1. I am a very high maintenance female, but, believe me it is not in a good way and it in no way is about beauty. I have to take lots of meds, be very careful what I eat, obstain from most things I enjoy just to be able to get out of bed and try to be a functioning person.
2. No I am not on street drugs, I rarely drink alcohol and do not have a drinking problem, and I don't abuse prescription drugs......this is just me. I fall a lot, I sway and loose my balance, get confused, forget words, look ragged most of the time and have extremely dark circles and bags under my eyes. Unfortunately I did not have the good time to bring on this 24/7 hangover - this is just me - the me that I have become.
3. I am not unhappy - why you say....because for years I had to pretend to be normal and try to work when I knew I was not capable. I couldn't be honest about my issues and no one wanted to hear it and probably still don't. But - now I don't have to feel ashamed and I don't have to pretend any longer - I am what I am and I am just happy to be alive and have my family and friends. I have gone through the "Become" stage just like the Velvateen Rabit and what I am is what I am and that's ok. My family and good friends accept this and don't question it any longer.
4. I have purpose in my life even if it is smaller than what I once had, it is purpose all the same and we all need that - even if we don't think we do. While my purpose may not matter to anyone but me, it gets me out of bed and keeps one foot in front of the other. That is a wonderful thing.
5. I am like Sleeping Beauty except with out the beauty part. I have to sleep at least 10-12 hours a day to function and many days it is much more. This has been very hard to accept but as a good friend tells me, what is the alternative?? I will take the sleep rather than the Big sleep - the permanent one. :)
6. Like many I have good days and bad. Over the years my good days have turned into hours but I am thankful just the same. Bad days can last well for days and days - sometimes months - especially during cold weather. I mention this not for what it does to me but for how hard it makes things for my family.
7. If I see you out somewhere (which is unlikely) I may not remember your name, even if I have known you for years. I will more than likely know that I know you but maybe not in what context. I worked with large groups of people over the years and most especially in my admin business and it is difficult now for me to put people in their correct place - did I go to school with you?, did we meet at a conference?, did I do work for you? I know this sounds crazy but it is what it is.
8. Many friends have told me the age old thing - "But you don't look sick!" when they do see me. Well if I am out of my house, I have taken a good deal of energy to look somewhat presentable and believe me it is not my norm. I went to the doctor a couple of weeks ago in total frustration - feeling so ill and frustrated - in my sweat pants, white t-shirt and no make-up and my hair looking like a friz ball. I had taken a bath and just dressed and went. I normally never do that because I look like a life long smoker on a binge looking for a large box to spend the night in - seriously......and I have never smoked in my life. Anyway - you just don't get the same service and understanding when people see you looking like that. When anyone who does not know me well comes to my house, I notice they are noticably shocked at what they see. It is what it is.
9. Most days I stay in stretch pants and t-shirts because they are comfortable and they don't hurt. Sometimes I sleep in the same ones I wore all day long. I wear the same thing day and night and rarely wear shoes because they hurt to put on and they hurt my feet.
10. I no longer am able to take a bath or shower every day - shocker! Not because I am too large or heavy - I am not that fat. :) It is because it takes so much energy that if I shower and wash my hair, I am spent for the day. It is not likely that I will be able to do a lot more until the next. I have to take hospital baths - some people have a funnier name for that, but it is when you wash everything important at the sink and change your clothes. It works. Washing my hair is a huge deal even though I don't have much. I cannot dry it because I can't hold up the dryer for the time it takes. Washing my hair and leaving my house does not happen in the same day! Every now and then I make it to get my hair cut - several times a year - and I love it when they wash and dry it for me. Hubby loves it when they blow dry it. :)
11. When I go out, I have to spend an inordinate amount of time trying to find something to wear that covers all of the rashes, scars from rashes, blisters, etc. and won't hurt so much that it will expend more energy than it is worth. Hard to believe that once upon a time I used to dress every day in heals and hose, etc. Wow - who was that girl????
12. Yes - you may have seen me trying to get to a bathroom without passing go or collecting my $200 - if and more than likely, I am out and eat or drink, it is very probably that I will have a bathroom emergency. I have been very lucky and have so far been able to make it without incident but just recently came dangerously close to a very bad incident in the Target store which would have left many shoppers very unhappy. Their restrooms are just too far away!!!
13. I can drive a car and I have a license to do so but you don't want me to. I only drive within about a 5 mile radious of my house. Rarely if I have to go further, I have to prepare and many times have to cancel a doctor's appointment because I just can't do it. There is just too much going on and way too much for my rattled brain to take in all at once.
14. Please don't watch me eat.....it doesn't really bother me but it may bother you. I use a butter knife to push and shovel food onto my fork in neat small amounts so that it makes its way to my mouth without taking a side trip down the front of my shirt or worse. For some reason my hands have decided that they do not have to follow the direction of my brain all the time and take over when ever they feel the need. The same goes for drinking - sometimes my head shakes or sometimes inexplicably I spill my drink or just drop it. We go through lots of glasses and dishes.
15. The hardest thing for me to admit is that I am no longer dependable and I think that I can do so much more than what is reality. I say I can do things and I truly believe it when the words come out of my mouth but when the times comes to actually do it, it is a crap shoot - and my odds are not good.
Ok - so that is my top 15 - I could go on but let's not. I know anyone who has read this all the way to the bottom had heard enough. I don't disclose these things because I feel sorry for myself or want sympathy - I do it because I feel in my heart it will help others in the same position to believe that no matter what, life is worth living and good can come out of most anything. We just have to mine the gold and sometimes that is really hard but it is worth the dig.
