How Do You Cope??

Frenchgirl

Hi I have been awarded DLA mob and care. I used to work full time a job I loved. Now I am waiting to lose my job due to health reasons. I keep collapsing and can hardly walk unaided. I am under a heart specialist and a neuro but they cant decide what is wrong yet (been off work a year). I am a very positive person and I am a christian which is a great comfort to me. However I find I am getting very frustrated with myself! I used to be a people person but find I get very very tired and cant seem to cope with more than one or two people. Any suggestions would be great. I love this website and spend a long time on the crafty sites I dont have the energy to do a lot I find reading difficult to do for long periods. Sorry to go on. Hope to hear from you lovely people soon x

sheeps68

Hugs! Its very tough at times.
My church offers a lot of support and care but I do have to admit when I'm struggling.
I personally try to take a matter of fact approach and am really quite blunt about health issues. That works for me!
As for work I found the union helped me with a transfer of role and working reduced hours has meant I kept my job.

jennihen

Bonjour Frenchgirl!
I waited a long time for a diagnosis for my condition. When I first got it I was relieved to have a real illness thinking that a cure was just around the corner and I would get my life back.
Sadly that wasn't the case. I then had to deal with the side effects of medication and the terror of knowing i could die young and not see my children grow up. I, too, lost my job,my confidence and most of the joy in my life. i wasted a lot of time fighting my illness the wrong way. I was angry and miserable.
But - and its a big but! - I have learnt to live with this and change elements of my life accordingly.
I still have Lupus and 'complications' but I'm back at work (and enjoying it in the most part). My condition is well managed with few relapses and I have a support network in place when I need it.
I've also learnt to accept that I am quite anti-social nowadays. I'm too tired and in pain to interact all the time so I don't! My friends and family have come to accept over the years that this is me and how I live my life.
Also coming on here and expressing the way you feel can be very cathartic!
My best advice is keep looking ahead, life can be bleak in this moment but it doesn't stay that way!
Best of luck
Jenni

TOBRUK

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!

Oscar_The_Grouch

Hi Frenchgirl

I'm in a similar position to you, in that I'm under the care of a neuro. I have the Pain Clinic rather than a heart specialist, but I have also been off work for almost a year waiting for a diagnosis. My employers have been very understanding, but it doesn't take much for an employer to go from "very understanding" to "we're sorry to lose you".

You have your church; I have my wife. I'm a selfish old goat, so I'm not going to loan Mrs Grouch out to anyone even though she's probably worth 3 churches - She's the reason I get out of bed in the morning!!

But that's really the crux of the matter - you have to think about what you DO have, not what you DID have. I think about the fact that I get to spend all my time with my wonderful wife, not the fact that I can't do a days work. I concentrate on the fact that I don't have to walk into town (mobility scooter), not the fact that I can't pick the kids up from school because I'm not allowed to drive.

Keeping a positive spin on everything isn't easy. Half of what I'm going through scares me stupid and the other half is shrouded in the medical fog caused by the various pills and potions I take. Both take their toll on ones attitude, but having as many up days as possible becomes a challenge.

If walking is a problem, get in touch with your local ShopMobility centre and borrow a scooter off them for the day. Mrs Grouch and I did that until we bought a scooter, but using their scooters gave me a chance to road test different models. The best thing is that you aren't usually restricted to the town centre and can go off exploring for a while, so you don't have to spend any money.

Keep your chin up!!

TOBRUK

Nicely put Oscar!:)

SingleSue

I can relate but not as a disabled person but as a carer to 3 disabled people!

When me and my hubby split it meant that I had to give up my wonderful evening job (daytime hours are not possible due to appointments and evening childcare not available), a job I adored and gave me my independence and a large part of my social life.

My social life came to a shuddering halt, my confidence nose dived and I felt completely worthless (it didn't help I was also mid break down). I went from someone who coped well in social situations, to one who, on the odd occasions I get to go out, would much rather stay in the house with a quilt over her head.

