On the positive, I feel so happy to not have to visit with anyone, or travel to see anyone, or deal with the eccentricities of family, or have to explain and defend my need for rest and/or accommodation. I can just be kind to my body, lay in my own bed, eat when I'm hungry etc.
Being crashed is mentally and emotionally tough. Feeling ill all day, then getting up and doing it all over again is wearing, but for now, I'm "fighting the fight". Although, to be honest, it doesn't feel like fighting as much as enduring a lot of the time. I read a great post recently that someone in my online M.E. support group posted and it was very insightful about what it means to accept and live with illness and limitations.
Here is a link if you are interested.
blog.tarabrach.com/2013/02/meeting-our-edge-and-softening.html
And on a sad note, hearing that a fellow patient this week killed himself (the third I've heard of this year) was heartbreaking. He had been mostly bed bound, and sick for over 25yrs!, but despite this he was a huge advocate for the illness and the founder of May 12 as a day of advocacy and remembrance for M.E. as well as a few other conditions. I feel no judgement about the suicide; this is a hard life we live. It makes me want to reach out to others with this illness even more, to help them know that they are not alone.
It also makes me terribly angry that so many people are so very ill and little is done to research the illness. More money goes to researching hay fever a year than to an illness where 50% of people are too sick to work even part-time, and many are confined to home and even bed.
I've been thankful this week for the support I do receive from friends and cyber friends. I don't think I would manage without this support.
For example, the Canada postman showed up today with a box of dark chocolate for me!!!! It was such a surprise and made me smile.
On another completely different note.....
A couple years ago an article came out in Science about a study that had found a retro virus (XMRV) in patients with M.E. After numerous debacles, it was concluded that the science was faulty and the results a mistake. It was heartbreaking for many that have been sick a long time. Finally, someone could explain the cause of M.E. which of course meant that treatment possibilities would emerge fairly quickly!
I have avoided getting excited about any kind of research since.
One good thing that came out of the rigmarole is that a very well known "virus hunter" was intrigued when the false XMRV virus results were uncovered and since has been doing research trying find any kind of pathogen or immune dysfunction in M.E. patients. Here is an article that came out this week about his research, although no results have been officially published yet. So far, he still believes there might be a pathogen involved due to the immune dysfunctions they have uncovered in people with M.E.:
I'm so glad to read that you are back home. I agree it's really not exactly fighting back, my 'fight' is to try and do one meaningful thing each day, meaningful to me. I've started to follow up on researching my family history. If I can manage a half hour to 45 minutes in my own little world I'm 'happy.' That is if I can clear my mind from all the regrets (places I've never seen and never will, rarely seeing my grand daughter). Well, I've babbled on as usual. Those are two wonderful links, thankyou. What are you reading, any recommendations. I remember your long book list from last year. I re read 'Twin' recently (Kindle) by Allen Shawn, he writes so well. Now that you are back home and with a little more time I'm sure you'll recover from the crash. From Leah
ReplyDeleteLeah, I'll let you know a few of my favourites from this year. I liked Orphan Train and gave that to my mom and she read it in a weekend. We don't often overlap but it was just so good. This year I also liked "the Language of flowers", "wonderstruck" which is for teens, but just beautifully done, "the unlikely pilgramage of Harold Fry" (I just cried and cried), and "the snow child" which is about a couple who homestead in Alaska and wish for a child. These were my favourites so far this year. It's hard not to be overwhelmed with the regrets isn't it? Sounds like you make the most of your moments which is all we can do.
ReplyDelete"I can just be kind to my body, lay in my own bed, eat when I'm hungry etc."
ReplyDelete---yes, be kind to our bodies.
i too recently tried a little social life but soon i found it did me more damage than good. so i decided to stop it. having classes is enough "social" for me, the rest of the time i would devote to myself.
i doubted XMRV from the beginning. never bothered to get into it deeper.
so sorry to hear that someone committed suicide.
i too feel modern medicine did not do enough to all these unknown chronic illnesses. their treatment for these illnesses are arbitrary and arrogant. i think they do more harm to patients like ME and cancer.
hope you get better soon!
upnorth, i wonder where did you read the news of the fellow patient committed suicide?
DeleteYun Yi, his name was Thomas Hennessy Jr, and I saw it when a friend on facebook posted something. Then I did some research and read about all he had done to advocate for the illness and sufferers. You are right about modern medicine. At the same time, I have had some bad experiences with alternative medicine too where the culture if you don't get better seems to be "then you don't really want to" which is really unfair and degrading. I think someday they will find out what is causing this and young people who get ill in the future won't face the skeptisism and disrespect that we have...which is the last thing an ill person needs on top of being ill. That's my hope anyways.
DeleteThanks upnorth. I found his page and shared some link. I did not know he was the founder of invisible illness awareness day.
DeleteI too had very bad experience with Chinese medicine. Somehow this time it works. Of course, I need to wait longer to tell for sure.