NRAS
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Have realised today just how much this disease has destroyed my confidence over the year

So I started my volunteer job yesterday, just a couple of hours. It made me realise how much I've lost confidence over the last year. In my day job I've been virtually isolated and made to feel other by my boss. Although my voluntary post have been lovely I've spent today mulling over the mistakes I made.

I've also realised I've begun to feel on the outside of everything as though I'm not part of society or a normal person. Has anyone else felt like this with this illness? As though you are now on the outside looking in?

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Absolutely, in my case I was unable to recover in time to save either business. Now I am afraid to start anything for fear of flare taking me out again. At my age , 57, it is not as simple. This from a woman who has moved five times for school and work. The last move was from east to the west coast.

I am also on my third and final marriage. My husband and I celebrate 15 years in January but this is the third time. I have been wiped out financially three times and still recovered but now I am just tired. Working 12-14 hours a day does not leave time for friendships. I now live in total isolation. My only contact is now with medical and dental . My 'friends' simply do not call.

The surprise is how little that bothers me. The more time I spend alone the happier I am. My illness or wellness consumes me.

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Bless you darling i so understand how you feel.xxxx

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Yes I agree. I haven’t worked for a while as I am very lucky and I haven’t needed to, I but I was always very active and my life revolved around sporty things. We went on walking holidays, I played golf and tennis and I was an incredibly strong energetic person. My friends still do all those things and I can’t, which has changed my life completely. My confidence has taken a knock and I’ve had to try and find some sort of other life with different people. It’s such a shame to put it mildly!

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Yes, yes!!

Feeling utterly locked out of everything ‘normal’ after so many years of a busy, productive, challenging life!

Like Damaged, too, feeling isolated as I am on ESA while friends are either still working or have been retired for four years on private pensions.

The new normal often feels so not worth it but only in comparison to how life was; I still appreciate family, enjoy seeing beauty around me, and have time to notice it without time pressures.

I can’t do voluntary work anymore, or study for more than 20 minutes, then I forget much of it anyway. All a far cry from lone parenting of four sons, combined with full time study for my degree, and doing voluntary work and p/t job.

Accepting it goes against all I am but no choice at present.

Hope you can make adjustments and still enjoy much.

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Oh boy do i feel like you do darling. I also feel so lonely when my family are doing their things like my hubby going down the allotment,or when he is cooking and the children are here and they are in the kitchen with him do i feel so lonely. I am getting where i can't be bothered whether i go out or not. Mind you by the evening i am so exhausted that i go to bed and watch the tv.xxxxx

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Maybe it is partly the medications causing you to feel fatigued and low; certainly a big contributor for me as I feel much better emotionally without them.

But we are not alone.

My faith in God is my biggest support. And I will not give up, too stubborn! xx

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charisma I completely agree. If the Lord were not the leader in my life I don’t think I would have kept on going. He helped me realize there is another life with RD and I have found different enjoyments in life. I still get down and go into self pity then I pray and my head and heart seems to get back on the good road.

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Best weapon we have! :-)

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Thanks for mentioning your faith on here.

I have had the worst year of my life, Diagnosed with RD, Dad died Brother in law diagnosed with terminal lung cancer....months only left Husbands COPD really bad and has chest infections and on very high doses of steroids more often than not Other extended family traumers to name but a few things, however our pregnant daughter is 5 days over due so looking forward to a the blessings of a granddaughter that we never expected was possible. Need all prayer we can get for safe delivery. Without my life long faith I dont know where I would be. Most of the issues I read about on here Im experiencing . This disease is awful. My mum used to say if you cant change something then change your attitude towards it. So thats what I try and do. Helzbels you are on the inside of this community and when I first joined it would read your regular contributions and really appreciate them. So thanks. All of you on here are amazing at whatever stage in life you are at. Thank you all for what you share

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