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Posted 4/14/2018 3:16 PM (GMT 0)
Hi all,
I hope you are well.
Have any of you dealt with this setting in after you are better and sort of back on your own. I went through a lot of changes and stress recently with finishing my graduate degree and dealing with my personal life. I thought things would be good now that I had an actual break for a change and I was really excited and looking forward to a few weeks/months without major deadlines hanging over my head or trying to play catchup and disaster managing my life. My only major issue health wise is that my joints bother me but they improved gradually after taking Remicade. Apparently my Complement numbers are still off so my Rheumy thinks I had or have a flare of something they can't identify yet. I'm used to this kind of situation though and my mind set is usually to use it as a challenge and find a way though and adapt. But something has changed and I suddenly having bouts where I don't feel that way anymore. I took on a small very part time job with room to grow that I thought would make me feel better. Financially it isn't good but and it will keep me active which helps the joints and lets me work on some other things that I've been putting off until I had time. But instead anxiety kicked in for some reason and I have had like waves of panic attacks that eventually snowball into depressing thoughts. Its ruining the decent times that I've been fighting to get to for years and is making me feel so guilty and mad at myself for not being able to feel like myself. I have reached out to my pcp about this since it got very troubling the other day.
Thanks all for listening smile
Posted 4/14/2018 3:53 PM (GMT 0)
Lab, it sounds like you are having what I call an adrenaline crash. I say this because of three things, you were finishing up your schooling, dealing with your personal life & handling health issues on top of it all. That is a lot going on at the same time. Now you have finished with school & things have slowed down, it is like a balloon with a slow leak losing air. You were in such high gear for so long, it's almost like what do I do now. Congrats on finishing school, give yourself a pat on the back.

If you do not plan to seek full time employment any time soon you need to find ways to keep your mind occupied. If you have some hobbies that you did not have time for previously now would be the time to revisit them. The projects you put off, make a list of them & work on ticking them off of the list one at a time. When I became too sick to work I was a complete mess not only physically but mentally. Eventually, I got some professional help. The depression & anxiety got way out of hand with me. I had no routine or schedule. Our lives are lived around routines. Perhaps it is time to establish a new routine for yourself. I had a fantastic psychologist that was great. With her suggestions things just quit overwhelming me.

Keep us posted.
Posted 4/15/2018 4:13 AM (GMT 0)
Lab,

What you are going through happens frequently. You were used to going 100 miles a minute and now you don't have to. It takes a while to adjust....and frequently once we meet our goals the planned aftermath isn't quiet at rosy as we thought and hoped it would be. That throws us off and if we are not careful it can cause depression.

When I finished I thought I would be very happy, have more time and energy...and instead things were dull.. slow...and I wondered "Is this it?". I was so depressed.... and I was still working at least 60 hours a week. I sat down and made a pro and con list of my life and started focusing on things that I could improve. It helped. (I think its because you or driven people make goals or lists in our heads. If you have something to concentrate on you just feel more productive.) I also made myself just sit down in a chair...no tv, radio or phone, and have a quiet time to reenter myself. I had to start at 3 minutes and work my way up. According to my psychiatrist sister..you have to retrain your mind and body to redirect and slow down. (This was torture for me and I wanted to lie and say I did it but...I needed to relearn who I was and where I now wanted to go)

It does get easier with time and practice. Perhaps you could speak to a counselor? Or your religious leader? I was fortunate to have a concerned big sister who knew her stuff....otherwise I would still be scrambling.

Good luck,

Clo
Posted 4/15/2018 9:18 AM (GMT 0)
Thank you Clo and Susie,
And thank you in advance for all who take the time to read this. Right now I’m trying to find a doctor that will take me with my insurance.

I’m having a very very tough night. i feel both like I totally lost my mind and on the flip side that I’ve just made this all up to get attention because it’s easier to take on illness rather than deal with life and can’t get that thought out of my head. It just keeps making me feel worse. how can I even admit that to my doctor when they’ve spent so much time trying to help me. I was better earlier but then I started to question whether I made it all up and that brought it all back and now I’ve just spent the entire night dealing with the problem that I’ve brought it back on myself. I felt the same way Clo, I couldn’t wait to be done, I made plans and everything. I had a book with every scheduled out so it wouldn’t be too much to handle, all color coordinated. I thought keeping myself engaged in a few things would help but I’ve mostly been working from home the last few months. i was really excited. I was stressed out with the thesis for years. Major stressful events Like an ill parent or my own health problems would conveniently crop up right when I was the most stressed with life and school and suddenly it would be an easy excuse to put off finishing my work. I few times I even wished something would go mildly wrong so I wouldn’t have to deal with it. Everything that did go wrong was terrible, horrendous and I’d never want to go through any of that again, and yet I feel guilt For the feelings I had beforehand. But I was so happy about life afterwards. Things seemed like I finally got it, life is so fleeting never take it for granted type of thing. I focused on just getting from one doctors appointment to the next making small goals to fill the in between. I looked on the bright side of everything. I made accomplishments personally and academically. There kept being blips along the way but I think I just used that to keep my mind on my health related things. I spent a lot of time on here and reading about a lot of other medical things and feel guilt that I was obsessing over it too much and probably drowned out a lot of other life issues. I also read and heard a lot about depression and anxiety. both things scare me and I have a fear of having a debilitating mental illness after seeing a friend become completely housebound with it and can no longer function. On opposite side of this I fear that some twisted part of my mind hoped I would get it and send me back into having to deal with health issues and take the weight of the future off my mind or that I was just bored with it all. I don’t know. It’s all so messed up.
Posted 4/15/2018 10:41 AM (GMT 0)
Lab,

