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Frustration

Delicious_DeborahDelicious_Deborah Member Posts: 3 Listener
Does anybody else get very frustrated with the fact that they physically cannot do some of the things that they (& others) used take for granted, because of now being disabled? (For example; sitting on the floor, putting on their own shoes, riding a bike, taking long walks)

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Delicious Deborah

    Yep that sounds par for the course
    In side I am still 25 and fit as a flea, then reality hits

    CR
    Be all you can be, make  every day count. Namaste
  • charlenecharlene Member Posts: 555 Pioneering
    I loved to walk, now I have to depend on my dreams:)
    When the going gets tough, the tough get going.
  • deb74deb74 Member Posts: 754 Pioneering
    hi i used to drive but had to stop due to my spina bifida and scoliosis causing my neck to sieze up i now have oesteo arthritis which limits my neck movement.  so had to rely on the bus to get me anywhere. i then moved to the countryside where the buses only run every two hours so i started to walk evrywhere. i then moved closer to town. my arthritis is getting worse and i stuggle to walk anywhere these days. i try to go for short walks everyday just to stop me seizing up. i used to walk to my parents house which is about a mile and a half from where i live but struggle to do that now.as for sitting on the floor i can do that but have to drag myself of the floor using the coffee table and i have never been able to ride a bike because i have hyrochephalus which affects my balance
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Delicious_Deborah How are you?  Pleased to meet you.  I was born with my disability.  Now as I age disgracefully.  Becoming life long President of the Old Man Grumpy  Club.

    I shout and holler all the time for the small tasks that turn into sagas with an all star cast.  Mini dramas on the TV they should be put.

    Make for interesting reading and watching.

    When I was a legend in my own Lunch time.  Could do anything.  Problems started with the little things doing buttons and laces.  Solved that T shirts and straps for my boots instead of laces.  Then I forget to take my glasses off to put my T shirt on.  Got caught.  So I take off my glasses and then I can see where I have put them.  Blundering around always where are they .  Finding solutions to make and cook food.  See my posts .

    More like see my kitchen walls splattered with sauce forget to put lid on blender.

    Now struggle with 21st Century technology and the worse one I do not understand it.  Everything changes.

    I am trying to change to this modern world.  Telephone banking.  My friend asking how do get your money do shout down the phone.

    I do not know.  My mobile phone got a hang of it sort of.  Can not hear a thing.  Smart phone is it.  So smart I hardly use it.  Send text and then some smart alec says you have apps for you phone.  You what is that a medical condition.

    Need to go to shop bought it from.  Nice comfy seats while they explain to me.

    Getting up and about no way too slow for every body in my car.  Even the vicar over takes me on his bike.  I was amazed caught for speeding.  Howls of laughter from neighbours and friends dabbing their eyes with laughter.

    How fast well it was down hill still got caught how fast laughing to extreme.  That was four hours plus long.

    More to come and yet suffering like this.. Watching TV had to put subtitles on even so the plot did not match to the sub titles.  Come the break still playing the last half hour while I am in the dark.  Can not follow any of drama's films anything.  Blitz of camera angles and I am saying to myself.  Lovely table in that drama wonder where I can get that from.. Have a look in the Argos catalogue.

    So it goes on this life of mine as I fight injustice and want to ram the sales man head into the latest electrical product he is trying to flog to me.  As I all I want is some thing simple to use.  It got this to that as I look with a scowl .  If I press that button will you disappear I say to my self.

    I wish all cars have ejector seats so the irritating neighbour you have kindly offering to help out shopping.  Complaining everything especially your driving.  Look out for that cyclist.  Itching hand on the knob of the gear stick .. Hoping you can press the button and away she goes up in the air.  Peace at last .  My ears ringing last time like the bells.  I never said a word.

    Just a small glimpse of my life 

    Take care
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • maid08maid08 Member Posts: 307 Member
    edited March 2018
    i used to walk miles alone  now prob 30yards at a push ???simple things like cuting toenails is a struggle for breath   not being able to just jump in car go to see grankids or do the garden  most of us suffer almost a 70percent fail in how we were to how we are now  but we struggle on waiting  i myself wil be glad not to wake up only thing is in youer head you are still 18 fit can do everything then bump life comes back and you cant
  • maid08maid08 Member Posts: 307 Member
    Hello @Delicious_Deborah How are you?  Pleased to meet you.  I was born with my disability.  Now as I age disgracefully.  Becoming life long President of the Old Man Grumpy  Club.

