How Do You Cope??

summerof0763

sunnyone wrote: »

May I ask a question that I wanted to ask someone in real life but I didnt want to upset them and from your post you might have been in a similar position?

or if any other aspie can give me a clue?

Being on cyber space isnt putting you on the spot as it would be face to face and you have the god given right to just ignore it if thats what you want which again is more difficult face to face.

An friend (not as close now since we left college but we are still in contact but its difficult due to our diffrent disabilities) was diagnosed with the same condition as you age 25 and up until the diagnosis she was a high acheiver with the world at her feet but as soon as she was diagnosed her life went into free fall and now shes a recluse who has so many problems that have totally changed her life.

I have though of many reasons why this happend but I couldnt ask her what changed when she was diagnosed and I think that if I even had an incling it may help me be a better friend to her.

The biggest reason that has come to my mind is that she had spent so long trying to "be normal" and not understanding what was wrong with her when she was diagnosed it was such a huge relief that she could be who she really is and that was the big change but that only my musings and it could be (probably it will be far out ) far from the reason and even knowing other peoples reasons it dosnt mean that hers will be the same.

Please ignore this post if for any reason it may upset you or make you feel uncomfortable, I know Im not alone in wanting to help my friend and I know that other friends also want to help her but ATM we cant for various reasons and any understanding certainly cant hurt us in that.

Im exhusted so this post may be a bit mixed up and thanks to anyone who has read it.

i think suffering daily pain turns you into more of a recluse "i know i have"
my mum cannot even understand that sometimes the pain is so severe it exhausts me just to be awake.
but then again my mum does not accept am not the person i was before all this happened.
i lost a lot of friends,and find "cyber world" on the disability board anyway that there is always some one you can relate to,who understands your pain,frustrations etc
think best you can do is let your friend know you are still there and happy to meet/chat whenever suits her,and that she is not alone.
now am rambling!!!

nannytone_2

i dont necessarily think that it is disability causing the way people feel, i think it has more to do with pain. i am disabled but i have no pain (im registered blind)
i know myself that if i have a toothache (the worst pain for me apart from childbirth lol) i find myself incapable of concentrating on anything at all. so to be in constant pain is unimagineable.

you have to create a new 'normal' for yourself, dont compare yourself to how you used to be and dont beat yourself up for being ill!
im not religious myself, but it must be a great comfort to have faith.

a church going friend of mine has 3 daughters. the eldest has a club foot, the middle one had downs syndrome very severly ( she was unable to walk or talkand sadly died last year) the youngest girl had 2 club feet and is profoundly deaf. i couldnt imagine how she coped. all she said was 'if god didnt think i could cope, he wouldnt have given the girls to me, he'd have given them to someone else'

Prinzessilein

Sunnyone:

Aspieness is part of my condition, like many people on the Autistic Spectrum I have a number of related Autistic conditions. For me the main 3 are Aspieness, Dyspraxia and Dyslexia.

Physically the Dyspraxia is the biggest problem. This is the reason I need ground-floor accommodation. My muscles are becoming increasingly less cooperative. I am finding even a few stairs impossible to manoeuvre. One of my favourite pass-times has always been cooking - and now I find I can't always handle spoons....knives are a down-right deadly weapon on a bad day! ....For me, this part of my condition is worsening as the years go by. Could it be that your friend is finding her physical symptoms are becoming increasingly limiting?

I don't know how long ago your friend was diagnosed, but it can come as a shock - even if you already know what the outcome will be! I knew I had ASD. But getting the confirmation was a huge thing.

In many ways, I wanted the diagnosis. I needed to know that there was a reason for my being the way I am. Having the specialist confirm things was am positive thing. However, for a few weeks afterwards I was a wreck! Even good news can throw me. Your friend may need time to adjust and accept that this is how she is....and how she will always be.

I have always found social interaction difficult - verging on the impossible. When I worked I would force myself to interact with others....and then shut myself into my own world , because the effort was too much. Being the Head of Department gave me the freedom to arrange things so that I could be doing paperwork/admin on my shut-off days. Unfortunately, the 'recovery' periods became longer, and I become more and more of an 'elective mute'. This has been with me since childhood, but became more severe the more stressed I became. ...Again your friend may have found that some of her conditions were worsened by her demanding job, and she was no longer able to cope.

