Huge Bent Vent

General Support
1

Over the last three years, I have gone from a super successful (at least to me) healthcare person, to one who can barely get out a complete thought. My life, for the most part, feels just as scattered as my brain. Most of the time I feel so lost and lonely. Sure, my husband "supports" me, but it still feels like I am on this journey alone, and isolated in my own little bubble. You know, I really didn't think that losing my job would be such a big deal; hey, I am getting paid to stay home! That can't be too bad, right? Well, it sucks. A lot. There's this weird thought that I have: if I am too disabled to work, then I shouldn't do much. So, when I feel okay and do whatever it is that needs doing, I feel super guilty that I did it. Granted, I have less stamina than a May fly, but I still feel super guilty. At first, I was really active here at BF, but I gave most of it up. Partly because there was a time not too long ago that I was super sick, and also because of the guilt. When you think about the whole picture though: just because I have enough energy to watcha few websites and can respond whenever I feel like it, dosn't mean that I can work like I used too. i fear I would make a mistake that would end up hurting someone because of the memory issues I have. I really want to shake that guilt so that I can find some meaning in my life. I used to be amazing, and I miss that lady so much.

Most of the time I feel like roadkill. It's hard or impossible to do my ADLs, and much too humiliating to ask for help. So I went from being someone who never thought they could ever be sick enough to stop bathing, to the lady who goes 4 days between dips. I can't tell you what effect that has had on my marriage. This week, I had a cold with the usual symptoms: fever, congestion, body aches, and I learned that I am at a tipping point with pain and fatigue. I can barely manage what I've got, and adding more on top is excruciating. Since I've been bouncing through bios, I've been off at least as much a I've been on something. The off times are pretty bleak. I know there is something out there that will help me, but now i have greatly tempered expectations. I have simple hopes: bathing, a nice distraction or two, clearer thoughts, and not being so tired all the time.

I thought I had grieved this out long ago, but I am so lost and genuinely pissed off that I know I'm not done. I miss me and the person I was. I know I'm not entitled to something different or better, and that the universe doesn't owe me anything. This knowledge has yet to bring any clarity or relief.

Before you say it, yes, I have already emailed my counselor. I had a bit of a melt-down with the doc today and he strongly recommended it. I'm on it. I just needed to vent before I pop. I know when I first got sick, being here and talking, venting, sharing, and comiserating helped so much. I've been afraid to share , I think.

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So sorry, GrumpyCat! You are a very worthwhile person! You've given me tons of great advice and so much support and encouragement to countless others here.

Nurses have an extremely demanding job, physically as well as emotionally! I know I couldn't do it. We have two RN daughters, and the one who's employed in a small hospital where she has to work in every unit from the ER to Birthing has stressful experiences every time she works. Like you, she loves caring for people, but it wears her out. And she doesn't have PsA! IDK how you were able to do it as long as you did, because it is a strenuous job in all aspects--including the hours!

Hang in there, GrumpyCat! You know there will be better days ahead, because we all know there are small bumps and big bumps and then smooth roads here and there. You'll be cruising on the smooth road again! It's great you're talking to your counselor..... I hope your cold clears up fast, too!

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I have that guilt too, GrumpyCat. It really messes with my head. I work part time, and I feel not only guilty that I don’t work more, but also guilty that I do still manage to work and am not as bad as many others. I feel guilty that I can’t keep my house clean and tidy, and guilty when I DO manage housework, as if that proves I’m not as ill as I pretend to be. Whenever I do some think I enjoy, I feel guilty for enjoying myself, as if ill people can’t have fun, and if I do, then maybe that means I’m not really ill after all. I recently qualified for disability benefits, and whenever I do something positive or empowering for myself - whether it’s manage to walk 300m or book a holiday for the first time in 7 years (as I have just done), I feel guilty and worry that proves I’m a fake and not disabled after all. I feel guilty that I’m now ill enough to be treated, and guilty that the treatment isnt working, as if that’s my failure too. I have just had my 2nd depo steroid injection, and I simultaneously feel guilty for not being on as much pain as before, as if I don’t deserve effective treatment, and guilty that I still have some pain, as if I can’t even manage a good steroid response properly!



People tell me I still AM awesome - as people who know you will be telling you too - but I don’t believe them. I bet you don’t either!



