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A_Wolf_Drowning_In_Blood Crew
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 Posted: Fri Aug 07, 2009 7:38 am
boldie:I've been half-blind since I was...(Lemme do some Math...ew) 5? That sounds right. I had glass in my eye and it never healed porperly...or something like that. I'm used to it by now, though. 3nodding Just put your hand over your left eye and that's how I see.
Everyone: Thank you for welcoming me! I fell happy inside biggrin
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Posted: Sat Aug 08, 2009 8:12 pm
Hey Boldie. I guess it will be less of hassle once it's done and dusted, right? Lol I can't say I have much experience with menopause, but I only get mine every 4 or 5 months, because my medication has screwed up my body so much. My friends all say their jealous, and wish there's wasn't so regular, but I explained that it means you basically have NO idea when it's going to spring itself upon you ><
I hope you are indeed having a better day today. I've been doing homework all day which in retrospect (isn't that just a fantastic thing? not) I really should have been taking it easy. I've written a 1000 word essay in French, as Cecile, the main character from Bonjour Tristesse. The worst part was we had to pretend we were in a counseling session, and were responding to questions about how we're feeling, and all that sort of crap. Umm, I have enough of that in my own life!!! I nearly cried when we were given the assessment. I did cry today when I was writing it. I always saw school as my escape, but now my personal problems are following me everywhere. I think I need to have a long loooong holiday, to relax, and take a step back from the world, but currently that's not an option. I was talking to my Grandma about it, who has gone and decided that she is taking me on a cruise mid June next year, for 12 days, to the Pacific Islands, so I can have a break. That made me cry again. It's been one of those days, you know?
Anyway, I need to go and mentally prepare as we have guests coming over tonight. You know those times you just long to be by yourself? That's how I am today, but our guests have younger children who they're bringing, on the reliance that I will look after them and keep the occupied. How kind of them, is what I say to that. So, I best go, and try to make myself look presentable and less of a wreck than I do currently. Goodbye to the rest of my spoon collection until Wednesday. Love you lots (a collective you ><) and Boldie, I'll PM you later as well. xx Bless, Ailsa xx
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bittersweet and evocative
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Kira-fightingdreamer Crew
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Posted: Sat Aug 08, 2009 9:16 pm
Ailsa, just wondering. You're.... pretty much "baby sitting" how'd it go? I watch kids all the time but I'm curious.. I have read the spoon theory, much thanks to Madralyn and.... and... I lost my train of thought.. listening to my sister complain about.. my brother drooling on her eye. Oi.. Anyway! I don't remember what I was saying, but I was wondering how such activities, how much they may take out of you. Er... I hope this isn't offending, I'm just really curious... *gives up trying to word this in a nice, proper way*
Anyway. Lots of love, to everyone~!
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Posted: Sun Aug 09, 2009 9:26 am
Kira-fightingdreamer Ailsa, just wondering. You're.... pretty much "baby sitting" how'd it go? I watch kids all the time but I'm curious.. I have read the spoon theory, much thanks to Madralyn and.... and... I lost my train of thought.. listening to my sister complain about.. my brother drooling on her eye. Oi.. Anyway! I don't remember what I was saying, but I was wondering how such activities, how much they may take out of you. Er... I hope this isn't offending, I'm just really curious... *gives up trying to word this in a nice, proper way* Anyway. Lots of love, to everyone~!
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Kira-fightingdreamer Crew
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Posted: Sun Aug 09, 2009 11:26 am
Uhm, sort of Boldie, I really don't know how to word my question but that's a bit closer. I know that daily activites are exhausting depending on the person who is doing it but since you, Ailsa, are around my age, I was curious as to activities that we both might do on occassion have different impacts on the way we each individually live. >_<
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Posted: Sun Aug 09, 2009 12:19 pm
Speaking of holiday's/vacations... I'm going to the Great Wolf Lodge! (Not just because of it's name...) If you have kids, or grandkids, try and take them there! I'm not sure, but it could be more stressing... or you could have fun too! I dunno... just an idea.
