You don't look sick... But I don't look like me either

A lot of people with an invisiable chronic illness (ICI) hate the phrase "but you don't look sick" or "you look great though" or "its hard to believe you look fine"
None of the above make any of us feel any better... at one point I was so frustrated I wanted to shave my head and tell people I had cancer just so they would leave me alone and believe me that I am extremely ill and disabled.

But today I am realizing that there is more to it than just being frustrated that people don't believe us, or at least me. I may not look nearly as sick or disabled as I am but at the same time I don't look almost anything like I did when healthy or even what I look like when in remission.
I am quite paler then I was most of my life or how tan I make sure I get when healthier. I have always hated being pale (only thing that stopped me going goth considering how much I love vampires lol :) I have pictures of me as a child at my family beach house looking darker than some of my cousins who are actually African American. I always find darker skin to be more beautiful and healthy. (Well unless you come from a culture that is truly born to be pale like the lovely red heads of Ireland or the Scandinavian Vikings, then you look pretty damn good pale at least in my opinion)
I have spent my life living in the sun and when I got older and my time for playing in the sun was restricted by work or study I would tan in UV beds... I actually tend to feel healthier too when I got a UV tan if I hadn't been able to be in the sun for weeks or months. I don't know if it was a needed boost of vitamin D or just the fire spirit inside me getting renewed by the heat (that is an image I used to get in my mind while relaxing/resting in the beds).

I also hate my weakness, it isn't overly obvious how damaged I have become while sick on the outside but I was muscular and fit (I could squat 250lbs and bench press 160 while weighing only 110, now I am lucky when I can lift all my groceries or a gallon of water). Its true you can't see the damage to my muscles but you can see the 20lbs I have gained of fat (and since muscle weighs more than fat that is a lot of chub). My legs have almost no definition to the calves anymore, my thighs rub together and I have had to buy new sets of jeans at least twice and can't come close to fitting into almost anything I loved to wear when healthy. My breast were only a B cup but with pectoral muscles as strong as mine were they almost seemed fake they were so high and firm and perky :) but now I am heavy starting to sag D and I honestly miss the perky lil boobs I had. I had a six pack for years. Even when it wasn't totally defined it was always flat. I may have been prideful but my body was powerful it was strong and had been used more than once to defend itself from attack. It was attractive and that gives a woman a sense of power all its own.
So now I don't get the understanding I deserve for being sick and disabled... I get yelled at or dirty looks when I use MY handicap pass, or wheel around in my wheel chair till I feel alright to stand and then walk because my circulation needs the leg movement so badly (but if I can walk I don't need the chair I must be faking it right?) And then on the other end I am stuck with weakness and vulnerability I am both unused to and most days unable to stand (I have always been able to protect myself to be defenseless is terrifying and I never dealt well with fear) and I feel unattractive and my pride is crumpled.
Why do I have to get kicked when I am down especially when almost no one is willing to admit or able to understand that I am down?

New Docs and a Joke

Well it turns out that two of the docs I was expecting to be seeing while back here in NYC are no longer seeing patients. UGH!!!
And I am about to run out of one of my narcotic prescriptions (the one that causes awful severe withdrawal symptoms) is about to run out... Don't I just feel like fate is on my side? Well actually yes to some degree it is ;) I tricked ya for a sec there didn't I?
It turns out my dad's regular doc likes him a whole lot and is aware of the very negative effects of withdrawal from this particular drug and was willing to see this morning, and my dad only called to make an apt yesterday afternoon! Can't beat that.
SO even though I can't sleep, I am in awful Fybro and Neuro pain and my whole body hates me for working out a lil too hard 2 days ago I got at 9am (which is really really early for me) and went to the Dr.'s office (something I generally really don't like doing).
The NP I saw was nice and my dad's doc was a lot like many other doctors who don't know about this rare and complicated illness. Doctors that have been at their post for 20 years or more want to believe that know the answer and new problems and issues and illness and diagnoses seem to bother them and they can't believe they are true so it has to be something they are familiar with ... but my problem is that what I have isn't what they seem to want it to be. I am NOT bipolar, I DO NOT have MS, I can get depressed at times (chronic severe pain, life long goals destroyed completely, and a body that barely works half the time... if I wasn't depressed there would be something very wrong with me) but all that not withstanding I am NOT suicidal, I DO NOT over take my painkillers (damn it people I barely take them when I need them and never take as much even as I am prescribed), I am NOT addicted, I am NOT in pain because I am depressed BUT I am depressed (sometimes) because I am in pain.
I like the Doc and he did agree to give me a new prescription but I really hate dealing with the medical establishment most of the time. I am sorry for the rant but hey can you blame me after spending 2.5 hours explaining my illness (that has been diagnosed by some of the top specialists in the world or at the very least the entire western hemisphere) and then having to repeatedly defend my treatments (that have been proven to work) and the diagnoses and specialists them selves.
NOW on to the Joke: (my dad told me this after the doctor appointment was over and I found it truly truly hilarious I hope you like it too :)
A woman walks into a veterinary clinic with a duck in her arms and asks to see the vet. He sees her immediately and after examining the duck he says "I am sorry mam your duck is dead. "
The woman becomes very upset and starts to cry and says "Oh know he can't be please please do something!"
"Alright" he replies and he goes to the next room and returns with a Black Labrador. The dog pads over to the duck, sniffs it, and pats at it with his paw, then looks at the vet and shakes his head and walks back out. "I am sorry mam the duck is dead" says the vet to the woman.
Once again she starts to cry "Oh no, oh no he just can't be dead please please isn't there anything else?"
The vet says "OK, OK calm down" and walks to the room across the hall and returns with a very very large tom cat. The cat pads over to the duck and and circles it, and puts one paw on the duck and then the other, batting at it and patting it. Then the cat sniffs it and lets out a cat sneeze and dirty look, turns to the vet and shakes its head and walks out back to its room.
The vet looks at the woman and says "I am sorry mam the duck is dead. It isn't coming back and there isn't anything else I can do".
Sniffling and crying the woman is now resigned and walks out to the reception area to get her bill. In moments she comes back to the vet extremely upset.
"150 dollars?!! For a dead duck are you crazy??!!"
The vet looks at her and says "mam I told you the duck was dead, if you had excepted that it would have been $20, but you required Lab results and a Cat scan"

