Sorry, this is kinda long...
So, my main idea I had when I started this blog was I didn't want to talk about my illness (epstein-barr virus). I wanted to focus on other things, mostly because this illness racked me with constant worries (for the longest time the doctors couldn't figure out what I had, I was scared I had some disease that was going to kill me!) and also crazy ass pain (the pain in my head was sickeningly bad, it felt like little monsters were slowly eating away at my brain!)... well, this illness was all I could think about, mostly because the pain made it so hard to forget how sick and ill I was. I just remember googling this illness, or googling my symptoms, just praying I could find a magic cure or something. Haha, boy was I wrong, I ended up dying of stress with the shit I read: I'd think to myself, holy shit, I have that crazy ass illness, or I'd start thinking I had cancer, or a brain tumor, or a hundred other illnesses... I'd start sweating, and I mean really panicking, holy shit, holy shit, and I'd start pacing back and forth, I became convinced I was going to die (relatively soon that is), or I'd start worrying that my illness would morph into another illness or trigger something else (yes, it can actually, I just don't think about that anymore, I have no control over that), plain and simple I just thought I'd never be healthy again, or productive or anything. The stress certainly didn't help my symptoms, but I guess that's where acceptance comes in, and I just came to understand that things are the way they are, I came to the daunting realization that my death is a certainty, nothing is promised in life (hell, I just learned to be thankful to be alive, even if I was in pain and couldn't do anything, lots of people have died young, or suffered tragedies, I was lucky, I was still alive!), but I realized the only way I could get through this was to do my best, try and stay as mentally strong as I could, no matter the pain or whatever the damn circumstances. I think that's why I also watched a lot of sports, there was an element of never quitting, of really fighting, tooth and nail, that was something I really respected in great athletes that I tried to adopt in my own mentality. I hope I'm not coming off as dramatic or whatever, I'm just trying to explain how I felt, how I tried to make it through the most difficult days... The only person who could help me at the most terrible moments (not to discount all the support I've gotten from family or friends), well of course it was only myself. Only through faith and hope could I keep strong, and not fall apart and want to kill myself (trust me, this was never an option!) or just bash my head in the wall, or just fall into the deepest darkest depression over my physical pain and circumstances.
Blogging, even when in pain, really has helped me focus my mind on other things, even through some terrible I feel like crying this pain is so bad moments. Well, I won't lie, when the headaches were so bad and constant, and didn't let me sleep for days on end, I did cry!!! That was the only relief I could get!
I know it's not the best thing to be on the computer so much, but the vastness of the internet has really given me a new kind of liberty, which has been so refreshing because my illness has smothered my physical liberties so drastically.
I have talked about this illness from time to time, but lately it's been on a more positive note. Things really are getting better for me, my symptoms, ie headaches, painful lymph nodes, fatigue, are all diminishing, my mind feels so much more alive, I feel like a person again. I still have ups and downs, and I'm still tired a lot, but the best part is the headaches are so much less, so so so much less, I feel so thankful. Finally being spared of constant pain in my freakin' head, sometimes I don't know how I made it through... I thought I'd never make it through this nightmare, the lowest point was when I had to go to the ER because I just couldn't sleep, the headaches were like fire in the back of my head, they were constant and at such a high pain level, my body couldn't relax, these severe headaches could last for weeks, at the ER they gave me caffeine and morphine... I hate the thought of taking drugs. The mere thought of having to constantly take pain pills to survive through this thing, that scared the hell out of me. I tried to suffer through the most wicked pain, I never asked the doctor for pain pills, I just didn't want to cross that line (maybe that wasn't the right decision, I really don't know). I probably could have saved myself a lot of pain and stress, but I knew it was a risk, I didn't want to start taking things I'd become dependent on. That whole period, where I seriously thought I needed pain pills just to get through the days because of wicked headaches, that was the lowest low, the worst time in my life, everything felt so out of control, the pain in my head was out of control, I couldn't work a job (well, I still can't but I know I'm getting there), I couldn't even begin to imagine doing a little drawing, I just felt so damn screwed, like... It's hard not being able to work, not being able to validate yourself through daily activities, I was stuck, and I didn't even feel well enough to think, or imagine, or do anything. I'd spent my whole life working, learning, doing things, validating myself through activities... I guess not having that for a year forces you to learn about yourself, who you are, what you truly believe in...
Not sure I have much of a point with this post, I just feel that for myself it's a good time to express my thoughts, since my symptoms are so much less, I have a little bit more perspective on this whole thing... and I feel like it's important to give you guys a bit more information on who I am, what I'm going through...
