Shellshocked

[soupdragon69]

I went to see my GP this evening because my blood tests are climbing again liver function wise and the Rheums nurse on the phone has told me to stop my Methotrexate, keep doing blood tests and restart Metho when my levels are below 50 again at 5mg less than I have been taking.

Problem.. this is what happened when I was on Azathioprine and 6MP last year and ended up having to stop them because my liver function deteriorated.

I went to update my GP to keep him in the loop this evening.

He asked me to tell him how I was overall on the pain, gut, joints, muscles, fatigue levels.

He knows I dropped to 5mg last monday on my pred and the plan to stop it monday coming.

His words to me?

" I am not so sure you really should be working right now"

I told him I had done 2 x 4hr shifts and was wiped out after them (Sun and Tues) and actually stood in work yesterday wondering if I could get back to coping with my job again.. but it never dawned on me that I should stop working at all!

I also said there is a certain amount I have to learn to live with. He agreed but said the question was - was I making myself worse by continuing to work?

I said I needed time to work out whether I could return to work i.e. am trying now by doing a phased return and to be honest have never felt so drained in my life on a return to work.

I told him several folk had been at me more than once to apply for Disability Living Allowance (because I have severe crohns and also multiple other health issues impacting on my mobility and quality of life) he said it was a hard bridge to cross for many and knew it would be for me in respect of coming to terms with applying but that it was something I should consider.

He said with the levels of pain and mobility issues I have he really doesnt know how I manage to work and cope.

I saw him at 5pm and its almost 10pm and am still shellshocked by his comments. I guess its because I always think there is someone worse off than me and what do I have to whinge about? I am thankful for what I can do.

Yes I have my down days - but who doesnt?

We have agreed to review things once I have seen gastro and rheums in the coming weeks and go from there.

I know am waffling here but just trying to make some sense of it all...

 

[Guest]

hey Jan,

just a little thought here.. if a medical professional who obviously knows you well, knows your medical history and how it affects you, has suggested that maybe it's time to think of you, and not your career, then i would take notice of him. i know that's a painful stage to admit you're at, but you have to put your body first.

applying for DLA isn't the end of the world, and is not a 'giving up' tactic. i've had to swallow pride and determination, and seek help in certain areas of my life when i would rather not have had to, so i know what it's like.

i think you are still allowed to work a certain amount of hours, or bring home a certain amount of earnings, and still get DLA - don't quote me on that though, look into it. but even if you can't legally work on DLA, you could still do voluntary. this might just be a short-term solution, just to give yourself a rest from struggling to hold your job down - i would imagine the physical and emotional effect of that on you is not doing you much good right now.

i wish things weren't at this stage Jan, and that you didn't have to look at coming out of work at this point in your life, but maybe it's time you really need a break from it all.

((hugs))

 

[kromom1]

I would have to agree with Ding. Coming home from work totally exhausted all the time can't be good for a sick body. Good luck with your decision, Jan. I'm thinking about you!

Lisa

 

[Kev]

Hey Soup

I just contemplated that very same notion... was beginning to wonder if my state of health recently was not the turmoil from last spring, or my attempt to give up smoking, but the hours of work I'm putting in... It's not an easy thing to face, let alone make that decision. I seem to have lucked out (so far) as I'm slowly getting better... I still come home most nites totally exhausted, and I live for my weekends, but so far it seems I can postpone facing that decision.

I wish I could offer some insight, some pearls of wisdom... except for maybe this.. I'm convinced, with absolute certainty, that my current health pickle was a direct result of pursuing a career that I no longer relished.. Seems to me you love nursing, but the reality of continuing whilst dealing with your crohns seems to have been turmoil after turmoil... a struggle to maintain a job that seems to nearly kill you to do.. in a hostile setting where some seem determined to rid themselves of you rather than helping you to deal with your health issues. It's a tough call... but my gut seems to tell me that you'll enjoy the life you have a whole lot more IF you no longer have to fight two demons; crohns and work!

 

[MINI Cooper]

I agree with everyone here.
I, myself, the grand old age of 26 am on Disability for who knows how long.
So far it has been 2 years. Although I am feeling very left behind and
honestly sometimes a bit worthless, I know it is best for my body, and
that I would not be able to give my all to any job right now, the pain being
as bad an unpredictable as it is. I'm just glad that Disability is an option.
So listen to your body, and don't feel bad about it. Do what your body needs.
Jobs you can change, you only get one body!
Hope you feel better

 

[Kittee]

Well you could always just do it for awhile? Don't feel down about it, think about it as a chance to recooporate and refresh yourself.

