Having a Bad Day and Planning for the Future

So today is NOT a good day, speaking from this moment in my relationship with fibromyalgia.  Some days, I hardly know I’ve got this disease.  Some days, I hardly know I’ve got any other life except for this disease.  Without looking for pity, not even really asking for sympathy, I can tell you as just pure information that today, I hurt.  It’s what we refer to as an “Indiana Jones” kind of day–so much hurts that you can’t locate a spot that doesn’t.  I’ve taken my meds, am using my TENS unit and have analgesic topical patches on my hands.  I am also wearing the wrist braces that seem to give the best support and make my hands feel better.  I’m not sure why I have so much pain, but here I am, with it.

Moving is to be avoided and I’ve been occupying myself with computer activities…and I’m bored.  But I can’t think of anything else to do that won’t hurt more than the simple clicking on a mouse.  Even typing this causes pain, but I’m dealing with it because I want to share my thoughts with you.

I’ve got an appointment next week with my doctor to see about changing up my medications because frankly, I’ve reached a plateau in my progress-and in some cases, even feel like I’m slipping back into the bad part.  I’ve been on Lasix to reduce/remove the swelling in my hands and feet.  I go to the bathroom like a race horse so it’s pulling water out of me but the feet are still fat and the hands are too–which makes them hurt more because they are swollen without the extra skin and space that feet and ankles have to hold excess water.  The Cymbalta seems to be helping with the pain, but it gives me dry mouth something terrible and I really would prefer not to increase it if I’m going to have that particular side effect increase along with it.

I am really struggling with the conflicting feelings I have about our next course of action, which is to retain the services of an attorney that specializes in disability claims and see about getting SSDI (Social Security Disability Insurance)–which is essentially declaring me permanently disabled and I’d get a check from the government and my health insurance would be Medicaid.  I don’t want to be disabled.  But I cannot return to any meaningful job within my skill sets–I cannot do anything productive for 8 hours straight.  Even my doing stuff around the house is done in 1/2 hour or 1 hour spurts, with generous rest time along the way.  And I don’t see that changing for months, perhaps years–and perhaps never.  The way I am now could very well be just the way my life will be for the rest of my time on this planet.

That’s a thought that makes me almost despondent.  This is not a life with any real, consistent quality to it.  Yes, there are good days, but even those have limitations that I did not have 2 years ago.

<Interrupted writing because husband insisted I take a nap.  It’s now 4 hours later.  He says I slept through at least 6 iterations of the alarm going off.  Yay for the snooze button.  I do feel a little better.>

I cannot stand the thought of living like this the next 30 to 40 years like this.  My family has good genes for long lives and it’s entirely possible that I could live to be 90 or so.  But as beloved pointed out to me, fibro is being actively researched, so new meds will be coming out all the time.  If my doctor thinks that I would benefit from being part of the experimental group for a new one, I’m sure he’d throw my name in the hat.  I wonder if he would stay in practice for me until I am dead…he’s only about 10 years younger than I am, so it could be interesting.  I doubt that he’d work that long.  That means getting a new doctor, some young whippersnapper…sigh.

I fully and frankly admit that the thought of never having to work again but having money coming in is…attractive.  But I’d prefer to win the lottery instead of being permanently disabled.  Because the problem with disability means that all the free time I’d have–would be spent quite differently than if I had the Mega Millions to play with.  What’s the point of endless free time if you spend most of it in pain?  Or at least, physically limited in what you can do with it.  An SSDI check means that any chance for a career in catering, which I was sort of working towards, is gone.  It means a lifetime of austerity because the checks won’t be that big; food stamps will probably become a way of life.  My healthcare costs will go down, fer sure–but I have to go to doctors who will accept Medicaid which may not mean (shall we say) the highest quality care possible?  I am on some “third tier” meds with no generic available.  Will I still be able to get them or will I have to settle for some other medication that doesn’t work as well?  Which would further degrade the quality of life.

And yet I don’t really see any other option (other than winning the lottery) so it’s something I need to get used to.  It may not be that bad, but it won’t be the life I had hoped for.  So I have to wonder what lesson is involved in this and what I am to learn–and what I will be doing instead of what I thought I’d be doing.  This requires almost as great a shift in my thinking as when I got divorced, making it another life-altering event.  Even if we can get all my symptoms under control, I cannot return to work in the near future.  Certainly not within the next 6 months, maybe not even for several years.  I see no end to the limitations I currently have–and the longer I am out of work, the less likely the chance of returning.  Who wants to hire someone with the gap of employment I already have, considering the reason for it?  (I haven’t worked since the middle of January.)

So let’s say I do follow the path to SSDI.  What do I then do with my days?  It certainly frees me up to finish (finally!) the murder mystery I started 7 or 8 years ago.  And lets me write the second book I’ve already started.  It has me available for the ministering I can/want to do.  I don’t have to be mobile to be a listening ear, a shoulder to cry on…  If my kids do move to live in this general area, I am available to see them at any time–and once the grandkids are out of the toddler phase, I can babysit on the “good” days.

And if my husband is also on SSDI–we won’t have a lot of money, but we’ll have lots of time and each other.  That could be the best thing that’s happened to us.  Imagine endless amounts of time with your best friend, who happens to be your lover and soul mate.  It would be wonderful.  Even worth the pain that makes the situation in the first place.

And thus I grapple with the reality of life as it is.  I have limitations, but who doesn’t?  If I can really get the pain under control, most days should be “not so bad” and therefore, bearable.  I have lived with pain for so long, like back since high school,  that I can’t imagine a day without it.  And so a certain amount is “normal” and I don’t particularly notice it because I’ve been ignoring it forever.  If I cannot return to work (as opposed to “will not”), then I need to turn my attention to the things that I can do.  Even if typing gets difficult, there are word recognition programs I can use to continue the writing I have long wanted to accomplish.  “IAO”, says beloved–“Improvise Adapt Overcome”.  Seems like a good way to deal with a disease that tries to limit me.  Oh I won’t learn how to tango or do a lot of wood carving, but life is not over.

The life I had is over, but that is true for all of us, at any given point of change.  There is a new life, a new way of living.  Pain may be a semi-constant companion, but it’s not the ruler of my life.  I will medicate, learn how to do old tasks in new ways that don’t increase the pain, and generally go on with my life in this new way.  It will be interesting to see what new abundance and blessings will come my way, and I am sure of those arriving.

The bad days serve to remind me that the good days do indeed exist because we know a thing by its opposite.  And I am getting more and more in tune with my body, which is probably part of this lesson.  I am also learning to appreciate the small moments–like spending the other day with my daughter, granddaughter and daughter’s significant other, doing nothing in particular but being together.  Personal interactions are taking on a new importance because the opportunities for them are more limited.  I am also getting some strong lessons in the gift of receiving gracefully–a friend took me to the store and paid for a cart of groceries that we needed and I am indeed grateful.  Having to go to Social Services and request all that we are eligible for as that time occurs will also be a lesson in humility and overcoming the false shame of being needy.  I say false because there is no shame in needing, only in feeling that somehow you are above that level of living…even if you’re not.  O Lord it’s hard to humble…

So there it is, just information, not a plea for sympathy or pity, not even whining, I hope.  Just trying to share all the aspects of fibro and letting you know, if you also suffer from it, that other people have bad days, too.  That sometimes beating the disease back is not possible and you have to look at all the other options, even if it means letting the government take care of you.  That learning to receive is a lesson that many of us need and some of us may actually learn.  That having this disease may end up being the very best thing to happen to you because it frees you up to a life that you had not imagined which may be fuller and more blessed than the one you were planning on.  It all depends on your point of view.



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