I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…
Post Edited (MMMNAVY) : 5/28/2009 6:22:04 PM (GMT-6)
I know I’m not a long-term sufferer, only having this disease 4 years, but being 23 and being so ill is difficult and my friends don’t understand. I recently had someone telling me they realised they ‘shouldn’t get mad at Phoebe when she can’t come out dancing and never does anything spur of the moment and is ’. It hurt. A lot. And I know it wasn’t intended to. But people’s naivety cuts deeper than anything else.
I’ve found the only people who understand – really – are my parents and my boyfriend. So I just surround myself with those people who understand.
I agree; generally people won’t help unless directly prompted. I guess it’s hard to know (unless you are sick) just what a sick person needs and what they can/can’t do, and what is hindering their life.
Post Edited (ivy6) : 5/28/2009 8:00:22 PM (GMT-6)
I was very bad in 2004-2006..I could not eat so dinner was out of the question. I was very much into going places and doing things..I could barely get off the couch to sit in the shower..When I went back to work..I barely made it through the work day and did not want to go anywhere except to bed..I had been the mother that was at every practice and game with my kids, and I couldn't anymore..I could not entertain or feel like going to visit any of my friends or family..My husband felt alone with no running mate anymore, and I did lose any friendships except maybe a few acquintances at work..I did not feel strong enough to sit through service..I did feel isolated and worried I might not get better or even get worse..It was a very dark time..I wondered about disability..It stunted my career,and I am not motivated to climb the corporate ladder anymore..I do not take one day for granted anymore..I start a new job on Monday..I have been off work which I am better now..I don't know my future or whether I could hit a major flare after I start and get fired!! I definetly understand how you feel..
I also struggle with work issues and having to take time off. I started a new job in March and have had to have time off twice for abscess surgeries, and spent the rest of my time limping about the office when I was at work.
It all depends on your work mates and hopefully you will have kind and compassionate ones like I do. But most of all, I wanted to say best of luck with your new job, there’s nothing that makes you feel better mentally than achieving that goal of getting through the working week when you have crohn’s! I think once you get back to work you will find yourself feeling more ‘normal’ than before – it can serve as a great distraction from your illness. A burden and a blessing (the job I mean). When I returned from surgery I was petrified of the pain of sitting at work all day (I only had 4 days off to ‘heal’) – but being around all the normality of work really helped in a lot of ways.
And you’ll get to mingle around in a social scene again!
Post Edited (spookyhurst) : 5/29/2009 12:21:55 AM (GMT-6)
Post Edited (spookyhurst) : 5/29/2009 1:06:26 AM (GMT-6)
Post Edited (aoccc) : 5/29/2009 5:04:39 AM (GMT-6)
I wonder if by being ill I burn people out? I feel more and more distance from my little brother and I depend on him alot to help me to take care of myself (laundry, dishes, etc.). Perhaps it is expecting too much out of a sibling?
I am a bit mad at myself for not getting married and have kids as soon as possible. But was it such a crime to want to build a stable career first? But given that my romantic relationship crumbled under strain...who knows...
Post Edited (MMMNAVY) : 5/29/2009 7:29:01 AM (GMT-6)
Im really sorry to hear u are having a lonely and sad time. This lousy disease does do that to u. I was diagnosed with crohns/colitis 21 years ago but we are sure I had it long before the actual diagnosis. Anyway as u know I have spend much of that time seriously ill with it and ended up with this ileostomy and it truely has given me back some kind of a life. I too am so much like u in the way I have always been the person trying to help everyone else and none of my friends or family ever heard me complain about being sick they would only find out when i was rushed to hospital yet again. I am lucky I have some wonderful compassionate friends and family. After my ileostomy surgery my sister made enough meals to last me 2 weeks and had friends dropping by, but when I was at my worst I shut everyone out. I wish I could offer some kind of solution so u wouldnt feel so down and I know its not the same as having someone over for a cuppa and chat but we are here for u Ivy, wish I lived near by so I could drop by for a visit . I sure do understand how this disease takes its toll. Is it a possibility for u to have an ileostomy too? Take care Thinking of u and hope things get better soon