The suffering is way worse than the pain.

I've been sick with Lyme/everything that goes with it for half of my life. And I've never, ever been able to explain why it's so bad, never been able to explain why I can't do x, y or z because I'm sick. I assume everyone thinks back to their latest cold or achy joint and thinks, "I wouldn't let that get in my way." No one symptom by itself is all that unmanageable, in my opinion. The most limiting would be fatigue I guess but I'm sure we can all think back to when we were well to a time we were exhausted but still managed to function without giving it a second thought. And feeling faint, sure...you can't very well function when you're about to pass out, but even that comes and goes. Most people don't quit their jobs because of knee pain or skip a good friend's wedding because of a headache. The actual symptoms aren't so terrible. It's the SUFFERING. Could I have gone to my friend's bachelorette party tonight? Yes. I could've asked a family member for the money to get a cab to take me there. I could've sat there with my feet raised to keep from feeling faint, drinking lemon water while my friends take celebratory shots and trying to fake a smile while focusing on not feeling self-conscious or envious. I could've tried my hardest to have fun when all I can think about is the throbbing pain in my spine, and I could've dealt with the feeling that everyone is judging me for being "boring," and the stress of knowing they can't understand and that even though I want to drone on and on explaining how I feel in hopes that they'd get it, I can't do so because nothing brings down a party like a pity party.

For me, the hardest part of being sick is all I'm missing out on, and the torture of trying to ward off sadness and jealousy and trying to find a way to be happy when o want so much more out of life than considering a good primetime lineup on tv a good night. There's such a stigma around the psychological impact or being sick. We're trained not to admit to feelings of despair because the second we do all credibility goes out the window and we're forevermore labeled "just depressed," and demeaned as if we didn't know the difference between feeling depressed because we're tired and being tired because we're depressed.

Every time I get a brief taste of real life, it really hurts. I spend my days living in this bubble where the only reward for effort is the alleviation of symptoms, where all I'm working towards is something neutral rather than a positive reward. If I could live a full life with all of these symptom, then I would be happy despite being sick. The worst part isn't the symptoms, it's the sacrifice with no reward, it's the suffering that no one understands, and the suffering of knowing no one understands.

That's my depressing rant for the night. Chalk it up to dysregulated hormones, sleep deprivation, and feeling really hopeless because even my own doctor has checked out of my life.

Borderlyme, I so feel for you. I know what you are going through. I was so sad and depressed for so long. I was a workaholic, a control freak, never watched TV, loved to do, do do, and then wham. It hit me hard, very hard. But once I realized and accepted that we cannot go backwards in life, only forward, it really helped me. I have finally accepted the isolation from my friends. They didn't understand what it was like psychologically to be left out of everything because I was "sick" and quite frankly I couldn't deal with the fact that they had no idea how to be caring. Do I miss those days? Absolutely. But I am so much happier, healthier, content knowing that I feel better and my mind is at ease once I have accepted my new life. I really really believe it has helped me get well. The anger and feeling embarassed and ashamed all the time for having a disease was causing me more anguish than the disease itself. I spend my days now enjoying my job, reading wonderful books, watching TV shows I never watched before, enjoying my house, and just simply relaxing. I have started to go walking lately and take in the sites and sounds around me rather than rush to get to the next thing. I don't know what else life has in store for me but I'm hopeful I'll be able to smile until I get to the next stage. I hope you can too.

I happen to agree with you Borderlyme - the suffering is horrible. Although I am with Lymester on this one. I had to pick myself up by the bootstraps and tell myself that my life wasn't going to change into something else without a long hard struggle, but I wasn't content with the way I was, so I'm committed to the very end.

Like Lymester explained so well, I listen to what my body is demanding and usually will give in without much hesitation, and I've learned not to beat myself up for it. There's just no point in that. We are where we are, we can't change it any faster than we are, so do what you can to be content with the pace at which things are going. Your attitude and whether or not you are relatively happy really do have an impact on your healing!!

I'm having a pretty rough morning today, but that doesn't mean I'll have a rough afternoon, right? Even if I do, I can adjust my schedule around the way I feel when needed. I am blessed in that I have been too ill to work for about 1/2 my life now - I'm blessed because I don't have to figure out how I'm going to make it through the work day, if I'm having a really bad day I can go back to bed, and it doesn't matter to anyone how many time I have to run to the bathroom!

I am also blessed to be a Moderator here. Helping others in some small way really does help me to feel a little better and helps me to feel like I'm actually contributing to the betterment of something.

BTW Lymester, well said!

Thanks for posting borderlyme, because I've been having a pity party for the last 3 days and thinking the same thoughts you've written. It's not days but years that are going by and one can't get them back.

The thing about feeling good occasionally is that I think I've turned a corner and I've gotten my life back and when a couple days later I get knocked down again, I get discouraged. Yes, I can push myself through the bad times and show up for events, but I don't "enjoy"although I'm glad I went. But then I pay for it the next day.

