Working & Crohn's

[Linds89]

Hey,

So I guess I just need to vent about not feeling well and being expected to work through it.

I've spent the last two weeks struggling with fatigue, headaches, exhaustion, virtually no appetite, and aches/pains. I had just finished my pred taper 3 days before symptoms arose so it is likely that I was going through withdrawal/adrenal insufficiency issues but my GI was on vacation and I don't have a regular GP to go to so I had to rely on the generic hospital one. He ran blood tests and said that I don't have an infection and didn't really have much advice other than wait for my GI to come back. he vaguely suggested that I could go back on the steroids at a 40mg dose (he was kind of iffy about it and was very much, 'if you want to' about it... which seems like terrible advice but I took it because I was willing to do anything to feel better). In retrospect, had I known more about withdrawal I would have asked for an endocrinology consult but I didn't. So now I'm 5 days into a new 40mg dose and only barely feeling better -- hoping its just delayed effects of steroids.

Fortunately the first week of feeling awful was during a scheduled vacation week -- NOT how I wanted to spend that time, but at least it was paid rest time. I ended up having to miss 4 (unpaid) days of the following work week because I was just too tired/run down to work.

I have a very physical job. I work with kids with autism that present very challenging behavior (scratching, biting, hitting, kicking, etc) and I have to be very active with them (running around playing, keeping them focused, etc). Also we eat lunch when they eat lunch so its generally not a very relaxing time to try to force food down when you aren't hungry/feel nauseous while trying to encourage a picky eater to eat and not throw his plate across the cafeteria.

PLUS kids are always sick and I've started to develop stress/anxiety about every little cold they have because I don't want to get sick and sent into a flare-tailspin.

I just don't know how I am supposed to work and live a normal life when I can barely get out of bed right now. I don't have the energy to do anything or if I do, it comes in small bursts and then I am spent.

I'm going to work tomorrow and I have packed a variety of foods/snacks to nibble on to force something down at least during the day so I can make it through. I'm also stressing over the fact I haven't fallen asleep before 1am this past week (usually closer to 3am) despite taking benadryl and melatonin, and I will have to get up around 5:45am tomorrow morning. I'm hoping that I can get a little sleep and maybe being up all day at work will force my body to reset its clock and have me tired at a better bedtime-- normally I shoot for 10pm but I'd accept midnight at this juncture.

My Crohn's symptoms aren't even that bad right now, no D, no bleeding, only mild pain and its more of a discomfort than pain; but its the peripheral symptoms that are wrecking me: fatigue, insomnia, joint pain/aches, headaches, no appetite (except for the middle of the night, of course). Its so frustrating because on the surface I don't seem that sick; doctors don't really have anything to say other than wait-and-see and my supervisors don't know what to make of that. I feel like I'm coming off as, 'i just dont feel like being at work' when its more of a 'i dont feel like i have the energy to move'.

Thank god work has been very tolerant thus far but I'm not sure how much more missed time they will accept. Considering taking a leave of absence to focus on just feeling better but during these last two weeks, I've been bored out of my mind despite the low energy so I don't know what I would do with myself during a LOA.

I applied for a promotion and I know that all of this missed time will be taken into account and will likely negatively impact my chances of moving up in the company. However, the supervisory position would probably be easier for me because it is more administrative and less physical. Who knows.

I'm only 28 so I have a long future of working ahead of me.

Just frustrated and don't know how to manage all of this.

 

[ronroush7]

I am really sorry. I hope things get better soon.

 

[MizzSarah]

Same job here. Work in the schools and I'm in the same boat as you. I had to put in my first absence lienancy note early last year because I was having nightmares about being let go. I started off the year taking a 4 day position because I had a very difficult summer with my health. Under the advise of my doctor he said to take it easy. Work this year however has not been easy. The physical demands.. the unrealiability of the job. I've been stressed to the max this year nearly taking a sick leave because of how difficult it got. Trying to hold out however.

I've also had to realistically think about changing careers because of the physical demands of the job. I'm thinking secretary though I'm trying real hard to hold out until there's no hope left. Didnt think it would be this difficult at 24...

Message me anytime. maybe we can coach eachother about what to do with our career choices.

Hey,

So I guess I just need to vent about not feeling well and being expected to work through it.

