how many of you..

[linz]

do not work?

for those who are stay at home mums/or retired, if that wasn't the case do you think you still could work?

i feel like such a failure that i let my IC dominate my life so much sometimes. i come on places like this and read of people who struggle to hold down jobs but still do it, and i'm so proud and happy for them but i feel so weak and pathetic that at 20 years of age i cannot do this. i just can't see how i could possibly manage it when my IC is so unpredictable, i'd never manage even a few days at work per week if that!

it'd be nice to hear of other people in the same position

[ICLori]

Hi, Linz, I have been unable to work for 4 years now due to IC, and I struggle also with feelings of worthlessness and depression because of it. And fear of the future, wondering if I will someday end up as a bag lady.

You are not pathetic at all. Something like half of all IC'ers are unable to work, due to IC. I am guessing that that half are the half that are like you and I, symptomatic nearly all the time. In fact in the U.S. there is social security disability for IC (although it is a real battle to be awarded the disability, I understand). It's recognized that many of us are completely unable to work because of the pain, that we are fully disabled.

I was wondering, what treatments you have tried, and if any of them have seemed to help at all?

Blessings, Lori

[linz]

I'm glad to know I'm not alone, can I ask how old you are? A lot of the people I've spoken to with IC are around about the same age as me and newly diagnosed and I feel so crappy that they're out there at college and enjoying life, but then I remember back when I was 13/14 I was newly diagnosed too, it and took a few years before I had to give up school, and a small job.

I'm on a disability allowance because of my IC, and I get all my meds free, and it makes me so mad to hear that some americans can't work, can't afford meds and don't get afford any help, but I'm glad to know some people are helped.

I have tried installations and neck stretching, neither did anything for me except give me a whole lotta pain for a while! I've only worked with one Doctor who'd treated IC before, (I'm the only person in my town registered with it so doctors generally know nothing) and he did give me great hope, and also recommends just trying to find the right meds to work. Sadly he was a semi-retired doctor and only comes in when other doctors are on holiday etc, but he was much more knowledgable than any urologist I've seen (one of whom claimed to be very experienced in dealing with the illness..yet refused to acknowlegde that foods/chemicals can irratate IC!!) I feel so sorry for any patients who are stuck with him and don't realise how much they might be damaging themselves, if unlike me they didn't read up for themselves about how much of an affect diet has).

I just kind of worry about the future. I have a boyfriend just now who I've known for a long time, but I know it's not something that's going to last forever, and I can't imagine ever meeting someone new and being able to be a charming and interesting enough person for them. I have nothing to say for myself and everytime I'm in the situation where I'm meeting new people or come in contact with people I know from school and they ask me what I'm doing with my life, I just get so flustered and get out of the situation asap, because I know when I tell them I'm not working they look at me like "why not? she certainly looks fine" and I without giving them my life story straight away I just feel like no one's really going to be interested in getting to know and loving me despite all these insecurities IC gives me :-\


I really am ranting on here now, i really apologise!

[ad8123]

Please do not feel bad that you can not work. I am 27 diagnosed just days before my birthday in October 2003, I have been unable to work since february. You have no reason to feel that you are somehow less than others an illness is not something you can help, or think your way out of. Have you tried reading any books on Living with Chronic and Painful illnessess or Hidden illnesses. It is hard for people to understand when they can not see but you can tell them that it is an incurable and very painful disease although there are no outward signs. I understand having a lack of confidence with IC it is very hard for me too but I try to do what I can, hobbies and read a lot and watch the news. When I am up in the middle of the night I either watch PBS or someother learning channle (or news) or I read so I always have something to make small talk about with others. I wish I had the magic words to make you feel better but remember there are many Ic people who can not work and it does not makes us useless people there is still so much we can contribute to the world, just by surviving we gain strength and copmasion we can share with others. I hope you feel better about yourself soon. Keep posting this is a great place for support.

[Sarojini]

Everyone is right... you are NOT worthless just because you cannot work! IC is a REALLY difficult disease to deal with at a job -- trust me, I do it every day and often wonder why/how. Commuting to and from work with IC is difficult, being at work with pain and frequency is difficult, etc. Not to mention that the stress on the job often makes my IC worse...

