|
|
|
|
|
|
|
bittersweet and evocative
|
 Posted: Thu Oct 08, 2009 7:05 pm
This is going to be short and (not so) sweet because I really don't feel well. I had another seizure last night and as a result am numb from the waist up, can't move my hands properly, so typing is proving quite difficult, and my head feels like it's about to explode. I really didn't need this on top of everything else, but what I need never really comes into the equation any more. This is just one of many examples. I'm not able to walk unaided this morning, because I keep falling. It seems like after my turn I've lost all sense of balance and vertigo (is that the right word?) Bascially, it feels like my entire body is shutting down on me, system by system and I feel as if I'm about to be sick again, so I'm going to get off the computer. I hope you are all feeling a heck of a lot better than I am. Talk to you soon, as I hope I won't be admitted into hospital again. xox Ailsa xox
Oh, you guys should all check out this video: http://www.youtube.com/watch?v=KfH2BY5pdLw It gives me chills when I listen to it, but it always manages to bring a smile to my face, no matter how weak. It's an arrangement of Taylor Swift's Love Story, and Coldplay's Viva La Vida
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 10, 2009 6:26 pm
Quote: I think once I fully accept that fact, I'll be able to accept my life long diagnosis. At least I hope so. Because if that doesn't do it, I have no idea what will aid me in accepting it. And a life time of this denial, frustration, utter helplessness, is a life I don't want to live.
I can no longer do the crutches, and have obtained a cane for myself. Bet nobody here would've thought that since you're putting all your weight on the left side, the right side has to compensate for it, thus, leaving my right side "tired".
This is written in general, mostly, because there's just a small number of us on here, but I wanted to thank everyone~EVERYONE, for the amazing support everyone has for each other.
However, it seems like, well for me, that is, that I'm the one the worst, because everyone is paying attention mostly to me/and that's not true.
Ailsa and Madralyn, I can't imagine what it's like for you on a daily basis, but you both seem to have a lot of faith in your body that you'll be okay.
Madralyn,.... you've gone through cancer, and crps, and managed to land on top of the situation. Ailsa, I know you're still struggling somewhat, but, I think you'll also make it beyond any doubt you still might have.
"L", you're so funny. And I'm really sorry for sounding like a witch in one of those posts, telling you it didn't "fit" in this thread. Honey, you can write whatever you want here. This is for EVERYONE~not just the chronically ill, because WE need you to help carry us through "this". "This" meaning, eiw, a bad taste just went through my mouth because when I think of "this", it makes me shudder. I hate "this". I hate going through "this", just like all the other chronically ill patients we have here. I no longer know what to call "this". It makes me want to spit, this I know.
I'm trying VERY hard not to sound dispirited, but I am. And for once, boldie has nothing to say. lol.... it's so bottled up in my head, and there's so much of it..... so much has happened to me, and for once, I'm speechless. The other day, I almost had an anxiety attack because of all of (once again) "this". I'm disturbed for the most part, and for some reason, it can't be put into words what I'm feeling. I do know, however, that the constant, CHRONIC pain in BOTH my hips, is getting exhausting. I cringe every morning when I get up, because that means I survived another night. So, onto another day full of debilitating hips and the weather is getting colder and I so can feel those pins in my lower lumbar.
You know......I feel like I should just chuck this whole post, because it's going nowhere. It feels like I'm making a lengthy post with nothing to say. How is that possible?
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
bittersweet and evocative
|
Posted: Sat Oct 10, 2009 7:48 pm
Boldie, when was the last time I wrote a post that actually went anywhere?! Anything, as long as it's words, is fine for me, because the time I spend reading your post is time when I can think less about the pain and "this" that you were talking about. Now, I've been thinking about how we can classify "this" and there a few words that I tend to use as a substitute (don't worry, none of them are rude or inappropriate for children's' eyes!!!) They are:
Hell
Crap
Life
Struggle/s
(Unfair) Hardships
None of those do justice though to what we're going through and hard it is to get through each hour. Boldie, I share that feeling of cringing in the morning. Some days I cry when I wake up, other days I lie still in denial that I have in fact woken up. I started a story with the line, 'Reluctant to open my eyes as it will prove that I'm still here', and that feeling still stands. It's unbearable some days, and nobody seems to get it. It was nice of you to say you think I'll get there because that makes one of us. I don't feel like I'm ever going to get out of this rut. It's almost like once I sunk as low as you can get, my heels dug in (metaphorically, because I can't even imagine putting that much physical pressure through my foot!), and I cant' move. No matter what people say, I think it's probable that I won't ever move. I don't have the energy to take on a single day, let alone a life time. You know, part of me has gone already, and the other part is just waiting for me to say the word, waiting for me to make the final move. And I'm itching to do it.