 

[kello82]

i think kittee put it really well- as a chance to recooperate

i know where your coming from soup, with wanting to push through everything and its like, hey if you CAN go to work then why not right? i had this mentality all through high school. never skipped a beat, took all honors/AP classes, did competitive colorguard, etc.

but looking back on it now its like, wow was that a bad choice for my body? if i had taken better care of myself over the years would i be in the mess i am in now and missing college as a result of it? this all came to me last spring when my blood test showed a hemoglobin of 6 and i was still actively competing in guard which leaves a HEALTHY person winded, and for my body i literally came close passing out every time, but just pushed it away thinking i was just tired

that was my shellshocked moment. it was such an abrubt shift in the way of thought, i know what you mean by using that word to describe it.

i know a job is a lot bigger deal than high school though, but either way you have to be good to your body!

 

[soupdragon69]

I hear you folks, I hear you.... sigh..

Just need some time to work through things in my head.

The other thing is I was told a couple of days ago I only have until July this year to finish my honours degree. Just feel its such a mountain to climb right now and yet I dont want to lose it after all the struggling and work I have put into it over recent years.

Kev, you are right that I love nursing and love the field I am in too. Was pondering reducing my hours initially yesterday before I went to see my GP but need to look at my finances.

On the other hand as you have all said my health has to come first - everything else will sort itself out in the long run.

If I do leave my job I also will have to move out fast from where I am living as it comes with the job. I am on a housing list but I think it will take some considerable time (unless I lose my job or leave it) to get housed via it.

As I said time to ponder and work things through...

Thanks everyone so very much for your thoughts, I do appreciate it alot!

 

[Creepy Lurker]

The other thing is I was told a couple of days ago I only have until July this year to finish my honours degree. Just feel its such a mountain to climb right now and yet I dont want to lose it after all the struggling and work I have put into it over recent years.

You have extenuating circs, so should be able to do something about this. I was able to retake all the modules I failed for my second year without any penalties.

 

[soupdragon69]

Its why my degree has gone on for so long Creepy - extenuating circs - but my uni was taken over by another one and they are absolutely rubbish. It is their board that have informed me I have until July to finish. I also have to resupply all my certs and quals to date because they lost all the proof in the transfer. The letter they sent and subsequent phonecall was the same. If I dont have it in by the end of January they will cancel my degree! So as you can imagine am not very impressed by all this never mind the stress on top of everything else.

I JUST DONT WANT TO GIVE IN!!!!! I have put all this work in and now have no choice but to break my neck to meet their decision or lose the recognition of all the work to date.

As things stand I have one assignment to hand in and then my dissertation. Its doable but I also have to remain at work so they fund it and I can achieve my practical side of criteria they set.

Cant win on any front at the mo sigh..

 

[CookieCat]

Jan I'm so sorry to hear your news. Like I said on Creepy's thread, I know where you are coming from on this. I was also in another situation like yours with study when I was at Uni. I had a scholarship, was in student residences and I got so sick I just couldn't keep up. Felt like my world was falling apart because being sick ended up costing me everything - my future, my income, my accomodation. I had to move back home with my folks which was like I had failed in so many ways.

Sounds like you really don't want to/can't give up work for several reasons, but something has GOT to give. If you think you can manage it, can you afford to go part-time with your work? Can you afford not to (health-wise)? It looks to me like that's the only way you're going to be able to finish your degree.

Nobody can make this decision for you and it's a big one. Just remember that your health has got to come first no matter what. Look at things realistically and be fair on yourself. Nothing - not your job, not your degree - is worth it if you end up too sick to do anything at all.

Sending you the hugest doughy hugs filled with choc-chips - hope they help!

Love,

 

[soupdragon69]

Thanks girls I really appreciate your thoughts...

Am really struggling at the minute to get through my shorter shifts and had to sit down on thurs as just felt so drained.

Yesterday I couldnt get showered and dressed til mid afternoon. I went out shopping and when I got home from the ONE supermarket I went to had to just put all the chill stuff away and leave everything else til later to unpack.

Currently I am still in my PJs and even though been up over 2hrs I have just got round to eating breakfast and have some nice stomach pains.

Was talking to a close friend last night and was saying to her this phased return to work has been like no other because I just cant seem to pick my energy levels up. I was allowing for the fact that my stamina was low with having been off and in the past I have improved with my return. This time it hasnt happened and am scratching my head as to what is going on.

Time will tell... tomorrow I have my first 8hr shift so we will see eh?

Am putting off going to see my GP at the minute til I have seen Rheumatology as they stopped my methotrexate about 10 days ago as my liver function tests are high. So need a plan on that front and of course the pain isnt good with having stopped my pred too recently.

Will get there in the end - wherever "there" is...

 

[bruscar]

Hang in there

Thanks girls I really appreciate your thoughts...

Am really struggling at the minute to get through my shorter shifts and had to sit down on thurs as just felt so drained.

Yesterday I couldnt get showered and dressed til mid afternoon. I went out shopping and when I got home from the ONE supermarket I went to had to just put all the chill stuff away and leave everything else til later to unpack.

Currently I am still in my PJs and even though been up over 2hrs I have just got round to eating breakfast and have some nice stomach pains.

Was talking to a close friend last night and was saying to her this phased return to work has been like no other because I just cant seem to pick my energy levels up. I was allowing for the fact that my stamina was low with having been off and in the past I have improved with my return. This time it hasnt happened and am scratching my head as to what is going on.

