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#1 Hank

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Posted 13 October 2012 - 05:06 PM

I have been on Xyrem for 3 months now. One month at 9g/night. The past few days have been like the clouds have finally begun parting.



Last week, I was pushing myself really hard. I wrote a post which I have revised- because the tone reflected how hard I was pushing. It has taken so much "pushing myself" to function for so long. As I am improving, I was still pushing as hard and it made me realize something- I can slow it down a bit.


I am easy going. But I have learned to push myself relentlessly to keep afloat. I can see how I throw people off. At first glance, I am an easy going guy. But I also drive myself extremely hard- relentlessly. I am mostly patient with others, but I am often so focused on pushing myself so hard, that others get caught in my wake. It is hard to explain that I am only that hard with me, not with others. Usually it is the other way around. People are often more demanding of others and easy on themselves.

I get in this gear- this is how I want it to be when I'm finished. I focus on the result- so intensely- that I miss others in my periphery. It is not that I don't care, people are not peripheral to me. I am so glad to ease up enough to see the Big Picture that has so much I could not always see. Narcolepsy is not the only thing hiding in plain sight.

Add Adderall to that mix and hold on tight.

I am finally awake enough that I can relax. My internal "tractor pull" - revving engine, while the wheels are sinking into the mud- just trying to get "far enough" each day before I sink- seems to be coming to an end. I would love to live my life without that.

I have been trying so hard to understand how I have lived with N and C for so long. I am starting to understand- and I am so glad to know, so I can live differently. Relaxing without crashing is good.Now that the tractor pull is over, I can see the rest of the fair.

#2 LauraL

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Posted 13 October 2012 - 05:59 PM

I have been trying so hard to understand how I have lived with N and C for so long. I am starting to understand- and I am so glad to know, so I can live differently. Relaxing without crashing is good.Now that the tractor pull is over, I can see the rest of the fair.


I can so relate to that! I could never handle the pushing myself really hard part for very long without crashing. It frustrated me to no end, as I saw people who could do that kind of pushing achieve the career and educational success I really wanted for myself. But I've learned to redefine success, and I'm happier for it. Turned out to be one of those blessing-in-disguise kind of things.

#3 Hank

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Posted 14 October 2012 - 12:12 PM

I can so relate to that! I could never handle the pushing myself really hard part for very long without crashing. It frustrated me to no end, as I saw people who could do that kind of pushing achieve the career and educational success I really wanted for myself. But I've learned to redefine success, and I'm happier for it. Turned out to be one of those blessing-in-disguise kind of things.


Thank you Laura- I appreciate that.

I have pushed so hard for so long- just to achieve average. When I told my past Neurologist (the one who misdiagnosed me) that I was still experiencing "exhaustion" during the day, he told me to increase the dose of the "wrong medication" at night- which was a sedating benzodiazapine during the daytime and creating a brutal physical dependance. Then he told me to get more exercise- that would help. So I exercised constantly- up to 4 hours, 6 days a week. I competed in Triathlons, but I could not stay awake when I sat at the computer. I could not figure out how I was fine during intense exercise, but could barely get my work done without mistakes- Now I understand. I was an undiagnosed Narcoleptic and treated with a sedative. I was trying so hard to stay afloat, get answers that nobody had, provide for my family, do well at work, be a good husband and father- and struggling under an enormous weight that I did not know.

Getting off that medication took 6 months of torture, and another 6 months of torture to recover. A year of my life was dedicated to un-doing the damage of a disinterested doctor who I naively believed.

I feel like my life was almost destroyed by this- but I survived it. And my family survived. I am finally getting well from 2 things at once. I was always told I was well- I just didn't try hard enough or I needed to relax, depending who was giving the advice. Trying harder accomplished things- relaxing made me sleep. What a cruel disaster. I am so thankful to finally have "proof" of how hard I was really trying. I can now relax, I make fewer mistakes, I can think again. I know what I need and I know to care for myself- and then I can care for others. I need time each day to reflect on what I need to do, balanced with time for enjoying my life. For too long, I was frantic on the inside trying to maintain my responsibilites, while trying desperately to appear relaxed- that kept criticism to a minimum, but almost ripped me apart. I could not have sustained that much longer.

