The slope has been downward trending. In fact I feel like I'm laying prone at the bottom of the slope. Usually for me these things (thankfully) are temporary.
For a couple of weeks now I've been especially fatigued, lightheaded (POTsy) and it hurts to breathe, like when I'm crashed...it's a dull ache/heaviness in my chest. Otherwise, my viral symptoms are no worse than usual (just like a very low-grade cold virus). However, the fatigue has been colossal. My legs get shaky standing briefly and every action seems overwhelming, like breaking through an impossible inertia. It's like when I had first had mono but the fatigue is times two.
I've stopped seeing Dr.s after the last specialist (gynaecologist) who told me on three occasions that thankfully I was "perfectly healthy". From a very pragmatic point of view, what's the point of seeing medical professionals if they don't even acknowledge the illness? These people are obviously not going to help me in anyway, and I waste my time and energy going to them. And while I know perfectly well that I'm ill, I don't need the added hurt and disappointment when someone who's supposed to have some knowledge completely discounts what I am experiencing.
I take my father every few months to the NP who is also my physician (but who I've mostly stopped seeing). Last time we went in, she really wanted me to make an appointment so I obliged...the appointment is for mid Feb. However, I did the blood work for the appointment this week and since I can sign in and see my blood results online, I noticed that my WBC was down to 3 which is leukopenia (normal range is 4-11). I also have mild neutropenia. While I'm sure I'll get a call from my NP, I know there is nothing to be done about it.
In the early days of M.E. I had a few counts even lower than this, and they checked me for all the stuff - cancer, auto immune etc. etc. only to find nothing definitive. I am NOT going to waste my time and energy again. Still, it is nice to see something on paper confirming that "hey, your immune system is exhausted". It is. Every cell in my body is tanked right now.
I'm pretty sure I can figure out why too. It's from taking on too much. I'm looking out for my dad, I'm teaching an online course, and I was attempting some very gentle exercise there for a bit. My body is saying "enough". Also, it's winter, not usually a time of year where I'm very resilient.
Tuesday, January 31, 2017
Friday, January 27, 2017
Being out in the World
Some of us with M.E. from time to time are well enough to attempt to get out in the world. I do this in a couple of ways. Sometimes I attend an agility class with my dog. I adapt it to where I can participate. I spend a lot of it sitting on the floor because of POTS, I do only a few of the activities/training exercises and take lots of breaks, I also have them turn out some of the lights in the classroom as they trigger dizziness. Otherwise, I do very little out in the world. I occasionally run a quick errand, or go over to my dad's to check in on him...but overall, I just can't manage. I have someone else grocery shop for me, or run the majority of my "out in the world" errands.
If I do get out:
I feel horrible - like with influenza or a terrible cold
I'm dizzy - POTS dizzy which is light-headed, or M.E. dizzy which is a spaced out/off-kilter feeling
I get weak and shaky especially if the outing entails standing
I crash so bad a day or two later I never want to try again
The best outings for me are short, don't involve me driving, and take place outdoors. I suffer fewer symptoms outdoors than in closed spaces where the stimuli and artificial lighting do me in.
So this week I decided I needed an item of clothing and went to two stores. While in the stores, I was weak and shaky and dizzy, it reminded me why the event is so rare, which made me realize how seldom I'm out in the world. I saw people everywhere - out shopping, out driving, walking around and it brought home how isolated I am, and really just how different my life is from that of a normal 40 something. It reminded me that most people are out in the world every day!
I just don't go out much. Once a year I try to rally and make it to a movie...it is a rare thing. But I don't go to a workplace, I mostly don't shop for myself, I rarely attend social events, restaurants leave me shaky and dizzy so I rarely go out to eat. Because it's hard to even sit up for hours at a time, I just don't get out much. This shopping event gave me a moment of clarity where I realized what a crazy life I've lead the last 15 years.
That brief outing into the world reminded me how disabled and different my life is, how I create a bubble around myself that makes me feel a little bit more normal, but in reality I can't manage some of the very simple everyday things people do.
I was discussing with a friend (who also has M.E.) recently about severity. I had said something about my case of M.E. being moderate/mild and she was shocked I'd think of myself as mild. Maybe because I'm aware of how severe and life limiting M.E. can be and I know I am blessed and lucky to be managing things...things like working part time (from home in bed), things like going for very short gentle walks, or even cooking for myself.
Going to the store this week and seeing all the people out and about reminded me how limited I really am. I'd say I probably function at 20-30 percent of what a healthy person my age would, so when viewed that way I guess I'm pretty severely effected by this disease. But when the gage is compared to others who suffer M.E. I'm probably moderate. Just goes to show what a shi*&y illness this is.
And honestly, does it really matter where I am on the scale of severity, or what my life would be like in an alternate universe were I healthy? I don't really think it does. I just have to plow on the best I can, doing what I can manage. And I guess I need the occasional reminder that there's a reason I'm not out in the world much. It's because it triggers such terrible symptoms and makes me so much sicker. There is some "sense" in living in a bit of a bubble, I don't want to loose the function I do have.