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sun Oct 11, 2009 12:42 pm
Ailsa:: Oh no! Seizures are yucky. I have nothing else much too say to yu directly, but Get Well! Love ya'!
Auntie-- Hello! It's all right. I don't really talk to yu much, either!
Madralyn++ Ew, flu! I go soon (I believe this week) to get a general Flu shot. Then end of next month, I get that Swine Flu shot. Actually, I think I might get the one that goes up[ your nosey. My friend got that and she said that the docters are savinf the syringes for the asthmatics... but I still think I'm getting the one that goes up the nose anyway.
boldie** Hm... hang on... lost my train of thought... You are not a witch!!! Don't worry about that post. I didn't pay all that much attention to it. I understand ^.^
boldie & Ailsa== I have this icon on my profile: http://img1.jurko.net/avatar_2714.gif
|
|
|
|
|
|
A_Wolf_Drowning_In_Blood Crew
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sun Oct 11, 2009 3:03 pm
Hi Everyone ! Boy, yesterday was a day from hell for me. I can't explain it, it was just something I had to deal with the best I could. Ailsa, you are 17-ish, right? You've got your whole entire life ahead of you, and somehow, I don't know what it is that I'm feeling, but somehow, I KNOW, yes, .... I KNOW !!!!!! you will get better. Someday, somehow, you are going to find the right doctor. Now... I'm not saying you will be "healed" overnight, but, because you're so young, the possibilities are stronger in your favor to find a cure. Now with that being said, lol, Madralyn, if you're reading this, this is not to say it's the end of the road for you. "They" very well might find a cure for you, as well, but because you have differences, it may take a little more time to find someone perfect for you. (Geez, I hope I said that right) Ailsa, and you never know.... you might one day wind up here in the states. THEN, look at all the possibilities! There is nothing to say, either, that in the country you're from (New Zealand), that one day a doctor or a team of scientists find something that could help you. It may not exactly "heal" you, but more often than not, find medicine that could help you deal with life a little bit better. Know what I mean?
And,.... as far as I'm concerned, I just turned 45. In actuality, that is still considered to be young. I may wind up with another back surgery, that may be help my situation, as well. Who knows?
What I'm saying is this.............. Don't put all your eggs in one basket. You have to continue to HOPE that there is someone out there who can make your life more bearable. You have to COUNT on that. It may not be this year, or the next, but by gum, IT WILL HAPPEN! You are 28 years younger than me. What do you suppose COULD/WOULD/MAY happen in those 28 years? I need you to promise me that you will hold onto that thought. I know you've never met me, and when typing, you have a choice to think first before you speak or write, and yes, I'm not looking into your eyes, where you can tell if I'm lying or speaking the truth, but I am. I'm almost confident that within those 28 years, technology and medicine will be years beyond years in finding cures. Does that make sense to you? I hope it does, and I hope you privately make that promise-if not for myself, for you. Okay? Now, go get a kleenix and dry your eyes, blow your nose, and come back here.
Take my hand, Ailsa, and we'll get through all of this together, for as long as we're able to communicate through Hug Soft, Love Strong.
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sun Oct 11, 2009 8:44 pm
I wish I had more energy tonight to sit and talk to you but, I do not. Simply, the flu is over and the house bleached and aired so Monday, I hope will be a restful day, that is until the kids go to the dr. for their regular shot visit in the afternoon.
