Really I have very little to report or discuss. My life is pretty same-old and monotonous.
I see my dad everyday (sometimes too much). He isn't able to figure out much to do on his own. He listens to music or drives around (and to be honest, he probably shouldn't even be driving). I spent a lot of time entertaining him last week and I am ready for a break, but he shows up or calls multiple times a day with "problems" which are really just an excuse for my company...but at least he's not living with me day in and day out.
This weekend is convocation. I didn't think it was worth it to go to my Masters one 7 or 8 years ago because I knew it would be very challenging while ill, but in retrospect I wish I had so my mom could have been there. I decided to go to my PhD one because I've actually never been to a graduation ceremony since high school and my mom kept discussing coming to it the last few years. I'm so sad she can't be here.
I contacted the university about accommodations so I will not have to stand in line or stand at all if I'm not up for it (except to walk across the stage). I have 7 people (friends and family) coming to watch!! On the one hand, it will likely be pretty dull, on the other hand, I am pretty excited. My brother and niece decided last minute to fly out and my good friend A. and her son are coming up from Minnesota so I am trying to rest up.
Otherwise my days are spent doing little garden tasks, resting, and working on prepping my summer course. I'm considering saying goodbye to this blog as I'm not sure how much more I can "offer" the world through my writing, although when I'm sicker, I really love having the outlet. This week I am doing quite well health-wise so I feel less need for it.
Anyways, hoping all my readers are AWAP (as well as possible)
Tuesday, May 24, 2016
Thursday, May 19, 2016
Great comic on the experience of PEM (post exertional malaise)
Hi friends,
I will do a proper update soon, but for now I wanted to share this. It is very timely given my previous post as well:
https://laurachamberlain.co.uk/2016/05/12/the-m-e-adventures-comic-energy-and-exertion-meawareness/comment-page-1/#comment-245
I showed it to my roommate and she also appreciated it given she watches me suffer PEM often.
I will do a proper update soon, but for now I wanted to share this. It is very timely given my previous post as well:
https://laurachamberlain.co.uk/2016/05/12/the-m-e-adventures-comic-energy-and-exertion-meawareness/comment-page-1/#comment-245
I showed it to my roommate and she also appreciated it given she watches me suffer PEM often.
Monday, May 9, 2016
Over-doing it M.E. style.
For many reasons I've been overdoing it lately with yucky consequences. First, my dad calls and comes by often. I do more than I should physically to keep him company, entertain him, help him with managing his mail and finances etc. While I am glad that I can be here for him, sometimes I wish there was at least one other person in his life who could help with some of this.
Second, I've been doing a dog sport with my dog since she was two (on and off for 6 years). It's at a very slow pace (we've learned things over 5 years that took people in our class 6 mo or less). We learn slower because I miss 1/3 to 1/2 the classes, and when I attend class--due to dizziness and weakness I sit out on much of it. Still, we are at the point now where we can compete this summer in the disabled class if I'm up to attending, and if we can practise some more skills that enable me to walk less during the events (each event is less than a min but still difficult for me). I have been practicing despite dizzy spells and sometimes crashes. I really want to do this but it's coming at a cost.
Third, I'm planning a course that I'm teaching online this summer and this involves working a couple hours every morning. I am making progress but still, I will need every hour I can manage to have the course ready by July, I want it to be a stellar course.
So I've been feeling crashed and quite ill often lately, some of it from doing too much. For those who've experienced PEM (post exertional malaise), you can completely understand. For those who are healthy or suffer other illnesses, I very much doubt you can fathom PEM by no fault of your own, you have to experience it to get it. (On that note, if one more person tells me "they get tired too, so I know how you feel" I will slug them, seriously!!!).
PEM is not fatigue and it is super hard to describe. It is a biological reaction to activity...In fact, there are multiple studies that show when people with M.E. are active, 24-48 hours there are measurable metabolic, cardiovascular, and immune effects. Personally, for me, it's like having run a 10K during the absolute worst day of a bad cold or influenza (without the fever or congestion - although I do get slight fever sometimes). If I do an outing with my dad one day, for example, the next day I'm achy, weak (so weak that it's difficult to lift my arms or even type and if I do my muscles shake, it's difficult to stand for even a minute), sore throat, my armpit lymph nodes ache, I'm dizzy and lightheaded, and I feel as if every cell in my body is poisoned - I feel horribly icky and sick.
For the first 5 years of feeling this ill I just wanted to scream because how could I be this sick (without dying) yet look "great" and there was no Dr. or drug that could help? Since then I just want to scream because it goes on and on and on and this is my life. I hate being punished for every little thing I try. When PEM hits, often, I just want to sink into my bed and have it over.
And yet, many of us just go on, right? We spend most our days laying in bed or on the couch. We are probably alone for much of our existence (because social is so draining and we're too sick to go to work or school where we might interact with other humans). We try to eek out our little moments of happiness and fulfillment. We try to change our thinking to make it seem less bad (for example, I tell myself people my age have died of cancer, are in comas, are starving or abused etc. etc.). We try meditation, relaxation etc. to take our minds off how horrible we feel, because we can't distract ourselves with work or exercise because we are too sick and these things would make us much sicker aka PEM. It's a viscous cycle.