So, with all the pieces of the puzzle in place, I know what I am dealing with. I know it will be few more months for my synapses to recover from the effects of Klonopin withdrawal. I need to keep myself structured which includes dedicated time throughout the day to relax. I am so thankful for this forum where I can say these things to friends I have never met.

#4 Megssosleepy

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Posted 15 October 2012 - 02:43 PM

Hank,

It seems like so many of us have shared your struggles. For me I can't seem to find that balance. You know I wrote my teacher about that exam, and his kind words made me so sad... Why am I so hard on myself... why do I push myself so hard to be perfect... I was upset with the B I got on the exam... even though it took everything in me not to fail it... I keep pushing and pushing and seem to get... well no where!

I have all these Ideas all scattered in my brain (scattered from the Adderall) I am not ADD but the stimulants make me that way... I cant focus on one thing or another... I have to do everything all at once! And yet I get no-where! Its so incredibly frustrating messing up at work or at school! My days seem to creep by forcing myself to stay awake to focus but then in the end its all such a blur!

I feel like I could explode or just fall asleep! I am tired of not feeling like myself... but just don't want to be tired. Oh I just want to feel better so bad! With that being said, knowing that you and others are starting to see the clouds parting gives me hope! Hope is all I can ask for... Hope that with the future I have planned I can accomplish what I am attempting to accomplish...

I feel like crap today :(

#5 SleepyDays

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Posted 15 October 2012 - 10:25 PM

Wow...good timing on this one.

I was diagnosed with N and started taking meds. The sleepiness lifted with the drugs and I was starting to get out there and do things rather than just go to work and come home. I started going back to the gym. I started working on my hobbies. I started seeing friends after work. I felt a light at the end of the tunnel.

Then, I found out the pain I'd been feeling on and off for four months was actually a perfed appendix with an abscess. I was put on hardcore antibiotics that gave me headaches, so I had to go off the N drugs. Everything started to spiral down into a place of extreme tiredness and abdominal pain. A month of antibiotics and finally i could go back on my N meds. But I'm still not feeling right....the abscess/appendicitis keeps flaring up. And I mean up to the "worst pain of my life". Then it settles down and flares up again.

Because I push myself too hard all the time...I have been working throughout all of this. Today I left for work at 7:30am and didn't get home until 8:30pm. I could feel the pain flaring up again on the way home. I got into the house and felt the waves of stabbing pain again. I couldn't stand up straight it hurt so bad.

What am I doing to myself? I'm walking around with an abscess in my abdomen, trying to get used to focusing on high doses of Ritalin and trying to be the best employee on earth.

Hank, you said it well.... you have to learn how to stop pushing yourself so hard. But that is what you've been doing for years. Me too. I can't get off the hamster wheel.

Coming home tonight and feeling the stabbing pain....i thought "I am an absolute idiot! I can't do this to myself anymore."

My interval appendectomy was supposed to be this week. Last week I got a call that my surgery was being delayed for another three weeks. I was so upset I had to sit down when i got the news.

Worried I'd have a C attack.

So what do I do to get me through to the surgery date? I start working really hard...pushing myself.....keeping myself super busy.

I need to stop this cycle. It hurts.

#6 Hank

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Posted 16 October 2012 - 07:50 AM

Wow...good timing on this one.

I was diagnosed with N and started taking meds. The sleepiness lifted with the drugs and I was starting to get out there and do things rather than just go to work and come home. I started going back to the gym. I started working on my hobbies. I started seeing friends after work. I felt a light at the end of the tunnel.

Then, I found out the pain I'd been feeling on and off for four months was actually a perfed appendix with an abscess. I was put on hardcore antibiotics that gave me headaches, so I had to go off the N drugs. Everything started to spiral down into a place of extreme tiredness and abdominal pain. A month of antibiotics and finally i could go back on my N meds. But I'm still not feeling right....the abscess/appendicitis keeps flaring up. And I mean up to the "worst pain of my life". Then it settles down and flares up again.

