As some of you may know, I have been in limbo for many, many months. Work had become so unbearable that I took a 5-week LOA. I have been in and out of the hospital. So, at some point I realized the only way I was going to get health insurance was to get on disability. If any of you have gone through the process, while holding down a decent job, you know that you can’t even be considered if your income is over a certain amount. So, feeling desperate, I made sure my income stayed under the limit. This was a piece of cake because I’ve barely been showing up for work for months.
But, you probably know what a long process this is. I have basically screwed over my financial situation in order to do this. And I’ve just been waiting and waiting and waiting for the decision.
Well, a couple of weeks ago my car pretty much S*** the bed, which I knew was going to happen anyways. And I knew that my health just wasn’t allowing me to give my employer what they deserved. So, I knew I needed to resign. I have been unemployed officially for about 2 weeks, with nothing coming in. I may or may not qualify for unemployment. My car is still sitting in the yard, I’ve recently come off a med and still experiencing insomnia for a month. Add to that the horrible cold snap New England is in and frozen water pipes I’ve spent 2 days dethawing…
On top of that, I get my decision from Disability in the mail today. NEWS FLASH: I AM A PERFECTLY HEALTHY YOUNG WOMAN!!!!
Wonderful! Now I can go on with my life soooooo fulfilled knowing how healthy and successful my life and my body and brain are going to be! Thank you, Government, for helping me to realize just how well I really am!!!!!!!!!!!
I feel like I am suffocating under the stress I am under. I am now unemployed, virtually car-less, and I am still waiting for my Disability decision. I can’t hardly move I am so comatosed, just numbing out on the computer until I can go to “sleep”, (whatever that is).
The worst part of this, of course, is how alone I feel, and I feel so alone of my own accord because I don’t let anyone into the nightmare that is my life. I feel like I want to give my 30-day notice to my landlord and just run run run on the lam, wherever I collapse is where I will stay.
The shame that comes with suffering at the hands of invisible illnesses is just unbearable, like it is my fault, like I’m not doing all I possibly can to help my well-being. But the screaming inside of my head tells me that I’m to blame, that everyone looks at me and sees my life as a complete and utter failure.
The SI has been strong, but better today. I see my Dr. tomorrow, I’m sure she’ll press more pills to treat the insomnia…sigh…
Maybe my best posts are going to come to me at 3 am? This is week 3 of insomnia. Some nights are easier to handle than others. Tonight is trying…I am under a lot of stress. My car is only legal til the end of the month, and I don’t have the money to change that. I can’t work without a car. I’ve resigned, which I was going to do anyways. But then I got a flat last week, and everything came flooding down on me. No way to get around, can’t go to work, can’t find a used tire, any day now will get my Disability decision. I have been living like this for months, just waiting, in limbo…
I definitely have to figure out now how I am going to deal with the worse case scenario: a denial, disabling illnesses, no car, and no job…the racing thoughts have been out of control. I now realize why I jump from activity to activity to distraction…any stoppage sends my mind racing uncontrollably…
At 2am I heard this flashback of a song on the radio: Phil Collins-Your No Son of Mine. My mind started reeling…life is so different in the wee hours of the night.
At least I got out and socialized on Saturday. I paid for it by spending the majority of the next day in bed with an awful flareup…oh well, guess it was worth it. I realize how horribly negative my mind is, I wish I could learn how to dwell and obsess on the good and not the bad. I feel like I must be a real downer to hang out with, which is probably why I am so quiet in social situations.
It’s been a while since my last post…however, nothing has changed. I recently spent several days in the local crisis unit because the rebound insomnia from the Mirt has gotten so bad that I’m starting to go crazy. Things improved with each night I was there…now I’ve been home for 3 nights, and I’m worse than when I went in. I’ve been up since 2 a.m., after a couple of hours of sleep. My doctor is adamant that I no longer nap and take a heavy dose of sleep aids for a few days. The hope is this will reset my system. It’s been 12 days
Other than that, things are just dandy! I’m back to work today and the fibro has yet to rear its ugly head for several days now. Of course, I’m so nauseated and exhausted, I have no idea what day it is or time it is; at least my Creator is only giving me one miserable thing at a time to deal with.
On a brighter note: is it just me or is the daylight getting longer :) Pleasant dreams…
So, for the past 16 months I have been on a particular anti-depressant that has been somewhat effective but has had some serious side effects, the most awful being the excessive amount of sleeping. I can’t remember my life before I started taking this med. Well, anyways, I’ve been dying to get off of it, and have finally been able to do so successfully. But, if you read the title of this post, you must sense something is terribly wrong!
I spent 10 yrs as an insomniac, at least the first couple of years as an insomniac. The rest of that time I was so dependent on the med that I was using to help me sleep that it took many many years to get off of it. So, now I am free of this different med, it’s been a few nights, and I’m not sleeping again. I can rationalize this with the fact that I probably slept enough during those 16 months to make it through 3 weeks of wakefullness, but seeing as I can hardly stand myself when I’m awake during the day, I am not impressed.
At least I feel like I can spend this monotony doing things I wouldn’t normally want to do during the day. It’s 3:30 and I just put some final touches in decorating my new apartment (which I’ve been in for a year lol). Oh well…when I start banging my head into the wall out of mad insanity, then I will really start to worry…
What is your quality of life? What defines it? Who defines it? Is it the same for everyone or do we create our own? Can our expectations about our quality of life change for the better? These are the things that I think about this weekend. Ultimately, I know the answer to these questions: we create what we want out of our lives, if we’re unhappy with the way things are proceeding, it’s up to us to make the changes…but, that’s easier said than done.
For at least the past year, I have felt that my life is centered around the illnesses that I deal with on a daily basis. “How do I feel today? What are my emotions? Am I stable or something else? How is the pain and fatigue? Did I accomplish anything?” When did my life become completely absorbed by illness? I guess that’s what we all have to deal with when facing the chronicity.
And the fibro is so debilitating that my whole life centers around the way my body feels. My brain is active and wants to move myself into doing “things”, but my body is screaming STOP! My therapist says it’s up to me to change my expectations of “the new normal” and to develop self-compassion and a listening ear to my body.
Maybe I’m just in a state of self-pity…thinking that this is all my life might be…it is a painful state of mind. But, what are the other options?
ENDURANCE VS GIVING UP
Last night was difficult, battling some skeletons in my closet. Between the med decrease and this grieving process I’m going through, I was a bit down. Down enough that I thought I was going to need to reach out for extra support–which would have been o.k. But I pushed through it…
This morning I thought back on my night and how I dealt with it. My therapist is helping me to see that I am only human, capable of experiencing a wide range of emotions. These emotions don’t need to be labelled as “good” or “bad”, they just are. So, last night I felt sadness and grief. At first I chose a coping skill not so helpful. But instead of letting myself slide into the comfortable groove that is “depression”, I did other things.
My gut reaction was to escape from the fear of myself by abusing (anything). But, I put in some Florence + and the Machine, burned some incense, and took out my sketch book. Instead of running, I felt the emotions, allowed the tears to fall, felt my grieve, and then–it was done. I had slid through the feelings without lashing out at myself. I did that all on my own (with Inspiration at my side).
I could have reached out for supports in the community, which is a fine way to cope. But experiencing a successful night of coping of my own accord–there is nothing more gratifying and confidence-building than that!