Tomorrow I go to court to try to appeal my Social Sercurity Disability descision. It has been a couple of nerve-wracking weeks since getting the letter about the hearing of waiting, proparing and dealing with my lawyers, doctors, etc on this. I was told that it helped to write down each of your medical problems and what they were like in your own words to take with you so that you could have them in cause of nerves, so here is what I have for tomorrow, I hope that it will be enough:
Panic Disorder with Agoraphobia – This is really two different things that are linked to each other, first the agoraphobia. I don’t like to leave my house sometimes I don’t like to even leave my room. It is the only place that I feel safe. I know the people that are around me and I can even lock myself into my room if the fear becomes too uncontrollable. It is the only place that I can semi let my guard down (more on this when I talk about my PTSD). I can’t be in elevators with more than 2 people in them and only if it’s fast. When I do have to leave my home for things like doctors visits or shopping for food I usually experience the other part of this diagnosis – the panic disorder or Panic attacks. When I have a panic attack it feels like all the oxygen is being sucked from the room and the walls are closing in on me. I feel like I’m suddenly surrounded by hundreds of people all pushing, pulling, getting in my space and breathing my air (when in truth there may not be anyone within 10 feet of me.) I can’t breathe, I hyperventilate and either starts sobbing or screaming. Then the crawling feeling starts, if feels like some has pore an ant farm with thousands of little ant all over my skin, to counteract this feeling I start scratching my arms, not even aware that I’m doing it, till I make myself bleed. Sometimes I can forestall these attack at least for a little while (30 min on a good day) if I have my IPod with the right music playing, I practice my deep-breathing and close my eyes, and pretend I’m somewhere else.
Post Traumatic Stress Disorder (PTSD) – Having PTSD is like being a time bomb but not knowing when you are going to go off (be triggered). Because of this I have to be in control at all times. I need to know where the exits are, I usually sit in corners so no one can come up behind me and I am always on the watch. I never know what is going to trigger a flashback – there are a couple of different kinds of flashbacks that I experience. The first kind is the nightmares – the dreams that are so terrifyingly real that I wake in a sweat, sobbing, shaking, and unable to breathe or relax. The second of the kind where you lose track of reality and are sent back to the trauma the cause the PTSD in the first place, so that you have to experience it all again. The third kind I experience are what are called body memories, it is where your body goes through the feelings of an old memory while you stay aware of where you are. To me these are the worst because your body is feeling everything that happened.
With the flashbacks come angry, depression, crying and all kinds of other heightened emotions, which are sometime hard to explain to yourself let alone those around you. It’s like you’re going crazy and you know its happening but there is nothing you can do to stop it. These emotions can lead to you lashing out at those around for no other reason but that there are there.
Major Depressive Disorder – Depression – I feel sadness, worthlessness, lonely and futility ALL the time! I feel as though no matter what happens that this is always going to be my life and some days I find getting out of bed more then I can handle. All I want is for the world to go away and leave me in peace. I find no joy in any of the things that use to make me happy – family, work, and friends. I’ve even gotten to the point that my dog (the one thing I love the most in my life) has become something I look at as a burden instead of something that I love dearly.
Dissociative Disorder Not Otherwise Specified (DDNOS) – This mental disorder is like living in hell and being surrounded by your own personal little demons. They all have their own names, personalities and opinions. While it is not as bad as Dissociative Identity Disorder in that I don’t lost awareness of who I am when one of them takes over. I do have 8 alters that take control and put me in the back seat whenever they feel like I (“A” – the host part of me) can’t deal with something. In a way it’s like letting someone else driving so you can take a break except that instead of a car they are driving your life.
Fibromyalgia – I feel like I have the flu 24×7 365 days a year. Which makes my body achy, run down and all I want to do is sleep. I experience pain all the time – sometime it can be likened to having a throbbing toothache “all over your entire body”, sometimes it feels like someone is electrocuting you and the shock is running everywhere, and sometimes it feels like someone has a burning hot poker and is stabbing you all over with it. On really bad days it feels like all three are happening at once. Most days I have to walk hunched over because the pain in my lower back is so insufferable that standing straight is impossible.
I have this overwhelming, complete and total Exhaustion which makes taking a shower and getting dressed a BIG accomplishment. Of course be the time I do, all I can do is crawl back in bed because my body has been sabbed of all its energy. Of course, I can’t get sleep that my body so desperately needs because insomnia is one of its symptoms. There is nothing like – wanting, needing, desperately seeking sleep, only to have it elude you…
Then I have the “Fibro Fog”. It’s just what it sounds like – Fibromyalgia puts my mind in this deep, dark, dense fog that makes remembering even the simplest things difficult. I have problems completing sentence. Sometimes I can’t remember what I’m doing from one minute to the next. You have no idea how frustrating it is to walk from one room to the next and forget why you did. This isn’t something that happens every once in a while this is something that happens day in day out, sometimes 10 or 50 times a day. It makes getting things done difficult and complicated.
If this isn’t enough – added to this is my stomach. So days eating is like a chore – I know I have to eat but then I have to worry about the consciences of eating. Am I going to have heartburn and acid reflux all day? Am I going to throw up what I ate? Or is it going to go right through me and am I going to spend the next hour on the toilet? Then there is always the really atrocious days when I throw up, sit on the toilet and then when there is nothing else left; I have heartburn.
I have to watch everything I do – stress make it worse, too much or too hard of exercise makes it worse. Being around someone that is sick makes it worse, plus guarantees that I’m going to get what they have; lack of sleep makes it worse. All the foods I enjoy AKA spicy or Italian make it worse. This disease takes all the fun out of life and leaves you nothing else.
To make matters even worse you add family and friends who just don’t get what you are going through. I’ve heard comments like “you don’t look sick”, “it’s all in your head”, “you just have a low tolerance to pain”, “you’d feel better if you exercised more”, and so on. These comments don’t help, in fact they make me more depressed then I already am.