Because I push myself too hard all the time...I have been working throughout all of this. Today I left for work at 7:30am and didn't get home until 8:30pm. I could feel the pain flaring up again on the way home. I got into the house and felt the waves of stabbing pain again. I couldn't stand up straight it hurt so bad.

What am I doing to myself? I'm walking around with an abscess in my abdomen, trying to get used to focusing on high doses of Ritalin and trying to be the best employee on earth.

Hank, you said it well.... you have to learn how to stop pushing yourself so hard. But that is what you've been doing for years. Me too. I can't get off the hamster wheel.

Coming home tonight and feeling the stabbing pain....i thought "I am an absolute idiot! I can't do this to myself anymore."

My interval appendectomy was supposed to be this week. Last week I got a call that my surgery was being delayed for another three weeks. I was so upset I had to sit down when i got the news.

Worried I'd have a C attack.

So what do I do to get me through to the surgery date? I start working really hard...pushing myself.....keeping myself super busy.

I need to stop this cycle. It hurts.


That is so scary. I am glad you will have your appendix removed. Pain is no fun- have you told your surgeon how intense the pain is? Sometimes, they will think everything is fine unless you complain. I think we (PWN) as so accustomed to living with difficulty and not complaining that we lead others to believe "everything is fine". Most other would be denanding relief. I suggest you request an assessment of your condition or ask your surgeon to work you in sooner.

Sometimes, the best pushing is when we push for help. It seems uncommon that people in general would accept the level of pain you are experiencing. I hope you get relief from this soon.

#7 Megssosleepy

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Posted 16 October 2012 - 10:21 AM

I agree, I had terrible Gall Bladder attacks for years... I figure it was just back pain and I needed to deal with it. Until, I had them 3 nights in a row... wound up in the ER, where I was treated pretty badly by the receptionist (said it wasnt my gall bladder... prolly cramps) After nearly 6 hours in the ER they scheduled me for surgery 2 days later! Yeah just cramps...

You need to stress the importance of getting the date pushed up! You already have to live with N you don't need to be in the terrible pain! And can't something really terrible happen if your appendix burst?

Hank's right... as a PWN we try to just "deal with it" but why should we?

#8 SleepyDays

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Posted 17 October 2012 - 11:32 PM

It already perforated. That's why I have the abscess....my appendix burst, and my body walled off the infection.
I didn't have a lot of the classic appendicitis symptoms. My WBC count was fine, no fever, no vomiting, no lethargy (thanks to Ritalin) and no loss of appetite (i already didn't have one thanks to Ritalin). My only symptom was the worst pain of my life that would last two days and then go away. Repeat every month since February.
So by the time I found out what was going on....it had already perforated.

I live in Canada. I'm on a list of patients who need surgery. If someone else is in a worse place than me....they can bump me and my surgery gets moved to a later date.
The physician who's doing my surgery is known to be a great doc. So he's in high demand. Waiting for surgery is common here.

I push myself too hard because I'm a perfectionist. I have extremely high expectations of myself. I work to my 150%. I actually feel guilty that I've been going to work in pain and I'm not able to work to my normal standards. I actually worry that I will get fired for not performing to my normal standards. (which is 150% ridiculous....but there it is....)
I really need to transform my work energy expenditure to only 75% of what I've got and give the rest of the energy to myself. I just don't know how to do that. I get anxious when i feel I'm not working to my max.

There are so many layers to having N. I feel like I'm just discovering all those layers. And a huge one is that i need to learn how to relax. The drugs don't help. I feel wired all the time. And it takes so much energy to focus while on the drugs. So i feel like I'm treading water a lot of the time.

How do you manage to relax when you have busy lives? How do you learn not to feel guilty for taking care of yourself? How do you learn to see beauty in the imperfections?
How can i learn to push myself towards a life that includes rest and taking care of myself? I'm so used to struggling to get through a sleepy day. But this is struggling to get through a wired day.

#9 Hank

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Posted 18 October 2012 - 08:31 AM

It already perforated. That's why I have the abscess....my appendix burst, and my body walled off the infection.
I didn't have a lot of the classic appendicitis symptoms. My WBC count was fine, no fever, no vomiting, no lethargy (thanks to Ritalin) and no loss of appetite (i already didn't have one thanks to Ritalin). My only symptom was the worst pain of my life that would last two days and then go away. Repeat every month since February.
So by the time I found out what was going on....it had already perforated.

