Living Life, Disabled and Depressed

Living a fulfilling life with one or the other of these problems is extremely difficult. Living a life at all with both is nearly impossible, or at least for me it is. I am always happy to hear of, or meet, someone who is able to work past these or other issues and life a happy and full life. I have been unable to do it. This is probably going to sound like another poor me post, and I guess in a way it is but I really need a forum to say these things relatively anonymously. I thank you for listening (or reading, whatever is appropriate).

I think maybe a place to start is me, or rather what I think of me. In over 40 years, so far the only thing I like about me is my tattoos. I have a purple rose with a dagger on my chest above my heart as a reminder of my first suicide attempt, to never let myself go there again. I have also a red and pink rose with a blue butterfly resting on the stem on my left calf, this one is for my kids. No matter what they are my kids.

The last one is quite large, it takes up most of my left thigh. It is a Celtic cross with 3 blue roses towards the top, and the grim reaper with his sickle across the bottom. This one has several parts, the roses are for my kids, the Celtic cross is a nod to the Irish part of my heritage (German Irish, English, and Swede) and the grim reaper is for hope. I know that sounds backwards, but to me it makes perfect sense. Everyone dies. No one is immune to Grim. I can only hope he comes for me soon. Now I know how that sounds, and let me reassure you I have no plans to rush Grim along my way, I just hope it is my turn soon.

Now,enough rambling about the good part of me. My true self view…I am SUW UWOO. Translated to Stupid Ugly Worthless Unwanted Waste of Oxygen. In my entire life there have been 3 people who I felt truly wanted me around, Dad, Husband, and Best friend. Turns out I was wrong about Dad. When I got sick, and was at my worst he, along with Mom, both brothers, brother-in-law, grandmother etc, etc told my husband to “just divorce her ass, put her in a nursing home, and forget about her.” Husband refused and along with best friend have been fantastic at taking care of me, and getting me to doctor’s appointments, the pharmacy, and PT (when I had to go).

I have no self-esteem, self-confidence, or self-worth of any kind. I never have. I have lived with this attitude for as long as my memory goes back. I have never known different. The sad part is that I thought this was normal until my first suicide attempt in my early 20’s. I learned in the aftermath of that it’s not normal. My way of coping with the depression is probably not the healthiest, but has kept me alive this long so I’ll stick with it. OCD tempers some of it, some I release with music. I am a huge fan of Death Metal. Amon Amarth, Metallica, Slayer, Hatebreed, (you get the idea) are some of my favorite bands. Some I have just learned to deal with.

Now throw several chronic diseases on top of that. I have Fibromyalgia, Periphal Artery Disease, Emphysema, Osteoporosis, and a funky arthritis called Ankylosing Spondylitis. *say that 5 times fast Simply getting out of bed every day is physical challenge. It sure doesn’t make the emotional problems any easier.

Anyway, this is turning into a much longer post than I intended, and my nearly useless right hand is getting very sore from typing this up. So there is a snapshot of my mental state. Once again, Huge Thank You‘s to all of you for letting me get some of it out. Even if nobody is reading this, it helps to have it out there.

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Mini Rant About my Wheelchair

I just want to say Thanks to all who recognize that just because my body doesn’t work  quite right,doesn’t mean my mind quit working also. I very much appreciate the people who simply talk to me normally. Often, people don’t know how to react to a person in a chair. Most are curious about how I got there, or how I manage certain tasks, or any number of other things. Maybe they have never really known a disabled person before. It is quite common to “dumb it down” during conversation like you would to a child. While I understand this instinct and am not truly offended by it, I do sincerely like to be treated like an intelligent woman. Just because I am suddenly shorter than average and always have a place to sit does not mean I am stupid. It means I am shorter than you.

For the most part, I don’t mind when someone asks me what happened, or any of the other myriad of questions they may have. It is a highly personal thing to ask, but I would rather answer the questions than spread hate and encourage prejudice. I particularly like answering the questions of a child. They are honestly simply curious and trying to learn. It bothers me when parents discourage honest curiosity in small children. how else are they supposed to learn if they don’t ask? 

I am bothered by pity though. It really angers me when someone looks at me with that “Oh you poor thing” look in their eyes. Pity, as far as I know, has never really helped anyone. Another thing that bothers me is when someone doesn’t know how to deal with me because I am disabled, so they simply ignore me. I am thinking in particular of a recent incident when I was struggling with a heavy door while in my wheelchair and three people simply stared, a fourth looked at me with pity in her eyes and walked through the door without pausing. It had shut again before I could react to get through. It is not rude to ask “do you need help with that?” that question allows me to say no thank you, if it is something I can manage, or yes please if I can’t do it. I have lost count of the number of women’s restrooms my husband has seen in the process of helping me with the doors. and the number of women who simply walked on by without comment or pause.