May 12th is M.E. awareness day and I've been seeing lots of talk of the Millions Missing campaign.
http://millionsmissing.meaction.net Check it out.
I think the campaign is brilliant and very appropriate. I wish I'd sent a pair of shoes in time to participate. I will never feel "lucky" to have a disease like M.E., where most the population is disabled while simultaneously misunderstood and trivialized by most of the medical profession and the general public. Virtually nothing is spent on research, there is yet to be a single approved treatment. Still, I think of my fellow M.E.ers with severe M.E. all the time and can barely fathom how tough these people are just to get through each day. And as awful as it sounds while I hate having moderate M.E., I am very grateful that that is not me.
Finally, yesterday was mothers day so I tried to avoid Facebook. It was just too hard to see all the posts about everyone's mother and children when I wasn't able to have children and lost my mother so recently. Not that I'm not happy for others, it's just personally too raw right now. I have been missing my mom a lot and still have bouts where I cry inconsolably until I am beyond exhausted. She wasn't the perfect mother, but neither was I the perfect daughter. Our relationship was complicated, but the last 10-15 years we've been good friends. I miss her friendship most of all.
Here's a fun photo I found recently from 8-10 years ago. Also one taken of our family when I was still a little baby (my youngest brother wasn't born yet).
Second, I've been doing a dog sport with my dog since she was two (on and off for 6 years). It's at a very slow pace (we've learned things over 5 years that took people in our class 6 mo or less). We learn slower because I miss 1/3 to 1/2 the classes, and when I attend class--due to dizziness and weakness I sit out on much of it. Still, we are at the point now where we can compete this summer in the disabled class if I'm up to attending, and if we can practise some more skills that enable me to walk less during the events (each event is less than a min but still difficult for me). I have been practicing despite dizzy spells and sometimes crashes. I really want to do this but it's coming at a cost.
Third, I'm planning a course that I'm teaching online this summer and this involves working a couple hours every morning. I am making progress but still, I will need every hour I can manage to have the course ready by July, I want it to be a stellar course.
So I've been feeling crashed and quite ill often lately, some of it from doing too much. For those who've experienced PEM (post exertional malaise), you can completely understand. For those who are healthy or suffer other illnesses, I very much doubt you can fathom PEM by no fault of your own, you have to experience it to get it. (On that note, if one more person tells me "they get tired too, so I know how you feel" I will slug them, seriously!!!).
PEM is not fatigue and it is super hard to describe. It is a biological reaction to activity...In fact, there are multiple studies that show when people with M.E. are active, 24-48 hours there are measurable metabolic, cardiovascular, and immune effects. Personally, for me, it's like having run a 10K during the absolute worst day of a bad cold or influenza (without the fever or congestion - although I do get slight fever sometimes). If I do an outing with my dad one day, for example, the next day I'm achy, weak (so weak that it's difficult to lift my arms or even type and if I do my muscles shake, it's difficult to stand for even a minute), sore throat, my armpit lymph nodes ache, I'm dizzy and lightheaded, and I feel as if every cell in my body is poisoned - I feel horribly icky and sick.
For the first 5 years of feeling this ill I just wanted to scream because how could I be this sick (without dying) yet look "great" and there was no Dr. or drug that could help? Since then I just want to scream because it goes on and on and on and this is my life. I hate being punished for every little thing I try. When PEM hits, often, I just want to sink into my bed and have it over.
And yet, many of us just go on, right? We spend most our days laying in bed or on the couch. We are probably alone for much of our existence (because social is so draining and we're too sick to go to work or school where we might interact with other humans). We try to eek out our little moments of happiness and fulfillment. We try to change our thinking to make it seem less bad (for example, I tell myself people my age have died of cancer, are in comas, are starving or abused etc. etc.). We try meditation, relaxation etc. to take our minds off how horrible we feel, because we can't distract ourselves with work or exercise because we are too sick and these things would make us much sicker aka PEM. It's a viscous cycle.
May 12th is M.E. awareness day and I've been seeing lots of talk of the Millions Missing campaign.
http://millionsmissing.meaction.net Check it out.
I think the campaign is brilliant and very appropriate. I wish I'd sent a pair of shoes in time to participate. I will never feel "lucky" to have a disease like M.E., where most the population is disabled while simultaneously misunderstood and trivialized by most of the medical profession and the general public. Virtually nothing is spent on research, there is yet to be a single approved treatment. Still, I think of my fellow M.E.ers with severe M.E. all the time and can barely fathom how tough these people are just to get through each day. And as awful as it sounds while I hate having moderate M.E., I am very grateful that that is not me.
Finally, yesterday was mothers day so I tried to avoid Facebook. It was just too hard to see all the posts about everyone's mother and children when I wasn't able to have children and lost my mother so recently. Not that I'm not happy for others, it's just personally too raw right now. I have been missing my mom a lot and still have bouts where I cry inconsolably until I am beyond exhausted. She wasn't the perfect mother, but neither was I the perfect daughter. Our relationship was complicated, but the last 10-15 years we've been good friends. I miss her friendship most of all.
Here's a fun photo I found recently from 8-10 years ago. Also one taken of our family when I was still a little baby (my youngest brother wasn't born yet).
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