So anyway, if you can't work, you can't work... it doesn't affect who you are as a person. You are still a beautiful and worthwhile person with her place in the world. :)

[crystilclear]

I had one job when I was 16 and that's it. I had a baby young and since then I have had bad pains of different sorts. I am not able to work outside of the home and barely keep up with my 3 kids let alone carry out all my other duties. I think it is hard for anyone with kids and juggling jobs and keeping up with the chores and such. Even if you don't have kids life is so fast paced and hectic it is so hard to keep up. I have to brush off certain things because people don't understand my situation. Yes you may look ok but that says nothing for what's going on inside. I know how you feel because I feel aweful not being able to contribute as much as I want to. It is a huge burden on my hubby but he is a great provider and helps around the house too. You have more to offer. Don't be so hard on yourself. Ic doesn't make you who you are. Don't let it get to you like that. I know it is hard because it can get you down because it is hard to live with IC but don't let it rule your life. I am thakful when I remember that yes IC is horrible but it's not fatal and I'm so grateful for that! I get to be here with my kids. I will gladly live with IC because some people don't have a chance and have something fatal and they would happily trade their problem for IC. I'm not in any way trying to downplay IC just merely to say for me it is better than the alternitive.It is not your fault that you got IC. Do what you can and try and ignore the rest. You know who you are and your situation and that is what matters. It's good to talk things out and here is a great place to do that. Take care - Chris

[JessicainArkans]

linz

I just keep crying and cryng as I read your plight.
I too have sufferd for so long now, I was diagnosed in May of 2002, have had IC since I was 9 or so and have not worked since July 31, 2002.
I just kept imagining if all of put together could just make one big circle, holding hands, tirelessly perservering this dreaded, damned disease we could make huge waves in how people treated us, how we felt about our selves and together we could see how much love there is between those of us who suffer everyday of our lives.
Please take the time to let yourself accept that you are going to go through bad days, wage them off if you can try, but do not blame yourself or the stupidity of others when the disease itself and I mean ITSELF only is to blame.
Take your grief and pain and and try with everything that you have and fight.
I have learned to take what comes easily (my anger) and move forward with clenched fists and fight. Every day we choose to take these challenges on, they can either knock us down or we can use them as launching pads to learn from and grow. To move forward into tomorrow is all we have, do not give up.
You give me the encouragement to stand up to this all and wage against it with every thread of being that I have, through your discouraged way you have given me the ultimate gift to see that all that is, is with in me, and I know when the plight is rough and the rough gets going I can come here and everyone will understand.
I love this IC family that I have come accustom to greiving, laughing and loving with.
Know we are here for you and that we are here to listen and love.
Hugs
JessicainArkansas

[Katrina]

I think sometimes if IC was all I had I could work....there are moments that would change my mind of that but it is usually what I think. The original reason I quit though was IC....I was 24 than and it was a miracle I lasted that long in the world of the employed. When I first quit ...it that condition if I continued to work I believe I would of ended up with even more diseases than I have now. The stress of working in that much pain and suffering was killing me. That is something else I wonder sometimes...that if I tried to work I would soon feel even worse because working is so much more stressful than the very simple life I am living now.


Anyway, survival when you are unable to work at a young age I believe comes from finding a way you can still give of yourself to this world and give yourlife meaning. I find it from what I give to people here through the ICN and what I give to my Church and husband. You need to find yours.

I hope things work out for you.
:grouphug: :grouphug: :grouphug: :kiss: :kiss: :grouphug:

[rumbat]

I don’t know how much advice I can provide, but I can share my story =) I have worked for my employer for 4 & 1/2 years. I started having problems in Jan of ’04 – so you know how it goes, constant Dr. visits and days just feeling too bad to go to work.

I was written up the end of May with the warning if I missed another day I would probably be fired. I was so angry that my employer would treat me like this, based off my past good attendance history! I’ve had a terrible flare-up since the beginning of July and decided to go on short term disability for fear I’d be fired for missing more days. It’s been a horrible fight to even be on short term leave, having the Uro fill out paper work every week and the short term co. not getting the faxed paperwork (for what ever reasons, huh). This of course delays my pay checks. I realize I am lucky, to even have the opportunity of short term leave as not everyone has this option.

I have already had so many unpaid days from work from being ill – on top of the medical costs, this has put me in a financial bind. I am scheduled back to work 9/1/04 – and I fear that when I do go back I may have another flare-up and loose my job.

I am 24 yrs – and I too wonder about a future career & what kind of work I might be able to do now since IC. But many stories on this site – it seems people can keep working so there is hope. I’m not trying to be negative here, but there are some laws / acts that prevent folks from being fired…

Feel free to e-mail me to ask any questions - shannon@veldt.com




:)