I still haven't made the adjustment, I still yearn to be in the workplace, to get my old life back but now my health is playing silly beggers too and I fear that by the time I am able to with regards to the care needs of my children, that physically, I may not be able to....and I would absolutely hate that as it is one of the things that keeps me going day to day.

Frenchgirl

Bless you all for your wonderful replys. I am not too good at names at the moment so forgive me if I dont use them. Thank you for all your kind comments. I feel uplifted just reading everything that you said. Thank you so much for taking the time and trouble to reply. Im tired now but will post again soon. x

Zoelikesjam

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!

Me too, I feel i have no life anymore when i am low, however i thankfully pick myself up. It is so difficult to think positive! I have been crutches bound since i was 11 so you'd think i'd be used to it! But after having many good years, training and having three beautiful children its made things even more difficult for me to accept im DISABLED! I cant get out the house alone. My poor children suffer cus of me and are stuck in the house constantly. I cant take them to the park like a normal parent, nor can i take them swimming/dancing etc.
It sure is a learning curve, and one i am struggling with but sure to get there in the end! At the moment i need to deal with the positive's andnot pushing myself that far i am bed bound for days after. We shall get there in the end! Hugs to EVERYONE!!! xxx

Prinzessilein

I was doing so well at work. I was Head of Department. Everything was going well.....and then the little niggling problems exploded out of all proportion and I found myself disabled! There are times even now when I sit back and think 'how did that happen?!'

I have a strong faith, and the world's best mum - but I still get bad days....but I get the good days too. It's important to focus on the good days.

I'm now on the list for a new home. The council have accepted that I need ground floor accommodation, with a walk-in shower. Maybe now I need to accept it too! (My brain keeps thinking that I'll find a nice place, redecorate it myself, have a lovely garden that I'll tend all by myself.....my body just thinks 'please, just find a simple place with no stairs and I'll be soooooo grateful!')

On bad days, I feel so useless. I should be working. Doing something useful. Paying my own way. Supporting my wonderful OAP mum. ...I focus on my disabilities and forget the wonderful person I actually am!

On good days I concentrate on wehat I can do...I am already making stuff for Christmas presents (I can embroider on good days....but slowly!)...I e-mail friends (on bad days I can't even type properly) to make sure we stay in touch...I go for short walks and remind myself that I am really blessed to live so close to the sea - it's beautiful!....I may even do a little simple cooking (on bad days I need help to reheat stuff in the microwave).....and some good days I push myself too far when I try and do all of the above and more!

Above all, on good days, I store up enough happy thoughts to get me through the worst of the bad days.

sunnyone

Prinzessilein wrote: »

I was doing so well at work. I was Head of Department. Everything was going well.....and then the little niggling problems exploded out of all proportion and I found myself disabled! There are times even now when I sit back and think 'how did that happen?!'

I have a strong faith, and the world's best mum - but I still get bad days....but I get the good days too. It's important to focus on the good days.

I'm now on the list for a new home. The council have accepted that I need ground floor accommodation, with a walk-in shower. Maybe now I need to accept it too! (My brain keeps thinking that I'll find a nice place, redecorate it myself, have a lovely garden that I'll tend all by myself.....my body just thinks 'please, just find a simple place with no stairs and I'll be soooooo grateful!')

On bad days, I feel so useless. I should be working. Doing something useful. Paying my own way. Supporting my wonderful OAP mum. ...I focus on my disabilities and forget the wonderful person I actually am!

On good days I concentrate on wehat I can do...I am already making stuff for Christmas presents (I can embroider on good days....but slowly!)...I e-mail friends (on bad days I can't even type properly) to make sure we stay in touch...I go for short walks and remind myself that I am really blessed to live so close to the sea - it's beautiful!....I may even do a little simple cooking (on bad days I need help to reheat stuff in the microwave).....and some good days I push myself too far when I try and do all of the above and more!

Above all, on good days, I store up enough happy thoughts to get me through the worst of the bad days.

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.