How I feel

Hi I know people will probably read this and say, well of course I feel that way. I don't think there is a day that I don't wish I could get back to normal. To only have to think, right what have I got to do today, work, social life, independence. Society are clueless as to how they exclude people with health problems, injuries, disabilities, chronic illnesses. You contribute and earn your way in life. People notice you as your working or socialising. Then in one day everything you knew is pulled from under you, and you become invisible. Your battles then begin, treatment, care, finances, it can be relentless. I always say I wish people had a day in our shoes and then they would have more empathy with us.

33 Replies

  • I guess it's not their fault that they don't understand....but yes, infuriating for those of us that have been through the mill.

    So tired of people saying how lucky I am....they have no idea how much I have been through to get here.

    Keep your chin up ! ☺

  • I get the same moo, or oh you poor thing, your so brave. !ts a case of you have to get on with it, you can't give in because your then giving in to it all. I got so sick of everyone asking me how I was or wanting an update on treatment, meds etc. I just wanted to say I have a condition but I'm still me, I'm a person not a condition.

  • Wise words angelfish...but then what is normal? A lot of people have hidden crosses to bear that they don't talk about to other people...some people actually can't see past their own backyards....

  • That's very true, we always think someone else is happy, we don't see their worries or pain. I think its a fine line when your live is changed so dramatically. Life can feel alien your extremely lucky if you have supportive family and friends. There are a lot left to fend for themselves. People are under the illusion that we want to talk about our conditions, when all we want is for normal conversation. We haven't lost our sense of humour can talk about lots of things. We're not just appointments, treatment, meds.

  • I feel like I have become an illness

  • Do you feel it is dominating everything in your life?

  • No, I just feel like other people seem to try and organise my life and I don't get much choice.....

  • Do people suddenly think they're experts or think they have to think for you? Everyone around me either would tell me what to eat, what activities I should do even tell me what meds I should and shouldn't take. All the conversations were always, how was I feeling when have I got appointments. I got to the stage where I would change the subject. You may have a brain injury but your, your own person and its your life, remind them of that x

  • Thanks angelfish...thanks for your kind words ....

    .I remind them on a daily sister just launches into full on lectures...every time I see her....and can't understand why I don't visit.....

  • Someone told me a story to tell people to give them some insight into what we deal with. Its called twelve spoons, you give the person twelve spoons (can be anything) and you ask them whats the 1st thing they do when they wake up. When its something where you would struggle you take one spoon from them and you carry on through the tasks of the day comparing them to what it would be like for you. When they end up with just a few or no spoons then you say thats how your life differs to mine. Until you've walked in my shoes you will never know, you will never understand, but you should respect me for surviving and coping.

  • That's a pretty good spoon drawer is a bit messy at the moment lol

  • Oh you can't have messy drawers love lol

  • Lol

  • Normal is a setting on a washing machine or dishwasher. Haha That's all.

  • I like that, I always say normal is boring :-)

  • I like that

  • I'd be lost without my family and friends.....and of course the fluffies....they're so non judgemental....

  • Your lucky all mine disappeared

  • I agree with you and sometimes think that way especially on bad days but in fairness before i had my stroke i had very little knowledge and even a naive view of just what people have to live with. My perspectives of life since have changed an awful lot and for the better and i am more aware and sympathetic of other people's illnesses. Nearly two years on my life is very controlled with routines to enable me to live as normal life as possible, anyone who doesn't know me well wouldn't have a clue x

  • I think what Rachel says is so true. For those who have no outward sign of their bi, it is very difficult as those who don't know them well just assume ..... We have had problems where my husband has been with others and I have thought he is safe, but they don't know about his problems so he has got into a muddle or got lost. It is never easy....