    I shout and holler all the time for the small tasks that turn into sagas with an all star cast.  Mini dramas on the TV they should be put.

    Make for interesting reading and watching.

    When I was a legend in my own Lunch time.  Could do anything.  Problems started with the little things doing buttons and laces.  Solved that T shirts and straps for my boots instead of laces.  Then I forget to take my glasses off to put my T shirt on.  Got caught.  So I take off my glasses and then I can see where I have put them.  Blundering around always where are they .  Finding solutions to make and cook food.  See my posts .

    More like see my kitchen walls splattered with sauce forget to put lid on blender.

    Now struggle with 21st Century technology and the worse one I do not understand it.  Everything changes.

    I am trying to change to this modern world.  Telephone banking.  My friend asking how do get your money do shout down the phone.

    I do not know.  My mobile phone got a hang of it sort of.  Can not hear a thing.  Smart phone is it.  So smart I hardly use it.  Send text and then some smart alec says you have apps for you phone.  You what is that a medical condition.

    Need to go to shop bought it from.  Nice comfy seats while they explain to me.

    Getting up and about no way too slow for every body in my car.  Even the vicar over takes me on his bike.  I was amazed caught for speeding.  Howls of laughter from neighbours and friends dabbing their eyes with laughter.

    How fast well it was down hill still got caught how fast laughing to extreme.  That was four hours plus long.

    More to come and yet suffering like this.. Watching TV had to put subtitles on even so the plot did not match to the sub titles.  Come the break still playing the last half hour while I am in the dark.  Can not follow any of drama's films anything.  Blitz of camera angles and I am saying to myself.  Lovely table in that drama wonder where I can get that from.. Have a look in the Argos catalogue.

    So it goes on this life of mine as I fight injustice and want to ram the sales man head into the latest electrical product he is trying to flog to me.  As I all I want is some thing simple to use.  It got this to that as I look with a scowl .  If I press that button will you disappear I say to my self.

    I wish all cars have ejector seats so the irritating neighbour you have kindly offering to help out shopping.  Complaining everything especially your driving.  Look out for that cyclist.  Itching hand on the knob of the gear stick .. Hoping you can press the button and away she goes up in the air.  Peace at last .  My ears ringing last time like the bells.  I never said a word.

    Just a small glimpse of my life 

    Take care
    hi bruv  not seen u for years strange how we both are the same ??my grankids say grmpy grumps here mum hahaha to me the worlds gone mad and im the only sane one on it  nope its im that old man in street with no sense of adventuge now
  • BarbiesnemesisBarbiesnemesis Member Posts: 86 Pioneering
    It frustrates the hell out of me and sometimes I cry. At the moment I'm trying to pace myself as advised by doctors which helps a bit. It scares me that I'm 54 now and I don't know how much worse I will get.
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Not until recently.  Made worse by the assessment in fact.

    I want my own independent place, not warden supported. General thinking is I wouldn't manage, there is no where else at this time, and I can't be totally alone at night.

    I want to learn to drive, I desperately want a car. I think I realise that's a non starter but I can get a blue badge for rides in other people's. Not the same though is it. That's almost like telling someone who wants kids to borrow one.

    At the stage where if there are too many adverts in the programme I am watching, I have forgotten what I'm watching! 
    Forget what I was wanting to watch despite guide next to me.
    To many character can't follow the film. 
    Do not follow me, I don't know where I am going.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi whistles

    Have you looked at learning to drive with motability ?

    CR
    Be all you can be, make  every day count. Namaste
  • Delicious_DeborahDelicious_Deborah Member Posts: 3 Listener
    Ty for all the comments back.... such a wide range of responses! Much appreciated! It's good to know that others can relate!
  • WaylayWaylay Member Posts: 922 Pioneering
    Definitely. I try not to think about, bit my PIP review has brought it all back. Lately, my brain keeps saying, "42 years old, and you can't even cook for yourself." Ugh.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Waylay Pleased to tell you never too old to start cooking.  Helps.