I live in Canada. I'm on a list of patients who need surgery. If someone else is in a worse place than me....they can bump me and my surgery gets moved to a later date.
The physician who's doing my surgery is known to be a great doc. So he's in high demand. Waiting for surgery is common here.

I push myself too hard because I'm a perfectionist. I have extremely high expectations of myself. I work to my 150%. I actually feel guilty that I've been going to work in pain and I'm not able to work to my normal standards. I actually worry that I will get fired for not performing to my normal standards. (which is 150% ridiculous....but there it is....)
I really need to transform my work energy expenditure to only 75% of what I've got and give the rest of the energy to myself. I just don't know how to do that. I get anxious when i feel I'm not working to my max.

There are so many layers to having N. I feel like I'm just discovering all those layers. And a huge one is that i need to learn how to relax. The drugs don't help. I feel wired all the time. And it takes so much energy to focus while on the drugs. So i feel like I'm treading water a lot of the time.

How do you manage to relax when you have busy lives? How do you learn not to feel guilty for taking care of yourself? How do you learn to see beauty in the imperfections?
How can i learn to push myself towards a life that includes rest and taking care of myself? I'm so used to struggling to get through a sleepy day. But this is struggling to get through a wired day.


We sound a lot alike. I had been misdiagnosed and treated with a long acting sedative to help me sleep at night. Unfortunately that medication caused an extreme physical dependance ( but not an addiction, thankfully) and I am still recovering from that mess). When the !#?& hit the fan, I was on medical leave for almost three months- I really needed six months. But I was still pushing myself. It was like being in a tug-of-war and the rope broke. I was tugging so hard, I just went tumbling backward.

You will find a way- just try to find it before your rope breaks. You sound like you are beginning to fray. Is there any way for you to take some time off for sick leave until your surgery? That is a medical reason people will understand without getting into the Narcolepsy discussion. Our bodies and minds were not designed to be so strained for so long. Something has to give. And few people could manage either pain or exhaustion, and you are dealing with both. It sounds like too much. Sometimes the best way to stop the hamster wheel is to just step off.

I am only just realizing how hard I have pushed myself. I have promised I will not do that again. I am a runner, and I like analogies. I can sprint or I can run a marathon. But nobody can sprint in a marathon. A marathon requires a sustainable pace. And 150% is not a sustainable pace.

A painful appendix is a solid reason for medical leave. I would suggest seeing this as an opportunity for stepping off. And, if you can, your body will be better rested for your surgery. And a rested body will recover better.

I hope you get some relief. You certainly deserve it.

#10 Megssosleepy

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Posted 18 October 2012 - 10:38 AM

It already perforated. That's why I have the abscess....my appendix burst, and my body walled off the infection.
I didn't have a lot of the classic appendicitis symptoms. My WBC count was fine, no fever, no vomiting, no lethargy (thanks to Ritalin) and no loss of appetite (i already didn't have one thanks to Ritalin). My only symptom was the worst pain of my life that would last two days and then go away. Repeat every month since February.
So by the time I found out what was going on....it had already perforated.

I live in Canada. I'm on a list of patients who need surgery. If someone else is in a worse place than me....they can bump me and my surgery gets moved to a later date.
The physician who's doing my surgery is known to be a great doc. So he's in high demand. Waiting for surgery is common here.

I push myself too hard because I'm a perfectionist. I have extremely high expectations of myself. I work to my 150%. I actually feel guilty that I've been going to work in pain and I'm not able to work to my normal standards. I actually worry that I will get fired for not performing to my normal standards. (which is 150% ridiculous....but there it is....)
I really need to transform my work energy expenditure to only 75% of what I've got and give the rest of the energy to myself. I just don't know how to do that. I get anxious when i feel I'm not working to my max.

There are so many layers to having N. I feel like I'm just discovering all those layers. And a huge one is that i need to learn how to relax. The drugs don't help. I feel wired all the time. And it takes so much energy to focus while on the drugs. So i feel like I'm treading water a lot of the time.

