Fed up again

Ankyspond

Sorry just fed up again, been shopping with my husband for couple of hours and now in sheer agony! Feel like my ankles and knees gonna explode, so so fed up of this crap disease just want to be able to do something normal without crying in pain after!

Hitting the Malibu and coke now, mixed with the painkillers I should be flying!

Sorry to whine but better out than in. Xx

stickywicket

Mine's a rather nice Aussie cabernet sauvignon so we should be more or less on the same wavelength, Ankyspond.

However, I'm going to use a forbidden word - wheelchair. Have you thought of one for shopping trips? Or, if you're in a big mall, one of those scooters they let you use? I know you'll feel like an idiot the first time you do it but, hand on heart, would that be worse than you're feeling now? Think about it. My golden rule for all the disability aids is - if it makes something possible that would otherwise be virtually impossible then go for it.

Cheers.

suzygirl

I have to agree with SW, use a chair. It saves energy and pain. As to the painkillers, enjoy!!!! I like a shot of jack daniels myself, far better than any pain killer. Naughty I know, but it works.

Good to share with those who understand. Have you been assessed by physio and OT for help with walking and daily activities??? They can be really useful. Ask your gp to refer you or your rheumy.

Hope tomorrow is a better day x

Ankyspond

Thanks guys for your support, don't think mentally ready for chair/mobility scooter yet. I know that's silly but just the way I feel at the minute. What makes it worse is I am able bodied and look ok but it's the after affects that get me down, I don't want to give everything up so need to be bit more sensible and accept it I suppose.

I have been to OT and all the other stuff but I manage most days so that's it, i work three days a week and cos put on a front nobody really understands. Very frustrating and upsetting. When feel like I do today almost wish it was something I could fight and win or lose if you know what I mean.

Thanks again for support means a lot, need another drink. X

traluvie

Malibu and coke.. mmm lush..
That should definately enlighten you..
Hope your feeling better now you have your feet up..
Big hugs (((((X)))))

hileena111

Hi
Before I read stickys post I was thinking about a scooter....not a wheelchair {For me anyway} because I dont trust hubbys driving

Under normal conditions {without this fractured pelvis} I never use the scooter except for a shopping mall and it goes on holiday with us and if we stop somewhere that is largish and possibly hilly...out comes the scooter.
It was my daughter that conviced me to swallow my pride and get one and use it when necessary....She kept saying you are not giving in,.,,,,,,,think of it as a coping mechanism,,,,,lets you do things you couldnt normally do....and in comfort.
It also gives dad some freedom.....if you are in a large town he wont walk very far because he knows you cant {he never says anything} but when you have the scooter you can go up and down, in and out little streets etc She's right......role reversal
I dont need it any other time but please swallow your pride and get a scooter or wheelchair .,.....whichever suits you......Use anything that helps you do things you normally couldnt do with this awful disease...I remember Christmas,......I was still getting used to it and feeling self conscious and then I looked at the mobs of people in The Metro Center...pushing, shoving, getting bad tempered, hot and tired.....and there was me just going round on my scooter....no pain at all
Sorry sermon finished
Love
Hileena

rugbygirl

I have just popped on to see how everyone is and I noticed this thread. I have been trying to put on a brave face and get on with my life without using all the aids - I have got things at home which I use occasionally but I dont like to admit defeat. I think I am going to have to soon because I am starting to struggle to walk any sort of distance and I dont like to be a burden on others.

Might have to take the bull by the horns so to speak and make that step to get about in the town. It makes sense really no matter how you feel the first time it has got to be better than being in pain for hours (or sometimes days in my case) after a simple shopping trip.

rugbygirl

I have just popped on to see how everyone is and I noticed this thread. I have been trying to put on a brave face and get on with my life without using all the aids - I have got things at home which I use occasionally but I dont like to admit defeat. I think I am going to have to soon because I am starting to struggle to walk any sort of distance and I dont like to be a burden on others.

Might have to take the bull by the horns so to speak and make that step to get about in the town. It makes sense really no matter how you feel the first time it has got to be better than being in pain for hours (or sometimes days in my case) after a simple shopping trip.

stickywicket

Oh Ankspond, there is so much in what you say.

You say you're 'not mentally ready for a wheelchair/scooter yet'. I'm not sure anyone ever is. I know I wasn't. Some days I'm still not. Mr SW & I still, frequently, have the 'Shall we take the wheelchair' argument.

You're 'able-bodied'? You go on to say you 'look OK'. Two completely different things, Ankyspond. When I looked able-bodied I tried to be able-bodied. It was very painful and didn't work very well. One of hardest things I ever learnt to say was "I can't do that today." One of the most frustrating things about this disease is the constant need to 'be sensible'. It's an ongoing battle. 50 years on I've not quite cracked it yet. But we must keep trying.

Because you 'put on a front, nobody really understands'. Ankyspond, they don't really understand even when we don't put on a front. When we do they've no chance. For your own wellbeing try to find at least one person with whom you don't need to put up a front. Yes, the forum comes into its own there but it's much better to have someone in 'real life' with whom you can be just as you really are.

As for the 'win or lose' thing, maybe we can't win the war but we can win a lot of battles. Relinquish the unimportant ones and save your energy for whatever stuff really matters to you.

Blimey, that cabernet was good stuff! Hope the malibu was too.

hileena111

Hi Jaki
You are probably more a burden on others trying and not succeeding very well to walk very far... than you would be if you hired a scooter in a mall ...even if it was only once or twice to try it. {sorry dont mean to be nasty but I felt like that}
Sticky is happier in the weheelchair...I'm happier on the scooter but Mr H and I go through the same thing each time we stop the car {because it lives there } shall we get it out or not....do I really need it?
Good luck anyone who is fighting with this decision.
Just dont forget you can hire either....scooters or wheelchairs in shopping centers to try them.
Love
Hileena

rugbygirl

Thanks Hileena

that really makes sense. Thanks for saying what you did - straight and to the point.