But, I'm still going to keep searching for that magic bullet tha will lick this thing!

agreed, agreed and agreed. I think we all feel like lyme has taken our lives away. I've decided that it has taken my old life away, and it is time to start anew, like it or not. I will go on, we all will, life will not be the same and neither will we. Hopefully we will be stronger, wiser and healthier at the end of our lyme journey. I may lose my jobs, but what could be waiting? I have no income and don't know how long that will last, but i will get through this, and be stronger for it. so will you:)

I think it just comes in phases. I got through the better portion of 6 months without feeling any bitterness...but now I can't pull myself out of it.

I RSVPed yes to my friends' wedding - because I always say yes to future evens because all I have is blind hope that I'll be feeling better at some point in the near future, because I can't go through life with the depressing (yet realistic) assumption that a few months from every point in time I'll probably still feel like crap. It's in 2 weeks and I'd decided I was going to call her to tell her I'm not coming, then I had a good day and changed my mind....now I feel absolutely awful again and I'm SO CONFUSED!! I really need to let her know ASAP before she gives a final head count for the reception and I really have no idea what to do. It's like I can no longer make a rational decision because my body is completely irrational. How can I know if I'll feel up to it? And what's worse, the risk of going and being sick, or the risk of feeling fine and missing out? It's a lot or work just to get there (3 hours away, I'd have to stay with my grandmother for the weekend who is very stressful/mean, and I'd have to deal with the actual experience of being sick at this otherwise fun occasion. At the same time...I miss all of my old friends (especially since I havent really socialized in like a year) and this is an experience I really can't make up for later. I just have no idea what to do.

This is an interesting thread  because you all seem to feel the same as I do.  I was having a hard time understanding what I was really feeling and why.
I am not gifted in the speech/writing dept as I tend to ramble on all my thoughts and have a hard time organizing those thoughts.  And I can also say that this neuro lyme isn't helping matters either so 'sorry in advance'.

I have days that are totally awful and days that are not too bad, just fatigued. 
It is during those days that I tell hubby to please remind me when I feel bad again that I will indeed get better because I get really negative.  Well, about 3 hrs later he is reminding me because it is then that my knee swelled and got totally numb (figured maybe a clot?) and terrible calf pain not to mention the headaches and numb face started at same time. The eyeballs hurt like the dickens too.

My husband and sister are the only ones who see me like that.  Everyone else only sees me when it appears I am fine.  Well, someone actually nailed it when they said how people do not understand or or even believe how we are actually feeling.  Some probably do think we 'fake' it.  It is so upsetting to me that I am enduring all this suffering and nobody really even knows it...or understands!

No, I do not need nor want pity.  But what do I need then?  I don't know.  Maybe just validation?  Maybe I just want someone to know, to believe me, to understand, to imagine, to visit, to call, to empathize with me, to talk it out and to encourage me and lift me up by telling me how things will be better. 

This is why this forum is so valuable-people on here actually Believe, Understand  and can  Empathize with us and I can feel comforted even tho I know no one on here personally.
And I personally pray for each and every one of us lyme victims...past, present and future ones.

It's reag a tough call. Theres no place in this world for us to always act the way we feel...even when we're really sick, there's still such a thing as social etiquette! We spend so much energy perfecting our presentable selves, trying to appear normal in public, but then it can slap us in the face! We're so used to putting on that brave face and sugar coating everything that it almost feels wrong to be honest. Personally I'm uncomfortable telling the honest truth about how sick I am, it feels like I'm just complaining. I find myself even acting that way with doctors; it's become such a habit to pretend to be fully present instead of distracted by pain and exhaustion and wondering if I'm going to pass out....I don't know how to just be myself anymore. We end up being our own worst enemies simply because we try so hard to appear (and be) strong. Sorry if I'm overgeneralizing that's just my experience.

I think the hard part is truly getting to that state of mind of not caring what others think, not caring if they believe us or not. Tricky part is that, ar least for me, when others don't believe me it makes me question myself (especially since in a 5 hour period I can be both miserable and completely fine!). At least we all understand each other here, and that's priceless.

This whole experience really has strengthened my compassion for all people. I have to admit Ive looked down on certain types people in the past...I've been judgmental. But now I realize more and more that no one chooses a crappy life. Whether it's illness or other overwhelming life circumstances, we all do the best we can, and we'd all be a lot better off if this world were less judgmental and more compassionate.

Spall, I would nominate you for post of the month, if we had such an award. From your script to your understanding of others...I'm kind of at a loss for words (no news there!), but honestly, I think what you had to say was great.

Spall says "How are you?" I prefer to just have a quick line ready; I even tell my wife ahead of time so we don't give conflicting stories.

Q: How are you?
A: Pretty beat up, but we're working on it

That's perfect and I used that line yesterday and it went great. Short, sweet and to the point. And if anyone wants to know more, they can ask. At least this way I do not have to feel whiny.

Award for post of the month? You got my vote as well.
You have a good way with words.

Could I get you to email me? I would email you, but of course you don't have one activated. I have an idea.