I work fulltime and I am in a full-blown flare at the moment with fistulas, fissures, a seton and a mushroom drain which is poking out my butt draining the abscess. My work is great in that it is flex-time and I can start when it suits me, but I am pretty much always the first one in the office anyway and arrive at 8am every day. I haven’t had a sick day except for my surgeries. I find that early nights are essential for me, and I don’t do much through the week except get home and go to bed after dinner and some TV! I am stubborn and determined though, and I have been so sick at work sometimes that I have fallen asleep in the disabled bathroom at lunchtime from exhaustion, because I simply needed to lie down, and I run to the loo with D and spent a lot of time in there….. But I need to be working in order to stay positive and not get too depressed; I’m determined to not let this disease stop me. Don’t give up……. you will get back to work and you can still do it, you may just need some time out to get 100% better. I am waiting on remicade at the moment and have been in this flare forever…… the abscess has been torturing me pretty much all year but I have been determined to keep working. I had to have two surgeries when I’d first started at this job and I came back 2 days after my abscess surgery – I know I should have been back at work so early and it was a struggle not to cry or pass out back then but it made me feel ‘normal’ – so for me, a torturous day at work is still an accomplishment. I probably push myself too hard but that’s just me.
I know you can do it – you just have to believe in yourself and keep your chin up and make sure people know you’re sick, so that they are at least aware of what you’re going through. You will probably find yourself pleasantly surprised at how caring your co-workers can be
I think that’s definitely the key – the job I am in at the moment does not cause me any stress (touch wood) – and I know this is vital for my health, because I have seen how stress makes my condition worse (when I was at uni and assessment time came around I was always SO much sicker).
Also, I am doing a job which does not include a lot of stressful responsibilities. I hope once I am in remission that I can take on something more specific to the degree I completed. Until that day, this job is perfect for my health and my boss is wonderful and very understanding with my condition, so I feel very lucky.
Thank you for your responses. I've hit the Acceptance Stage finally. I went to management with my concerns and we agreed that I will train someone to be my supervisor so I can have a more flexible schedule and not be the only administrator in charge of proposals and high priority items.
I believe I'm going into remission but I'm still having severe joint pain, fatigue and headaches so full days arent going to work for me for a while yet. Or going back to school part-time, being a member of Chamber of Commerce, ACA fundraising,etc. Lucky I found out my parents owe me a ton of money from a settlement years ago, so I've been guilting them into paying me a couple hundred a month so I can keep the apartment and fight through these medical bills.
Thanks again for being here and being so responsive. Hopefully long-term I'll eventually get back to full-time and stay in remission long enough to be the busy body I was once. Its nice that most of you seem happy with decisions that you made to live your lives, with sacrifice. ((((hugs)))))