I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Sunday, 28 October 2012

Bad Day? Yeah, kind of.

I can barely move today. Not sure where my fingers are getting the ability, but I don't feel it anywhere else. Getting out of bed was a monumental effort. My eyes do not want to stay open. But as usual, my head is full of activity, and some of it wants to come out and play, so here I am.

I think there are several factors contributing to this dip. One, a relatively busy week; two, stress; three, change, which leads right back to stress; four, yeah, I don't know - oh yeah! - the weather has been very gray and rainy (although surprisingly, the air pressure has been relatively steady).

So now you want to know about my busy week, the stress and changes, right?

Well, for starters, my baby boy is now a big brother - his stepmom gave birth to a gorgeous little girl. Mild complications during he last few weeks of her pregnancy, and now the newborn in the house mean that my son's schedule is more than slightly altered, and that his emotional state is heightened. Don't get me wrong - he's great about it, and we've been having some amazing conversations. The other side of the family is doing a great job in including him and making sure he still gets plenty of attention, and here and at schools things are pretty steady and quite good. It's just that he is, quite naturally, feeling some very intense emotions, which being an almost 10 year old boy, there is no way on this earth he could be expected to handle them even as well as he is doing. And being as close as we are, and being as sensitive as I am, his emotions affect me deeply. The whole situation also means that I've been doing some extra driving and visiting - this new little baby, is, after all, family in a weird postmodern extended blended family kind of way. And while reclining on a couch with a sleeping newborn is amazingly renewing and peaceful, driving 40 minutes there and another 40 back in the rain is not really all that so much.

There's also my own emotional state to deal with - watching my ex with this new baby is also surreal and is (surprise surprise) bringing up some residual emotions around when our own baby was born. It is amazing to me how much we have both changed, and yet how much is the same. This is a very complex situation, and I am so glad I have a fabulous therapist to help me sort out all my crap around it, so that it does not leak into the rest of my life and affect my health.

What is less easy to contain at the moment is the thought that my Long Term Disability is likely running out. I received a letter reminding me that at the two-year mark, the definition of totally disabled changes from being unable to do my own job to being unable to do any job, anywhere. This means that the bar is set so high, that there are people out there wearing chemo drainage bags to work. Ok, so my insurance is likely running out.

What can I do? Not much. I can ask everyone on my healthcare team to speak on my behalf, which they will. To which the insurance company might respond with having their own doctor make an assessment, and we all know how easily that could go against me - there are far too many doctors who still do not believe what I deal with is real. I can also start logging again, which I probably will, and not just because of that, but because I am curious to see how I'm doing compared to where I was a year ago.

A year ago, the insurance company decided I was well enough to start volunteering at the school on a regular basis.  It did not go well (and you can read all about it in the archives). It sent me into a crash that lasted months. I am concerned that I may be headed into a similar situation. I have been doing some volunteer work for the school, but much less than two hours a week, and on my own time from my home (from my couch, really, to be more precise), and even that has not been all roses, because of the physiological response I have to conflict, change and pressure. In fact, I have pulled back, because what I was doing was taking away from my healing, and have put very strong limits and boundaries around myself, my responsibilities, and with whom they are shared.

So as usual when I find myself wanting to assess my functionality levels, I turn to the dishwasher. If you recall, it was in emptying the dishwasher 3 years ago that I realized just how sick I really was. Today I still find it an excellent indicator of where I'm at in terms of my abilities, energy levels, symptoms and so forth. It is something I have to do, don't particularly enjoy doing, yet feel quite satisfied when the task is complete. It is mostly physical, although there are some cognitive aspects (like figuring out how to fit everything in, jigsaw puzzle style, because otherwise, it will sit in the sink for another 2 days).

Right now, my dishwasher is clean and partially emptied, and has been that way since Friday. What does that tell me? That there is no way in hell I am anywhere near close to being able to return to work.

In early October, I was able to actually empty the whole thing in one go, still in my chair, mind, but in one go. Since then, I have been doing it at most one drawer at a time. Sometimes a few items at a time. And then I need to rest. I need to remind myself that it's ok to do it a bit at a time, and that I need to rest afterwards.

What this tells me is that yes, there has been improvement. Yes, I am making progress. It is very slow progress, and most importantly when looking at a return to work, my energy and functionality levels are not stable, and are still very inconsistent. If I need to rest after emptying half a dishwasher drawer (and my dishwasher is a 3/4 size model), then how on earth can anybody expect me to be able to handle even a part time job?

I know, I know, insurance companies by and large don't give a rat's patootie about my dishwasher, or about my health in general - they just want me off their bottom line. They don't care that in two month's time I will be back home in worse shape than before, and that it could end up costing them a heck of a lot more, than if we waited until I was really ready. That's how the system works - or doesn't work. There are so many people who dupe the system, and the system fights back by putting in harsher requirements, which in turn, do damage to the people who really need help. In my mind, it's just like security at the airports - instead of doing things smarter, they do the same thing more aggressively. It cannot be effective, and it is certainly not (to use the big word of our era) sustainable. But I cannot change insurance companies, the system, or the man, much as I'd love to stick it to him, whoever the hell he is.

So back to my dishwasher. To me, my inability to deal with the dishwasher in one go every time it needs emptying, and the fact that it can take days for me to get it done means I still need to hermit. I am not ready, physically, to emerge from my shell. I've made this mistake before, and I really don't want to go through those consequences again. The early months of this year are as close as I've come to being depressed throughout this journey, and that's something I'd strongly prefer to avoid. Today I'm having a bad, sad, angry kind of day, but that does not mean I am heading into a depression, or that these feelings will even last into this evening. It's just for now. I know that, and I'm ok with that. What I don't want is to have day after day of feeling like this.

If the insurance company tells me I need to start a gradual return to work now, I have, as far as I can see, the following options: do it, and risk another mega-crash, or don't do it, and lose what is left of my income. Neither option is really all that great, and I'm sure there are options in between that I haven't really looked at yet, but that's where my head is right now. I also know that it won't happen now, that it will happen in a few months, and that a lot can change in a few months.

So here's why I'm all laid up - ready? 'Cuz it's less than I thought would lay me up, considering how good I've been feeling overall lately.

Friday I went to a school event. I was out of the house for a couple of hours. I could not even make dinner - my son showed my nephew how to heat up chicken fingers, and then I directed them as to how to defrost frozen veggies in the microwave. I couldn't even do that! Saturday I felt well enough to drive him out to his Dad's, but that took a toll as well. And finally, last night, I stayed up past my bedtime to talk to my family about my insurance situation and some other family matters, and today, well, you know how I am today. All I can say is it's a darned good thing I did my research and found us a pet that is so low maintenance, and I am so glad the hedgie needs so little attention from me. She is happy on her wheel, which I have yet to clean today (gross, I know, but that's the way it is), and has enough food and clean water from whenever it was I changed them last.

Yes, independent pets, independent (and mature) children - that is the way to go! And now, back to my turtling.


  1. Love you and proud you are turtling!!! I will start praying for the insurance to work out...it will. I just know it. Hugs and spoons my angel friend!