We can't all be up all of the time but, we must remember that we all have purpose and even when we can't see or figure out just what that purpose is, it still exists and it's our responsibility to fulfill.
Remember this mantra, if nothing else when feeling your worst....
Faith, Family, Friends....Faith, Family, Friends........Faith, Family, Friends......
Hug Soft, Love Strong gives us a little of each of those things. Remember even if you don't think you have helped a single soul today, reaching out and posting here makes an impact on another life and helps us to remember we are never alone or forgotten.
Lots of Love,
Madralyn
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
bittersweet and evocative
|
Posted: Sun Oct 11, 2009 10:39 pm
Hey all. Wolf - I love the image that's on your profile!! Boldie - I lasted until around half way through your message before needing a tissue!! I think that is pretty impressive, don't you? Ok, I'm thinking hard as to what to say next. There's a reason as to why I tend to stay quiet about a lot of things and this is it - because usually when I try and explain my mentality or lack of hope I sound incredibly spoilt, immature and just plain lame. But I'm going to try really hard to say this properly.NOTE: I'm really sorry if what I write following this offends anyone in any way - I'm really sorry!I understand that being younger means that I have more time to get better. But being younger also means that my body is still developing, bones are still growing, and these changes cause my nervous system to screw itself up more. Those are not the actual words that my doctor used to explain it to me, but you get the general idea >< I don't know, truthfully, if I could last another 28 years, or how long it takes for them to find something to help. The end justifies the means - isn't that the saying? (I always get the two nouns the wrong way round!) Well, I can't imagine an outcome that is worth all this pain. Even if I do eventually get better, I have to last until then, and I have lost the hope that I could survive that. But I'm making a promise, right here right now. Like Boldie said, you cannot see me, but I am looking at each of you in the eyes, holding out my hands so you can see I'm not crossing my fingers. I will keeping holding onto that thought. No matter what life throws at me, I am going to keep trying to remind myself that there's still hope, whether I feel there is or not. And Boldie, I'm taking your hand. I promise not to let go.
Madralyn, I glad that you're feeling better! I've missed you lots <3 I just want to let you ALL know that if you ever feel down, like you don't know that your purpose is that Madralyn mentioned in her post, well just remind yourself about how much you've helped me and all the support you've given me during a hard time in my life. I know that I haven't met anyone of you (as of yet!) but the joy and love you've put back into my life has been irreplaceable and so appreciated *takes a breath* Well, that's it from me tonight. Love to you all, soft hugs being sent fast post to you, and my prayers that tomorrow will be good to you.
xox  This is to say thank you to all those who have given me hugs when I need them, and it's a promise that I'll be here to give any of you hugs when the time arrives that you need them. Or want them. They're free and in endless supply ><
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Tue Oct 13, 2009 4:16 pm
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Fri Oct 16, 2009 1:48 pm
Hiya everyone !
Oh Ailsa, I do have to confess something to you..... The last 2-3 days, I have been in excruciating pain-I'm not kidding. I was willing to take any and all my pills just to get rid of the horrendous pain I had. I was thinking of you all the while, too. Because, I didn't have time to exactly post words, so I posted graphics instead, and I think maybe I have offended you. Possibly?????
I'm so sorry, but that's about all I could do. My apologies to you and to any one else who felt offended. Today, on a scale of 1-10, I'm feeling maybe a good 6. The other days were seriously off the charts !! I am so not kidding. So, if you could..... please accept my apologies. OMG! I just thought of something.... Unless, You were hurting just as bad. Ailsa, you better post here, or I'm going to have to get Madralyn to call you. I'm serious. This isn't like you. Ailsa? Please oh please, I pray to God Above !! that you haven't done anything stupid. I just thought of that. Oh God, I need to get a hold of Madralyn. Hey all! Sorry this post is short, but I smell an emergency here.... gtg.....
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Fri Oct 16, 2009 9:38 pm
Ok, I'm here. *waves and attempts at a smile* Hey Boldie, hey Madralyn, hey everybody else (sorry I really don't the energy to write much). I apologise in advance if this message doesn't make much sense to some people - I don't want to be too specific about details, but I'm writing this to those who know me and understand what Boldie was talking about in her last post.
