****Wonderful Warm Weekend Chat - get the washing out****

scaredy_cat

night Lou, sleep well

clairewop

night all i'm off to bed too

bookworm8657

katsu wrote: »

Ultimately day to day is all the certainty we have. By focussing on enjoying what we can, not missing/wanting what we can't, my Mum and I have had some great times.

Mmm we certainly have had some great times, however I am certainly not the "accepting" type which this post may imply......

Maybe even Katsu doesn't really understand the depth of feeling inside me which at times is a real maelstrom.....am I unique in this or would many people with disabilities agree with me? Somehow I suspect that it would be the latter. Yes I do enjoy things when I can do them, although that has been an extremely limited agenda for such a long time.....however, I most certainly DO miss the things I can no longer do and I DO want the things I no longer have - those feelings do not go away and I for one am not able to come to terms with the limitations on me now. How can someone lose their independence, self respect and dignity and not want them back - I know I do and TBH there is a very deep seated anger and grief in me that I have to depend on others to do things....especially the personal stuff. I know I have lovely carers Mon-Fri with whom I can have a laugh and a joke but even so, I still can't fully accept the situation. It has also changed the dynamics of my marriage and somehow I think it will remain affected. It's pretty much impossible to be spontaneous when you have to check ahead that places are accessible etc etc. It becomes terribly difficult to keep holding your head up when you seem to spend the vast amount of your time saying "please could you/thank you/I'm sorry/I'm grateful/I'm really sorry " - good manners? Yes of course, and I am well aware how bad this may appear, but it's not the principle of expressing thanks and gratitude, it's the excessive amounts of it - it drives home the lack of independence. I want to scream sometimes that it's my damn legs that are useless, the brain/gob are working fine thanks very much! lol

Sorry for the rant, but I just felt the need to say actually I'm not the quiescent type, yes it makes sense to focus on what is feasible, but it doesn't stop you wanting a normal life. This has been a bad week one way and another......shedloads of my own stresses and then way too much stress being heaped on me by others and making me feel so bad about myself! Scared as I am about going into hospital, it can't come soon enough now - I'd get down on my knees and pray that it will give me back some mobility and thus some independence, dignity and self respect again....but if I get down I'd need a ruddy crane to get me back up again!!!

Katsu, this rant takes nothing away from the good times we've had, I'm the first to say to people that whereas some around me "disable" me by emphasising what I can't do, you have always done your best to "enable" me with your "let's have a go" attitude - please don't ever lose that! I know the good times have been thin on the ground lately, but I plan to remedy that when I am eventually "let out" :j:rotfl:(I will be more than ready for a marathon session at Cribbs Causeway ).

Sorry folks......

Ames

Bookworm, I know exactly how you feel. Little things like signing up for a group organised by social services and getting there to find I can't get inside the venue. Needing people with me for most things, with all the planning that goes into it. And all the fighting to get help to do thiings that most people do without thinking.

Lou, I'm trying not to think about when 24 finishes.

whatatwit

Bookworm...please do not apologise for expressing feelings and thoughts that the majority of us cannot even begin to comprehend.
I, like many do not appreciate what I have and as you say, it is often very difficult to see past the disability.

When Gemzie (I think) posted about the spoons, it helped me to understand a little more and hopefully transfer some of that understanding into everyday life.

Love and hugs to all those in pain.

bookworm8657

Ames wrote: »

Bookworm, I know exactly how you feel. Little things like signing up for a group organised by social services and getting there to find I can't get inside the venue. Needing people with me for most things, with all the planning that goes into it. And all the fighting to get help to do thiings that most people do without thinking.

Lou, I'm trying not to think about when 24 finishes.

Kindred spirit Ames! I do indeed know what you mean about accessing buildings, a couple of years ago I was checking out a small library, rang them about 3 times at odd times to check, double check etc and yes, each time I was assured they were wheelchair accessible.....until I got there and was confronted by a step to the front door! When I got them to come out and I questioned it, they said, yes but it's all level inside....DUH! I also understand how claustrophobic it can be to need someone around you a lot of the time.....I long to be able to just go out, go somewhere and enjoy myself - all by myself! Lastly, yes, oh yes this one I am soooo familiar with unfortunately - because the very last thing we should have to do is fight for our rights, but the reality is that fighting is exactly what we have to do, info is out there but seldom freely given unless asked for......how is one supposed to ask about info one is unaware of????? No wonder I loved it when I was working as a trainer and delivering presentations on disability/equality/communications/legislation etc. It was an opportunity to get a very serious message across to people, often people working in the health/social sectors!

bookworm8657

whatatwit wrote: »

Bookworm...please do not apologise for expressing feelings and thoughts that the majority of us cannot even begin to comprehend.
I, like many do not appreciate what I have and as you say, it is often very difficult to see past the disability.

When Gemzie (I think) posted about the spoons, it helped me to understand a little more and hopefully transfer some of that understanding into everyday life.

Love and hugs to all those in pain.

Thank you for your kind words Whatatwit, I hope it didn't appear that I am beating the world around the head lol. None of us can truly know how another person feels unless we "walk in their shoes" - that applies to each and every one of us, but you are quite right when you say sometimes it's hard to see past a disability. I have always tried to say to people that my conditions are a part of me, but they are not the whole of me, I am still me, the person they have always known, I have the same thoughts, feelings, emotions and needs as anyone else. I have had to enlighten friends and acquaintances in the past who thought that because I have a disability:
i. I would not want to go out to work and would prefer to stay at home
ii. That I was brave to go out in public since my conditions had resulted in a huuuuuuuuuge weight problem.
iii. I would not want to go to a nightclub as I wouldn't be able to dance (I was on the dancefloor in my wheelchair at Katsu's wedding and have photos to prove it!)
iv. I would not expect to have a love life..........

I did not read any posts about spoons by Gemzie, but when I have time I will have to have a search for it - inbetween my breakdancing session and swinging from the chandelier in my french maid's outfit! :rotfl::rotfl::rotfl: