Dying With Dignity... So Much To Do.

I had a visit tonight with a friend of mine who says it's IMPERATIVE I write the book of my life and if not, I have a year to make voice recordings of my stories and she'll write it. Either way, I need to leave her a voice recording she can listen to for the rest of her life. She won't be able to come cry on my couch anymore (not that she did that a lot - but, boy trouble - you know) so I need to leave her something. 

You know what THAT means... I'm going to have to do recordings for everyone! I was thinking today of all the letters I'll need to write, as well. My Social Worker was here today and we got my personal directive taken care of, but there's not a lot to know yet. I'll have to do up a proper Will and stuff, but she said to call her back in 6-8 months and she'll give me a lot more inside info. She's on an Ethics committee and works for Alberta Health Services, so she'll be in the know. 

I have been writing to all levels of government to tell them I want to be involved in the SCC ruling conversation, how it will be implemented in Alberta. I want to be at the head of the line! I don't want to wait a year for the doctor-assisted death law to come into effect, just to need another year to get psychiatrists to see me and other doctors and blah blah blah. I've seen comments from some people that are devastated by this news - "what will this mean for my aunt with dementia? With handicapped people who feel pressure to kill themselves? For unborn babies?" PEOPLE! It is a CHOICE. You need to be an adult of sound mind and be able to decide for yourself. 

There's so many questions and comments going around. I'm attending a webinar meeting with Dying With Dignity on March 5. One major problem is, we have a Federal election on October 19. So will they debate it and pass legislation before then, or just leave it for the new government? Things need to be in place by February 6, 2016. The SCC said that even if a law isn't drafted by then, the SCC ruling stands. Whew. 

There's losing your mind when your body is fine, and then there's losing your body when your mind is intact. What's worse? I only know what I'm going through. And I can't WAIT to be able to end this. My Social Worker asked me to describe my pain, and why I don't take something stronger, like narcotics. I don't even know how to describe it. I live life at about a 5 out of 10 on the pain scale, (except for my right arm which is usually an 8) and then about 10-20 times a day I get flashes of it going to 11 - my bladder, muscles, joints - and I do take lots of supplements for that. That couldn't be stopped by a narcotic. And as for my general pain, I take a medication at night that's a narcotic blocker (LDN). I've been on it since 2002. The benefits of LDN (low dose naltrexone) are many, and I can't imagine how much worse I'd be without it. Any little bit of energy I do have, I attribute to that. My fatigue isn't NEARLY as bad as others with MS.  I also don't have the nerve pain so many others complain of. I went off it for a couple weeks when my leg was broken and I needed to take narcotics for pain. The DAY I went back on it, I felt like a human again. I don't want to go without it. I also think if I was on narcotics for pain, that I'd be truly bedridden and unable to transfer without a sling/lift. I'm so dizzy all the time as it is, I don't need that to be worse. 

Anyway, I've got lots to do and think about. A year is a long time I guess, but doesn't Christmas always seem to sneak up on us, unprepared?

Supreme Court Decision!

I'm very, very happy that on February 6, 2015 the Supreme Court of Canada agreed 100% to overturn the ban on doctor assisted death! I'm so excited about this. What I'm NOT excited about, is that it doesn't come into effect for a (very long) year. AND because our healthcare is run provincially, the provinces need to go about setting up the system how they want, and I live in a very conservative province. I'm a little worried they won't make it easy. The Federal Government can decide to pull rank and change the decision, but they said "it's not likely".  84% of Canadians want this. The SCC law is clear, and I 100% qualify for it. So, I have this year to get my ducks in a row and plan for my death. At least I can see an end to my suffering, and for that I am very, very grateful. 

People who are around me all the time, and especially those who've known me for years and seen the decline, are also happy for me. Except a couple super religious caregivers that I don't plan to mention it to (they may never come back). But it is hard, when someone asks you "so, what's new?" And you FINALLY, for the first time in years, have an answer that doesn't involve caregiver turnover or a new pain or weakness, and it's not appropriate. "What's new? Oh, the SCC is finally going to allow doctor assisted death so I get to die soon!!! I'm so excited!!!" Doesn't really make for a great casual conversation. I really hate that "so, what's new?" question. I'm in pain 24/7 and struggle like hell to get through a day or a night. NOTHING IS NEW WITH ME, EVER. 

I'm sorry if you're not around me 24 hours/day and don't see it. I mean, I'm not SORRY you don't see, but it's hard to understand if you don't. No one, and I do mean NO ONE, has seen what I go through at night. After I'm put to bed and set up for the night by a caregiver, no one sees me until they come back for my morning routine the next day. And the struggles I go through all night are insurmountable. No one sees it. No one hears it. It's horrible, and I wouldn't wish it on anyone. 

The struggles I have while my caregivers are here to help me shower or exercise or whatever, is SO not fun. For anyone. I mean, HCAs are trained and it's their job to help you, but it's hard and painful for all involved. My muscles, that I work so hard to exercise and try to keep strong, get weaker and weaker. Every move is harder and harder for me. I say "owww" or something similar all day and night. I never know when I'm going to choke or cough because my throat just decides to close off and not let me breathe. I need water to get my swallow reflex back and to open things up. It happens a LOT. I never know when my muscles will stiffen and/or spasm to cause me immense pain. Yes, I take meds and supplements for that, which don't seem to work. I get botox shots in my bladder (day surgery 2x/year, LONG, HARD, painful day of being poked & prodded for very little relief). Botox on my most-useless-yet-most-painful limb, my right arm, hasn't worked after two painful tries. 