I hope that made you laugh!!!
TTYallL

that old feeling

I didn't write for a couple of days and once again my excuse is the same... way too much pain and misery to deal with writing.
But today was different, after 2 days of bad sleep and bad dreams I got a nice complete 10-12 hours. And when I woke up though tired and heavy feeling I was pretty much OK. Then throughout most of the day I just had this overwhelming feeling from inside that I was detoxing... that I was on the rode to recovery ... that things had finally, after months of relapse, had turned a corner. The feeling faded a bunch later on but I also got a bunch of exercise today and while I was getting it there was this tiny little part of me that felt like the old me. Now I didn't do anything a tenth of what the old me would so on a regular basis and my body was very mad at me and sore after wards which didn't help me keep the feeling but it was there for a lil while. I am just trying to hold on to both feelings as much as I can and hoping that just continuing what I have been doing the last few weeks and keeping up the muscle work (what very little I am able to) will keep me moving down that "right path" and I will get back to that place I was two years ago when I was really in remission... and maybe just maybe go even farther for once. When I first got sick they said I was young and extremely healthy before getting hit so it shouldn't take more than 2-5 years to get better. Well we are getting to 5 years now, and my relapses haven't helped anything but I am hoping that today is a sign that I can do it and not too far off schedule either.
Here's praying and hoping I can keep the happy thoughts (something I am not always very good at :)
TTY'allL

days go by

I was sick over the weekend and then better Sunday and sick on Monday and Tuesday again this time it was all slime and my sinuses (not fun and I won't get icky with the details). Suffice to say I was miserable. Monday I slept for 15 hours and it all started when I finally woke up. Getting past it all has been yucky and to be honest it isn't quite over yet.
And the pain has gone up, and my tolerance has gone down as the yuckiness drags on even if it gets better day by day.
I have been sleeping almost normal diurnal hours lately, up in the morning and down in the evening; but I am not getting my nice calm and focused group of hours in which I was getting so much done in the past. I am not getting much of anything done, physical or mental and that is frustrating the hell out of me.
So that has been my week so far. You are now undated :)
TTY'allL

lessons learned

Hello and welcome to another day in the life of a CFIDS patient :)
So Saturday I was sick and it was my cousin's wedding, UGH! I had a sore throat and maybe even a short Epstein Bar flare up (yucky mono gook on my right tonsil). I hate being sick even when I don't have anything to do. It tends to make all aspects of my condition worse and since I get sick to my stomach anytime I get ill it means I can't take any of my normal pills.
I missed the actual ceremony but I did make the reception since it was hours later. But the reception was at the Thayer Hotel at West Point and going through the military check point and dealing with problems stemming from my wheelchair and the fact that many of the guests were Army personnel in dress uniform it was really hard on my emotionally. The whole you lost your dream and you will never serve your country thing was like a knife I couldn't pull out of my chest. And on top of all that I was dealing with agonizing neuro pain triggered by me being sick and under stress and no matter what I took it didn't want to go away.
I also learned for the first time what people mean when they say that the disabled are treated differently. I had heard people say that but never understood. To me someone in a wheelchair was just someone sitting down, someone missing a limb was someone who had suffered but had some kind of adventure of some sort. I also grew up with a lot of older members of my family and I saw a bunch of them end up in wheelchairs but they were amazing and strong and passionate vibrant people so I never thought about it. But at that wedding I learned I was an exception. People don't want to look at you. They can't seem to keep a conversation or they continuously just say uh huh, or yeah OK. It made trying to make a hard and uncomfortable situation even harder and more uncomfortable.