Overwhelmed and needing someone to understand...long note

[2much]

Hi All....I am thankful for this forum and the kindness that is expressed to all.
I am overwhelmed with nothing more to give and feel up against a wall .....not knowing how to go forward.
My quick story is that I am in a mild flare now....alternating between d and c...tonight is my typical story of being constipated for a few days despite my efforts he help it along....I am awoken in the middle of night with terrible abdominal pain ..... I am in the bathroom for a long time....my legs get numb...and with the peristalsis the pain in my belly gets overwhelming....then comes the D. By the time I leave the bathroom I feel beat up....my whole body hurts and I end up on my couch too uncomfortable to sleep.

Next part of my story is that I am a nurse with very little leave time left....only 3 days and I am trying so hard to not use it and work through my pain and discomfort and go to work...I have done OK....but it takes everything I have to get through my day.....these last 2 days have been busier than usual with people needing so much....and my patience level is low. This is not something I share with my patients....I am good at maintaining my professionalism with them but it is behind the scenes that I get cranky and/or whiny. Not the way I want to be.

Next part of my story....my partner just sprained her ankle and is need of a lot of help right now......and there is nothing that I won't do for her....so tonight in the midst of my issues I am helping her to the bathroom.....getting her medication and making sure she is set. I wouldn't do it any other way.....we have a great relationship and I have been well supported with my CD. Adding to this scenario are elderly in laws in lots of need and a brother in law with terminal cancer. All needing help. As the nurse in the family, I am involved in a lot of their care....and...again...it is important to me to be a part of their care. This family has made me feel loved and cared for much more than my own family and has been there for me much more than my own family.....

Having said all of this....I am exhausted....my body hurts all over....my joints are killing me...I have vicodin but will only take when I am home...so during my day I just accept it until I get home.....I am not on any CD meds right now because I have a new GI who wanted me to have a SBFT first before starting me on something. I just had the promitheus test for how I will metabolize Imuran....do not know the results. I had a CBC and CRP and Iron tests done.,,,my CRP is my highest but not nearly as high as I have seen on this forum...it is 25. He did not do my sed rate this time....my iron shows that I am borderline deficient and my CBC was normal. I do have a high PTH which is not directly related to CD but may be related to low Vit D. I have taken Pentesa which I had an enormous flare...I tried Remicade but had a reaction and then was on Humira for a few years with intermittent Entocort for breakthough flares...I have not been on prednisone because I am one of the few extra large people and i feared weight gain and asked to not take.

Now for the last part....it is almost 3am....I have to get up a 6 to start my day...I will have no help at home.....3 dogs with special diets....walks....meds for them, my partner who will also need care...drive an hour to work and then take care of other people's needs and then back home to do the same with taking care of the dogs....their meals....our meals....personal care for my partner. And....I just do not have it in me...i can fight this feeling ..... this is what I do but my truth is all I want to do it pull the covers over me and be left alone....take my pain medication and rest.

I am afraid of what my co workers will think....I do not have very much leave time and if I go over that I can do FMLA but then that is a whole other thing and I will go unpaid.....I am a federal employee....we do not have short term disability....i do have long term disability but I do not know if I will even recognize the need for it unless it is out right clear...like I am status post surgery or if I am violently ill which I am not. Plus it doesn't go into effect until after 60 days and I have never been out that long. My supervisor is very militant in a way and strictly by the book....no very warm and fuzzy so I feel so uncomfortable calling him and telling him I will be out....he will say OK but there is an undertone that I am uncomfortable with....I get the impression that they feel that I should just suck it up...and honestly I do try...I try to stay quiet regarding my chronic discomfort....co workers sometimes ask me how I am and I try to minimize it....I seem to talk more about my family's medical issues than my own. Like yesterday at work when I got the call that my partner was on her way to the ER.....I just told my boss I was leaving an hour early to meet her there....

So I guess I just wanted to put this out there and tell people who would understand how this disease effects so many parts of our lives...sometimes i really feel alone and that the people around just don't get it .....

