worried to i'd just end up moaning all the time on it, i like animals and kids neither can have any pre sort of idea's about you both just really want kindness i have a couple of grandkids love seeing them but gets harder to spend time with them still at the age were they don't notice why i'm not running about with them and my wee dogs just happy enough to be lying beside me, if you don't have one please go to a dog home get a small one that's on in years the love it will give you i promise will some days work wonders in lifting your spirit, crying sat crying watching a film last night on bbc 1 kerry mullagan and pierce brossnann was in it bloody crying like an edjit never mind when i'm in pain ha ups and down eh, seen your name fadedblossom i hope you don't feel like that deep down the faded bit i mean as no matter what we look like maybe there's some-one who might look at us and think we are beautiful, my wee dog thinks i'm a stunner ha,i've never heard the term butter hugs before made me smile, a lovely word, as i said to others who replied to me i will think of you when i light my candle i will have you in my thoughts hope it brings you some peace of mind and relief from how your feelings, what about happy hugs yours still sounds nicer. god bless xx keith

  • i'm wrecked chris but it will give me something to look forward to, later maybe replying but for now thank you for doing so. keith xx

  • Hi Keith

    As been said we all empathise with you on here. We all go through it day in and day out.

    Dont think you are less of a man for crying you aren't!

    I rarely go out now except to docs and even if they bothered referring me to pain clinic etc i couldnt get there, not only becaiuse it hurts too much to walk but because i get severe panic attacks if there is more than 4 people around me. I have to run and hibernate.

    Strangers are worse though so I know what you are going through.

    I have no friends left as like yours they eventually stopped asking me out knowing the answer was going to be the same.

    But you do sound depressed so please try to get this sorted asap, i found CBT helped a bit as well.

    It taught me to put myself first and pace myself and say no to others.

    Take Care, gentle hugs being sent your way.

    xx

  • i'm wrecked please don't be affended that haven't replied to you as well tonight but i promise i will soon, will give me something to look forward to. xx keith

  • Hi Keith, Im from northern Ireland too, Lisburn to b exact so understand what u mean living through troubles etc. Gosh think that was lot easier than living with this day in and out. REAL men do cry, no matter who u r, where u come from r what uv lived through. My husband comes from Belfast so I understand what ur saying it shows weakness etc but these people dont know what its like 2 live with chronic pain day in and out. They dont know how frustrating it is 2 b in constant pain and no matter what u get from doc it doesnt ease the pain. Its not only the fibro its all the other illnesses that accompany it.

    Have u any family 2 support u, some1 who understands. You can moan, shout, complain r just ask 4 help on here. There is always someone here who understands exactly how u feel. Gentle hugs 2 u Keith and maybe just posting on here will help u in some way xx

  • i'm wrecked i will reply asap thanks for your kind words keith xx

  • Hi Keith, you are not alone, a lot people that I know think the same - just because you look ok on the outside they think there's nothing wrong! I found CBT quite useful - You coud ask your GP to be referred to someone for it. I found that it helped me by making me feel better about myself (more confident). although sometimes I still feel isolated and a burden! I wish I had more family around but there is no one apart from my husband and children (immediate family) anyway I think that it makes you more of a man - there is nothing wrong with crying so do not feel there is - all of us on here can understand where you are coming from so stay in touch n if you want to rant n rave or laugh etc just log on n chat away - there is always someone you can talk too - gentle hugs to you and remember you are not alone xxxx

  • i'm wrecked i will reply asap thanks for your kind words, keith x

  • Hi Hagi,

    I like yourself , live here in Northern Ireland and understand all you have said, so so much. I too find us over here are left to get on with this illness on our own, we dont get the support and emphathy that everyone seems to have in Mainland. I myself am so down with it and my long marriage ended a few years back and know now it was due to me not being the bubbly , cheerful get up and go girl I always was. I feel the medical team on this end of the planet tell us we have an illness and just fill us full of medicines and basically tell us to get on with it. I also have more days when I cant face the outside world now and I am frightened and in so much pain . My friends and family are not the best at supporting and think it is a makeup illness and do not understand the true illness. Have tried by getting information booklets and giving them to read but am told to stop feeling sorry for myself as they have arithtis in their shoulder and another has hight blood pressure problems and told to wake up and think of what they are suffering . I wish I had arithtis just in my shoulder, as I explained to them , imagine having that pain constant all over your body and never getting a minutes relief from it. I suffer constant shooting pains in chest and did see doc and told my blood pressure is up and thats it got checked once again and left to it. I dont know about you or anyone else here but I feel so sad and alone with this illness and no one close or dear to me wants to accept my illness and I dont know what to do.

    Ok enough of my feeling sorry for myself and like you Hagi I find the only comfort I have now is in my prayers and its what keeps me going in hope things will get easier.

    Take care and be kind to yourself xxxx

  • Hi Zebbi, I live in Northern Ireland too and understand what you are saying. I count myself lucky in that unlike a lot of friends on this site I have a great doctor who has gone above and beyond to make sure I get all the help I need. I lost a great partner through this illness who basically could not understand how I wasn't the girl he met anymore, I didn't want 2 go out every wk, I couldn't make plans and life as we knew it just got harder everyday. Thankfully my kids have been great but then they dont know any different, its all they remember growing up. Thankfully lot yrs ago I met my hubby and we r now married over 6 yrs. (I was diagnosed bout 16yrs ago). Hes been great, 99% of time but even he finds it frustrating at times. I have few great friends but have also lost some friends along the way. Once you start turning down invitations at last min cos you are in middle of flare-up you soon find out who your real friends are.

    Feel free to message me anytime, r u on facebook. My details are michele-1967@hotmail.co.uk or Michele Mullan. Gentle hugs to u xx

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