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A_Wolf_Drowning_In_Blood Crew
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bittersweet and evocative
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Posted: Sun Aug 09, 2009 10:15 pm
Kira-fightingdreamer Ailsa, just wondering. You're.... pretty much "baby sitting" how'd it go? I watch kids all the time but I'm curious.. I have read the spoon theory, much thanks to Madralyn and.... and... I lost my train of thought.. listening to my sister complain about.. my brother drooling on her eye. Oi.. Anyway! I don't remember what I was saying, but I was wondering how such activities, how much they may take out of you. Er... I hope this isn't offending, I'm just really curious... *gives up trying to word this in a nice, proper way* Anyway. Lots of love, to everyone~!
Ok, I actually have never done this sort of thing, so I hope I explain it in a logical and semi-understandable way. If I do it in a similar way to the Spoon Theory, do you think that will work?...lol I'll try anyway! My first task in the morning is getting the energy to sit up and turn off my alarm. I usually sleep around 3 hours a night if I'm lucky, so I don't really have much time to recharge myself (and my spoon collection). I find dressing really draining as I can only wear ugg boots (summer and winter), so trying to find an outfit that doesn't look absolutely out of place with ugg boots is hard. I think that that task is emotionally draining also as it only highlights for me how I'm different to everyone else, and how my health dominates my entire life.
Now onto school. *sigh* Ok, so at my school we have five one-hour classes a day, then form time, interval and lunch. Now deduct five spoons from my collection, and that only covers walking to each of my classes. My school in comparison to those in the States (as far as I'm aware) is quite small, but for me, walking a distance of 5m is tough. By the time I get to class, I can't concentrate properly and occasionally I just fall asleep. I walk to all my classes alone, as if people came with me, they would be horribly late to class. I hope this isn't too much information, but I usually don't go the bathroom until I get home, because the task of having to walk to get to the nearest bathroom would use up one of my valuable remaining spoons.
Now how do you get home after school? For me, my school is on a hill, and I can't even walk down the drive way. Therefore I get collected by a taxi from the school office. This means, no social contact with friends after classes. It means I go straight home after school, and only get to hear about what other's got up to in town together. I don't get to go to birthday parties because I don't have enough spoons to get there, let alone be cheery and pleasant company.
I can't work, because I'm too tired, and don't get anything done. No one would hire me over able bodied employees who can complete the tasks faster. When I get home, and have to walk up my path and stairs, I've wasted another spoon, and have around one left to get me through the entire night. This means, no homework, no household chores (and I pay for that with lectures from my parents - there goes half a spoon), no socialising with friends or family. I feel sick by around 5pm, having not eaten much all day, but having taken my medication, and also the feeling of utter exhaustion.
In weekends and holidays, I perhaps see a total of one friend, if I'm lucky. Going to the movies? Near impossible, as I've lost most of my vision, and can't find a means of transport into town. People could come over to my house, but once I sit down on the couch, I can't find the energy to move for a good number of hours, and my friends tend to get rather bored. When we have guests over for dinner (like last night) I force myself to stay in the living areas, to 'socialise' but I end up either falling asleep, or appearing really rude due to my lack of speaking and annoyed facials. It's like I don't even have the energy to have a conversation with someone some days because that involves processing what someone is saying and then thinking of a reply. Simply doing that takes away a spoon.
Kira, did that make some sense? Please let me know if there's anything else you want me to explain! I think that it may be good for me to get this out, anyway, and if it's educating people simultaneously, that's a bonus >< Thank you for letting me ramble! xx Ailsa xx
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Posted: Mon Aug 10, 2009 9:43 am
Oh, no Ailsa! Thank YOU for explaining it. I really don't know how all of this affected you. I mean, I know Madralyn was talking to me on the phone about all she has to do, her daily routine, but for someone who is 17, and basically has the same problems as an adult, just blows my mind. You are educating everyone who just read that particular post. I had no idea, Ailsa. Btw, what are "ugg boots" ? Are they a special type of shoe to help you walk? idk
I just wanted to post in here to thank you for YOUR daily routine. I think it's amazing that you can even post in here. BTW, I will try and keep my posts larger for you to read. That would probably help you, huh?
Ailsa, you're the one with the courage. My God! And to do this every single day, you have just GOT to be exhausted!! Thank you so much, Ailsa for letting us in your life. You're the brave one.....