    If wish to can advise and give some tips, tricks and shortcuts.

    When I first started cooking and when I mean cooking.  By way not all foods need heat or use cookers.  Ovens.

    I found saving loads of money so that my even now.  I am amazed how much I save.  You might be interested if you are look out for my posts or find them.  Done several.

    I hope you find it interesting make a start.  Have a look at community wellbeing service.

    By way I only once or twice ever bought microwave meals when I was a young lad now.  After 20 years plus.  I try inspire others.

    First meal every cooked was the simple stuff usually Italian and now graduated to my own recipes.

    Please have a look at trying for your self.  Time is always an excuse but there are gadgets and kitchen equipment that can help you.

    I hope you have a go.  Nothing wrong in making your own food and I do know what is in it.

    Final point have fun I do every day.  Creating fab food.  Experiment with flavours spices and herbs.

    I am here to support you and any body else plus ask me anything .  Either here or on my wall.

    I know also few of the community glad to help and advise.  My friend  @Victoriad is one as well.  Comes up with great ideas and solutions.

    Take care

    The One and Only Spiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • WaylayWaylay Member Posts: 922 Pioneering
    Hello @Waylay Pleased to tell you never too old to start cooking.  Helps.

    If wish to can advise and give some tips, tricks and shortcuts.

    When I first started cooking and when I mean cooking.  By way not all foods need heat or use cookers.  Ovens.

    I found saving loads of money so that my even now.  I am amazed how much I save.  You might be interested if you are look out for my posts or find them.  Done several.
    Hi @thespiceman ! Now I understand your name!

    You're very kind. :) Unfortunately, it's not that I don't know how to cook (I dated a Bangladeshi chef for years - my curries were famous; my bro is a sous-chef in a very fancy restaurant in Montreal; and I lived in a housing co-op in my 20's, and cooked for 40 people once a week for 3 years). I loved cooking.

    My problem now is that I physically and sometimes cognitively cannot do it. :/ Some days I can't stand at all (crawling to the bathroom - not humiliating at all :/ ), some days I can stand for 5-10 minutes, a couple of times, with breaks in between, but in doing so my neuropathic pain begins to increase, my sciatica gets worse, and the chances that I'll have a back spasm (agonizing, impairs my mobility, can last for days) get much higher. I can sit and do some chopping, etc., but sitting is usually not good for me either, and even on reasonable days I can't sit for more than 15-20 minutes, maybe twice. I have a few useful aids - perching chair, wire basket to lift out of pot with pasta in it, slotted spoon, sometimes buy pre-chopped veg (but they're so expensive!), but even with all that, cooking usually makes me much worse, and often means that I have to eat in bed. :/

    When I'm on a lot of pain meds, or have screwed up my MH meds, I get so out of it that I boil pots dry, slice my hand up with knives, dump boiling water on myself, and once I even reached into a pot of boiling water to pick out a stray hair, scalding myself badly. Of course, this kind of thing makes me really anxious about cooking, and I have depression and anxiety anyway, so I often get too anxious to even go into the kitchen, especially when a housemate is there. Other times I'm too depressed to have enough motivation to get out of bed, never mind make something and eat it. :/ I've lost over 3.5 kilos since about September because of not eating, and that's with my partners feeding me up, friends and partners calling/texting to remind me to eat, a couple of friends making food deliveries, and one of my partners coming over 3 times a week with food and making me eat it. :/

    I miss cooking. In particular, I miss cooking for other people! I was good at it (although not amazing), band it made me happy to invite people around and feed them. It was one of the ways I showed love. Now I might chop up a couple of veggies for a friend and keep them company while they cook, but that's all I can do.