As much as you feel that, "it's all so messed up", everything you're feeling mentally/emotionally is very normal. You've been through a sort of perfect storm of adversity, and now that you can get reflective, anxiety is getting a chance to take a firm hold. It's happened to almost everyone at one time or another in our lives.

You can certainly try to talk to your Doctor about it, and he may prescribe a mild anti-anxiety med like Xanax. Before you resort to that, be assured that the good thing about acute anxiety is, it sort of comes and goes. You can try taking a more calculated approach. Take time everyday to sort through a few things that you're facing. Use reason, think positive, meditate. Not sure of your convictions but prayer is a very powerful tool.

If you're still finding yourself overwhelmed, then couselling before meds might be good as well. Even one or two sessions could help immensely. Hope your oulook improves soon. Keep us posted.
Posted 4/15/2018 11:13 AM (GMT 0)
I'm only surprised that more people don't lose it.

It really is like the PTSD that returning soldiers get.

Definitely seek out a counselor, and also a pain management team. They will help you to deal with all of this. There are wonderful techniques to learn, that relax the mind.
The loss of the body (it is complex) really affects us. And it is a kind of grieving that we go through.

It really is hard (impossible) without getting help, and you are brave to admit that it is overwhelming.

Wish you all the best, take it slow and gentle.
Posted 4/15/2018 12:47 PM (GMT 0)
sounds like you're experiencing pretty normal stuff - just try to give things a little time and don't back yourself into a corner with unrealistic expectations -

are you getting enough exercise and fresh air - if those two aren't part of my regular routine, i can't help but be a grumpy gus -

hang in there smile
Posted 4/16/2018 2:36 PM (GMT 0)
Thank you all! This helped quite a bit. This is such a strange horrible experience that I’d like to move past quickly. I don’t get why I’m afraid of my own thoughts especially when most if not all are normal thoughts but I guess that’s all part of dealing with anxiety? My doctor gave me a low dose of buspar to try along with Xanax for emergencies. So far I road out the attacks and didn’t take the xanax in hopes that I would lose some of the fear of it. I don’t know if that’s working but I have felt a bit better.
Yes, I need to get outside and get exercise! It’s been too cold and nasty here to do much of anything outside. I tried getting some gardening going but it’s really too early for that. Between the cold weather and my joints, I had to quit the walls/jogs I was going on because it made my knees worse. When they started to get a bit better, that’s when I chose the new job but it has no schedule and is very sporadic. I thought the activity that would go along with it would help distract me from any lingering pain and moving around usually helps reduce some of the pain in general but the hours and frequency are not enough.
As for goals and lists, yes! They help immensely! I wrote them out before the end of the year in preparation so that I wouldn’t have this feeling chaos. I do weekly lists and goals and checking off tasks is very rewarding except when this got bad, no matter how much I checked off I still felt terrible.
Thank you again! Your comments make a huge difference! I will get through this and feel pretty great at the moment.
Posted 4/17/2018 12:39 AM (GMT 0)
Yes I struggled with this after my first surgery. I think I really suffered from some kind of PTSD after so many years of illness, hospitalisations, and other traumas. I would go into screaming fits, which was a new thing for me. Obviously my parents couldn't cope and eventually my relationship with them broke down. Managed to repair it for a couple of years, but it's broken down again :-/ (For quite different reasons this time, though.)

One thing which I do remember vividly is feeling so disappointed that I didn't feel better. Loads of people had reported having a colectomy and waking up from the operation feeling like a brand new person. It was never like that for me. I didn't have a new lease of life, I wasn't climbing up mountains, etc. Physically, I was wrecked for many months afterwards, although I do put that partly down to two very difficult drug withdrawals (oxycodone - nightmare) and prednisolone.
Posted 4/17/2018 3:15 PM (GMT 0)
It’s good to hear from you NCOT. Yes, it’s really hard when family complicates the situation. It’s definitely a compounding factor here too. I am lucky to have my mother though. Unfortunately she worries a lot too not like what I’m going through but it can trigger my episodes.
Posted 4/17/2018 4:00 PM (GMT 0)
Thanks Lab.

