Really Planning for the Future

Today was somewhat better than yesterday.  Pain levels are about (the new) norm and I do feel better than I did.

Thank the gods for a husband who talks to me, who actually communicates!  We had a long talk this morning and he basically called bullshit on my current health status.  He has made a point of specifically mentioning the ways in which I am improving–or not.  He said flat out that I had given up.  I cannot see an end to this current state of being and I don’t want to be disabled.  I have stopped cooking on anything resembling a regular basis and our eating habits are dreadful.  I’m putting weight on again and that’s just not acceptable to me.  But I can’t exercise…so I’m caught in this cycle of eating bad, gaining weight and etc.

He has also told me to my face that I am clinically depressed.  He should know, he’s skirted the issue himself and when I explained that I was having a really hard time handling the situation, he fussed at me for not saying anything.  Which is why I am here, trying to explain how things are for me without whining. This really is meant to be a “for your information”–while I try to be upbeat and positive about my life, there are things going on that definitely are not cheerful.  So from a clinical standpoint: I am angry.  I am totally pissed that I have fibromyalgia.  Totally pissed that it was not diagnosed when it first began, which I believe was in high school–even as I acknowledge that it would NOT have been diagnosed as such back then (late 1970’s).  Totally pissed that all the accommodations I made over the years are no longer sufficient for my life now.  Totally pissed that I cannot do the things I enjoy, let alone the things I must, such as household chores and showering.  Oh yes, taking a shower–used to be a 20 minute event and now takes at least 30 minutes to wash the same way I always have because I have to be careful and slow or it hurts too much.

I am terrified that I will never regain the level of ability I had just 2 years ago, that I am really ….  you know … DISABLED.  That I must make continually updating accommodations depending on my levels of pain and energy.  That I might need a wheelchair or other special equipment for the handicapped.  That I will have to let go of some of my hobbies because I can no longer do them.  That I will never hold another job because (at least right now) I cannot do anything for 8 hours straight; I need to work a little, rest a little and repeat as needed.

Never having another job leads me to another source of stress: money, or the lack thereof.  If I go on permanent disability (SSDI), it means a limited income the rest of my life.  No way to make overtime or bonuses, a severe limitation on spending without careful planning.  No casual spending, no impulse buying of things that cost more than $5.  It quite possibly means food stamps and other social services.  Which I would be very grateful for, but the hoops that are required to get those services…I’m not up to jumping through them.  Yet.

Which is yet one more stress-inducing concern: it is my plan to thoroughly consult with my physician and get his medical opinion of just how fast I am really going to heal and be back up to speed.  I will get his input on what is our tentative plan of action: to retain the services of a lawyer and begin the process for SSDI.  My health has been an all-consuming issue for the past 8 months.  I have been out of work 5 1/2 of those months.  I have not had a paycheck since the end of February.  And if you read my prior blogs, you will know that I am also no longer employed so I don’t even have a job to return to.  A job at this point means the whole bitter process of finding a job opening, applying for it, interviews, and then praying I get it.  And having to explain why I do not have a job at this time.  Think that will improve my chances or be a black mark against me?

So I am angry and terrified.  Now we have to add to that this sense of malingering, the feeling of not meeting my responsibilities (like cooking or cleaning), and the definite lack of desire to ask for help.  I feel resentment that I cannot hold my grandchildren for very long and only with careful planning–like being seated and having my granddaughter slide up onto my lap.  I am afraid that I will drop them if I pick them up–if I could pick them up.  Actually, I feel a lot of resentment about all the things I can’t do.  I don’t want to be disabled, remember?  If I can do things myself, then…I’m not.  Even if it takes me longer, even if it hurts like hell.  Or like my husband said, I’m as stubborn as he is and will try to plow through it and then wonder why I feel so dreadful later on.  If yesterday was a typical day, I cannot imagine living another 30 or 40 years like that.  Even if yesterday was a “bad” day, and my “good” days are not so painful, are definitely better but not where I was a couple of years ago…I still prefer not to live like that.  Live like this.

Am I suicidal?  No, if you mean am I looking for a way out and actively planning my own demise.  Am I depressed enough to lack the motivation required for a better standard of living, or to accept that this is the way it is and learn how to deal?  Yes.  Are there times when I feel that being dead would be the only way to be rid of the pain?  Oh hell yes.  Being disabled ends so many of the things I had thought about doing, hoped to do, wanted to do.  And I am not seeing the other things that it will bring to my life, the possibilities I never considered, the chance events that would not have occurred without this disease.  I know that they must be out there but the dark cloud of my despair and anger does not permit the glimpsing of anything positive.  BUT suicide is not an option because I will not leave my husband.

So let me end this here, stop the whining and complaining.  I have worked very hard over the last 10 years to get negativity out of my life and I am greatly disturbed to realize that it can jump back in without missing a beat to take over my thoughts again.  I cannot do this alone this time and I am grateful beyond words for my beloved husband who watches out for me and watches over me.  I am grateful for a doctor who will listen to me and work with me to find a course of treatment that will be the most helpful.  And for this particular issue, I am willing to take an anti-depression medication, which he is willing to prescribe.  I need the chemical assistance; simple force of will is insufficient.

Having someone who loves me enough to make me face the facts I’m trying hard to ignore but need to deal with?  Priceless, absolutely priceless.  I do not know what I would do without my husband and I am ever so glad that I don’t have to find out.  I can make it through anything if he’s there with me.  Which makes any day better, no matter the pain.

So if you also suffer from fibro, please know that when you get down, there is always some way up–you just have to find yours and it’s worth the effort to do so.  Pursue every possibility, try all the medications you can to figure out what works for you, and do that IAO thing: Improvise, Adapt, Overcome.



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