Well, the blocked sewer actually broke a mechanical industrial grade snake!! While there are no trees on my property, the sewer is blocked solidly by roots, and may even be collapsed.
Then, I had someone with a "locator" come in to find where exactly the blockage is, and it's (thankfully) outside the house. Now the front has to be excavated - worst case scenario, all the way to the road.
Meanwhile, this house often smells like a nasty garbage pile, especially on wet days, I've nick-named it "the outhouse".
Question: Does someone who's disabled by M.E. have the energy/health to even deal with plumbers and workers (leg work), let alone the money while on social assistance to pay for these types of issues?
Answer: Absolutely not.
I guess I am "dealing" with them, but not without consequences.
I'm so shaky right now just having had to chat with a very nice (also good looking) plumber for 10 minutes, as well as walk up and down the stairs 2X!!!
I really wish right now that:
a) I had a house that wasn't an old fixer upper, and was small enough that I felt I could manage it.
b) Someone who understood how ill I was, and could be the go-to person to deal with these repairs and the people who are going to make them. (Someone without a life I guess, because they'd have to be around). What I really need is a fairy god mother of sorts.
At least I do have some back-up financial help if I need it, although it always feels like begging. I'm so sick of being a needy, begging, lay-about. I SO want my healthy life back, one where I had a sense of independence and ability. And I want some kind of possibility to create income for myself. Sometimes I find ways to accept my life as is, and make the best of it, other times, it is very hard not to wish for my healthy, disease-free body back.
Oh and to make things even more fun, after having my car back two days, I got into it on Friday to go to the corner store and it wouldn't START!!!! We are up to four times in the shop since spring, and 3 in the last few weeks, jeez!
On the plus side, at least I have the nicest garage in the city.
The other plus, is the plumber that's helping me out, is a friend of my roommate's boss, and super nice, willing to do what he can to make economical fixes/repairs.
I keep telling myself, "One day at a time, cope/manage with just this next hour".
Who's interested in the day to day struggles of one chronically ill woman? I guess it's just nice to have a place to write them down.
Monday, July 20, 2015
Wednesday, July 15, 2015
Everything at once...
"When it rains, it pours"
Well I guess it's all a matter of perspective, meaning it could be a whole lot worse, I realise. But lately, it seems like everything is NOT coming up roses for me:
1. My car is in the shop for the 3rd time in a matter of a couple months. They were willing to patch the exhaust again, but they said not to bring it back next time, take it to a muffler shop. My car is 20 years old, and since I only do the occasional errand, I use it very little. But I have NO resources to replace it, so would like to keep it puttering along.
2. The plumbing in the house is having issues, which I can't afford. I have someone who's looked at the situation and will give me an estimate soon. But the long and short of it, is the house was plumbed in the 40's and there are some problems. Which lately amounts to a nasty nasty smell when it rains, which brings me to number 3:
3. I've been pretty badly crashed since Sunday, and at least one day of this included laying on the couch smelling skanky nastiness the whole day, with no option for escape (yes, all the windows were open), because I was too ill to go out, and it was raining. I kept a pot of cinnamon, cloves and allspice simmering all day to try to cover the smell - it didn't work. I keep meaning to set up my tent when I'm feeling a bit better, so if we have another stinky rain-day, I could at least go out and lay there. Hopefully this guy gives me a reasonable estimate so I can get this resolved soon…..still waiting.
4. I'm feeling sick of being poor and overwhelmed by the costs of living.
5. Did I mentioned I'm crashed? Today this includes a fever, body aches, hurts to breath like influenza, sore throat, and weakness (again).
On the positive, I now have a "rough" draft of my dissertation, however, I need to go back and re-write the first three chapters.
Nonetheless, feeling so poor and helpless had me online looking for job options, but despite my massive amounts of education, this stupid illness makes it so hard. Starting maybe around January, I'd like a part time job (approx 10 hours a week or less) that I can do mostly from home (and bed), and on a flexible schedule…loose deadlines, because I can't predict when I'll be flared. I didn't see a single job that would fit that, although I do think there is some online teaching or writing out there for me somewhere. Best, I guess to cross that bridge…..
P.S. since writing this I did set up my tent, which makes me feel better about the next rainy day, as I now have somewhere to escape to (reading a book in my tent will be a lot better than smelling nasty grossness all day), it will be like camping :) .
Well I guess it's all a matter of perspective, meaning it could be a whole lot worse, I realise. But lately, it seems like everything is NOT coming up roses for me:
1. My car is in the shop for the 3rd time in a matter of a couple months. They were willing to patch the exhaust again, but they said not to bring it back next time, take it to a muffler shop. My car is 20 years old, and since I only do the occasional errand, I use it very little. But I have NO resources to replace it, so would like to keep it puttering along.