But know this, I'm thankful for everything. I really am. I am lucky, I'm surrounded by wonderful people, somehow I haven't been overtaken by pessimism, anger, bitterness, on the contrary, I feel more happy, more joyous than I ever have in my whole life. Wait a sec, sorry, that's a little too glossed over... I'm still scared (less so though), and do still harbor some anger towards the people who doubted me, implied I was lazy, discounted my pain... Let's just say there was a reason I wanted to name our dog Rambo! But I'm not that angry, I try not to waste too much of my time on that emotion, it's worse than a cancer if you let it consume you.
This is a bit similar to a previous post I did, I know I repeat myself sometimes...
Anyways, I hope this post doesn't come across as condescending, or look at how great I am, or give me your pity, or whatever... I just feel it's good to open up sometimes... I've had a lot of moments where I was weak and scared, and I guess I'm just happy I'm making it through this thing, I guess I'm sort of incredulous that things are getting better.
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22 comments:
You are right about anger. Even when it is justified if you let it take over it can be like a cancer. Even so, it is a natural emotion and we all experience it from time to time.
I'm so glad you are feeling better. I know about the pain in your head. I used to have migraines in my twenties and early thirties. They are like a seizure. Not really a headache. Just awful blinding pain. I'm still scared I'll get one but luckily haven't in over 20 years! You are lucky to have a good support group. You are such a cheery and fun guy. I'm really happy that you are on your way back.
This was a really good post, I've only been reading your blog for a short time so I was fairly in the dark about what you were going through, exactly but I had a feeling it was something pretty damn serious! So now I understand a lot more about you and your personality. And I have a lot of respect for you.
I think that you made the right decision about the pain pills, who knows what would have happened if you decided to start taking them right from the beginning...you could have started getting better, but developed a dependency on the pills and it would have been just like going back to square one.
Very good post. You are a very strong person. Here is to your continued wellness and recovery.
That thing about not taking pain medication is tricky. I hear what you're saying about not wanting to get addicted, but for instance, my husband had kidney stones (I know it's not nearly as bad.) We found out that a hot bath would make the pain disappear. It dilates the kidney and the stone stops scratching the inner walls. But until we knew this he suffered so badly he couldn't eat, couldn't drink, couldn't hold anything in his stomach, couldn't sleep... Once he had to stay overnight in ER because he was dehydrated. The problem wasn't the kidney stone in itself. But the pain it caused created new problems that were much more serious.
Glorious: Wow, that sounds so intense with the headaches you had! Glad to hear you don't suffer from them as much any more. But that fear you have, I feel that, there's nothing as scary as not knowing when or why those things come, and especially when they are so bad, it's very scary.
Silverneurotic: Thank you! I goof off so much in my blog, but I thought it would be good if I was honest and shared a bit of myself, just to open myself up so people could understand who I am or just take a peek into my mind or something! Yeah, the pills was tough, if I had a short term thing I wouldn't have hesitated, but since everything was lasting so long, you know, indefinitely, it just seemed like a bad thing to start doing.
Mrmanuel: Thank you very much!!!
Mariana: Wow, is your husband ok now? Does he suffer secondary effects from the kidney stones he had? I'm so sorry to hear that, I really hope he is ok.
It is tricky with pain meds... I'm all for squashing pain as it's starting by any means necessary, and pain medication can be very effective. For my situation, I guess the indefinitive amount of time the pain lasted, taking those sorts of medications seemed a bit risky.
Yes, my husband is ok now, thanks for asking. He never had another episode, maybe (hopefully) the stone dissolved.
I do know a little bit about the anger. I remember my father going to the ER with kidney stones and the obnoxious nurse telling him he was faking symptoms just to get drugs. I swear, I could have killed her - right then and there - a more gory decapitation than even you could muster onto paper. I think that is just about the worst thing you could possibly do to a person in pain - tell them that it's all just in their head. So, screw them and go you!
yeah I remember those days, and I am SOOOOO glad you are past those. Probably not as glad as you are, but I am so proud of how you've come through this thing and how you've let your optimism come back and focus on good things. Anger and frustration and anxiety really can lead to a lot of problems not just emotional, and I'm grateful (and proud) that you've accepted this illness and are trying to move on now, bit by bit. You really do amaze me.
Hey,
Glad to know you're feeling better and looking for the way out of the inevitable obsession about pain. It's mind over body, and your mind seems to have the tools needed to win the struggle, one day at a time. Good luck.
