RPC has moved! These pages have been kept for historical purposes

Nebbs · **02-19-2015, 04:21 AM**

Fortunately I have not had anything to compare. But I can give hugs and RP and virtual cake.

*hugs*

Parvacake · **02-19-2015, 06:32 AM**

I don't have autoimmune myself, but a plethora of other things to deal with like severe progressive hearing loss, thyroid issues, gallbladder issues, and seizures from my childhood that have stretched onward and affected my adult life. Won't get into details in a public forum but they do all suck so many hugs your way!

g0ne · **01-18-2016, 08:21 AM**

I love it when people think that by giving me some help they will be unfair to other people. News flash. The other people don't have a painful mixture of lupus, fibromyalgia and what not to deal with.Â

It's funny how it takes days for you to regroup and gather your strength again, and then five minutes with a negative person shatters all that hard work.Â

It's even more hilarious when you're being denied basic rights such as a happy, healthy education just because you don't look sick. And because it would be unfair on the other student who fails his courses just because he can't pass them. Or maybe you shouldn't have picked education as a route because you are sick and you can't handle it.Â

Not only does my illness cripple me, but being berated because I'm ill does wonders too. Why are you comparing me, a broken, battered zombie, to a healthy normal individual? I'm not normal. I'm not healthy. I don't remember what it is to feel good.

Gotta love living the spoonie life!

Thanks to anyone who took the time to read this, and thanks to the RPC for not judging me because I'm a lupie.

(Okay, I'm done ranting. For now.)

Tara · **01-18-2016, 09:26 AM**

(01-18-2016, 08:21 AM)Eleni Wrote: I love it when people think that by giving me some help they will be unfair to other people. News flash. The other people don't have a painful mixture of lupus, fibromyalgia and what not to deal with.Â

It's funny how it takes days for you to regroup and gather your strength again, and then five minutes with a negative person shatters all that hard work.Â

It's even more hilarious when you're being denied basic rights such as a happy, healthy education just because you don't look sick. And because it would be unfair on the other student who fails his courses just because he can't pass them. Or maybe you shouldn't have picked education as a route because you are sick and you can't handle it.Â

Not only does my illness cripple me, but being berated because I'm ill does wonders too. Why are you comparing me, a broken, battered zombie, to a healthy normal individual? I'm not normal. I'm not healthy. I don't remember what it is to feel good. Â

Gotta love living the spoonie life!

Thanks to anyone who took the time to read this, and thanks to the RPC for not judging me because I'm a lupie.

(Okay, I'm done ranting. For now.)

*hugs Eleni tightly but gently* I'm sorry hun...rant as long as you need to, we'll listen.Â

For those who don't know...the 'spoonie life' is living with a limited amount of resources available to you day by day. A normal, healthy person has unlimited 'spoons'. Those of us who live with something chronic don't have unlimited spoons. We have to pace our 'spoons' Anything that a healthy individual can do without thinking we have to think 'will this take up a bit of our resources?' and go from there. Sometimes it's a toss up between eating and sleeping for our last spoon. And we don't always start with 10/10 spoons. No, we start at 5/10 or 2/10. Those are the bad days. The good days we have 8/10 or 10/10 or on really really rare cases 12/10+.Â

So, um, yeah. Back to cuddling Eleni. *cuddles Eleni* I can't offer any words of comfort because I don't really know you, but I can almost promise you that after this rough patch, it'll get better. *goes back to cuddling*

13uddy · **01-18-2016, 09:32 AM**

Eleni ( *hugs* Hi Eleni!Â )Â already knows a little about my health issues, and I've mentioned bits here and there in various topics, so if I'm repeating myself I'm sorry. Â

The short list includes: Â
Â - Diagnosed withÂ Acute lymphoblastic leukemiaÂ when I was only 4 years old.
Â - Have many, many issues stemming from both the cancer itself and the treatments. Â Among them are multiple heart failures, lost most of my ability to hear (I can technicallyÂ hear some sounds, but I'm legally considered deaf. Â So I can listen to some music, I'm just not hearing all of it and I have to look up lyrics to know what is being said, and that is if I can even hear them being said at all), no spleen and a compromised immune system both, constricted (and damaged) esophagus, minor brain damage and many, many other things ranging from chronic migraines to weaker bones and so on.
Â - I'm allergic to some thing(s) in human blood. Â There is stuff in almost every other person's blood that causes serious problems if I need a transfusion, and any potential transfusion has to be treated before I can get it.
Â - More recently, I've developed some issue with my nerves (not to be confused with panic attacks, which I also have). Â At first my doctors thought it was Fibromyalgia, but extensive testing is still inconclusive as to what the problem actually is. Â My legs are hit the worst. Â I really don't know how to describe it accurately, but it is sort of like a very intense feeling of "pins and needles" when your leg falls asleep coupled with both numbness and constant pain. Â Standing and walking are extremely difficult even with help of a cane or walker, but I'm too stubborn to give in and just use a wheelchair all the time.

So yeah, that is the short list.

I try not to let it get to me because, honestly, what is that going to accomplish? Â But I'm only human, and some days I'm going to be overwhelmed just like anybody else. Â

There are some benefits to it all as well. Â I realized that I accomplished my life-long dream of being a mutant like in the X-Men comics on a technicality (unfortunately, no spiffy powers, though), my speech impediment from my hearing loss is often mistaken for an accent (a lot of people assume I'm British, though to be fair I do watch a lot of Doctor Who, Red Dwarf and other British TV), and I get to say weird things like "The doctors said I wouldn't live to see age 11, and I just turned 36 in October. Â So either I made it or I look REALLYÂ good for a dead guy!" and things like that.

One thing that really bugs me, though, is when people say things like "You are very brave!" and things like that. Â No, no I'm not. Â I just don't know anything different than this. Â I don't have a "normal" or "healthy" to compare to, this has been a part of my life for as far back as I can remember. Â If I'm anything, I'm stubborn, possibly delusional. Â Laugh

Roe Dad · **01-18-2016, 02:37 PM**

*gives everyone here a big hug*
I know my mental illness and physical ailments don't even begin to come close to these so I offer hugs with Nebbs.

Azureus Scipio · **01-18-2016, 03:03 PM**

I too have an Autoimmune disorder.. but mine is of the much more visible nature o.o
Just look up Psoriasis it saves me from much explination... but needless to say I know how you feel! but remember to love yourself!

« Next Oldest \| Next Newest »
Pages (2): « Previous 1 2

The 'Any illness or disease or problem is bad' and its awareness thread

RPC has moved! These pages have been kept for historical purposes