Time for a personal update. First, though, I want to sincerely thank everyone who has taken the time and energy to read, comment on, and/or share my posts thus far. This blog has taken off far faster than I ever dreamed it would, and already I have met so many wonderful people! It feels so wonderful to find others who understand what life with severe ME is like and who are also passionate about spreading the truth about this largely misunderstood illness. Thank you!
Moving on… While educational posts are good (and I have much more to share), I must not forget the primary reason this blog was started, which is to chronicle my journey as a person living with severe ME. In many ways, I consider myself very blessed. Many, If not most, ME sufferers have no access to medical care at all once they become home/bed bound. I was in that situation myself for about six months, and it was beyond terrifying, not to mention agonizing. Nowadays, I receive wonderful medical care from my local hospice team, so I really can’t complain there.
That said, there are needs that are going unmet, and they are becoming much more serious. In order for us to pay the bills, my husband must work full time outside the home. This leaves me home alone for over 9 hours most days. My husband does what he can – most days he rushes home during his lunch break in case I need anything (which I usually do), but that still leaves me alone for 4, 5, 6, or more hours at a time. This isn’t exactly ideal for someone who can barely make it to the commode beside her bed. And the disease is progressing. Soon I will be unable to use the commode at all. Even now it takes a tremendous amount of adrenaline to get me there and back, and I’m forced to use hand rails the entire time lest I fall and hit my head.
Some of you may remember I have a service dog. Obviously I can’t leave home anymore, but DeeDee (my dog) is still a tremendous help. There was a time when just having her here was enough assistance for me to safely get by with my husband gone. DeeDee can retrieve objects, pull covers up or down, open and close the bedroom door (for more air or less light – I can’t have both just right unfortunately), and much more. But there’s only so much a dog can do, and having DeeDee is no longer enough. I need a human here to throw out the liner from the commode if I have a bowel movement so I don’t have to spend hours smelling it (bad enough for a normal person, much less someone prone to sensory overload!), to bring me frozen packs and change them out as needed to help control the extreme bouts of sweating that leave me lying in soaked clothes and sheets for hours on end, and to handle all the other little things that come up. I need a full time carer.
Unfortunately, this doesn’t appear to be happening any time soon. There is a state-run program I applied for with help from the hospice social worker that pays for a carer for physically disabled people, but it turns out there’s a two year waiting list to get approved. Two years! Chances are slim I’ll even be around that long. Plus, I need a carer now, not two years from now. My husband and I can’t afford to pay for someone out of pocket, and don’t qualify for any other forms of financial assistance. We’re in that awkward category where our income is just barely over the limit to qualify for help, but not enough to really meet our needs, so we also can’t afford for hubby to stay home more. And it’s not like we just need a carer for a couple hours a week. We need someone to help out at a level that would basically equate to a full time job (in other words, all the hours my husband is away working full time to pay the bills). Who’s going to do that for free?
Sooo we’re stuck. I’m extremely concerned about what will happen once I can no longer make it to the commode. A time is coming when I will not even be capable of maneuvering a bed pan. In fact, I already have times when I could not physically do this. The number of times I find myself paralyzed to one extent or another is growing steadily, and that’s not even considering the times of extreme muscle weakness and uncoordination. I desperately need to let go and stop forcing so much adrenaline just to meet basic needs. But letting go is a scary prospect when I know there’s no one here to catch me. What am I to do? Line the sheets, wear diapers, and lie in my own waste until my husband can get home? What other choice will I have?
I wish I could say my situation is unique. It’s not. Far too many ME patients find themselves in this same position, or worse. Society today simply isn’t set up to meet the needs of people like us. I suppose when you’re healthy and busy living life out and about, it’s difficult to really think about and imagine needs like ours. People just assume programs exist to care for us. Sadly, this just isn’t true. I hope my husband and I find a solution, and soon. I simply can’t hold on much longer.