How do you manage to relax when you have busy lives? How do you learn not to feel guilty for taking care of yourself? How do you learn to see beauty in the imperfections?
How can i learn to push myself towards a life that includes rest and taking care of myself? I'm so used to struggling to get through a sleepy day. But this is struggling to get through a wired day.


You are singing my song... The Gall-bladder thing went on and on till I just couldn't take it! I hope your surgery doesn't get pushed back any further!! I used to try to run at 150% just to keep up with people without N that are at 100%. I wanted to do my best at work, make money, go out, shop, party, get perfect grades, and have as many "friends" as possible.

If I have learned anything from this site and from my N is that I need to start forgiving myself for not being the person I pictured in my head... I let myself nap as much as I want on weekends instead of cramming for class... I find with naps I focus more on my studies when I am awake. Getting my puppy has given me a wonderful excuse (reason) to stay home instead of pushing/forcing myself to go to out with "friends" My close friends realize that I just can't keep up,and still love and support me. The love I receive from my pup makes up for all the "un-friends" that are upset I no longer go out and stay up late (plus I save a lot of money). Right now I live for me and Jasper (mr puppy face) and I am okay with that. I use my energy on things that matter!

I also find getting through a sleepy day is easier, the only reason I get through the wired days is the fact that I come on the NN throughout the day... thats how I take a step back, relax, and confront how I am feeling... the more uppity I am the more I am on here... I do feel guilty that I am not working as hard as before... but when I step back I am more able to concentrate on the task at hand. I still get everything done that needs to be done... maybe not with color coated posted notes, over organization, perfect handwriting, ect... but I do my job and I do it well! <-- this is me feeling a lil guilty and trying to convince myself that I am still on top of my task... everything is getting done... still plenty of hours left in the day! :rolleyes:

Good luck, and take care of yourself... If can I would suggest trying to take a short medical leave, you wont heal as fast as you could if you are stressed and worn out.

#11 SleepyDays

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Posted 31 October 2012 - 09:06 PM

Hi again,
Sorry about the late reply.
I wanted to thank you for your posts. I read them and really took them to heart.

Megs...thanks for saying that getting through the sleepy days is easier than the wired days. I thought about that. And decided to reduce my Concerta dose a bit.
It's helped a lot. My edginess settled down and I could think more clearly. I stopped pushing myself so hard.

Hank...thanks for saying that most people wouldn't accept the amount of pain I've been having. I thought about that. Every time i started beating myself up for not working to my 150% effort, i thought..."Most people wouldn't even be at work with all this pain....it's okay to work only to my 75% effort and not stay late." and I've been getting home at decent hours, taking breaks at work, and resting in the evenings.

I've been feeling a lot better. More rested, less testy and less stressed. I even got motivated enough to hunt down a new sleep doc who specializes in N so I can get help from someone experienced with treating N patients.

My surgery is coming up next week. I'll let you know how it goes. The surgeon warned that it may be a complex surgery because I've had appendicitis on and off since February.
He's worried I may need a bowel resection. And there's a risk I may need my right ovary removed because the abscess is sitting beside it. I won't really know until I wake up from the surgery. I'm not going to push myself to get back to work too quickly. I'm taking the time I need to heal properly.

Thanks again.
N can be such a lonely diagnosis. It helps so much to be heard by people who understand on a deep level.

#12 Megssosleepy

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Posted 01 November 2012 - 11:39 AM

Hi again,
Sorry about the late reply.
I wanted to thank you for your posts. I read them and really took them to heart.

Megs...thanks for saying that getting through the sleepy days is easier than the wired days. I thought about that. And decided to reduce my Concerta dose a bit.
It's helped a lot. My edginess settled down and I could think more clearly. I stopped pushing myself so hard.

Hank...thanks for saying that most people wouldn't accept the amount of pain I've been having. I thought about that. Every time i started beating myself up for not working to my 150% effort, i thought..."Most people wouldn't even be at work with all this pain....it's okay to work only to my 75% effort and not stay late." and I've been getting home at decent hours, taking breaks at work, and resting in the evenings.