  • Very true, I think it has been made a very lonely world at times for people with injuries or conditions, and their carers. I use to have a care coordinator from social services, and use to get funding for equipment, extra home care, equipment etc. It use to help, but then all the cuts came in. The care coordinator came and told me I was no longer eligible. She said her bosses had told them to tell people that they were to rely on family/friends or neighbours, and if you didn't have any of those then you would be in a mess. I just hear and see everything that's happening in this country and feel that we're going backwards. I have a concern is for those who are really isolated, struggling and very vulnerable.

  • It is a worry, isn't it. All our friends are our age or older. When we cannot cope, who will be there to give us a hand when we need one? Most of the younger people are involved with their own lives these days, they don't even notice the older people or those with particular needs. There will, I think, be more and more cases of people being found dead in their homes having been there for some time and no-one noticing. At one time the milkman, postman, etc would notice if someone wasn't around but I don't think it would happen these days. Sometimes you feel that even with all the new technology we have, life is going backwards for many people. What a sad state of affairs!

  • Your so right, we've become a society where people are living in their own little bubble and don't notice others. I worked for a construction company a few years ago. I had to visit people in their homes and schedule works. I went to an elderly ladies house, a semi detached house. She took ages to answer the door and when she did I saw she was riddled with arthritis and it was painful to walk. She lived and slept in her lounge, with a coal fire and she had to carry a bucket of coal in every day. She had no family, and she had to pay her neighbour to shop for her and if she needed anything else doing. I was shocked and spoke to the authorities who didn't know anything about her. When we finished the work I visited and took her flowers and chocolates, she started to cry and said no one had ever done that for her before. That is our society.

  • That so true Rachel. In society unless people can see a physical loss they are clueless. When ever i go out in wheelchair there are still people that stare at me or walk in the way of my wheelchair its unbelievable. I am like you I have an empathy with others coping with conditions. I think when your dealing with a condition or injury, in my eyes you have a strength that no able bodied person could ever have. We have to cope with the accident or the illness that has given us these problems, and we have to learn how to adapt.

  • I've always been very empathetic with people. I saw a stroke psychologist for a while to help me prepare for returning back to work. She said even post stroke i had a real deep insight and empathetic nature with other people. I believe having the stroke has made me even more understanding if only because of how my illness has been perceived by others.

  • When I first got injured and was told to go home and do nothing, some peoples reaction was quite surprising - you can now get on with doing all those jobs around the house, can you come and build me a fence, can you come and do this ............

    Even my wife whom is an ex-nurse asked me to paper the ceiling ! Not an easy task at the best of time neigh on impossible when you have a raging headache, problems with depth perception and vertigo !

  • This is the problem, if you had a broken arm you wouldn't be asked to do physical things. But because its not a visible thing they think there's nothing wrong, that is until you either make yourself ill trying to do those tasks. Or you lose your temper because of the pain and frustration, you can't win can you.

  • oh dear, just been reading everyones posts above. It makes me feel sad and trapped.

    Sad Jules


  • Jules don't be sad its good to get these feelings and frustrations out, at least we have an outlet. It would be far worse for us all if we just kept it all in. Life is bloody hard, but I'm a believer in there are two paths we can choose from. One is being the victim, and wrapping all the negative around us. The other road is to fight, to accept, to be stronger because of it. xx

  • I shouldn't have read this post feeling the way I feel today.😰 Xx

  • Please don't let anything said get you down. We are just voicing frustrations, and yes society is rubbish and there's not a lot we can do to improve things for everyone. But we can achieve little victories and we can stick together and support each other x

  • Oh no don't worry it's nothing that's been said here. It's just the usual upsetting thing that I have in my life back again and the posts are all totally correct....they allow me to see I'm not the only one who goes through grief because of this hideous invisible illness! ...I just meant I'm on a bad day because I'm experiencing yet again the effects of invisible illness and I too am struggling. Xx

  • Its cruel what our bodies put us through, and to the outside world we look ok. They never tell you after injuries or illness causes this damage, that we will have grief and feel so much loss. You can lose everything you've built it can disappear overnight. They don't help you through that or prepare you for that.

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