No, I haven't taken it a step further. Don't worry. I have failed in the whole "breaking my bad habit" attempt, but I'm trying so darn hard. It's just so hard. Every time I try and stop, I get more crap thrown at me until I revert back to my old ways. Old habits die hard, or whatever they say. Anyway, your message with the images, Boldie, did NOT offend me. I sent you a facebook message that says this, but I'll reiterate it here in case you haven't logged on yet - I've been having a terrible time, if I'm to be honest. I couldn't find the words to explain to you, to anyone, what I was going through, and how I was feeling. So I thought the easiest path would be just not speaking. I stopped speaking at school - preferring to sit in the lift at lunch, away from everyone else. I would get home and put on my headphones. But I'm still here. As hard as it is, I'm still here, and I'm trying to hold on.
It would be cool if we could chat some time, so I'll PM you my number, Boldie. (I can't remember if I've given it to you already?). Man would it be nice to be able to actually talk to someone. Since I video chatted Madralyn last, I don't think I've spoken to someone face to face properly, more just the stray sentence, an occasional nod or forced smile. Anyway, I need to go and attempt to do some chores, because I don't want to get in trouble. I broke my toe on thursday night. On my good leg. So now I can't actually walk properly on either foot. It's really swollen up but I have to continue putting all my weight through that side because my CRPS has gotten even worse. It's spreading so fast and the pain is intensifying so dramatically that doctors don't even have time to schedule me an appointment before it gets worse. Isn't this fun? I really hope that everyone's pain is not too bad today, and know that I'm thinking of you all.
xx I'm like this hamster - still hanging on, as are we all. xox
|
|
|
|
|
|
bittersweet and evocative
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 17, 2009 9:45 am
Bittersweet, are you here?
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 17, 2009 11:39 am
hey ya'll! Sorry I didn't make my text all prettyful, not much time. Kinda gotta do homework and other unwanted chores... meh.
bodie: I am jealous actually that graphics work for you! I can't get them to post right. Oh well, failure does (and can) happen.
Ailsa::Nothin much, but I'm glad you are trying. And poor toe! TT.TT
Get better, guys!
I myself have just gotten by a 3day allergy suffering.... YUCK!!!
|
|
|
|
|
|
A_Wolf_Drowning_In_Blood Crew
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 17, 2009 12:27 pm
"L" I can teach you how to do it. Heck, if "I" can do it, MOST DEFINITELY anyone can do it. lol Just tell me what areas mostly are you having troubles with, and I think (maybe) I can help you.
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 17, 2009 12:41 pm
AILSA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  OMG, I was soooo worried about you, and then Madralyn gave me that idea to check your facebook log, in which I did--btw, thanks for the note, I got it... and then we both realized you had posted just the day before, so then we felt better. I was going nuts, trying everything to call you, and I used (even) a calling card to try-but that didn't work, and I don't have international calling on my phone, and I think this is one big run-on sentence. LMAO LOL ROFL HA HA I'm just so happy that you're okay, and you know what I mean by that. Always stay in contact with either me or Madralyn, okay? Cuz I left a really scary message on her machine as she wasn't home at the time. You scared me, my friend. THAT'S how much you mean to me little girl !! *whew........ Okay, everyone..... back up, let the girl breathe, she's okay.... stand back...... let the "OKAY" bus come and pick her up. hehe hehe
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Oct 17, 2009 12:47 pm
Suze_Sapphire Bittersweet, are you here?
Oh, seeing is how we let this little girl slip in here quite by accident, (j/k) may as well tell.... she's our new $100.00 recipient from FUN AND GAMES. You go girl!
Suze, to my knowledge, doesn't have anyone sick (or have a loved one with chronic pain), that I know of, but she was looking for you, Ailsa.... She even PM'd me, too! She's so sweet. Actually, she lives a couple of miles from me, so we've met already. How cool is that? To find someone in the same town as you! Yeah, I was shocked. So, I've gotten to know her parents, etc... So, people you don't even really know, is concerned for you. lol How 'bout that?
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Reply