I've spent the last two weeks struggling with fatigue, headaches, exhaustion, virtually no appetite, and aches/pains. I had just finished my pred taper 3 days before symptoms arose so it is likely that I was going through withdrawal/adrenal insufficiency issues but my GI was on vacation and I don't have a regular GP to go to so I had to rely on the generic hospital one. He ran blood tests and said that I don't have an infection and didn't really have much advice other than wait for my GI to come back. he vaguely suggested that I could go back on the steroids at a 40mg dose (he was kind of iffy about it and was very much, 'if you want to' about it... which seems like terrible advice but I took it because I was willing to do anything to feel better). In retrospect, had I known more about withdrawal I would have asked for an endocrinology consult but I didn't. So now I'm 5 days into a new 40mg dose and only barely feeling better -- hoping its just delayed effects of steroids.

Fortunately the first week of feeling awful was during a scheduled vacation week -- NOT how I wanted to spend that time, but at least it was paid rest time. I ended up having to miss 4 (unpaid) days of the following work week because I was just too tired/run down to work.

I have a very physical job. I work with kids with autism that present very challenging behavior (scratching, biting, hitting, kicking, etc) and I have to be very active with them (running around playing, keeping them focused, etc). Also we eat lunch when they eat lunch so its generally not a very relaxing time to try to force food down when you aren't hungry/feel nauseous while trying to encourage a picky eater to eat and not throw his plate across the cafeteria.

PLUS kids are always sick and I've started to develop stress/anxiety about every little cold they have because I don't want to get sick and sent into a flare-tailspin.

I just don't know how I am supposed to work and live a normal life when I can barely get out of bed right now. I don't have the energy to do anything or if I do, it comes in small bursts and then I am spent.

I'm going to work tomorrow and I have packed a variety of foods/snacks to nibble on to force something down at least during the day so I can make it through. I'm also stressing over the fact I haven't fallen asleep before 1am this past week (usually closer to 3am) despite taking benadryl and melatonin, and I will have to get up around 5:45am tomorrow morning. I'm hoping that I can get a little sleep and maybe being up all day at work will force my body to reset its clock and have me tired at a better bedtime-- normally I shoot for 10pm but I'd accept midnight at this juncture.

My Crohn's symptoms aren't even that bad right now, no D, no bleeding, only mild pain and its more of a discomfort than pain; but its the peripheral symptoms that are wrecking me: fatigue, insomnia, joint pain/aches, headaches, no appetite (except for the middle of the night, of course). Its so frustrating because on the surface I don't seem that sick; doctors don't really have anything to say other than wait-and-see and my supervisors don't know what to make of that. I feel like I'm coming off as, 'i just dont feel like being at work' when its more of a 'i dont feel like i have the energy to move'.

Thank god work has been very tolerant thus far but I'm not sure how much more missed time they will accept. Considering taking a leave of absence to focus on just feeling better but during these last two weeks, I've been bored out of my mind despite the low energy so I don't know what I would do with myself during a LOA.

I applied for a promotion and I know that all of this missed time will be taken into account and will likely negatively impact my chances of moving up in the company. However, the supervisory position would probably be easier for me because it is more administrative and less physical. Who knows.

I'm only 28 so I have a long future of working ahead of me.

Just frustrated and don't know how to manage all of this.

 

[SauceySciencey]

Sleep...I miss unbroken sleep. Truly. Before diagnosis I was only a 4-5 hour sleeper anyhow.

I'd give anything for more than 4 hours sleep. I tell the Doctors that, especially the last time I went into hospital for a flare, and they don't say anything. I tell them I'd rather a sleeping pill than a shot of morphine. The first time they usually don't realise I'm being serious, and laugh accordingly. The last time they laughed, I told them the hospital we were in was located within about 200 metres of three different people who could provide me with the ability to get a good 8 hours sleep (not a bad place, but it's right on the juncture between two cities, so, socio-economic and all that jazz). They didn't laugh at that! Still didn't do anything though.

Being whacked out on pain meds, your not you. You can still be yourself in your dreams, except your not in pain there. At least for me. I can be riding a unicorn, but I'm still me. On pain meds, you stare out a window. You'd think they'd encourage that sort of behaviour.