2. The plumbing in the house is having issues, which I can't afford. I have someone who's looked at the situation and will give me an estimate soon. But the long and short of it, is the house was plumbed in the 40's and there are some problems. Which lately amounts to a nasty nasty smell when it rains, which brings me to number 3:
3. I've been pretty badly crashed since Sunday, and at least one day of this included laying on the couch smelling skanky nastiness the whole day, with no option for escape (yes, all the windows were open), because I was too ill to go out, and it was raining. I kept a pot of cinnamon, cloves and allspice simmering all day to try to cover the smell - it didn't work. I keep meaning to set up my tent when I'm feeling a bit better, so if we have another stinky rain-day, I could at least go out and lay there. Hopefully this guy gives me a reasonable estimate so I can get this resolved soon…..still waiting.
4. I'm feeling sick of being poor and overwhelmed by the costs of living.
5. Did I mentioned I'm crashed? Today this includes a fever, body aches, hurts to breath like influenza, sore throat, and weakness (again).
On the positive, I now have a "rough" draft of my dissertation, however, I need to go back and re-write the first three chapters.
Nonetheless, feeling so poor and helpless had me online looking for job options, but despite my massive amounts of education, this stupid illness makes it so hard. Starting maybe around January, I'd like a part time job (approx 10 hours a week or less) that I can do mostly from home (and bed), and on a flexible schedule…loose deadlines, because I can't predict when I'll be flared. I didn't see a single job that would fit that, although I do think there is some online teaching or writing out there for me somewhere. Best, I guess to cross that bridge…..
P.S. since writing this I did set up my tent, which makes me feel better about the next rainy day, as I now have somewhere to escape to (reading a book in my tent will be a lot better than smelling nasty grossness all day), it will be like camping :) .
Thursday, July 9, 2015
Breaking the cycle
After a week or more of doing well (except POTS), and despite having travelled, the M.E. flared. I am back to feeling quite ill and weak, no energy at all. Zilch. I got out of bed this morning and had a swooping black-out. The viral symptoms have increased (my sore throat kept me up much of the night), and I feel like every cell in my body has been poisoned, it hurts to breathe….and my mood, which has been so decent (I thought two months on St. John's Wort was making a difference) plummeted. It plummeted because I can't do much more than lay in bed. And while laying here, it's hard to distract myself from how sick I feel, how helpless. To wallow in self-pity.
And it only took a week of feeling decent for the internal dialogue to start: "I'm sure you could work at least part-time if you tried", "You exaggerate how sick you feel most the time.", "Most people would manage to do more despite having M.E.".
And of course, feeling a little better means I almost always push things and do more….I worked on some art, went to the dog yard, ran a couple errands, even went over to some friends house for a short visit. Now I wish I'd done none of it, stayed here in my little cocoon instead, avoided the crash. Now I have to live through this flare that will last how long? I have no idea.
On the other hand, I don't think I'll ever stop making the most of my few decent days, I just wish I could stop telling myself during them that I'm lazy or a lay-about, or somehow not doing the best I can. Or the internal dialogue that if I manage to do something like travel, it means I'm not disabled by illness. (And a decent day is relative, I don't mean I'm able to sit up all day or go for a walk or grocery shop, just an outing of an hour, or 4 hours sitting up a day, rather than one or two).
I should come here when I'm feeling decent, just to remind myself to use a modicum of caution as I enjoy the "better" moments/days (not as a downer). The reality is, when I'm feeling a bit better, I avoid anything to do with being sicker and more limited (including thinking about it), I try my best to put it out of my mind.
And it only took a week of feeling decent for the internal dialogue to start: "I'm sure you could work at least part-time if you tried", "You exaggerate how sick you feel most the time.", "Most people would manage to do more despite having M.E.".
And of course, feeling a little better means I almost always push things and do more….I worked on some art, went to the dog yard, ran a couple errands, even went over to some friends house for a short visit. Now I wish I'd done none of it, stayed here in my little cocoon instead, avoided the crash. Now I have to live through this flare that will last how long? I have no idea.
On the other hand, I don't think I'll ever stop making the most of my few decent days, I just wish I could stop telling myself during them that I'm lazy or a lay-about, or somehow not doing the best I can. Or the internal dialogue that if I manage to do something like travel, it means I'm not disabled by illness. (And a decent day is relative, I don't mean I'm able to sit up all day or go for a walk or grocery shop, just an outing of an hour, or 4 hours sitting up a day, rather than one or two).
I should come here when I'm feeling decent, just to remind myself to use a modicum of caution as I enjoy the "better" moments/days (not as a downer). The reality is, when I'm feeling a bit better, I avoid anything to do with being sicker and more limited (including thinking about it), I try my best to put it out of my mind.
Sunday, June 28, 2015
Quick Hello.
Hello to my readers.
I have returned home to the northland (north is relative) from visiting my parents, and am recovering from travel. I'm also without a car (it has no breaks) which is a good thing. It means I can't run out and do even a small errand, and therefore am forced to stay home, rest and recover.
I'm not having a terrible crash from my trip (yet). I'm not feeling great either, but nothing extreme. On the other hand, as often happens in the summer, the POTS is terrible. Just a quick walk out to the back garden had my heart rate at 165 and BP 99/70. I checked it when I came in the house as I had that 'desperate' feeling I get, like I just have to lay down (shaky, head pounding, light-headed).