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Posted: Tue Aug 11, 2009 5:34 am
AuntieSocial 8B bittersweet and evocative Hey guys, thank you all for your lovely comments! That just made my day >< Firstly, Boldie. Thank you for clarifying those few points for me! Lol Boldie, I agree about the pregnancy point - that would be rather unfortunate for you AND your back!! I felt mean laughing as I read it, but I figured that as you appeared to be laughing lots yourself that it was ok >< I like your idea about imagining I'm some where else on the day when I don't have RSD. That makes a lot of sense, as it means I can twist what's happening in my day to match that of a 'normal' person. I've never liked the term normal, because really, what is normal? But for this purpose, I'm referring to it as normal, as more of a generalisation.as8b: sorry to hear that job hunting didn't go down too well. I'm sure something will pop up soon. Are you looking for anything in particular, or just something that offers you money for your time? lol I've won a scholarship for the rest of this year, and it appears that I'm going to be given 2 for my first year of university next year, amounting to $9,000 in total. *fingers crossed* As a disabled student, university is going to be more demanding on me than other students, so I won't be able work during the semesters. Currently I'm reading the Unabridged Journals of Sylvia Plath which are AMAZING. I personally love Sylvia so reading her journals is just such an insight into her world, and I find that I can really relate to her. For fun? I usually come online and waste away hours, transporting myself into another world and life lol Other than that, I read, and on days when I'm up to it, I do cross-stitch. Unfortunately, because of my lack of eyesight at the moment, I can't do my embroidery which I'm finding really frustrating! I'm a musician so the most of my day I spend composing music, singing, playing the piano and my saxophone, and generally playing around with songs etc. lol how about yourself? What's your idea of fun? xx Kira: Boldie's idea seems like it's going to work really well! I'm just preparing myself for it >< And thank you for hoping for me - I really appreciate it!!
my idea of fun, *racks brain for ideas*
well, playing piano, reading! um, playing guitar hero world tour ( i actually like rock band better), I love going to book stores! um, the internet. oh i love buying new school supplies (even though i don't really like school. ( ilove learning i just dont like the kids at school really. OH I love love love love love reaind harry poter. I also love hosting movie marathons of movies! I find that i enjoy harry potter so much because it was the first book to take me across the world while sitting in my room.
To eery one: what do you liek to do for fun.
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Posted: Tue Aug 11, 2009 8:36 am
I read Ailsa's post and it made me grateful! (Not trying to be offending/rude!!!) I live in kentucky on a farm with 100 acres. (most of it woods) I have chickens, 1 cow, and 3 horses. Plus my 9 dogs; 3 Irish Wolfhounds, 2 great danes, 1 St. Bernard, 1 mutt, Wolf Hybrid, and a pitbull. I have to go to school and other daily tasks. Plus I hunt for food, not all, just a little. (Mmm... vension) Then I have to take care of the farm. Milk the cow, feed the animals, exercise the horses, walk the dogs, etc. I guess I just have a bigger spoon collection.
Unlike you, Ailsa, I have half-complete vision and that makes tasks harder. I can't imagine what its like to have a bit more lost!
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A_Wolf_Drowning_In_Blood Crew
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Posted: Tue Aug 11, 2009 10:55 am
Oops, sorry. redface
Sweetie, that's okay. Really. and Gosh,.... I re-read what I said. I'm so sorry it came out that way. That was actually rude. I'm gonna fix it. lol,.... but you're okay. Honest! razz
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Posted: Tue Aug 11, 2009 8:25 pm
Hey there! My internet has been down the past few days, and it's been torture not being able to come online and chat to all of you!! I'd like to say a quick thanks to begin with that you have started to make your font sizes bigger for me - something as small as that actually makes my day heart I am INCREDIBLY grateful for that!
Ok, ugg boots. They are basically a soft shoe, that is lined with fleece (in my case, it's real sheep's wool, but you can get synthetic ones, also). They are extremely hot, so having to wear them in summer is horrid.  That's what they look like, in a way. Mine don't have the rips at the front (this is just an image off the net because I couldn't be bothered trying to find my camera to take a picture of my own ones)! Because they don't have elastic or any sort of grip around the ankle, I can usually force my foot into one. I am unable to wear any other shoe because they either tighten around the ankle which I can't physically handle, or are too thin, meaning when my foot's swollen it won't fit, or are too rough against my skin. I have to actually have two pairs though, because my injured foot is a size 11, whereas my normal foot is only an 8.