OK, enough ranting. Today’s lesson in my life, was about learning to like myself. I need to stop worrying about everyone else’s opinions and find a reason to think positively about me. I am working on it. So far all I have some up with is that I like my tattoos. I have 3, with plans for 4 more right now.

Vacations

Let me start with an apology, My right hand is very very sore today. My fingers are curled up and refuse to cooperate  with me, so if there are more grammatical errors than normal, please try to bear with me. I am doing the best I can without it. Now, on to the fun part.

Day one of this trip was nothing but driving, or more accurately riding in the car fighting motion sickness while my husband drove. Note to self, 1000 miles in one day is a bad idea.

Day 2 & 3 were spent recovering from the drive mostly. We did do a little bit of shopping and sight-seeing, but I spent a great deal of time being pushed around in my wheelchair.(No car noises this time darn it.) We have since then been visiting family and more sight-seeing. I do have to say my husband is certainly getting his exercise pushing me around.

As much as I dislike it, I have very dependant on not only my wheelchair but also my prescription pain killers this week and expect that to continue for a while. I dislike taking pain killers at all, but am at least happy that my doctor agrees with me that narcotic pain killers like Vicodin are not for me.

Part of the reason I am using these aids is because without them I would have a pretty crappy vacation, and would ruin my husbands trip as well. I like to think of myself as an independent person, and like to do as much as I can without help. My Mom once told me that “sometimes being independent meant taking help when offered and asking for it when needed. The need for independence and self-reliance has to be weighed against the greater good.” Insisting on self-reliance when sightseeing would make the entire family suffer, myself included.  I really don’t like how dependant I am on this trip, but I would like even less ruining my entire family’s vacation. We don’t see each other near enough and should ALL enjoy the time we have together.

I guess I believe that just because I am IN pain, does not give me the right to BE a pain. In any situation.

There was much more I wanted to say here, but at the moment whatever it is has escaped me. (Hate getting old.)

Take care of you, and remember to celebrate all your victories no matter how small. As always feel free to ask any questions you want. I will answer the best I can.

Things I Love and Things I Don’t

I have just re-read my post titled A beginning and I really don’t like how it sounds like a poor me pity party. I try to be honest, but I think I just come across as wanting sympathy. that is not true at all. I just want people to be aware that Fibro is real, mental health issues are real, and those of that suffer just want to be treated as normally as we can be. I don’t need or want pity, I need support.

I adore the fact that my family has taken my illness in stride. My kids, who I don’t see nearly as much as I’d like to due to distance, never bat an eye when I need my wheelchair. They simply step behind me and start pushing, sometimes making car noises while pusing me around the store. My husband didn’t bat an eye when he had to take over most of the cooking and cleaning on top of a full time job. My best friend, on the rare occasion I am in public, simply pushes me to a quiet corner, stands between me and the rest of the people and calmly talks to me when I am panicing. I would be lost without these people and their unwavering support.

I also noticed in my first post that I failed to explain agorophobia. It simply is a social anxiety disorder…an extreme fear of other people, public places, that kind of thing. At one point, I was afraid to move around my own home and simply remained in the living room for about 6 weeks.

There I go being Debbie Downer again. Dangnabit!

I like that I am able to not only share my experience and interace with others in an environment that does not send me into a panic attack.

I like that I am able to laugh at myself.

Finally, I like chicken, but only without bones. I can’t eat chicken if it has a bone. It’s gross. LOL

Thank You!

I know that our country especially, but all over the world people are mourning the tragic events in Colorado. But rather than focus on the monster that perpetrated this horrific crime, I feel like we should raise up and praise not only the victims, but the survivors and emergency personnel involved. All to often, the hidden but extraordinary efforts of emergency responders are forgotten in the aftermath. I support the outpouring of love for the victims and survivors, but want to take a moment to say Thanks to the ambulance drivers, the paramedics, the police officers, and the nurses and doctors at the hospital caring for these folks.

It is at times like these you really learn what is important, and I promise it is not the sexual orientation or skin color of your rescuer. It may not be much, but from the bottom of my heart, I want to say Thank You to all the emergency responders in America, but particularly in Aurora, Colorado.

A Beginning

So, I have had this journal for a while now and have never posted anything. The main reason I signed up was to follow some of my favorite fan fiction writers when they moved from FFN. I can’t promise I will update very regularly, or often but when I can, and have something to say, I will.