I think the guilt, for me, developed when I was undiagnosed. That was a lot of years. I knew I was ill, I kept trying to get help, and I kept being told there was nothing wrong with me. I was made to feel like a hyperchondriac for so long that I partly came to believe it myself. Like you say, this knowledge has yet to bring any clarity or relief. It definitely is a grieving process - things are lost and probably some things are dead. They deserve to be mourned. But even that brings guilt, since of course I’m not dead - I’m much better off than so many people - and I should be more grateful. I think - I hope - it’s a process. Grief is, of course. You have to go through denial, anger, bargaining and depression before you get to acceptance, they say. I’m definitely not there yet! All we can do is keep on keeping on…

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Oops, I posted twice. Deleted the second version…

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Thank you both for your replies. I hate to be so down, but it's just where I am right now. Although, I did get my mohawk trimmed today and dyed purple! That was so much fun. :-) I have always wanted purple hair.

Flow- The guilt is awful. It just eats and eats at me. It makes me feel better that someone knows what I mean! It is really hard when I need to re-adjust my expectations, limitations, and how they impact my life. All of that triggers all of those grief feelings again, and I get so frustrated and angry. I have managed to learn that being angry at the universe for your lot doesn't give much satisfaction; unfortunately, I haven't figured out how to stop being ticked-off! :-) In the good news column, I was able to reach my e-therapy doc, and he has time to see me. He was really good at confronting destructive feelings and thoughts so that I could better understand why they were dysfucntional. I look forward to getting started with him again.

Grandma J- D'aw! thank you for your kind words. You know, I think that there are some occupations, that end up becoming an identity. Off hand, I would include fire fighters, EMS, police, and nurses. It seems to me that these are more than just jobs. When you're off work, you still identify as that person. Since I didn't work enough hours this last year, I was unable to renew my license. I struggle with the fact that I'm not a nurse anymore. It had become such a huge part of my identity and now it's just gone. I worked SO HARD to get my education, two degrees, academic and leadership awards, offers of advancement at work, etc.. I still can't come to grips with that yet.

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Yes, it’s awful and it’s not fair! I’m sorry for you GrumpyCat. I guess I understand that medical practitioners have to keep up their practice to keep their licences - that does protect patients from people whose skills are out of date - but it’s very, very hard if you’re simply too ill to work. I’m not surprised it’s taking some getting used to… Some way down the line, there may be other options for you that mean you can still use your training and expertise: a training role, maybe, or a research one, or advisory or consultancy one, maybe even a campaigning one… I know something like this is a massive blow to a person’s identity and confidence, but you really don’t stop being you, and your skills and experience don’t vanish - in fact, longer term, I’d say your professional experience is likely to be enriched by your personal experience as a patient. Here’s hoping you find your niche again, even if it is one you never expected. :slight_smile:



GrumpyCat said:

Thank you both for your replies. I hate to be so down, but it’s just where I am right now. Although, I did get my mohawk trimmed today and dyed purple! That was so much fun. :slight_smile: I have always wanted purple hair.

Flow- The guilt is awful. It just eats and eats at me. It makes me feel better that someone knows what I mean! It is really hard when I need to re-adjust my expectations, limitations, and how they impact my life. All of that triggers all of those grief feelings again, and I get so frustrated and angry. I have managed to learn that being angry at the universe for your lot doesn’t give much satisfaction; unfortunately, I haven’t figured out how to stop being ticked-off! :slight_smile: In the good news column, I was able to reach my e-therapy doc, and he has time to see me. He was really good at confronting destructive feelings and thoughts so that I could better understand why they were dysfucntional. I look forward to getting started with him again.

Grandma J- D’aw! thank you for your kind words. You know, I think that there are some occupations, that end up becoming an identity. Off hand, I would include fire fighters, EMS, police, and nurses. It seems to me that these are more than just jobs. When you’re off work, you still identify as that person. Since I didn’t work enough hours this last year, I was unable to renew my license. I struggle with the fact that I’m not a nurse anymore. It had become such a huge part of my identity and now it’s just gone. I worked SO HARD to get my education, two degrees, academic and leadership awards, offers of advancement at work, etc… I still can’t come to grips with that yet.

7

Dear Grumpy (and I do mean “dear” in the most fundamental sense of the word)

As usual, you have expressed what so many of us feel and think so much of the time. But, unlike the rest of us, you do it with such abandon and wit, and you “nail” it every time, as only GrumpyCat can. I find myself nodding and muttering “Yep, that’s our Grumpy”: generous with her thoughts, witty with her words and open with her emotions. If you only knew how much admiration people here have for you. I am but one.

Big hugs for you, my friend, and wishes for better days.

Seenie

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I feel your pain. I am still working 40 hrs a week as a RN case manager. Really had a horrible last 2 weeks. I ache all over, having trouble thinking clearly, and constant nausea from my methotrexate. My doc is sending in a pre auth to my insurance to approve Humira. I am dragging myself to work. I find that I have to get out and keep going or I get very depressed. I hope you feel better. My co-workers and family make me laugh and keep going.