    On a few days I might boil pasta, add sauce from a jar, and then put cheese on top, but that's about it. I sometimes make porridge on the hob - put all bits in pot, turn on hob, set alarm on phone, go and sit down for a few minutes, get up and stir, sit down again, etc. Even on my best days, I can't wash the dishes afterward, and often forget that they're my dishes by the next time I go to the kitchen! Mostly I graze (a couple of spoonfuls of peanut butter, a carrot, 2 tomatoes, a slice of bread with butter, a couple of biscuits), or buy ready-made food when it gets marked down. Also, one of my partners got me this stuff called Huel, which you mix with water or milk (I use soy milk). It tastes OK, and it's a complete food.

    *shrug* I try not to think about it.

    Luckily both my partners and several of my friends are really good cooks, so I still get yummy food sometimes. Oh, and some friends got together and made up freezer-bags of food that I can just stick in a slow-cooker for a few hours. Those are nice. :)
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Waylay Good morning thank you for reply.  Most of all sharing.  I do understand your situation.

    You seem to have got everything covered.  I would just like to say thank you for your stories and also what it is like to cope.

    Getting a meal is important the right balance.  So I am aware of your frustrations.

    I had friends in similar scenario's and now use what I have learnt from them.  My own experiences to devise and create menu's for them.

    Story is had friends with various disabilities many like yourself.  Hanging about waiting for support to arrive.

    It is half past ten he's ringing me up.  No breakfast no wash or shower.  I am on stand by.  So I arrived so many times to find him and the support arguing over his care.  More interested in going home.  To my friends negotiated with them to try to do simple stuff.  While waiting.  Toast tea and how to use a microwave.

    Success in small measures.

    I have disability of hands and fingers can not stand too long.  Make recipes to adapt my own disability.

    I am glad you have your support and that is good.  I would suggest, these are ideas and useful tips.

    Use your slow cooker more.  Buy food processor vegetables easy to chop.  I do batches of vegetables and especially onions.  Blender great for making soup, sauces.

    I also look at Couscous and Bulgar wheat can be made with boiling water stock cube herbs.

    Great thing make a extra portion put in to food processor.  Blitz up one whizz with herbs and leave.  Use cold next day or so.

    This I use with salad stuff.  Tomatoes Cucumber and anything like vegetables that are raw Carrots, Peppers .Zuchinni.  Grated in.  Using food processor slicer attachments.  Make your own Coleslaw,  Using a food processor slicer attachment.  Any thin sliced Vegetables.  In Mayo plus lemon juice touch Horseradish. 

    The vegetables diced are expensive.  Soup mixtures are good.  Buy frozen vegetables nothing wrong in that.  I do.  I buy Peas, Green Beans, Broad Beans Sweet corn, odd occasion.  Also Spinach.  The amazing thing now the range is so vast.  Seen and have bought Chinese mixes and mixed bags of Oriental Vegetables.  Some others looking at Butternut Squash and Sweet potatoes already diced for soup.  I use anti pasti jars that have roasted peppers and sun dried tomatoes.

    Instant Microwave rice and Noodles straight to Wok. or pan.  You can put these into soup and other dishes no need for cooking.  Warm through.  Especially microwave rice whole meal good filler for soup.

    Ask me anything I have probably other ideas, just a few if they help.  I have some posts on one pot curry sauces.  Using blender.

    Wish you the best, please come back as me anything.  Just recently made friends with a lady called @Victoriad.  We share ideas and solutions. 

    I did this last few months ago. Lad who I had known has shall we say his disability got worse.  Find him angry frustrated annoyed, his coordination not good.

    Wants simple food.  So I took time out , rang me.  Went around various Supermarkets.  Advising want to eat.  Spent a sum on kitchen equipment he can use, with out problems.  Has a literacy issue has never learnt to read.  So went around.  Devised a menu of meals he can do.  Simply and most of all safely.

    Take care lovely to meet you
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • janejrjanejr Member Posts: 142 Pioneering
    This is why I love scope . I read all your posts and know I'm not alone in my thinking. I used to be so fit and walked miles for the sheer joy of it. Always had physical jobs and loved being active , never sat still always so busy.
    Now I'm shattered getting showered and dressed. Frustrated at having to do a bit sit for a bit . Just doing the basics hurts. Always tired as pain wears me out. I'm nothing like I used to be. But then there lies the problem , never look back never compare the life I had and the one I got now and then it wouldn't be so hard to accept
  • WaylayWaylay Member Posts: 922 Pioneering
    Thank you, @thespiceman! I'll definitely look into some of those things! My Dad owes me a food processor, actually (long story), so maybe I can get him to chip in for one.... Or maybe I can find one in Freecycle... Thanks for the ideas!
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Hi whistles

    Have you looked at learning to drive with motability ?

