The world

Does anyone else feel themselves withdrawing from the world? It's like my body is there but my brain is in hiding. I try to get out and go and do but inside I am losing me. I feel like there is the person that the world sees. Then there is this person that is in so much pain that she just can't move because it hurts too much. The person the world sees laughs and goes on like everything is great! Then there is another part that is inside that hurts so bad they can't move.

29 Replies

  • I was thinking about friends and I have not made any new ones for years, and the old ones have left. I did see one yesterday who was down here on holiday and I loved chatting. I do live in the same house as my son but he works nights and studying for a masters so I can go days without any conversation.

  • Hi, yes I am feeling the same at the moment, I'm sorry I'm not in a good place to offer you much, I just wanted to reply to you as no 1 else has replied yet. This site is a wonderful thing, I don't write much but I do get a lot of helpful advice from it, as well as the feeling some 1 understands. I am lost for words what to say to you, take care, someone will reply soon with some wonderful advice for you. Best wishes x

  • Hi Regnofibro1,

    I know what you mean and understand completely how you feel. I've been struggling with this for months. Feeling as if i'm a different person from one hour to the next. I'm trying to mix in with the outside world - going out on short trips to the local shops, the dentist, gp etc. There's a really good public transport system where I live. The bus stops are just a couple of minutes walk from my flat it takes me 3 times longer to walk the distance and I'm so exhusted afterward (even with my stick).

    I get really panicked when I have to take the bus, because I'm so sensitive to everything - the high pitched ding of the bell, the jolting of the bus when the driver pulls off or stops and worst of all the people on the bus who I can't stand sitting next to me. Let alone the noise from mobile phones, loud conversations and children screaming. I try very hard to avoid busy times - rush our/school kids etc, but sometimes it cant be avoided. Even going to the pain managment programme where I get hospital transport is really tough because the driver usually picks up other passengers, which makes the journey 3 times as long which is painful and makes me more anxious.

    When I do pluck up the courage to go to the shops, I'm all smiles, telling jokes and being cheerful. Most of the time it's to coverup how anxious I am and how desperate I am to get home. I live on a slight hill and noticed how much my walking has slowed down and how self consious I feel. Before fibro I used to zipp around the place, loads of energy and full of vitality. I don't like to think of how the world sees me now and avoid people who knew me years ago because they would be shocked by how much I've changed.

    The real me is strong, determined and cheerful. The quick witted joker in the pack who makes people laugh without trying. A problem solver who gets things done and has for most of my life seen the glass half full. Its difficult to keep that up now. It hurts physically and emotionally.

    I totally get where you are coming from when you mention showing the world the outside you when the inside you is crying because of the agonising pain that fibro and the myriad accompanying conditions that go with it.

    This forum is wonderful for it's compassion as well as the silly humor we can all share. Thank goodness we hav each other.

    All I have to offer is love, understanding and empthy - hope it helps a little.

    Thank you for your honest and touching post.

    Hope you have a good weekend,

    Love Light and blessings xx❤xx

  • I see it like wearing a happy, cheerful mask to present to the world, whilst inside your quietly screaming. I keep thinking one day I'll let the mask slip and present the me I am today but no ... mask still on, stubbornly refusing to drop ... still presenting a brave face ...

  • What is it with the brave faces we all put on - including myself. I agree, if the mask dropped at any point no one would recognise us!! x

  • you and me both darling. scary isn't it? much love xxxx

  • Yes my friend I felt like that all the time , when I was still working and trying to fit in and pretending I was ok ! When I finally gave in and became at peace with myself I stopped . Hugs Chris xx

  • That sounds so very familiar. I know exactly what you mean. It is so very difficult for others to understand what we go through. I find it difficult to understand. I can't say that yes, I'll be ok on Saturday next week to meet up. 🐸

  • Yes me too, it seems we all feel sort of alienated from the world, my friends go their own way now we used to have lots of shopping trips etc but I feel I can't keep up with them so I don't bother etc so much, I go out with my OH but he's not really into clothes shopping lol. And like Sorebones says you can't plan ahead because we don't know how we'll be that day, sometimes I wonder where it's all going to end, but I try not to dwell on the future too much, Live the day, it's the only way 😃

  • Don't sell your friends short. Sounds like you. withdrew from them . Instead of a shopping trip . Plan to meet for lunch. You can sit and visit, catch up. Everyone deals with something, you might be surprised at how understanding your friends might be . At first, maybe meet for coffee or breakfast. Maybe one or two friends, just short get togethers. Might help you feel like you are still a part of this world. 😘

  • No I didn't withdraw actually they don't do just lunch/coffee we used to plan a whole day out which I can't deal with any more, my friends are very understanding of my illness I just don't expect them to alter their plans just for me that would be very selfish of me , I still see them regularly for a chat but just don't do the shopping trips anymore it's too much for me and they understand that, meet for breakfast you must be joking , I don't come around till lunchtime lol 😃

  • Hi

    A huge yes, to your question.