I thought maybe the best place to start was to tell you some about me, which I hate doing. I hate being the center of attention. I have always wanted to be invisible so no one would notice me. I assume (I know, I know not always a good idea) that comes from years and years of emotional and physical abuse growing up at the hands of my brother. Everytime I think I have got beyond that damage, I find I am not. As a married (21 years now) mother of 3 grown children, I hope I get past it soon.

I have been diagnosed with PTSD, MDD, OCD, and Fibromyalgia. There are a couple of other physical diagnosis, but they are really not important to this discussion. Physically, I am very limited. I am right handed, however my right hand is hopelessly useless, and we don’t know why. The simple act of opening and closing my hand is excruciating, on the rare occasion I can do it at all. I have learned to use my left hand almost exclusively through trial and error. Some days I am confined to a wheelchair, other days I can get around with a rollator ( a walker with 4 wheels). When I can walk, it is very short distances, and for only a few minutes. Doing everyday things like grocery shopping requires a lot of planning ahead, and 2 people to assist me. I need one person to push my chair and another person to push the grocery cart. Usually my husband just goes without me after I write a list (with my left hand, Fun). As a side note, one of my helpers needs to drive as well as I cannot. I cannot pass the vision test for a driver’s license.

After 6 months of PT and OT, I can Finally take care of most of my hygiene needs myself. I have a special chair to put in the shower, and a cuff that makes it much easier to grasp with my right hand things like my razor, or toothbrush. A full bottle of shampoo or body wash requires both hands to maneuver, but I have managed to find ways to make it work. Dressing myself is possible, but very difficult. Just as an experiment, try putting on undergarments, a dress shirt, pants, socks and shoes with only one hand. Things like hooking a bra, buttoning your shirt and pants, or tying your shoes are nearly impossible without a lot of training, trial and effort. I can manage everything but the buttons on a shirt right now. Typically I will wear a dress that has a built in bra and can just slip over my head, along with flip flops. I can put those on without assistance. At 41 years old, it really bothers me that I need help dressing.

As far as my mental health goes, I cope the best I can. I know I should seek psychotherapy, but I can’t. When you combine a phobia of mental health professionals with what is suspect is agorophobia,I quite simply can’t do it. Even if I could get there, which involves finding someone to take me and fighting against the agorophobia, I couldn’t talk to them. I have tried several times, and it seems like every time I go, I end up with another new diagnosis. Personally, I think I need to fix what we already know is wrong with me before we go searching for the rest of the issues. I am aware OCD (Obsessive Compulsive Disorder), PTSD (Post Traumatic Stress Disorder) and MDD (Major Depressive Disorder) cause a lot of other issues, or at least are usually found combined with several other issues. Someday I will figure it all out, I hope.

Ok, so enough of the poor me routine. I tried to keep this all factual as far as my life goes, but it always comes out sounding like a poor me anyway. Sorry about that. Usually I just tell people I have severe arthritis, and nerve damage from a car accident. It describes my limitations in a way that people understand as a general rule. Too many people do not understand, or even try to understand fibro. Most people with this disease are able to live a normal life, or with slight modifications and medications. Some of the unfortunate few like me have a much more difficult time living with it. It took several years and several failures to find a medication that helps me at all. On a scale of 1 to 10, with 10 being the worst pain ever, my daily life was at a pain level of 6 or 7. My medications take that to a level of 3 to 5 on a normal day. Some days are worse, and a few rare days it is better. I am NEVER pain free.

I am happy to answer any questions you might have about fibro, or anything else about my life. I do check LJ regularly for posts from my favorite fan fiction authors and will answer as best as I can. I am by no means an expert, but I think that by documenting my experiences as a person with this diesase in this forum, maybe I can get the word out, and help someone understand a little better about this disease and how it can affect a person’s life. Some of the disparaging comments I have heard (from my friends and closest family no less) include, there is nothing wrong me, or i am faking, or it’s all in your head. This is common for sufferers of fibro and it really doesn’t do us any good.

As a final note, for the fanfiction authors, even if I don’t review, your stories are what keeps me going most days. Those days when the pain is so bad that all I can do is sit in my chair and try not to cry, I turn to fanfiction to keep me company and keep my mind off the pain.  so Thank You, and keep up the good work. You are appreciated more than you know.

Shelli

Image

This pic was taken in June of 2012, at my Grandma’s 85th birthday party/family reunion. This is me, with my daughter (21) standing behind me.