    CR
    I got excited about the driverless cars until I realized you still need an actual license for it. 
    One day Alexa might be installed and off the car goes. 

    Do not follow me, I don't know where I am going.
  • BarbiesnemesisBarbiesnemesis Member Posts: 86 Pioneering
    edited March 2018
    Hi @Waylay, I can really empathise with what you have said; having to sit down and rest, do a bit more, sit down and rest - arghh - it drives me nuts. Don't get me started on the back spasms - nightmare! One of the things I was thinking though was, whether you could invite your friends over and have a 'cooking party' - you give out directions and they do the cooking :)  You could join in with the bits you could manage too. 
  • yingtongyingtong Member Posts: 37 Pioneering
    Hi every one, I feel sorry for my loverly wife who has to put up with me,and like C.R I think 25 and fit as fiddle ,but I'm stuck in a wheel chair.
  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    Hi 

    Interesting reading everyone's replies. for me the physical difficulties have always  been there, yes as I get older it becomes more frustrating and some days I want to scream. For me my biggest frustration is the disabilities people can't see. I have epilepsy and since my last seizer my ability to understand stuff has been greatly reduced. I used to be able to read well and now I have to rely on a screen reader and often misunderstand forms. when my frustration gets bad I can come across rude and my carers don't always understand its because something has changed and I don't know why. Having a hidden disability I find is much more frustrating for me but I can empathise to what everyone is saying especially about the food
  • WaylayWaylay Member Posts: 922 Pioneering
    Hi @Waylay, I can really empathise with what you have said; having to sit down and rest, do a bit more, sit down and rest - arghh - it drives me nuts. Don't get me started on the back spasms - nightmare! One of the things I was thinking though was, whether you could invite your friends over and have a 'cooking party' - you give out directions and they do the cooking :)  You could join in with the bits you could manage too. 
    That's a great idea!! Thanks!! Sorry you suffer the same problems, but at least we're not alone!
  • janejrjanejr Member Posts: 142 Pioneering
    The other day my washing line broke and my bedding landed in the mud. Not a drama for most but nearly gave me a break down. So much effort all gone to waste , and then I couldn't fix the stupid useless washing line.
    There are so many things that need doing around my home and I used to be able to do it all
    So very independent, never needed any help from anybody. Used to decorate the house move furniture, even really heavy stuff.
    I was very house proud maybe a little OCD with it. I always done stuff straight away. Never put nothing off until tomorrow.
    How things change. Frustrated doesn't even come close to how I feel
    I'm learning how to be patient , and that the house doesn't have to be spotless and the decorating will eventually get done. Just not by me
  • WaylayWaylay Member Posts: 922 Pioneering
    @janejr I hear that. So frustrating!
  • janejrjanejr Member Posts: 142 Pioneering
    What the so called examiner's don't understand is my disability is with me every day and not on just on bad days. My whole life revolves around it. I have to plan everything I do around it. So many days that I've planned to do something only to have to forget it as I'm to Ill and can only hobble around in pain.

    I went out yesterday and slowly painfully hobbled around the market. Didn't go far but felt so good to be out

    I knew I'd pay forgot today. Joints all swollen , not sure where hurts most.
    So frustrated and only you all on scope can truly understand me.
  • WaylayWaylay Member Posts: 922 Pioneering
    @janejr Yeah, I hear you on that. I sometimes want to yell at them, "When I say 'good' day, it's just better than my average day. A good day for me is still worse than your worst day, you judgemental, know-nothing 'Health Professional'".
  • angelica285angelica285 Member Posts: 2 Listener
    Hi delicious deborah I can relate to that.  Able bodied people don't realise how lucky they are.  I have watched people walking around standing chatting going out and socialising and I miss it.  Its not the same when your in a wheelchair
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