Thanks for listening and understanding

 

[2much]

just an addendum to my story.....my partner asked me to stay home due her pain...her unsteadiness and just plain ol need for help....we live in a very rural area and we do not have a social network for me to ask anyone....her family is not available except for parents who are not able to give her what she needs......
I was going to force myself to go work but when she asked me to stay home I did not hesitate...
Now....I texted my boss with this story and just as I thought he wrote back...OK.....not anything like I hope she feels better...are you ok....you know....the warm and fuzzy kind of response. I knew it and now I feel like I have my tail between my legs....Here I have been pushing myself to go to work and make myself look like I tough and a dependable employee....I feel like I was just placed back on the bad employee list.....
This kind of stuff only makes CD worse...I know for me my stress plays a huge role in my life.....well....thanks again for listening

 

[Clash]

I hope you are able to find some relief soon. I didn't have any advice really just wanted to let you know someone was listening. How soon is your SBFT? I hope you are feeling better soon.

 

[Avw]

Really sorry, sounds like you are stuck between a rock and a hard place. But on the plus side, you sound like an incredibly strong person to be dealing with all of this so well.

I definitely know what you mean about getting the "irresponsible employee" treatment. I used to feel like everytime I called in sick, they were thinking I was just shirking my responsibilities. Then I just got to the point where I would go into work, no matter how horrible I felt, just so they could see first hand how much I was suffering, then they would send me home and actually sympathize with me because they knew I wasn't faking after having some face time with me. I know this probably isn't possible in your situation because most people work in large places and don't share one bathroom with every employee... my office consists of three people including myself.

I wish I had some advice to offer.

It does sound like you are always putting everyone before yourself, which is amazing that you can be so caring and selfless, but you will have to stop and take care of yourself at some point.

Really hope you can get to feeling better soon, and anytime you need to talk or vent, always feel free to send a PM.

 

[Kip1]

Hi 2much
I am so sorry you are feeling this way. I think you know yourself you are going to have to take it easy for a while & take time for yourself. Perhaps you can show the post to your partner so they can understand how you are feeling at the moment.
Im sure if she & also maybe the rest of the family knew the current situation with your flare they may just help a little if they could. After all love should go both ways & Im sure they treasure you dearly & would want to ease your burden.

 

[vanilla_chai]

Wow, that is so much for one person to try to keep up with.

My boss can be like that too. In my situation I end up talking with my project manager who is organizationally his peer and she usually makes me feel better. You'd think in a medical environment you'd find more compassion and understanding... how frustrating

As far as keeping up with things, would it be less stress or less of a financial hit to pay someone to help with cooking or house stuff occasionally rather than fmla? I know I've considered it in the past when work and housework were just too much...

I like to do it all but I'm slowly learning I have limitations and my body just can't keep up with my spirit sometimes

Hope you can get some rest today as well

Ali

2

 

[2much]

I want to thank you all for your support and understanding....it helps to know that somewhere out there are people who understand and are gentle with me and not overbearing. I felt so guilty this morning and was so upset that I ended up going to work...my boss just went on as if nothing ever happened....never asked about my partner or me for that matter.
I came home to can you do this can you do that...I have no more to give...I am not eating ....and I am craving sugar...anyone experience that...all I want are sweets....I know this is not helping me in any way but it is all I can stomach....
Anyway....thank you for taking the time to write me back....I am looking forward to being more and more a part of this forum....I hope I have something to offer to others in times of need.
By the way my small bowel series is not scheduled until 10/8....I am 3 hours away from my GI doc....I live up in Northern Maine .... up by the Canadian border....So my doc was kind enough to also schedule me to see him on the same day.
I was hoping that he would prescribe me prednisone or entocort now to help with my flare symptoms but he appears to be very conservative with meds which on some level I appreciate....he is looking at the whole picture and not just making snap decisions and pushing any med on me....
Hope you all have a great night.....be well......

 

[vanilla_chai]

Yuck. Maybe it would help to spell out things to your family? We get so good at adapting and focusing on the non yucky stuff that sometimes loved ones forget. Sometimes I just have to say to my husband, I'm so sorry, I really want to do more but I'm just so sick. He'd do anything for me, he's just not all that observant sometimes and needs to be reminded on occasion

Good luck with the GI. I do not envy living so far away from drs!