Boldie, I agree with your comment re. my age. I think one of the things that I find hardest to deal with is that CRPS/RSD hit me at the age of 13, when all my friends were just beginning to come into their own. I feel like I got left behind in some aspects, and sped ahead in others. Being sick has made me grow up a lot faster than others of my age at school, because I've dealt with failures of treatments again and again, and still I'm supposed to keep going. I've lost friends who were only 3 and whom I looked after during my hospital stays, to cancer. I've had to sit beside their parents as their told the news that their child isn't going to pull through this time. (Ok, now I'm crying so I'm going to try and make this post slightly more cheery). But on the other hand, I haven't had experience going out into town at night with friends. I haven't been able to attend any of the school dances or ball (similar to your prom/homecoming I think). I feel as if I have almost been torn into two pieces. One of which has been left behind at the start of 'teenage-hood' and the other which has reached adulthood already and is waiting for me catch up. Does that make any sense?
I want to thank you (collective you, that is) for letting me post here. I know that it takes courage on my behalf to have to put into words the daily struggles and torments of my life, but it also takes courage for you to read it. Actually read it, and take in what I'm saying. I know so many people who don't take the time to understand what I'm saying, because it's too much to deal with. Reading about my life would involve them accepting the fact that I am different, and that I am going through a really tough time. I find most teenagers don't want that responsibility.
Anyway, I have a massive english assignment that I should probably go and do now! I hope you are all having a great day, and thank you once again for being the supportive, amazing people that you are. It means so much to me that you're a part of my life. xx Ailsa xx
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bittersweet and evocative
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bittersweet and evocative
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Posted: Tue Aug 11, 2009 8:32 pm
A_Wolf_Drowning_In_Blood I read Ailsa's post and it made me grateful! (Not trying to be offending/rude!!!) I live in kentucky on a farm with 100 acres. (most of it woods) I have chickens, 1 cow, and 3 horses. Plus my 9 dogs; 3 Irish Wolfhounds, 2 great danes, 1 St. Bernard, 1 mutt, Wolf Hybrid, and a pitbull. I have to go to school and other daily tasks. Plus I hunt for food, not all, just a little. (Mmm... vension) Then I have to take care of the farm. Milk the cow, feed the animals, exercise the horses, walk the dogs, etc. I guess I just have a bigger spoon collection.
Unlike you, Ailsa, I have half-complete vision and that makes tasks harder. I can't imagine what its like to have a bit more lost!
Please don't think that your post would have offended me. I think that it's truly amazing that someone who has vision only in one eye should do that much activity, and live on a farm!!! Actually! I do wish that I could get up to that much physical activity, and be able to spend so much time with animals (being an animal lover, myself), but I think that it's been such a long time since I've been able to do anything of the sort, that I'm past the stage of jealously, and I tend to just quietly muse over what my life would be like if I were able to do anything that strenuous.
The vision thing is really tough at the moment, and I'm still having to get used to re-arranging how I lived to match my visual needs now. At school, my teachers all have to enlarge our notes to A3 size, which is highly embarrassing when I pull out all my notes in class. But any other way, and I can't for the life of me read the text. It's the balance between fitting in, and meeting all my health related demands. And gosh there are a lot of them!
Now, I REALLY should go and do my homework. xx love Ailsa xx
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Posted: Wed Aug 12, 2009 8:38 am
Aw! I feel special that you, Ailsa, replied to me! Teehee. I'm 17, about your age, yes? My school doesn't start until Septmember. Anyway, I hear that you have an injured foot? I'm sorry D:
As boldie may know, I injure myself quite often... haha, so I know what it's like to be handicapped plus half-vision. Kinda annoying... and it doesn't help with my pain... GEEZ.
Well... Nothing else much to say, so... hope everyone has a good day! Buh-bye~ heart
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A_Wolf_Drowning_In_Blood Crew
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