I went out on Friday night. Yes, it was nice to get out. It was so great to see people I rarely see, and hug people who are amazing and wonderful. But it's Monday night, and I'm still recovering. The whole night, as much as I wanted to just enjoy myself, I was uncomfortable and in pain. I wanted to want to stay, but I just wanted to leave the whole night. I smile, but I'm not feeling it inside. I had to sit in my wheelchair for several hours, which is basically torture for my legs and knees. Getting wheelchair leg lifts is impossible because of my size, unless I get a whole new chair. And since it barely squeezes between doorways now, a new, bigger chair isn't a choice I have. I'm miserable. My life is miserable. 

Any good people see from me, is me covering up what I'm really feeling for their benefit! No one wants to be around a Debbie Downer, so I often put on a brave face. I'm not an inspiration, I'm not 'so strong". Being in pain and suffering for so many reasons because you don't HAVE a choice is not brave or inspiring! Having the choice soon, is such an exciting freedom.

As most people know by now, I attempted suicide last March. Well, I prefer I "wanted my life to end" to the word "suicide". I wrote my goodbye in here, followed by the one where it didn't work (I'd link it, but I can't do that on an iPad app). I'm even worse than that, today.  I am NOT depressed or have any mental illness whatsoever, my actions were completely reasonable and sane, albeit unsuccessful. I was very upset that it didn't work. That I was rushed to the hospital and stayed bedridden there for over two weeks, including a couple days in a psych ward. WORST experience ever! I never fully recovered from that inhumane treatment (staying in basically one position the whole time, no shower, no stretches, no nothing for two weeks). They care more about keeping a body alive than they do about any sort of quality to that life. My visiting caregivers did what they could, from stretches to cleaning me properly to sneaking in homeopathic meds for my RLS. 

My life is over, people! I'm through with hoping for a miracle. I spent years and loads of money on all that stuff - alternative treatments, special diets, positive thinking, visualization, lessons/books/movies/audio by Deepak Chopra, Louise Hay, Wayne Dyer etc. I'm DONE. I am so over it. I'm tired of trying so hard. Except for my exercise which is DAMN hard, but I can't imagine how much worse things would be without that. And my supplements. 

For those of you who convinced me the suicide didn't work for a reason, and that God has a plan for me (I've been hearing that one for so many years now!) I'm here to tell you, this is His plan. I had a great life, but it's been over for a long time. I've gotten so much worse over the past few years, I don't even know where to begin. But let me tell you, my suffering is unbearable, and I can't wait to die so it can end. 

And for other people in my position, are we not THRILLED?!?! So many people are suffering and in pain, and in a year, if we choose, we can end it. Not everyone will make that choice, but I sure will. I don't have a husband, I don't have children. I believe the last time I had sex was in 2006, and I will NEVER have it again. Just imagine that for a moment... Wearing an indwelling Foley catheter, which only caregivers see and clean, and never being touched or held in a loving way again. You can't even cuddle up with yourself, because your body is too paralyzed, stiff, sore or big to move that way. Masturbation isn't even possible. I could go on, but I think you get the picture. 

Yes, I have my cats. I love them. But I will not live for them. They will be taken care of. I will not live for anybody else. I know it will be unbearably hard on my parents, brother, and other people who love me. But I know they will eventually realize that it's the best decision for me to end this hell I've been living in for far, far too long. 

Anyway, it's a year away. It can't come fast enough for me. 

Single Men

I got my first computer with Internet in 1996. I had left my job at the Irish Rovers Free House (for "moral reasons", more on my adventures there another day) and not taking a vacation day during my (almost three) years there, gave me a nice lump sum cheque. Which I used to purchase my first real computer. 

I remember setting it up in the corner of my bedroom and plugging in the dial-up modem. I set up an email address, and I'm pretty sure I was set up in Windows 95. I used my Netscape (!!) internet browser to get to whatever search engine was used the most at the time (Google didn't even exist yet!) I looked at that little search box. I could type ANYTHING in there, and find information about it?!?! The idea was overwhelming. 

Kids today, seriously. You have no idea. 

I typed in SINGLE MEN and hit Enter. Why not?

A ton of links came up. The first one was American Singles. I clicked on it. 

So many profiles! Wow! I don't even remember how online dating profiles worked back then. I think it was free to post a profile, but you had to pay to message anyone. But it was free to receive a message. Or it may have even been free for women, period. All I remember is that I didn't send any messages, but on a whim I decided to create a profile and see what happened. 

I swear it was within minutes that I was receiving emails! Mostly from men in foreign countries like Egypt and Turkey. Declaring their love for me. Sending me pictures. It was crazy! It was also a lot of fun. I didn't engage with any of these men, declaring their love for me based on an Internet profile with no picture was a bit much.

One email was from a guy in Russia. He had attached a sound file, and his email actually sounded like he was a decent guy. Ah, first time interneters, we knew nothing. The sound file was of him introducing himself, and hoping we could stay in touch. He probably edited my name in there, as it sounded personal. He said he worked in computer animation, and really wanted to get out of Russia. It sounded awful... He went into a lot of detail about his horrible life there. 

I decided to email him back. Over the course of maybe one or two days, we corresponded a few times. And now he decided he loved me, and sent another sound file. THIS one was a marriage proposal. THIS one was generic, and he didn't even say my name. THIS one was probably sent to all the different women he was corresponding with in North Anerica, hoping for a bite. He never heard from ME again! I wonder how that worked out for him, if he ever got out of Russia? 

I think I did keep my profile up there for a long time, even though the craziness slowed down. I eventually put a photo in my profile, a good one, of course. I went for coffee with one man I met on there. We didn't talk long, it was more of a "you're in Čalgary? I'm in Calgary! Let's meet...." it didn't amount to anything, and I never talked to him again. Not that I was interested, but I'm sure the fact I had been diagnosed with MS and by then was using a cane (it must have been 1998) wasn't a huge turn on...