My gardens are coming along, meaning I may get some veggies in late August and September, fingers crossed. Watching my plants grow is one of my favourite things about summer.
And I will (at some point) post a few of the photos I took at my parent's.
Here's a little photo and video of a rabbit at their place in the mean time.
I am making progress on my dissertation writing, it is slow going, I'm not happy with what I've written on the whole, but it's getting there nonetheless.
I have returned home to the northland (north is relative) from visiting my parents, and am recovering from travel. I'm also without a car (it has no breaks) which is a good thing. It means I can't run out and do even a small errand, and therefore am forced to stay home, rest and recover.
I'm not having a terrible crash from my trip (yet). I'm not feeling great either, but nothing extreme. On the other hand, as often happens in the summer, the POTS is terrible. Just a quick walk out to the back garden had my heart rate at 165 and BP 99/70. I checked it when I came in the house as I had that 'desperate' feeling I get, like I just have to lay down (shaky, head pounding, light-headed).
My gardens are coming along, meaning I may get some veggies in late August and September, fingers crossed. Watching my plants grow is one of my favourite things about summer.
And I will (at some point) post a few of the photos I took at my parent's.
Here's a little photo and video of a rabbit at their place in the mean time.
I am making progress on my dissertation writing, it is slow going, I'm not happy with what I've written on the whole, but it's getting there nonetheless.
Tuesday, June 16, 2015
Happy Sickaversary to M.E.
Well June 16th was the day I came down with a bad case of mononucleosis in 2002. While I was stressed out at the time (I had a lot on my plate) I wasn't physically ill until Sunday June 16th 2002. It wasn't like feeling "off", it was like being hit with a brick in the head. Fever, sore throat, dizzy, shaky, sweating. So it's my sickaversary. I've been ill every day now for more than a decade. I'm a completely different person due to suffering a disabling case of M.E. But it was so long ago now that I became sick, it's hard to remember that other life. I had no idea how lucky I was to be able to work, play, socialize, drive.
I've been visiting my folks who are getting quite old, and are in poor health. However, there's not too much I can do to help as I'm ill myself, and not up to outings. I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful. She provides me with company, entertainment, and emotional support. I'm SO glad I brought her.
I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat. (The plane was completely full, so no chance of moving). I had to sit cross legged with my torso turned sideways for 2 1/2 hours. Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS. However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.
My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens. I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels. Then add the manicured lawns and flower gardens! Maybe I'll take some photos to share.
I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week). On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are. As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.
I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion. Lucky them. While I have no doubt they are "exhausted", really, I believe they are exhausted, I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.
I've been visiting my folks who are getting quite old, and are in poor health. However, there's not too much I can do to help as I'm ill myself, and not up to outings. I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful. She provides me with company, entertainment, and emotional support. I'm SO glad I brought her.
I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat. (The plane was completely full, so no chance of moving). I had to sit cross legged with my torso turned sideways for 2 1/2 hours. Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS. However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.
My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens. I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels. Then add the manicured lawns and flower gardens! Maybe I'll take some photos to share.
I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week). On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are. As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.
I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion. Lucky them. While I have no doubt they are "exhausted", really, I believe they are exhausted, I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.
Thursday, June 4, 2015
Blossoms and Birthdays
I thought I'd post a few photos of some flowers that are in bloom around the yard. I love the neighbour's crab apple when it blooms each year (some of the branches are in my yard). In the front garden, the moss flox are in bloom.
This time of year I constantly over-do it putting in gardens, despite the fact that I have lots of help.
On the positive, as the temps warm up I get to spend more time outside, as I don't have to move to stay warm. I can just plop myself out there and enjoy the sun, the birds, the trees and flowers.
So far (we're only an hour or two in), I am less ill than I was on my Birthday last year. Last year I had a horrible crash that coincided with my Birthday and left me feeling really down. This year (so far) I'm not feeling as horrible. Small blessings.
Finally, the daughter of someone I know wrote a good article about M.E. One of the best "popular" media type of articles I've ever seen. It doesn't say, for example, that M.E. is about "being tired". It gives snapshots of how severe and devastating a disease it can be. The other thing I liked, was the perspectives that came out of her personal connection to the illness (her mother has it).
http://www.vice.com/en_uk/read/this-is-the-reality-of-living-with-me-162
My PhD writing has taken a dive this week as I had a really bad attack of "urinary tract infection" that kept me from sleeping. I put UTI in quotes, because it's all the symptoms of a UTI without being a UTI.
It coinsided with an appointment to my NP, and she sent in a culture and perscribed an antibiotic because the dip test was borderline. To be honest, I've had these attacks for years, usually during PMS, but they mostly just last a few hours.
This bout is still happening although it's calmed down. I'm almost sure I have cystitis, but since I don't want another syndrome like condition added to my chart, I've avoided talking about it to my NP.
Mostly, I've been able to cope, although if makes a habbit of keeping me from sleep, I might have to see what options are available. Does anyone who reads this have IC?
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