Time will tell... tomorrow I have my first 8hr shift so we will see eh?

Am putting off going to see my GP at the minute til I have seen Rheumatology as they stopped my methotrexate about 10 days ago as my liver function tests are high. So need a plan on that front and of course the pain isnt good with having stopped my pred too recently.

Will get there in the end - wherever "there" is...

Well i have had many many days like the one you describe here...

Next month i will be four years out sick from work, the frustration etc gets to boiling point and essentially is out of my control.

I am so glad to see you say that you don't want to give up........

Chin up girl, we are all rooting for ya !!

Hugs

Bruscar

 

[CookieCat]

Hey Jan, Thanks for your reply on my thread and your support as always. Just thought I'd check in here and see how you were going yourself.

Sorry to hear you have been struggling so much. Boy I know that fatigue well! Some days, I get up and go upstairs, have breakfast and then fall asleep on the lounge. Then I get up and go back down the stairs to my bed. Not much of a life.

How did your 8 hour shift go? I can't imagine having to work that long - I take my hat off to you!

Wish I had some answers that might help. I really feel for you. Just try and be easy on yourself and don't kick yourself when you need to stay in your PJs or get tired. Work with yourself not against yourself - otherwise you will burn out and end up back off work.

I'm rooting for you too Soup! Just remember we are all behind you and if you need a shoulder to cry on, feel free. Think I've left a few cyber shoulders soggy here myself from time to time!

(((HUGS))))

 

[Sojourn]

Hope you are getting along okay with your work and school. I feel like I could offer more support if I was familiar with the uni system over there. I don't have any deadlines as far as finishing so my situation is different. But I have indefinitely suspended my online coursework to finish my degree. I haven't even really thought much about getting back into it since my surgeries in 2007.

 

[soupdragon69]

Thanks Bruscar for your support and understanding - I was told today in rheumatology clinic by the registrar that I really need to think about and follow through on pacing myself more and also looking at a different area of work - sigh.

My boss has been great and I am not ready to call it quits yet I have to say...

Cookie, truly hope you are doing better in recent days - have been thinking bout you!

Sojourn, am still waiting (will be 2wks this friday) for a reply from the uni and if I hear nothing by monday will ring them again!!

As I said on Colts thread in the venting section rheums have told me I now have neuropathic pain on top of the arthritis and have put me on a low dose epileptic drug that works well for it. Not something I really want to go for but have so much pain and getting "electric shocks" down my arms and through my feet it takes the breath from me regularly. The registrar also gave me splints to wear on my hands/wrists at night to help rest the joints as she could feel inflammation in my wrists yesterday.

I ended up having intramuscular injection of slow release steroids too as they had to stop my methotrexate 3wks ago due to my liver function deteriorating, so its supposed to tide me over til my liver improves and can restart the metho again.

I only stopped oral steroids mid January and really dont want more but just dont have a choice right now if I am to function.

The registrar told me that the gabapentin (new tablet for neuropathic pain) should also help me sleep - yet again I have been up since 3am so really am hoping this will work!

Anyway, time will tell eh? Just have to keep plodding along.. Thankfully my guts are sort of behaving at the minute and not shouting for attention!! Am still waiting for my app with gastro for review too.

 

[BWS1982]

Jan, some of the people I know bring up "working making things worse" for Crohns, and some (mostly docs) seem to just acknowledge the possibility by dancing around the topic. I can state that over here, we have FMLA which is basically an "option" to work as you can, intermittently, though, I used that all up. My job was/is less physical than yours, but mentally I was being very stressed out (some of you may remember my former boss), and it seemed to carry over. I was spinning my wheels by sticking it out. I had urgency and frequency as the biggest issues, so lets just say there were "issues" being 200 feet from a toilet. I think honestly, you should look at your past, how have your symptoms reacted to the breaks and time off, how has relaxation and contentness affected your symptoms? I think that's where your answer lies, as long as the logistics mesh with that answer and it's all practical. Fell better, St. Patty's Day is 'round the corner.

 

[Colt]

I hate to see you doing so poorly and I fully understand the trouble and terror involved with not being able to do your job. No one wants to have a major part of their life come crumbling down and work certainly is a major part of life. Especially when you get so attached to and involved with what you're doing and the other people involved.

As much as it would suck to have to deal with a big change maybe they're right and you should keep an eye out for a clinic job or something where you wouldn't have a lot of physical demands on you and you could always run off to the washroom without the worry of leaving someone helpless. There's a lot less worry involved leaving someone stranded sitting in a waiting or exam room than on a surgery table.

While not as glamorous you could probably do without pushing yourself and the medications to the point of liver failure. Trust me, it'll be a lot harder for you to keep up your professional life without a liver. I just hate to see you suffering so much, so that you can do something you enjoy, that you stop enjoying what you're doing.

Good luck no matter what you try to do and I hope you get things under control somehow.