A few of my symptoms are potentially embarrassing....I have tics. A physical compulsion to rock. Even when I am standing up, I'll rock gently (or less gently!)...and a physical tendency to shout a repeated (often offensive!) word or phrase. ...For a while I felt uncomfortable in public. Thankfully I had someone (my mum at first) to firstly reassure me that whilst some people might stare, most people ignore me ; and secondly when I'm accompanied I feel 'safe' and less likely to have these spontaneous outbursts....Obviously i don't know your friend, but could she feel (wrongly!) ashamed about part of her ASD?

For me, one of the biggest things has been starting to accept that I am 'normal'...it's just that 'normal-for-me' may not be the same as 'normal-for-the-rest-of-the-world'. I am still an amazing person with a talent for maths that few people have (numbers make so much more sense to me than people do!), a wicked sense of humour and I bake the best chocolate cake!....I also happen to have ASD and there is no cure. ...it's all part of the wonderful, complex person I am....You need to be there for your friend as she struggles to accept he condition as a part of who she is.

What you can do at the moment is support your friend. Let her know that you are still there for her...and will be whatever happens. (I crave security!) Read about ASD, but remember that it affects people differently. The symptoms I have may not affect your friend. ...the best person to explain how it affects her is your friend herself. And she is lucky to have friends like you willing to stay close and help her!

Frenchgirl

:rotfl:It is good to know that we can "talk" on here. I used to be a very socialable person but now I do find it hard to be in a lot of company (well more than three people(laughing man should be here! Not very technic!!!!!!!!!!!!!)

I find things I used to be able to do difficult now. My spelling is terrible but I still love Simon Cowell (my friends tell me my sense of humour will never leave me).

I lost a beautiful daughter a few years ago, she was 11. We were told she wouldnt make it to her first birthday so I feel so blessed to have had her in my life. On my bad days I remember what I used to say to .......... look at the things you can do darling. The only thing is there is no one to give me a hug now and it really hurts. I left my husband and moved into a refuge so now I have no photos or any momentos? of her. I am grateful I have my faith another daughter and wonderful friends. I live a long way from my family. Thank you so much for reading this far. Im not sure what I am trying to say but keep talking and taking each day as it comes. x

Piffyonarockbun

TOBRUK wrote: »

Hi Frenchgirl, I know how you feel, I too was in a job I loved and had good prospects, but in the end I had to leave because of ill health. My life chaged completely, I used to run around, these days walking is a strain. I had a very busy social life - now it is non existant, I'm lucky if I leave the house to go to the village once a week!

I found adjusting extremely hard, I couldn't accept it at first, it was as though my life had just stopped as if someone had hit the pause button, but everyone else's life was carrying on! I don't know if that makes sense! I think it must have taken a couple of years before accepting that I would never be the same again. I do have days even after 10 years that I wonder why I can't do those things I used to and whether things will change

I too find like jennihen that I'm too tired to interact a lot of the time, and if I get a visit from family or friends it really exhausts me. I can't cope with with more than a couple of people at a time just like you.

I don't look forward and I try not to dwell on what could have been. I have to take each day as it comes and hope for a good day every now and then. I can't make any plans for tomorrow as I don't know how I'll be from one day to the next. It is difficult, if my sisters say we'll go to so and so on so and so date, I tell them we'll see! They are very good, my family knows how difficult it is for me and they understand.

I don't have many friends - when you become ill you sort of lose contact, and also you find out who your true friends are. It is difficult explaining to some people how things are - they just don't get it!

Gosh, I didn't mean to ramble on, don't know if this is making much sense sorry!

TOBRUK, this could have been me typing. Exactly my circumstances etc.especially the finding out who your real friends are!

sunnyone

Princessilien thankyou so much for for giving me some incite and supportive helpful ideas for my friend, she was the first person diagnosed with autism in real life and its hard to know what to do for the best.

I spoke to my friend yesterday (before reading your post) and we did talk about a few things, I was with the baby and that opened up more of a discussion where she said much more about what she was feeling and why, shes coming to see me next week after my op, the op means that I wont be out for quite a while, hand op for a wheelchair user that also needs that hand to transfer into cars so Im stuck at home so if we want to meet she has to come to mine and thats somewhere she has always gone to and spent a lot of time in. I will use this oppertunity to have as much as a heart to heart as she wants and use your advice, thankyou again.

crutches

I struggle with the prevailing attitude that people on benefits especially disability ones are scroungers.I had a high salary and would be mad to swap it for incapacity benefit but still get remarks about sponging off the state etc.Thanks also to Nannytone fore the understanding about pain.I struggle with the DSS thinking if they can adapt a workplace physically everything will be fine.
Thank goodness for these boards.