If I do get out:
I feel horrible - like with influenza or a terrible cold
I'm dizzy - POTS dizzy which is light-headed, or M.E. dizzy which is a spaced out/off-kilter feeling
I get weak and shaky especially if the outing entails standing
I crash so bad a day or two later I never want to try again
The best outings for me are short, don't involve me driving, and take place outdoors. I suffer fewer symptoms outdoors than in closed spaces where the stimuli and artificial lighting do me in.
So this week I decided I needed an item of clothing and went to two stores. While in the stores, I was weak and shaky and dizzy, it reminded me why the event is so rare, which made me realize how seldom I'm out in the world. I saw people everywhere - out shopping, out driving, walking around and it brought home how isolated I am, and really just how different my life is from that of a normal 40 something. It reminded me that most people are out in the world every day!
I just don't go out much. Once a year I try to rally and make it to a movie...it is a rare thing. But I don't go to a workplace, I mostly don't shop for myself, I rarely attend social events, restaurants leave me shaky and dizzy so I rarely go out to eat. Because it's hard to even sit up for hours at a time, I just don't get out much. This shopping event gave me a moment of clarity where I realized what a crazy life I've lead the last 15 years.
That brief outing into the world reminded me how disabled and different my life is, how I create a bubble around myself that makes me feel a little bit more normal, but in reality I can't manage some of the very simple everyday things people do.
I was discussing with a friend (who also has M.E.) recently about severity. I had said something about my case of M.E. being moderate/mild and she was shocked I'd think of myself as mild. Maybe because I'm aware of how severe and life limiting M.E. can be and I know I am blessed and lucky to be managing things...things like working part time (from home in bed), things like going for very short gentle walks, or even cooking for myself.
Going to the store this week and seeing all the people out and about reminded me how limited I really am. I'd say I probably function at 20-30 percent of what a healthy person my age would, so when viewed that way I guess I'm pretty severely effected by this disease. But when the gage is compared to others who suffer M.E. I'm probably moderate. Just goes to show what a shi*&y illness this is.
And honestly, does it really matter where I am on the scale of severity, or what my life would be like in an alternate universe were I healthy? I don't really think it does. I just have to plow on the best I can, doing what I can manage. And I guess I need the occasional reminder that there's a reason I'm not out in the world much. It's because it triggers such terrible symptoms and makes me so much sicker. There is some "sense" in living in a bit of a bubble, I don't want to loose the function I do have.
Thursday, January 19, 2017
An Amazing TED Talk!
Here is a really good TED Talk on the history and plight of those with M.E. and others with hard to explain or yet-to-be understood illnesses. As a sick/ill population, our continued dismissal by most of the medical establishment and general public is part of a larger pattern which includes the marginalization of women and those with yet-to-be understood diseases.
But Jennifer Brea says it better, so here you go. I highly recommend watching this and urge anyone who reads this blog to take 15 minutes of your time to do so: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-5190
But Jennifer Brea says it better, so here you go. I highly recommend watching this and urge anyone who reads this blog to take 15 minutes of your time to do so: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-5190
Monday, January 9, 2017
Short-Term Memory
I'm guessing this will not apply to everyone with M.E. as I realise that if someone is severe, there often isn't a lot of fluctuation. And for those who are moderate and mild, maybe you have learnt to not over-do, to live within your limits?
I am not severe and while I don't live the extremes I did during the first few years of illness, I follow the relapsing remitting path and engage in the push/crash cycle all too often.
I seem to forget (over and over and over) on my better days how awful and crippled and sick I am on my "not" better days. Even if it's only been 24 hours! I mean if you asked me on a good day I would tell you that the bad days or crash days are horrible, but in reality, it's hard for me to really believe it, even if I've just been through a recent bad spell.
And so, I:
- do too much because I'm not feeling too sick on a "better" day
- tell myself "I'm really not that sick, it's not that bad"
- tell myself, "you really could do more, earn a living, exercise a bit more, leave the house more."
- figure I must be improving/improved
But then, because M.E. is a condition where the repercussions of too much activity often don't hit until a day or two later, a day or two later I'm laying in bed asking myself "Why did I do that thing/activity?" "How come after 14 years of this that I keep over doing it and ending up here?" "Am I stupid?"
Sigh
Am I the only one who overestimates my abilities on those days when I'm not as sick?
I am not severe and while I don't live the extremes I did during the first few years of illness, I follow the relapsing remitting path and engage in the push/crash cycle all too often.
I seem to forget (over and over and over) on my better days how awful and crippled and sick I am on my "not" better days. Even if it's only been 24 hours! I mean if you asked me on a good day I would tell you that the bad days or crash days are horrible, but in reality, it's hard for me to really believe it, even if I've just been through a recent bad spell.
And so, I:
- do too much because I'm not feeling too sick on a "better" day
- tell myself "I'm really not that sick, it's not that bad"
- tell myself, "you really could do more, earn a living, exercise a bit more, leave the house more."
- figure I must be improving/improved
But then, because M.E. is a condition where the repercussions of too much activity often don't hit until a day or two later, a day or two later I'm laying in bed asking myself "Why did I do that thing/activity?" "How come after 14 years of this that I keep over doing it and ending up here?" "Am I stupid?"
Sigh
Am I the only one who overestimates my abilities on those days when I'm not as sick?
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