how to cope

how do you all cope and accept this stupid illness. yesterday was reasonable and today i feel like death warmed up.support here in switzerland is lousy and i am turning to you. x

[janiceray]

Tell us a little more to how you feel, remember all who have Lupus is on your side and have probably been there and have the tee shirt.

[Hidden in reply to janiceray]

Hi

sorry to just blur it out,was simply peed off with it this morning. Thanks for the reply.

I feel I am not in control of my life anymore. After a very active life (6 kids, work,business etc) was looking forward to retire gracefully in my homecountry and enjoy the freedom and beauty of the mountains by going for hikes. Generally do what I could not all those years bringing up a family.

How the heck do you learn to pace yourself?

And after all my life only needing headach tablets I now have a drawer full of stuff that makes me feel like sh1t

Sorry to moan,there are probably many of you worse off.

Rant over!

xx

[Maya23]

Hi x you are right it's a very stupid illness, frustrating and down right maddening too! I go through periods of time when I can accept it and just roll with it, but plenty of times I can't accept it and I feel so frustrated and hopeless. Living with pain is very stressful, it puts a lot of strain on your organs too -your heart has to work harder (according to a BBC program I watched about pain). The main thing I've learned is how to be KIND to myself -harder than it sounds!! I've learned that as I learn more about how to be kind to myself, I can communicate my needs better and more openly with family and friends, and I get more support and kindness in return. Some people however don't know how to be kind to themselves or others, so I stay clear of them!

I hope you find the kindness and support you need in your life.. and in the mean time we are here for you! xxx

[Hidden in reply to Maya23]

Thanks for the reply.

I am reading all your comments and try to digest them.

Many thanks for your kindness, appreciated.

xx

[Thaddeus]

Hello Ursi

Firstly you must accept that this thing is bigger than you and you cannot fight it head on. It's long game, but you can come through it.

Bit by bit lupus will take away the things you define yourself by, and bit by bit you will regain your life albeit with some modifications.

You may benefit from joining one of support groups on Facebook.

[jennyhe]

Hi you have come to the right place for help and support, we all deal with lupus and other ilness in a differant way, I like you loved walking I would be up in the summer at 5-45 walking my dogs and loved it so much, now I ahve spinal stenosis as well as Lupus and I cant walk without pain I ahve got a rollator to use outdoors it has a seat on it so when my legs get to painful I can stop and sit down, it took me a long time to accept that I needed it but now I ahve overcome the stigma I do get a bit of my life back, it`s small hurdles and you need to face them one at a time have you got a good friend who could sit down with you and make a plan? and make the pan like a walk one step at a time, yes you will get knock backs but keep going I know you will gwet there, x

[janiceray]

I like all those that have replied to you and there is no more for me to add,

Only to say we are here fore you,take one day at the time.

Love & Sunshine

Janx

[Hidden in reply to janiceray]

Many thanks to all you lovely people out there. You are a great help.

I have found that spoon theorie and am busily practising it. It's amazing and it gives me some focus.

Love to you all

Ursi x