I dont have the funds to buy a scooter at the moment but I think I will look into hiring one in the town. I also noticed that they have them in our local Asda as well as wheelchairs so I might borrow one of those when I go on my weekly shopping trip on Monday.

I will report back and let you know how many people I ran over and how many people jumped up the shelves to keep out of my way. LOL

hileena111

Hi Jacki
Google some some scooters first....I think its our asda that have massive big ones {not the sort that I would like to try out for the first time.}....Think they are meant for people going round doing a months worth of shopping and piling it all on :eek: Our shopping mall have 2 sizes...they talk about red ones and blue ones....the blue ones you can turn on a penny, red ones are bigger and not as easily moved round aisles but not as big as our asda ones. My scooter is 2nd hand.....but once again the shopping mall I go to....{retail therapy rather than mundane groceries}BHS , M & S Debenhams etc.....charge £3 for the year subscription and £2 for a full day when you want to hire it.
Have you ever seen SHOPMOBILITY signs in a town ...if you follow them they usually let you hire a scooter to take out and about the town...some charge some dont....if they do its only £1 or £2
By the way do you know you get certain points for knocking certain people down Customer...not as many...but if you can catch a shop assistant a few more and if you can manage to get a supervisor .....well!!!!!!

frogmorton

Hi Anky

I am so sorry you felt so rough yesterday and hope that you did in the end get a good night sleep.

or was it unconscouisness??? If it was l hope you have not added hangover to the list

Hugs for you from me and hopes that today is better for you.

Love

toni xx

suzygirl

Hi Ank, it has taken me 5 years to get to the point I have just accepted a 3 wheeled walker. Simply because it has come down to not going out at all, or swallowing my pride. I have to say the first time, I had to go in the whelchair, I had a tantrum worthy of any 2 year old. :oops: It has been a learning curve for me and my hubby. I even now, have to fully explain how I am feeling or he thinks I am ok. We did have some laughs along the way.

I have 2 lads and I never felt it was fair that I got all grumpy and crotechty with them due to my pain and furstration so I try to be sensible and pace myself and use aids etc. As to being mentally ready, I dont think you ever are. It has taken years of, ' oh, I dont need that' then getting to the shops to find just the walk from the carpark to the shop had me nearly collapsing and exhausting. Now we always have them in the boot.

Feel free to PM me if you want to chat more. I read a really good book on how hard it is to use mobility aids, I will try and dig it out and PM you details. It really helped me get my head around it all.

Hope today is a better day for you. x

Ankyspond

I am pleased to say I am feeling a lot better today thank you to all who commented, I have had a wonderful day with my husband, sister and two beautiful nephews who always put a smile on my face. Thank you all again and I am sorry to moan to you all, I know its not fair if I am not willing to use a wheelchair or scooter but I will work on the advise you have all given.

SW – Thanks for your advice and I know you are right I just feel like a fraud, its bad enough when people see me parking in the disabled bay and give me ‘that look’ when they see me able bodied without me having a scooter. I know the time is coming that I am going to have to do it and use a scooter and your help and support will make that all the more easier I just want to be normal for a bit longer. At 43 most days I feel like a 90 year old (actually I have a 93 year old granny who is very mobile and plays football with my kids so a bit of an insult to her really). I put on the ‘front’ cos don’t want others to feel as down as I do most days, don’t’ want to bring anyone down with me and don’t want them to pity me. I know they will never really understand anyway as they don’t know what we go through all the time. I can talk to my hubby but to be honest he will honestly say he doesn’t know what to say so I just deal with it on my own it seems easier that way. I love what you put “maybe we can't win the war but we can win a lot of battles. Relinquish the unimportant ones and save your energy for whatever stuff really matters to you” I really have thought about that a lot over the last day and will take your very valued advice on board. Thanks so much. Xx (Malibu worked a dream)

Toni – I did get a good nights sleep, you were very right I was rocked off with the soothing effects of the Malibu but did have a small headache, he he. Xx

Suzygirl - Very true about pride me thinks and a lesson I am going to have to learn I think. My kids are all older so do understand and help where they can so at least they are not really young and I have to struggle with that. At the risk of sounding stupid (even though I teach ICT) what is PM? I guess it’s a chat or email but having a dumb moment, the book details would be great thanks. xx

hileena111

Hi Anky,
Before I forget........pm = private message. If you want to talk to any of us go on to our profile and you'll see an icon saying pm.....click on that and type....like an e.mail.....The rest of the forum cant read it ...just the person you are sending it to.
I'm glad you are feeling a bit better today.....we all hve days like this dont we
Its OK about the wheelchair and scooter.....when the time comes you'll probably remember all the pros and cons that you were given....you will have stored all the info away if if you're not ready to us it now.
Love
Hileena

julie47

Morning ankyspond

Hope you are feeling much better this morning. I have just been catching up and seen your post. I was sorry to read that you came home from your shopping trip in such pain. I started using a scooter and a wheelchair at the age of 31 for long walks, shopping centres and holidays. I did find it hard to give in to arthur and thought at 31 I would look silly ,but it made things so much easier. I am now 48 and have come to love my scooter,and the chair...... well when oh is pusshing I do feel as though I am on a waltzer, he has one speed only.....FAST

Take care
Juliepf x

suzygirl

Hi, just checking to see how you are doing today. I am so glad to hear that you are a little better. I haven't had chance to dig out the book yet, but I will!!