Percocet for the pain. She lived near Vancouver and seemed to have as much disappointment with the medical system as I do here in Australia. She was hopeful when a complex diseases clinic opened up nearby but she soon realised that they could not help.
I know exactly how you feel. I'm not young anymore and I find it harder and harder to cope and it seems things are just getting worse. I hate to say this...but you might understand my thoughts ~ at times I think of getting a gun and pulling the trigger. I don't really want to die of course but just have some quality of life. You don't have to worry as I wouldn't do such a thing...plus you can't just go buy guns here in Canada....we're not like the U.S. I tell you the States are all gun happy. I just don't have much faith or hope either but we just have to keep on trying. I called my daughter yesterday in tears. I feel I must be a burden. Sometimes with this illness I'll just break down and call either Leeanne or Dick. I always apologize for complaining...so grateful my daughter and b/f keep siupporting and loving me. Let's just pray something changes. That New Complex Disease Center will be opening in early 2013 but I'm not stupid and I realize there is no cure so I'm not even hopeful with that. I'll go in the hopes that they can learn more about this illness and pray it will help others in the future. Who knows...perhaps they'll have a few suggestions....I'll be grateful for any help at all ~ but I know not to expect miracles. No one should have to suffer like like this Judy...unbelievable how cruel the medical community is to keep sweeping it under the carpet and making those who have M.E. belittled and treated like we are all psych cases. Hoping this new center will educate drs. One can dream. January 2013
It had gotten to the stage that she lived only for the odd good day as she explained:
We relived some of our good memories together and we celebrated when we were well enough to create some new memories with our families.
Judy I know how you feel. I've been in such a long horrid crash. I sometimes just get so I'll I think I should check into the hospital but then I realize they would just think I'm crazy and anyhow what can anyone do? I have to see my Dr. today and hope I don't end up in tears ~ I cry so easily when I'm so sick...my emotions are all over. I think a crash is worse than pain because at least with pain you can usually get some relief...but there is nothing you can take for a crash...it just feels like your dying...so exhausted beyond description...so weak. I get to the point I don't even want to talk to anyone as it's too much energy. Have a "to do" list on my coffee table here and some things involve phoning people...but I'm just not up to it. I have to discuss pain meds with my Dr today and unsure what he'll want to do. He asked me to research pain meds and I found it depressing. Know I'm thinking of you...this illness is so hard...I just live for the odd days I get here and there where I don't feel so sickly. I really pray you get a break soon...it can really pull you down. xxx
....seeing you there with that cracker brought back memories of my family all around the table for Christmas dinner in the past. We always had those crackers and we would wear our silly hats and go round the table and read off the jokes.2011
|2011 when we became Facebook friends. Louise and her daughter.|
Judy this illness is so terrible. I'm so glad that both you and I both were able to enjoy Christmas...I tell you it was a fluke I was able to go...if my daughter had the dinner on Christmas day it definitely would have been a "no show" for me.........I am just so frustrated Judy. I can't hack this stupid pain and lack of sleep. I find taking percocet a double edged sword. I so need them but then of course you build up a tolerance and they just don't work as effectively as they once did and trying to keep usage of them down gets harder and harder. Sometimes I feel like getting and a gun and pulling the stupid trigger. I have so many different pain syndromes ~ it just never ends. Today I woke up to severe RLS...absolutely brutal. Feels like maggots crawling from my feet straight up to my lips and cheeks. Then if it isn't RLS I'll have severe fibromyalgia, or bone pain, or nerve pain, or severe joint pain. Sometimes I just don't even know what kind of pain I'm experiencing. I just get so frustrated and scared. Then the "crashes" are horrendous...you know all about that. Seems we just live to exist...that's why being able to get out for Christmas was such a blessing (for you and I)! 27/12/2012
I have to go see my Dr on the 2nd and am already worried about that....I always think to myself "am I going to be in a crash", "am I going to get enough sleep", "am I going to be in pain", "will I be able to do the drive"? This is how we live now...it almost seems weird to look back on my life and remember that I use to have no thoughts about such things. If I had to shop then shopped. If I wanted to plan to meet up with friends well then I did. I only managed to have one bbq here for my daughter and her family since I moved here 7 months ago. I had to keep calling them on what I call my "good days" until finally I managed to get them over when they had no plans. This is why we have lost so many of our friends. We can't plan to meet up with them...we just live an existence day by day, hour by hour never knowing what is coming next.