 

[happy]

2much,
It is too much--you are not shirking--you are ill! You should be taken care of right now. The trouble with good caregivers is that they give and give until they burn out and then everyone is surprised when they stop giving so much.

Is there anyway that you can get some help? Shorter shifts temporarily? Someone to help on the home front? Someone to help with the dogs, the elderly folks, the ill brother-in-law? Someone to whom you could at least talk with about your struggle? Does your workplace have any employee benefits for elderly care, a counselor, crisis help? If not, how about your nearest town, county or state? Do any of these places provide help?

Step outside of yourself for a minute and think about you would tell someone who was ill and in your situation. You likely wouldn't tell them to hunker down and keep at it. You need to speak up and tell those whom you are caring for (outside of the work clients) that you are very ill and need to step back a bit to care for yourself or you won't be able to help care for any of them anymore.

I know this is not easy to do--I have been there myself--illness sometimes makes us do the very thing we are afraid to do--in our case, not look after others' needs the best that we can. However neglecting your own needs will likely make the flare last longer. Could you bump up the tests?

 

[Tenacity]

Someone needs to educate your boss about IBD!! I'm so sorry that you are surrounded by a lack of understanding in your workplace. I would suggest that instead of talking to your co-workers/boss about the needs of your family, you should open up and communicate with him, the impact your illness has on your everyday life, and how crucial it is to have some flexibility for days when you don't get any sleep due to your symptoms. Good communication and understanding, might change the way he treats you. Unfortunately, there are people like him in the world - who do not have any compassion for other people - it is so unfortunate that you are working for someone like that. Try to rise above him, and believe in yourself, and don't allow him to make you feel bad about yourself. You have nothing to feel bad about, and everything to feel proud about.

I know how it feels to be sick, and not be able to rest due to the responsibilities to other people and work. It really is extremely tiring I know. Please don't be so hard on yourself - you are doing a amazing job taking care of everyone around you with all that you have to deal with.

Would you feel "comfortable" talking to your boss about your health and perhaps sharing with him, the impact it has on your life at times. Would you be able to arrange unpaid days off when you need time out?

Lastly, I do not believe it is a very good idea to be on no meds for your Crohns. Think about getting on some meds to keep everything in check. As you said, it is not as bad as it could be right now - best to keep it that way.

 

[Earnellzwifey]

Do you have home health that might be able to help with the brother that is ill? I know you may not want to think about this but since he is terminal can you possibly get hospice care for him.

Do you possibly have elderly daycare services in your area? There are a few government funded programs where I live. they come and pick them up and involve them in activities for the day and then bring them home. This might at least give you some self time when off work. I do not know what shift you currently are working.

As for your partner I know that a sprained ankle is hard to get around with, as my mom just had reconstructive surgery for a broken ankle and have a massive blood clot that they can not remove in her other leg due to her other many health problems. But she do understand that when I am really sick I just cant get over there and help her as much. I live next door to her and her mate is gone most of the day. Out of her selflessness she don't call me unless she just really have to.

I also know all to well that you dismiss your own problems to try and help others. I use to be a 911 dispatcher with a non compassionate boss as well. Not the easiest place to call in or try and have a laid back day when you feel really bad.

The only advice I can really give is that you are only damaging yourself when you continue the neglect yourself. I pushed and pushed until I ended up permanently disabled from not getting the proper care I needed for myself. Now I am no good to anyone really.

Do you have any responsible kids in your area that might help with the dogs like walking them after school and on the weekend for a little money?

If you keep putting all the burden of everyone else on your shoulders you will break. you are only human and have limitations. Your day to day routine would be hard even for a healthy person, which you are not.

Have you looked into the disability laws for employees in your area. I know there are some federal laws that even if you boss don't like it he still has to follow by. I am not talking about FMLA but things like them having to try and accommodate you with limited responsibilities when you are flaring. You probably will need your Dr to write a note of what you can and cant do and as long as that type of work is available at your job your boss is obligated to accommodate you.

sending you hugs and best wishes. I also agree with letting your dr know what is going on and either ask them push up your appt date or put you on something that can at least get you by till you test date.

Please keep us updated on how things are going. My heart goes out to you.

