This week has been such an odd week. One filled with research on how to do many of the things I need and love to do without over using my eyes. Trying to explain what’s going on with me at this moment so people understand. Doing paperwork (online) to get transportation set up and finalizing the delivery process of my groceries (outside of that which I get from Natural Farms) with Whole Foods.
When I got to Friday, I felt like I had made good changes and was making great strides in adjusting to learn how to adapt to using my eyes less, learning to do less, physically, as well as, learning to live within what appears to be my new norm of 20-40% energy levels.
In addition, I found out I had been approved to use the LIFT (a van for disabled people) and if I was ever physically able, to use the bus for free (unless someone is with me and I’m having a really good day, I don’t think that one will happen). As a result of the transportation being approved, I now have an appointment (an extra long one) with my civilian eye doctor on February 9, 2011 @ 4pm.
I also found out that Hero’s project got the VA to pay my dental bill from last year and got the Doctor’s office to stop the collection service against me and wait for the payment from the VA.
But as I sit here and write this, I find myself … discouraged.
Many of you don’t know this, but I have been diagnosed with ME/CFS by many doctors. When I first got sick, it wasn’t understood or believed and so doctors would send me to find out what was wrong and I would get diagnosed with ME/CFS. I would come back and have to see another doctor, and the process would start again. I probably have been diagnosed with it almost a dozen times.
And yet, twenty plus years later, I still cannot explain to my family, friends, and people in general why I spend so much time in bed, or in my apartment, in a way that they truly understand. I still hear people saying, “If you would just go outside and do something”, or “Why don’t you want to get well?”, or “You really need to exercise.”
Mind you that this is after I had several readers remind me (in the very same week and very nicely) how I need to step back and take care of myself.
Even my VA doctors are still in complete confusion as to what is going on. On my application for the LIFT program, I listed ME/CFS, FMS, RADs (Reactive Airway Disease), severe memory problems, cognitive problems, etc.
My doctor under the verification portion did not list RADs but just simple asthma? In addition, she added that I have seizures! I have not had a seizure since 1998! Nor any medication since then. In addition, there was no mention of the memory issues, the cognitive issues, the fact that I’m house-bound 90% of the time, and whatnot.
There are times when this illness, itself, becomes a heavy yoke hanging around my neck that I just can’t shake.
I recalled a day or two ago, one of the earlier ME/CFS doctors I was seeing 10+ years ago telling me that as long as I crashed and then got back up, he wasn’t too worried about me. It was if he saw my energy highs and lows starting to even out (meaning my energy peaks were further and further apart) or plateau, then he would become worried because that would indicate that the illness had progressed and my body was having difficulty fighting back.
I have been at this 20-40% for over a year now. I have to assume that this is where I am going to remain. And then add my eyes and sensory issues, and things definitely appear to be plateauing.
As much as I do not want to see this happening, I know I can deal with it and move forward, however that looks. But I struggle with having to not only explain each change, but also going back to square one in re-explaining why I’m so wiped out all the time, or why I’m not exercising, or how even a conversation or visit can wipe me out, or why I spend so much time in my apartment and so little time outside.
In otherwords … on the defense…
I know that all those who say these things mean well and have my best interest at heart. Despite that it is so disconcerting to find that I, someone who is gifted with words and communicating through my words (at least on paper/computer screen), am unable to explain this illness in a way that people get it.
To be bluntly honest, I have actually had the thought, that sometimes I wish I had MS or Cancer instead of ME/CFS so I could just say I have such and such and people’s eyes would open wider and they would get it. Then I would be greeted with compassion and empathy.
Instead, more oft than not, I find people unable to relate to what I am going through and making assumptions as to why I can’t just get out of my slump or how I’m making myself worse.
I keep thinking it is because I don’t look sick but is that really true? Cancer patients, MS patients, AIDs patients have periods where they don’t look sick and yet people still get it. So why does that not work with ME/CFS?
I have this reoccurring dream in which I develop this outfit – kinda like the birthing suit men can wear to get a sense of what it is like to be pregnant – in which the limbs are filled with a heavy substance to give that ‘cement-like heavy laden’ feeling I have in my limbs and the helmet has some advanced technology that can be wired to their heads that will short circuit their recall ability, memory ability, cause speech difficulty, etc.
I also add the electrodes in the legs so that when they go to sleep, their legs will be shocked every few minutes in order to cause their legs to jump and fly about. The final element would be an alarm clock that would go off every hour or so, interrupting their sleep.
Of course that is not possible, but I often awake with a smile on my face, thinking, yeah, I don’t think they would survive a week or a month in that outfit.
Unfortunately, I’ve been wearing it for twenty plus years, with no forseeable possibility of shedding it anytime soon.