I'm so frustrated...I have been waking up every day since the 24th before 2 am because of pain. I can't just turn around in bed and try to get back to sleep. That would be too easy. Instead I have to get up and take 2 Percocet and then I'm up for the day. For some reason Percocet stimulates my brain and I'm very seldom able to sleep on them. It makes for such a long day Judy. I really want to live...but I don't like just existing.
BTW those antibiotics will give you brutal bowel attacks. It's not going to be a pleasant treatment so all we can do is keep praying and hold onto faith that this treatment helps you. I'm glad we touched base again. You can always talk to me if your going through a hard time of it ok? Sometimes I don't look at FB everyday...it so depends upon how I feel. I wish I could say something positive to you Judy. Love you...hang in there...and here's to HOPE 30/12/2012
|Louise was fond of horses before ME|
I think about those things as well...but I think if ever I was to be healthy Dick and I would start a life together. I definitely would spend allot more time with little Jacob. I'm 55 so nically think I would look for some work...it could just be part-time...just anything to keep busy and also so I would be more social. So use to lying on the couch all the time it would definitely be a change haha. Just having a part-time job would help me out financially as well. Anything is better than this! July 2013
|2015 at her daughter's wedding|
I got botox for my bleuphrospasm on Friday morning. It was a Christmas gift from my daughter. I used to get it every 3 months but that was about 8 years ago. In about 8 more days it'll start to kick in and my eyes won't be closing up on me. He charged me for medical purposes hence the cost was about half the amount someone would pay if it was done for cosmetic purposes but even with that it was a fortune. Now I remember why I just decided to have my eyes contract constantly and close up on me![and forget about treating it]
The botox will work...it should start to kick in on Sunday....typically takes 2 weeks to fully work...but I always start to feel results in 10 days...it feels so good. You can feel the muscles in your upper and lower eyelids being forced open. Initially your eye lids won't totally close up...but it's so much relief from the constant strong contractions I get without it. He was so nice and stuck a little amount in the worry lines I have between my eyes and also a few other spots. If you're going to have a medical problem such as bleuphrospasm it actually helps out with eye wrinkles too . Once when I use to see my neurologist for injections I joked to him and asked him to get some of those eye wrinkles out at the same time lol...to which he replied that when using botox for bleuphrospasm it actually is used in areas they use to get rid of eye wrinkles ~ BONUS...if you're going to have a medical condition like that at least it gives a cosmetic look at the same time. wink emoticon But since I haven't had botox for about 10 yrs I have more wrinkles because of the continual contractions...also add in the age factor! I better get some pictures done during those 3 months because there is no way I van get it done every 3 months. I was thinking if I could have it done 2 times a year at least that would be 6 months of relief which is a whole lot better than the 10 yrs I've gone thru without any. When my eyes are really bad I go blind...so I am looking forward to feel the results and being able to see.
People are so weird Judy...so anytime my eyes are closing up tight and strangers will actually come up to me and ask what's wrong with my eyes...if I had more guts I'd ask what was wrong with their face haha. Actually I wouldn't....I'm not so rude!
This was the last public post that she made on June 23rd 2016
Ok I've been training Skye (her cat) to "come" on command, to "sit" on command and also to "high 5" on command. I don't push him as I don't want to bore him. Another video but he's definitely understanding what he's been trained to do.
Ignore his hair floating across my floor ~ the shedding never ceases! With all that said...here is Skye doing his thing:
For all who wish to send cards of condolence to Louise's family, here is the address of her daughter.
Leeanne St. Cyr
17325 64A Avenue,
Louise was a long-time supporter of Invest in ME (IiME). The button below will allow you to make a donation to their Biomedical Research Fund through PayPal. Click for more information