Is there anything I can do to curb my sudden debilitating P.E.M.?
In the past two weeks my P.E.M. has gotten substantially worse, to the extent that I feel the end may be near. Normally I have a rather positive outlook on life, but I just cannot describe how awful, how physically drained, nor how sleepy I've become after physical exertion.
Please note, I've been bed-bound for the past 6 years, and I've never felt quite this badly after muscle exertion
On any given day (20 minutes after having had a bowel movement), the P.E.M. hits hard. Before, the duration of my feeling unwell was between thirty minutes to an hour. Now, I am virtually immobile for up to 12 hours.
I feel nauseous, poisoned, a near constant muscle burn, occasional numbness in my lower extremities, and even have difficulty staying awake.
What's Changed
Carbs
For the past two months I've been sucking on a few gluten-free salsa flavored rice chips each day.. in order to merely "taste" real food. I do not actually swallow the chips (carbs typically destroyed me when I was still able to ingest food orally, causing overall weakness, sweating, and confusion).
Please note, I've had no actual food since February.. severe gastroparesis, but I do have a feeding tube.
Bedsore
I may or may not have a bedsore on my tailbone area. I've been waiting three weeks for a nurse to come out for a visit, and "nobody" keeps showing up. I've been applying turmeric paste to the area, and the wound seems to have closed up, but I cannot lay on my back side due to the pain. Feels something akin to internal bruising.
Bloating
In the past 24-hours, my upper left flank has become very sensitive to the touch, and bloating worsens this discomfort and pain. The area where it hurts most is adjacent to my feeding tube stoma.
Also, coinciding with this sudden downturn, I've been extremely bloated for the past 2 weeks. This is not normal for me. Probiotics seemed to have remedy this problem long ago. And ginger powder used to help as well, but nothing is working on that front right now.
Feeding Tube
It's also possible that I have bacterial or fungal issues with my feeding tube, as the odor emitted from it (upon opening) doesn't smell quite right. I am overdue for a feeding tube replacement.
Hospital
If I go to the hospital, they will likely do nothing. The added problem is that transport exhausts me (they must carry me down difficult stairs wrapped in a tarp) to the extent that I cannot properly communicate with paramedics or hospital personnel until I regain my energy, which can take several hours.
I also do not have a warm body to take with me to the hospital, someone to advocate for me. I tend to get treated rather poorly when I come in on my own (several times, having been neglected and abused by staff - physically and verbally - over the years).
Question
Is there anything I can do to curb the sudden debilitating P.E.M.?
I suspect there is not, but I have to ask. It seems as though something snapped, or something broke, or something was pushed just a little bit too far.
Up until today, I did not have a bowel movement for three days consecutively, and I started improving, feeling better energy overall. Obviously, I cannot avoid bowel movements. But right now, I am slightly out of breath, my muscles ache, and things just aren't very good at all.
Question #2
If anyone were to triage this, come up with a prioritized plan based upon my disclosure, which areas would you focus on first.. and how so?
I don't know if (or when) I'll be able to respond to any comments, but they will be read and they will be appreciated.
Thanks,
Howard
In the past two weeks my P.E.M. has gotten substantially worse, to the extent that I feel the end may be near. Normally I have a rather positive outlook on life, but I just cannot describe how awful, how physically drained, nor how sleepy I've become after physical exertion.
Please note, I've been bed-bound for the past 6 years, and I've never felt quite this badly after muscle exertion
On any given day (20 minutes after having had a bowel movement), the P.E.M. hits hard. Before, the duration of my feeling unwell was between thirty minutes to an hour. Now, I am virtually immobile for up to 12 hours.
I feel nauseous, poisoned, a near constant muscle burn, occasional numbness in my lower extremities, and even have difficulty staying awake.
What's Changed
Carbs
For the past two months I've been sucking on a few gluten-free salsa flavored rice chips each day.. in order to merely "taste" real food. I do not actually swallow the chips (carbs typically destroyed me when I was still able to ingest food orally, causing overall weakness, sweating, and confusion).
Please note, I've had no actual food since February.. severe gastroparesis, but I do have a feeding tube.
Bedsore
I may or may not have a bedsore on my tailbone area. I've been waiting three weeks for a nurse to come out for a visit, and "nobody" keeps showing up. I've been applying turmeric paste to the area, and the wound seems to have closed up, but I cannot lay on my back side due to the pain. Feels something akin to internal bruising.
Bloating
In the past 24-hours, my upper left flank has become very sensitive to the touch, and bloating worsens this discomfort and pain. The area where it hurts most is adjacent to my feeding tube stoma.
Also, coinciding with this sudden downturn, I've been extremely bloated for the past 2 weeks. This is not normal for me. Probiotics seemed to have remedy this problem long ago. And ginger powder used to help as well, but nothing is working on that front right now.
Feeding Tube
It's also possible that I have bacterial or fungal issues with my feeding tube, as the odor emitted from it (upon opening) doesn't smell quite right. I am overdue for a feeding tube replacement.
Hospital
If I go to the hospital, they will likely do nothing. The added problem is that transport exhausts me (they must carry me down difficult stairs wrapped in a tarp) to the extent that I cannot properly communicate with paramedics or hospital personnel until I regain my energy, which can take several hours.
I also do not have a warm body to take with me to the hospital, someone to advocate for me. I tend to get treated rather poorly when I come in on my own (several times, having been neglected and abused by staff - physically and verbally - over the years).
Question
Is there anything I can do to curb the sudden debilitating P.E.M.?
I suspect there is not, but I have to ask. It seems as though something snapped, or something broke, or something was pushed just a little bit too far.
Up until today, I did not have a bowel movement for three days consecutively, and I started improving, feeling better energy overall. Obviously, I cannot avoid bowel movements. But right now, I am slightly out of breath, my muscles ache, and things just aren't very good at all.
Question #2
If anyone were to triage this, come up with a prioritized plan based upon my disclosure, which areas would you focus on first.. and how so?
I don't know if (or when) I'll be able to respond to any comments, but they will be read and they will be appreciated.
Thanks,
Howard