Sick and Exhausted - Trip to ER

I'm so sick and exhausted. I don't want to be graphic but the time of the month has taken a toll since I got sick with M.E..  For some reason it exacerbates my M.E. symptoms and my POTS, not to mention I have had low ferritin levels for over a decade. Thankfully this hasn't usually translated to anemia although in January I did dip slightly into anemia.

For this reason, lately I've been buying the only form of iron my gut can tolerate which is liquid Floravit.  So, 4 months and 150 dollars later I have managed to bring my ferritin up from 6 to a whomping 12 - sigh.  How frustrating.  It's so expensive to do it this way, but I guess I must continue to fork out the cash.  I managed to raise my B 12 too (which was low normal) with the sublingual tabs. which are much less expensive.

So, while in some ways I feel like the M.E. is in a holding pattern, on the other hand I am colossally weak and exhausted.  I noticed on this recent blood work (I can see my results online) that my WBC has dropped even lower.  I'm now at 2.6 (4 is normal) with my neutrophils 1.2 - still in the mild neutropenia range, but now edging close to moderate.

And as for anyone with a chronic illness, life still happens.  Last night when I drove my dad home (a few blocks away) and he was hurrying to get in the back door of his residence, he tripped (it was pouring rain and I think his shoes may have been wet).  He landed on the sidewalk/cement on his hand and within moments his hand swelled up to the size of a baseball.  I had to take him to emergency where the line was much shorter than usual (thanks for small blessings).  Still, in total we were there for 4 hours - waiting and X-ray, stitches.

I am not unaware that this accident could have ended very badly.  I watched him fall hard, and there was an instant where I thought he hit his face.  Still, it was a LONG night for me with major POTS symptoms sitting up and the hospital and caring/advocating. Surprisingly, his hand was not broken (although the Dr. said she'd call tonight if the radiologist saw something she missed).  He did need stitches as he had a deep gash on his finger and there is obviously swelling (she said hematoma) and perhaps some spraining of at least one finger.

The thought crossed my mind that given my WBC is a bit low, the hospital was probably a dangerous place for me to be, but I tried to block that thought out as best I could, because I wasn't about to ditch my dad. I woke up today feeling like someone took a sledge hammer to my body during the night - I'm dizzy achy and icky.

I was trying the whole time to be a supportive compassionate care giver but given my energy levels tanked after less than an hour, the experience was excruciating.  Even after we made it out of the hospital I had to help him sort food, get in and out of the car, understand medications (antibiotics), etc. etc.  It was all I could do not to lay on the floor, give into the the exhaustion and sickness.

This is an incredibly isolating lonely illness.

Why is M.E. such an isolating lonely illness?

Physical:

• Most of us are incredibly deficient in energy (due to metabolic and immune dysfunction) so we must spend many many hours a day alone resting. All of us with M.E. feel exhausted and weak most the time (it's like having a battery that only ever charges to 20% and muscles that are made of silly putty). We are forced to give up hobbies, social events, much of life that would bring us in contact with people.
• At least 70% of us are unable to work full time so we are often isolated, spending our days alone at home.
• Most of us become fatigued or even crash from too much mental, physical, emotional, social stimulation/exertion so in order to reduce symptoms we must avoid triggers - this limits us to quiet lonely spaces.
• Many of us miss so many of life's milestones and those of our friends and families due to the illness. It can lead to feeling separated, different and/or abnormal.
• All of us try to avoid crashing most the time (although sometimes we purposefully over-do so we can experience little bits of life).  A crash is like the worst day of influenza with a hang-over.  It's horrible, like being poisoned in every cell of the body with immune system symptoms to boot (e.g. fever, sore throat, painful lymph nodes, shakes/tremors, dizziness). Avoiding crashing means avoiding triggers which is lonely making.
• The majority of M.E. folks (up to 80% or more) have OI which is orthostatic intolerance (in my case POTS).  It means when we stand up, especially if we stand still we feel horrible and dizzy/lightheaded thus we feel best laying down with feet elevated. This keeps many of us away from places where standing still is necessary (e.g. in line at a store). Instead you'll find us alone at home, or sitting in the car with feet up.

Other

• M.E. is isolating because Drs are either dismissive or have nothing to offer - despite having an awful life-stealing illness we're on our own medically. For example, there isn't a single full time specialist in the province where I live (only 2 in the country), there is almost no research happening in the whole country. 
• People with M.E. often feel cut off from family and friends because they see us on a good day and think we're better/improved or "it must not be that bad", suggest or assume we exaggerate (generally it's the opposite), and no matter how hard they try they will never really understand the daily drudge of living in a sick, drained body. I have friends that try to understand and it makes life far less lonely - it helps that they knew me pre-illness. Many folks aren't as lucky.
• M.E. is isolating because despite the millions of us with the illness, if we do 'come out' to someone they've never heard of it.  If we use the old "CFS" term they immediately think it's about being tired or fatigued (which is a common experience for everyone) and/or they immediately dismiss the diagnosis and ask if we've been checked for....X or tried Y.
• M.E. people feel alone because based on the amount of people sick world-wide, governments dedicate infinitesimal funding to the illness when compared to almost every single illness out there. Research shows that quality of life in M.E. is as bad or worse than end stage AIDS, M.S. or congestive heart failure yet for example in the U.S., the illness receives less funding than male pattern baldness or hay fever. Governments, Drs. researchers, all tell us through lack of consideration that "you don't matter".

M.E. is isolating because we are alone on so many levels.