Mariana: Alright, that's great to hear!
Lindenksv: God, I hate that! It really is one of the most terrible things you can do to someone who's in serious pain, telling them it's not real!
Frenchy: Thanks so much Frenchy, you amaze me too! Let's pool our skills and take over the world and rule it with an iron fist!
People In the Sun: Thank you! You are so right about mind over body, although easier said than done, it is a very important thing to focus on. The body tends to follow the mind, the reverse is something you want to avoid, atleast when your body is sick or weak!
Yep yep. It's everything I went through and felt with my anxiety disorder back in 2000-2001. You couldn't have said it better. I've had people disregard my disorder too. Hard to be in one's own skin and suffer so much, while the rest of the word moves forward and looks at you like a weirdo or claims laziness. So be it. We know the truth.
That's okay, 'cause we were chosen. We are special. We have now realized the true meaning of life that so many out there are still blind to. We are now more loving, generous, kind, understanding, and able to serve others than ever before.
The wisdom and growth out of all of this is beyond what you ever could have imagined.
God bless, and know that I know and identify with yer struggle 100%.
WAT: Thanks so much, I know you suffered a lot too... It's great to hear such words of support, and thanks just for understanding so much. I think the lack of control over health and our situation can be the most daunting thing of all, it's a little dizzying at times when you realize you have no control...
I'm glad that you're starting to feel a little better! It feels a bit like emerging from death, doesn't it?
Hugs to you,
Lauren
Thanks Lauren! Oh man, so true, feels like I'm going to have a new lease on life!
it's really encouraging to read what you've shared here, sebastien. thank you.
Thanks so much!! I think it's very therapeutic too for me to try and explain some of the things I've felt.
I admire your strength in coping with Epstein-Bar. I can't imagine how frustrating it is, but I wish you an imminent and complete recovery.
Also, stay away from WebMD and all those others. I could relate to your looking up your symptoms online and having your anxiety make things worse.
I looked up some symptoms (they were the beginnings of the flu, now that I know) awhile ago, and everything I was experiencing matched up with diabetes and some other ailments. It freaked me out which just made me feel worse.
Glad to hear you're feeling better!
Tara: You are so right, I learned that the hard way with checking that stuff out! I made a promise to myself to never look anything up involving illness on the internet again. Seriously, I start freaking out, I already feel so trapped by this illness at times, and checking that stuff online makes it worse!
Helen: Thanks! Although I think I jinxed myself, had a couple not so great days lately, but it's ok, things are still getting better...
Seb, you are a gem. I see how your illness has shaped you into a remarkable, thoughtful, joyful person. I continue to be amazed at how much your story is like mine! The initial panic, the people who think you're making everything up because you "look" healthy (my dad was the actual cruel doubter in my life), and the self-esteem issues that come from not having a profession to validate yourself.
In the first instance, I made the mistake of reading everything I could find in the bookstore about scleroderma (which is part of the connective tissue disease that I have), and I thought I only had a few years to live. My doctor told me to stop reading things in bookstores, to go to a medical library to get the most up-to-date information, because the form of scleroderma I have (cutaneous), while still life-threatening, is not as bad as the systemic kind.
On the second instance, my relationship with my father has suffered because of his doubting. Only since he has seen the disfiguring effects of my illness does he believe. A very enlightened person told me I should forgive him because he was probably in denial hoping for the best for me and just expressed it in a damaging way. So I have forgiven him. I have not yet forgotten...
Finally, I have learned to like myself with or without a profession. I have a rich inner life and have been able to delve into parts of spirituality and life that most people either don't have time for or don't care to adventure into.
Doctors tell me I will have this condition my entire life, but I hold out hope for myself that I will totally heal. But if not, I can live with it.
I've never met you, but feel a bond with you anyway, bro.
Wow, Sonja, it is amazing how similar these struggles can be. I'm truly sorry about the situation you had to go through with your father, that must have been immensely difficult and very hurtful. I've been fortunate in the fact that the main people who ever doubted or questioned me were people that didn't know me very well. Yes, not working is very difficult, but I'm so happy you are able to explore life in wonderful ways. As I've come to understand, we must make do with our abilities, just do our best, I mean, what else can we do! I really want to work, I really hope I can soon enough, that is probably the most frustrating of all, but I try and be happy with the little things I can do, I find strength in the things I can do and I try not to be discouraged by the things I can't do. It's still not easy, but I try and go with the flow.
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