State Of Being

The problem with being me is ... just that: the state of "me-ness". It's almost unbearable at the best of times.

I've been laying a bit low the past few days because -- HOT NEWS FLASH!! -- I've not been feeling well. Like that never happens, you're saying to yourself. Don't deny it. I can hear you.

My arthritis has been raising its ugly head again over the past few weeks, and decided to make itself fully known on Monday. My hands are once again swollen and painful, my hips hurt with every step I take, and my sacroiliac joints and back are screaming, "DON'T MOVE IF YOU WANT TO STAY ALIVE!".

Speaking of which, I've been questioning that last statement lately.
My physical state has, unfortunately, had an effect on my mental state, leaving me depleted of energy and desire, just wanting to sleepsleepsleep the days away. I haven't been a very good mother lately, or a good wife, or friend. My temper is short, my good moods fleeting at best.

The thing is, there are so many people who just don't get it. They see me looking absolutely normal, seemingly happy enough, and it is automatically assumed that everything's hunky dory, when, if they just took the time to delve just a little deeper under the surface of my face, they would see the darkness, the pain, and the utter sadness and hopelessness that lives there perpetually. Maybe they don't want to, because to go there would be unbearable.

And so they go on with their day, and expect me to go on with mine, when in reality, I can barely make myself a cup of tea let alone an entire dinner for the family. The guilt I feel is insurmountable. Here I am, at home, and most days I can't even get myself together enough to sweep the floors, wash the linen, or clean the cobwebs off the ceiling.

I have lived with this most of my life, and am pretty much accustomed to people not understanding. Most of the time, I know it's just that, and is not a matter of them not caring. However, when I fall more deeply into that black hole of depression, my vision narrows, and suddenly I am entirely alone in this awful world, and I am sure everyone out there is against me. It's not a rational thing, and cannot be explained away. It just is.

I am fortunate to have a good group of friends around me who, when I am once again in this place of unforgiveness, pick me up and hold me until I can once again stand on my own. I know how fortunate I am, and I do remember. But I also worry that one day, they too will disappear. There's only so much anyone can do for another person, I reason. Only so much before they have to escape to save themselves. Their hold on me will one day weaken, and I will once again fall. This hasn't happened yet, and for that I am eternally grateful.

But the worry is there, and is very real, that one day my friends, and my family -- my entire support system -- will just vanish, leaving me alone to deal with my life. And that is a very scary feeling indeed, akin to death really.

Please don't let me die.


Scribe said…

I hate that you're going through this and have these fears. We all go through it, afraid that we're leaning on people too much. The people who really know you won't walk away, no matter how hard you lean. Trust me, I've been there and my good friends are still there.

Hang in there. You have friends here too.
Mary if only you knew, By nature I am a very positive person but I have a deep rooted fear of cancer and death. I have no one that understands, I have my children but as one is in remission from cancer I can't talk to him and the other two don't just understand yet they are the salt of the earth,
Today I visited my doctor as my sinus is painful I explained that one medication lowered my blood pressure in the past she said right
I will gove you something else,
Went to the pharmatist only to find it's the same medication under a different brand name.

I know what you're going through
and believe me it isn't very nice.
I am into reading some good books
and listening to CDS that help. I find them very beneficial.
I do find blogland very special as everyone is so friendly though we have never met.
Take care.
ReformingGeek said…
Think the best of your friends and they will stick around.

We love you!
Mary, this is so f***ing sad that I cried...tears of sympathy, and tears of empathy. Your tale is so common for anyone with a chronic, unrelenting illness, whether it causes pain or just frustration and inconvenience.

I've told you before that I used to be severely hypothyroid, and no one ever did a blood test to figure out why I had such unrelenting fatigue, could barely lift a gallon of milk or get a fork to my mouth or take care of my daughter. We're talking a couple of decades! They even tested for ms and myasthenia gravis, which were negative. No one understood, thought I was lazy and malingering, or depressed. Tests finally found I had raging Hashimoto's thyroiditis, and of course medication fixed it. I felt so validated, but lost years of my life.

After this, I still had lingering visual problems: floor jumping up, Alice in Wonderland sydrome (I got bigger than everyone else), distorted vision like looking in a fun house mirror, sensitivity to all lights but especially flourescent, floor jumping up so that I felt like I was tripping, etc. I just KNEW that everyone could see all this, but thought I was drunk or on drugs. One doctor said I might need YEARS of therapy to figure out what was wrong with me because he thought it was a mental condition. Finally, one doctor said he thought I had seizure disorder. Put me on seizure medication...symptoms stopped. Felt, again, validated.

Now all I'm left with is chronic neck and back pain from three separate auto accidents. Some days excruciating, some days manageable with pain meds. No insurance, so mri or any kind of surgery is not an option. I just have to deal.

My point, besides hijacking your post, is that NO ONE KNEW what was going on with any of these illnesses or conditions except my family because - like you said - I LOOKED perfectly normal. They kind of understood, but they, also, could not 'see' anything, and I'm sure at times lost patience when I said 'I'm sorry, but I'm just too tired'. And because of that, I always pay attention when OTHER people drop a hint about something that may be going on with them, and always make a point of reaching out to them even if it's only to say 'if you ever need anything or to talk about it...'.

My conditions were nothing compared to yours and to others who truly have painful and unrelenting conditions. But I hear you, and I understand.

If you ever want a good (but wierd)read by someone who had a chronic condition (ms), read Remembering the Bone House by Nancy Mairs. About fatigue,she says: "Fatigue...becomes the constant gray undertone of my days, but I never accept its authenticity. I berate myself for it as my shortcoming, my personal failure, a physical frailty setting me apart from others." I wrote that down, because I, too, at some point, felt that it was my own fault that I was defective!

Hang in there, Mary. Do what you feel you can, and don't apologize for what you can't. There's no shame in asking for help from family or friends, and, BECAUSE THEY LOVE YOU, they will help you. Sure, they may get tired of it sometimes, or helping may even be inconvenient, but that, too, is normal. They Really. Put that fear to rest.
ShanaM said…
The other commenters said it great.

I would do a couple loads of laundry for you if I lived closer.
michele said…
and you already know what I think, my dear friend. Michele
michele said…
and you already know how I feel my dear friend
Trina said…
Mary, your post makes me so sad, and I so wish I could be there to sit with you and have a cup of tea and a chat. You are in my thoughts. {{HUGS}}
One thing I've found in my own experience. I can sometimes mask the fear, worry, anxiety I'm feeling so well that no one actually CAN see what's going on. It took a good friend looking me square in the face and saying, "It's not fair to expect anyone to know what you'r going through if you don't tell them." She was right. I grew up believing I had to pretend everything was fine no matter what. Somewhere I developed a keen sense of seeing under other people's masks. Not everybody else does that. Expecting them to just KNOW wasn't fair of me. Let the people in your life in on what's going on before it gets REALLY bad so they can help. When people love you, they truly want to be a part of all that you're going through. Helping out in the hard times makes sharing in the great times that much better! Prayers are with you.

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