The family problems weren't anything remotely new, but I had swept them under a carpet for a couple of years before my surgery: whatever energy I had was spent on dealing with the Crohn's. I was unpleasantly surprised when they resurfaced after surgery. It complicated things massively and there was seemingly no dealing with it, apart from moving out of home. There's where I did get lucky for once; I had a superb housing officer who went out of his way to help. And with his help, I eventually got a one bedroom flat - a nice one too.

It's good that you have your mother, but try not to let her worries bring you down as well. Easier said than done I know, but still... It's worth trying to do.

Hope you feel better soon. But don't feel guilty if you don't; these things can take their time.
Posted 4/17/2018 9:51 PM (GMT 0)
I tried calling quite a few doctors today but they all had answering machines or were not taking new patients

Post Edited (Labradorite) : 4/17/2018 10:57:36 PM (GMT-6)

Posted 4/18/2018 5:05 AM (GMT 0)
Never letting myself type during one of my panicked episodes again
Posted 4/18/2018 11:42 AM (GMT 0)
Hey, you can't have typed anything more embarrassing than some of the things I've typed >_>

Answering machines are mad annoying: I hate the things. Hopefully you can get in touch with somebody today. Hope you feel better today as well - panic is one of the most horrible emotions there is.
Posted 4/18/2018 2:06 PM (GMT 0)
@NCOT haha, I don’t know, I think everything you’ve said was real. I basically got myself to believe that I was enjoying being sick and causing this myself and found ways to use my coping mechanisms against myself. I used to be so comfortable with my thoughts. It’s so weird that now like 90% of them freak me out to the point of panic and I wake up in a panic. I think I might be too “mindful” -_-

It’s really shocking to see how mental health is handled. No one answers the phone or returns calls! I’ve never had that issue with other specialists. The only one that did return it was one that is no longer accepting new patients. He was nice enough to at least try to give me some direction with finding help.
Posted 4/18/2018 2:24 PM (GMT 0)
If you don't get any return calls in the next day or so, perhaps you can enlist help from your dr.. These people you are calling it sounds like they are a one person office, meaning they have zero office staff, not so sure I would care for that situation. I cannot imagine not having at least a receptionist.

Hopefully someone will call you soon.
Posted 4/18/2018 3:55 PM (GMT 0)
That’s what it looks like so far, though even the one clinic at the large teaching hospital was an answering machine that said something to the effect of we’ll get back to you at some point. Only one I got through to was the one that is not covered by insurance and would be several hundred dollars for the first visit alone.
Posted 4/21/2018 1:58 AM (GMT 0)
Hey Lab.

I know what you mean about being too mindful of one's thoughts, which is why I find mindfulness pretty useless for me: the very last thing on earth I need most of the time is more time alone with my own thoughts.

I highly doubt you enjoyed being sick, but it was something you were familiar with - better the devil you know than the one you don't, etc. I know I felt pretty bereft after my first surgery and missed the endless hospital visits in a weird way. I didn't have a job to return to and there was a hole in my life that I didn't know how to fill. I'd had a similar experience in the past, when a forum that I used to spend 12 hours a day on disappeared. I'd been so addicted to the fake drama of the forum that real life seemed empty and boring by comparison.

Long story short, it takes a long time (at least it does if you're me), but eventually you find new stuff to replace the old stuff with. You can perhaps hurry it along by finding volunteer jobs to do, groups to join, etc. - I never really tried that in either case, so I'm not sure, but it makes sense that it would help.

100% agreed about mental health. Even in this day and age, few medical people seem to really understand or sympathise with it.
Posted 4/23/2018 7:54 AM (GMT 0)
Hey NCOT, How are you getting by?

Yeah I definitely did not enjoy being sick! It's amazing how distorted everything becomes during these attacks. I distorted all of the ways I cope with illness and life in general, which is to find something good or make something good out of whatever the experience is no matter how bad it is. All of my coping skills just kind of took a few weeks off apparently. Things have slowly improved I still have bad times each day but I'm able to sort them through a lot better and have a lot more clarity. I have come to realize that though my mind was fixating on the medical aspects of my life the real issue is finances, finding a job, my mother's ill health and a host of other family/life issues that are complicating everything. When not in a panic I am perfectly happy to not see a doctor for a very long time. I have really wanted to focus on getting other aspects of my life sorted out for a change. I think in my panic, my mind kept going back to that the since those are the days I'm less likely to be focused on all of these other issues I'm facing and made me feel guilt for feeling good on those days.

In response to what you said about how you felt after surgery, Yes, I have felt this in the past and have had some friends with health issues tell me they experienced this. It never really bothered me before. it was just part of the transition back to normal life but for some reason my mind ceased it from the past and fixated on it, causing me a ton of guilt and panic.

I've kept myself busy by working on cleaning that had been neglected during thesis writing time, getting my container garden ready and a few other small projects.

So far finding a specialist to speak to has been an up hill battle. No one returns calls or emails except the few that are to say they have no openings. I knew it was difficult butI had no idea that it was this hard for people to find mental health help. I feel terrible for those that don't have the support that I've been lucky enough to have between this forum, friends and my mother. Tomorrow is a new day and I'll try again.
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