    As you say, I try to act normal and don't want to seem unwell to others who don't know me. It's just an act, that sometimes I can pull off and other times I can't.

    I am learning from this site though that many out there are the same and we shouldn't hide our illness. It's hard to come to terms with especially if you are not in your twilight days.

    Keep going though, as I'm sure the day we give up will be worse.

    Best wishes.

  • My friends all know I live in pain daily, they are all understanding. They all deal with something too. Do what you can, when you can and be open to finding new ways to enjoy get togethers!

  • I have lost my confidence pip woman asked if I could go out on my own I thought no I can't cos just no confidence at all


  • Well thank heavens it not just me that feels like that I know that won't help but it's made me feel I am not going round the bend I have noticed one thing recently if I go in a crowded room of people say a café the noise really gets on me on edge and I feel I am the only one on my own I used to love my solitude

  • i totally understand this because this is how i feel most of the time, being ill has made me so withdrawn, i haven't seen any of my friends for years. they just seemed to disappear and not be interested when i told them i was ill. then i just found myself withdrawing myself from things more and more. until i got into a state where i wouldn't go out at all. i'm slowly getting better but it's a long road.

  • I do understand where your coming frkm.I do the same as you as we laugh to keep from crying.I call it the fake it to you make it side of life lol .😅 I wish you the best. Peck🐤

  • I can totally understand where you are coming from. Were such good actors we should be on the stage. We paint our brave faces on and go out into the world but when we get home we take the mask off and our true hurt is revealed. I for one will keep in trying but so often feel exhausted by the effort. I am often on some kind of auto pilot going through all the motions but hiding my true feelings.x

  • Yes most definitely. My friendships have dwindled to none since I got fibro. I go to a weekly stitching group and go out with my husband, but rarely alone as I have lost my confidence. I don't like being like this but at the moment can see no way out.

  • Hi my friend,

    I am so genuinely sorry to read that you are feeling this way, and I sincerely hope that you start to turn a corner and pick up the pieces of your life again. Sadly, I can truly understand where you are coming from as I have little energy leftover these days for anything social. I want to sincerely wish you all the best of luck and please take care of yourself.

    All my hopes and dreams for you

    Ken x

  • Thank you Ken. x

  • Oh yes, I can relate to that totally. Everyone else sees a smiling face, but inside I'm crying for the old me, the one who could do things effortlessly, without pain. Everyday I think I'll be better, more active, organised, but each night I lay in bed trying to sleep and wondering if things will only get worse. It always seems worse in the early hours of the morning.

  • Probably because you are tired and your body needs sleep. I find short visits /trips work best .

  • Oh yes, you have described how I feel perfectly! I only go out when I absolutely have no alternative, and while I'm out I get as much done as possible, chatty, having a laugh with people, as helpfu as I can be; and folk seem to respond when they realise I might be old but I'm not grumpy!. Then, when I get home I pull up the drawbridge and become a totally different person, painful, depressed, withdrawn, moody, irritable, lonely. I just seem to be able to put on this act when I'm out, like a shell, but it all slides off when I get in. I sometimes joke that I could get suicidal, but I just haven't the energy.

  • I think when we do get out, we are distracted from the pain and fatigue, we engage with others and for a brief period of time enjoy being with others. It is when we go home we are perhaps exhausted and start paying for the outing. I do understand but in my case I am also surprised that for a brief period I almost felt normal . Keep pushing , keep living, do what you can , when you can !

  • I have a fantasy....would like to own a large field well out of town, stand in the middle of it and just let rip, yell, scream, growl perhaps even hysterical laughter whatever feeling comes up, all the feelings that are being repressed because of putting on a mask due to physical and mental health issues that are not easily understand by wider society..... am sure I would feel a lot better....... anyone like to join me!!

  • REGNO, you were having such a good time just recently ! Have you changed your meds ? Sounds like you are trying to be someone you are not . Changing your surroundings, your lifestyle will not change the fact you have Fibro. When you have Fibro and in a lot of pain, you must pamper yourself a bit, rest more, do those things that ease the pain . Slow down a bit, listen to your body. Find your quite place and talk to God for a while , always brings me peace !😘

  • If only it was that easy 😃

  • I am sorry you are feeling this way. Everyone has a "social face" they adopt, it's a facet of their psychology. In our case the facet become a mask when we loose one thing at a time. It's important that you have people around you that will accept you for who you are as long as you do not abuse the innocent disclosure bit, which doesn't apply to you. Those who see and accept your soul without demands to comfort to their expectation of happiness, joviality, etc.

    I dissociate so I'm never 100% myself. I am zery, zery slowly, tortoise slow retrieving parts of the child who was abuse. Bits I've lost. I don't know if I'm making much sense. My advice, look and keep close genuine people. They exist. Never stop looking and valuing them. They are our real wealth. 💗


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