This will be a quick update. I am very sick, I just started to feel better and was able to eat and then this morning got very sick. I don't know if it is related to taking the second dose yesterday or not.
I also don't know if the increase of fatigue I have felt these past few weeks if from the medicine or they fact that I am essentially crashing everyday because the damn house is still getting repairs.
When I say fatigue I mean incapacitation. Not just "a little tired'. I wish I could be just a little tired.
I am not in a good state right now physically or mentally. I never catch a break and being this sick all the time having to do my own medical research and still not able to find a fucking primary care doctor who even remotely cares about the quality of my life/willing to help me. I'm not even well enough to try to make an appointment.
With all the work I put into getting better I am still getting worse. It's just too much.
Bells functionality : 0
Daily cumulative upright time: less than an hour-usually less than 30 minutes
Untreated pain : 7
This is not living
I'm so sorry, that really, really sucks! Hopefully later today it will improve at least a little. That extra stress from the house repairs obviously isn't helping. When did you take the second dose? I'm assuming yesterday but you know what they say about assuming. Hang in there!
!DHEDGE
Yesterday. Usually the nausea from the med is in the first few hours.
This wasn't really nausea. Sometimes I throw up for no reason. I don't even feel that "sick". I just throw up when I eat. i swear it has something to do with the fact that my throat always feels swollen and I often have a hard time swallowing stuff .To take medicine I have to put the liquid in my mouth first then put the pill in the liquid -or I choke. Been like this my whole life.. Yet another thing I bring up to doctors and it's completely ignored.
I guess on the bright side you found a way to take the pills anyway. I have no idea why either, some people have trouble with pills though. You're not alone there! I'm to hear about the nausea, that really sucks. Hopefully the day will improve!
Not just pils . I have a problem swallowing everything as my throat feels about 50% closed up all the time (sometimes affecting my voice and breathing. Feels like anaphylaxis at it's worse). My throat also feel weak sometimes, not sure how to describe it. Kind of like how my eyelids droop sometimes when I am in a crash, or my legs just don't work/are too weak.My muscles just stop working-sometimes those muscles are necessary for like eating and stuff..
Do throat muscles just give out on people?
I don't think my day is gonna get any better but I do appreciate the thoughts. ❤️🦄I'm headed fast toward dehydration as someone with POTS this is not gonna end well. I can't swallow even liquids without choking right now.
It really sounds neurological, I'm sure you've seen an ENT? Sometimes I believe they do occupational health to do swallow therapy if I recall. Way outside my area of expertise though! The muscles shouldn't give out but they can be weak...
I have seen ents before. One of whom dx vestibular migraines. No one checked the throat though. It really is one of those things that I never think to mention (until it gets really bad like now) as it's my "normal". The few times i did mention it to a dr it was dismissed and I was told to just "eat slower".
Separate subject, want to hear what the nicotine patches are doing to my POTS/heart rate? Some very interesting things happening...
I'm all ears!
"With all the work I put into getting better I am still getting worse. It's just too much."
I can actually understand how you are feeling right now dear friend but one word I will say is never give up. You have been strong all this while and you have been fighting and fighting, keep it going. In no time you will conquer
It is kind of relive to me that you are feeling a bit better than before and this is a little bit of growth. Do you have people or family members that is around you because you also need them at this particular time?
I have my husband but like many people with chronic illnesses family abandoned me decades a ago and friends are scarce.
Many people are not aware of how alone disabled and chronically ill people really are. Society depends on unpaid labor of family for our care but for those abandoned by their families we get no help.
This is reality. I came to terms with this a long time ago.
This is sad. I have come understand long term ago that you tend to know your true friends when you are facing hard time.
Yes this is so true
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