Louise Ramage was an online friend who I felt close to. So sad, RIP Louise.

Louise had Myalgic Encephalomyelitis (ME).  She took 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:

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

We relived some of our good memories together and we celebrated when we were well enough to create some new memories with our families.

....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

The neuromuscular effects of ME on Louise she called Blepharospasm.  It drove her nuts and it was very painful.  She could barely afford treatment.

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:

https://www.facebook.com/louise.ramage1/videos/10154193873555930/

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,
Surrey, B.C.
Canada
V3S 0P5

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

Not Jodi Bassett - not fair. Fly free humming bird.

This post sums up Jodi's passion

Jodi left us on June 11.  She was 39 and I have her Kindle book...probably the first book that I ever bought after I became enlightened about chronic fatigue syndrome (CFS) being a totally different dis-ease than Myalgic Encephalomyelitis (ME).  No syndrome is taken seriously by doctors but at the same time, none of my doctors will even speak of Myalgic Encephalomyelitis because they don't really know what it is so CFS is a word that I still have to use in Australia knowing that what I was saying about myself was actually a misdiagnosis.  However, Jodi refused to use CFS to describe herself because ME has been recognised by the World Health Organisation as a neurological disease since 1969 so someone knows it exists in its own right. Why doctors are not taught about ME especially historically over the decades I cannot possibly understand. ME is what Jodi Bassett lived with and died from without it ever being recognised in Australia by mainstream medicine as anything more than someone with a weak constitution as my mother would say.

She was my friend on Facebook answering a question I had back in 2011.  Other than that we had no other direct contact.  Her sites provided my early references and for that I am truly grateful.

Jodi said on her first Hummingbirds website:

The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

M.E. patients that are newly diagnosed, or still in the acute stages especially must be given their best possible chance for recovery and be enabled to REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management/reduction. Limiting activity levels to only as much as the patient is capable of dealing with may well be the single most important factor in the patient’s M.E. improving over time.

Read More

I think you will find that the ones who are dying years before their time are those like Jodi who were given the wrong advice or not given the right advice early enough.  The most obvious contributor to our early deaths is the friendly advice to "keep going at the same pace" whether your body feels like it or not because it proves your strength and it pleases your partner, child and pet. The medical advice that has caused permanent relapse in so many of our friends is the advice to physically exercise and take the advice of a trainer who wants to raise your heart-rate to the maximum allowable for your age.  Non-compliant is what doctors write on your reports if you refuse to do that exercise.  However every time I have been compliant I have eventually relapsed whether it was the gym, TAI CHI, water walking or whole body vibration etc and each relapse results in some permanent loss of your former self in terms of ability and quality of life.  Jodi wanted to save us from that which she experienced and I would that I too could convince you that you must find a way to stay within your own energy envelope.  We actually have more of an oppotunity to do that these days with the help of heart-rate variability monitoring (HRV) which is one step higher than heart-rate monitoring and we have the equipment and software to do it and record it and analyse it now.  It is called self-help. Read about HRV as compiled by Karyn Crimmin

Jodi has another web site produced call Health, Healing and Hummingbirds.  She explains the purpose of the site:

Lately I have been reading as much as I can about health and healing. Some of the information out there is genuinely amazing. So much more impressive and compelling than I had been led to expect.  But finding the little nuggets of gold amongst all the huge piles of worthless junk takes time. Time that many ill people just don’t have.

Health, Healing & Hummingbirds aims to get a summary of the cutting-edge information on health I’ve learned out to people in the earliest stages of their disease. Where it can do the most good.

Photo provided by her father

Jodi was a well-referenced lady on her web sites and her articles are in essence literature reviews from holistic and integrative perspectives involving orthomolecular and environmental medicine while acknowledging the place of traditional medicine.  She promotes deep healing instead of symptom relief alone and she did all this research for us.  As an example she writes:

Glutathione and vitamin C and other antioxidants are not cure-alls, particularly when it comes to the treatment of long-term diseases. But Dr Levy does explain that even where the disease is too far advanced to be reversed the administration of reduced glutathione and vitamin C can at least provide reliable symptomatic relief..

Read More

The following was posted on the West Australian Newspaper's Memorial Page by her Dad, Peter Bassett of Bedfordale, WA

Peter Bassett,

Bedfordale, Western Australia

Contact M

- See more at: http://www.legacy.com/guestbooks/thewest-au/jodi-bassett-condolences/180305608?&eid=viewgb#sthash.PWS06Adg.dpuf

Our daughter Jodi's influence was far, far greater than we had imagined, and she was a tireless crusader for M.E. activism and helping fellow sufferers, as well as a prolific artist of great skill.  And so ill, putting others ahead of herself. Jodi was actually recovering quite well from the M.E., even drove to the park and went to the playground with Leila. Big improvement from being bed-bound.Then the breast cancer struck, eventually spreading, and this is what she couldn't defeat. But boy, did she give it a red hot go. She still had hope right to the end. A really beautiful person.  Monday 27th June

On Thursday, 23 June 2016 another writes:

Hi. I am the editor of the newsletter of the North London ME Network.
For years now, the 'Mainly For The Bedbound' section of the newsletter, written mainly by Jodi, has featured. Jodi has now died, but her work, in the form of tips for people with severe ME, will go on and, in this newsletter, probably for years to come. On behalf of NLMEN, I thank Jodi.
For more: info@nlmenetwork.org.uk

Monday, 27 June 2016