 

[Kip1]

I think craving sweets is our bodies way of saying Im running on my limits & needs a quick burst before I drop. Please take note of this & look after yourself more. Your boss will just have to suck it up & understand more.
I agree with happy's post
(Step outside of yourself for a minute and think about you would tell someone who was ill and in your situation. You likely wouldn't tell them to hunker down and keep at it. You need to speak up and tell those whom you are caring for (outside of the work clients) that you are very ill and need to step back a bit to care for yourself or you won't be able to help care for any of them anymore. )

Sound advice I think.

 

[karj]

I think everyone on this forum can identify with how you are feeling at the moment. There comes a time when you have to set boundaries, limits, for what you are able to do. I am just getting a flare under control at the moment, but I was in pretty bad shape a few weeks ago and it just got to stage where my body was just giving up and said - no I am not doing it, I am not going to work, I am not doing household chores, I am not cooking dinner, i am not looking after my parents - . And that was it, everyone just had to get on with it. And they did, when I stepped back they just had no other choice. My mother was in constant need of attention, ringing everyday, she has been ill, but she was also acting up a bit. My father has other problems, he suffers with a drink problem and got himself into big trouble. I was getting phone calls every other day about him and one day I just said no, I can't do this. So I set boundaries for both of them. I told them what I could do, what time I could give, and said I can do no more then this. I think this is what you need to do. It sounds like you are heading towards a point where your body won't give you a choice, and some day you just won't be able to get out of bed, or you will end up in hospital. I was doing 2 jobs, along with looking after my parents, and trying to be a good girlfriend to my boyfriend. But something has to give. You can't be all things to all people. It is obviously in your nature to help people, I am like that too, I am a teacher. Teachers, nurses, we have that nature in us. But I got really bad, about 2 months ago, I was finding it very hard to cope. Now since then I found out was very anemic, and that would probably account for how I was feeling, but I remember sitting in my car one day at work and just shaking thinking I just can't do this anymore. I had my mom crying to me on the phone, some guy ringing me about my dad, and I was exhausted and I knew I had to drive 1 hr 30 to get home. That day I rang my doctor and said I needed to see a counsellor and fast. I went the following day and she was the best thing I ever did, I only went for 2 visits. But she said I had very little left to give and what I was experiencing was burnout. This is what you have too, you just have no more left to give. So it was her that told me to reestablish boundaries for everyone. before you agree to did something, stop and think, say to yourself, 'is this right for ME right now?'. don't just agree to help straight away, you don't have to turn into a selfish prick lol, but just say I can't do it right now, but I will give you a call when I have the free time. It will be hard at first, but it is liberating after a while. I also think your partner maybe needs to be a bit understanding. And the other suggestions about getting house help etc might definitely be worth looking at. About your boss, my boyfriend's boss is exactly the same. I am lucky in that I have a very understanding boos, but he deals with the undercurrent tones in texts etc. He spends half his life trying to decipher them!! Hope things improve for you soon and we are here, keep talking

 

[Earnellzwifey]

2MUCH just sending you some love. Hope your day is a little brighter today.

:hug:

 

[2much]

thank you all for your heart felt advise and again understanding and support.....I did make a decision that this Sunday I will not be attending an annual big family harvest celebration.....my partner's family have been potato farmers for 5 generations and after harvest they all get together for a wonderful gathering. My plan is to be quiet and honor my need.
Reading all of your posts I felt such relief to know that there are other people who really understand how difficult it is to live with this disease...even while in remission....it is always there.
I hear your words of wisdom and can see how not taking care of ourselves.....myself...can turn come back and bite me in the butt....ha...no pun intended...well maybe a little. But I take your advise to heart and see how if I do not pay attention to my body I could really get into trouble.
Thank you all for sharing your stories.....I appreciate your strength and your ability to put yourself first and do what is right for you. I agree, if I do not take care of myself I will be useless to others. And you are absolutely right....if I were talking to someone else I would be insistent that they say know and set clear boundaries. I am amazed that I do not practice what I preach.
I will keep you all posted on what transpires...in the meantime...I wish you all well and truly thank you for taking the time to share your thoughts and experiences....I am glad that I finally stepped out and asked for help.....you have given me a lot and it is very comforting to not feel alone and talk with people who really understand what it is like to live with this disease.

Big Hugs to all......xoxo