I've been feeling a lot better. More rested, less testy and less stressed. I even got motivated enough to hunt down a new sleep doc who specializes in N so I can get help from someone experienced with treating N patients.

My surgery is coming up next week. I'll let you know how it goes. The surgeon warned that it may be a complex surgery because I've had appendicitis on and off since February.
He's worried I may need a bowel resection. And there's a risk I may need my right ovary removed because the abscess is sitting beside it. I won't really know until I wake up from the surgery. I'm not going to push myself to get back to work too quickly. I'm taking the time I need to heal properly.

Thanks again.
N can be such a lonely diagnosis. It helps so much to be heard by people who understand on a deep level.


Oh I am so happy that you are starting to see the light at the end of the tunnel! Please stick to you word about taking it easy after surgery! Let you body heal before you push forward! I am so happy you are finally getting that thing removed!! yay for no more pain!! I am also happy to hear you will have a new sleep doc! I will be shopping for a new one in the near future as well! Make sure he/she is caring and compassionate!!

Good luck with everything! Get better soon and please do keep us posted!!

#13 SleepyDays

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Posted 09 November 2012 - 09:16 AM

Hi All,

I had my surgery on Wednesday. Good news....I only had to have the appendix removed. Even the surgeon was pleasantly surprised with how well it all turned out. Phew!
It's been a bit of a rough go the last couple days. I had it done laparoscopically, so they fill your stomach up with carbon dioxide. Yikes....you never know when the "air" is coming out.
Lots of sudden bouts of vomiting. I also fainted three times the first two days. It wasn't cataplexy. I think my blood sugars were super low. But all in all, doing well. And I'm definitely on the mend.

Ironically, the day before the surgery, I got a real kick in the pants at work. Turns out my co-worker is getting a six month extension to finish the project we've been working on, and I'm not. This was a real blow, because I've been the one working so hard on this project. But I only work on it part-time, so it was given to the full-time person, rather than split between the two of us. I know it isn't personal, because my boss thinks highly of me and has been encouraging me to apply to positions and recommending me for positions that he feels are more challenging and will provide more career growth. But I haven't applied because I need to get my health sorted out first before I start moving around.
It has been hard to swallow that the person who has not worked as hard as I have is getting the extension. I know there is a lesson in here somewhere, but right now I feel pretty down. It's going to be hard returning to work and finishing up the tail end of my part of the project. I feel like a fool for working so hard.

#14 Megssosleepy

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Posted 09 November 2012 - 09:44 AM

Hi All,

I had my surgery on Wednesday. Good news....I only had to have the appendix removed. Even the surgeon was pleasantly surprised with how well it all turned out. Phew!
It's been a bit of a rough go the last couple days. I had it done laparoscopically, so they fill your stomach up with carbon dioxide. Yikes....you never know when the "air" is coming out.
Lots of sudden bouts of vomiting. I also fainted three times the first two days. It wasn't cataplexy. I think my blood sugars were super low. But all in all, doing well. And I'm definitely on the mend.

Ironically, the day before the surgery, I got a real kick in the pants at work. Turns out my co-worker is getting a six month extension to finish the project we've been working on, and I'm not. This was a real blow, because I've been the one working so hard on this project. But I only work on it part-time, so it was given to the full-time person, rather than split between the two of us. I know it isn't personal, because my boss thinks highly of me and has been encouraging me to apply to positions and recommending me for positions that he feels are more challenging and will provide more career growth. But I haven't applied because I need to get my health sorted out first before I start moving around.
It has been hard to swallow that the person who has not worked as hard as I have is getting the extension. I know there is a lesson in here somewhere, but right now I feel pretty down. It's going to be hard returning to work and finishing up the tail end of my part of the project. I feel like a fool for working so hard.



That is wonderful news, I am so glad everything went better then planned. OH YES, I remember the air, so very painful and then throwing up! Crap that hurts and then crying because it hurts, hurts even more lol! Now that you can get past this medical hurtle you can concentrate on your N.

Don't feel like a fool, you worked hard because you are a good person who wants to do the best you can. You said yourself that your boss wouldn't have done this to hurt you. Don't let this set you back and don't get down on yourself about it. I think your boss just knows you well enough that he has seen that you can finish on time.