Friday, March 14, 2014

You asked for it....Part Deux

After some conversations with fellow sufferers I decided to add an addendum to my last post regarding answers to health related questions from well meaning friends and/or family.

For those of us who suffer from chronic conditions that cause wide spread chronic pain life is hard on a good day. We have learned through trial and error what we are and are not capable of doing in our everyday lives and try to prevent as much of the pain as possible and even knowing that we tend to fail frequently and overdo things. Most days, even those days where we limit our activities to that which is absolutely necessary, we suffer from the kind of pain that would send most "normal" people to the ER! A lot of us made multiple trips to our local emergency rooms early on in our illnesses because we didn't know what our "new normal" was or how much pain is "too much". In my first two years I was admitted to the hospital three times, almost died twice and made so many trips to the ER that I lost count....I finally gave up when I realized that the pain was my new BFF and I just had to get used to it because there was nothing more that the Dr's could do for me! As it was my last two ER visits I was treated like a hypochondriac pill head and sent home with nothing more than an order to rest and to call my PCP for an appointment. Healthy people just don't get it! They have no way of comprehending what we go through 24/7, 365. It's not their fault either. Why would they understand? How could they? Even those people that have had family members or close friends with a chronic illness still have no way of truly understanding this kind of suffering. Only those that also suffer can ever really be "in the know"! It's like death, only those that have experienced the loss of a loved one can empathize with another that has had the same loss. 

I hate the thought of anyone else having to suffer this way but at the same time I am glad there are others like me because they are the ONLY ones that will ever be able to understand! It's nice to have people to talk to period but it's bliss to have people to talk to the know exactly where I am coming from and know exactly how I feel!!!!!

Friday, March 7, 2014

You asked for it!

So, a few days ago a curious aquaintence asked me the question that those of us with chronic invisible illnesses hate to try and answer: "What does it feel like to be sick on the inside but look healthy on the outside?" This question was followed by the usual "It must be so hard! I'm so sorry!" and "Does anyone ever accuse you of just being lazy or lying?" Then a friend of the aquaintence chimed in with "Well, if I were you I'd milk it for all it's worth! Bilke the system like all the other people collecting disability...." At this point in the conversation I was so angry that I had to walk away for fear I'd do or say something that I might regret later. I don't really mind the honest questions but when someone I barley know has the nerve to interject such an ignorant and hurtful accusation toward people on disability I lose my shit!!! Now, are there people out there collecting SSD that don't really need it? Yes there are. Are there people who lie on government paperwork in order to collect benefits to which they are not entitled? Yes. However given my almost two year battle with social security, even with the laundry list of legitimate medical conditions that I suffer from, I don't think there are quite as many "fakers" out there as one might think. Of course it's a completely unfair system so I could be totally wrong on that point but just because there are a few undeserving people collecting benefits out there doesn't make everyone on disability a liar or a fraud! That said, the liars and frauds are making it very difficult for those of us that truly need our benefits! We are made to fill out endless streams of paperwork, hire advocates and attorneys, get letters from our doctors and,in my case, present ourselves to a judge just to be believed at all. So, yes I've been accused of "faking it" and let me tell you something IT SUCKS!!! Now that I've sufficiently vented over that part of the conversation I want to focus on the legitimate question. So without further ado and with no holds barred here is the answer to "What is it like.......?"

Let me begin by stating the obvious.....being sick BLOWS! There's just no other way to say it. Worse still is when you feel like death on the inside but no one can see it! That's where all the questions come from isn't it? That's when the accusations start flying because no one can see the agony. There aren't any cuts or bruises to make the pain visible to the naked eye. It's not like we wear the obvious signs that say "Caution Sick Person Inside"....although I have considered getting a tattoo that says just that....

I've been trying to come up with a way to explain it so people can at least get an idea of what it feels like and here's what I've come up with so far: You know how you feel when you're coming down with the flu? Not allergies, not a cold...the flu. That unrelenting ache in every muscle in your body, the feeling that all your bones are breaking all at once, the obnoxious fluctuating fever that drains every drop of your energy, the headache that makes your eyes feel like they are going to pop out of your skull, the horrific fatigue that makes even getting up to go to the bathroom virtually impossible? Now, imagine those symptoms then multiply and magnify them. Then imagine them persisting beyond their usual 3-5 days, try to imagine that you have these symptoms 24 hours a day, 7 days a week for weeks or even months at a time. That is how I feel! I have had those "flu" symptoms 24/7 for the better part of the last two years! They come in waves or as my Dr calls it "flares". One of my flares last year went on for almost exactly 3 months. The aches and fatigue NEVER go away but the fevers, headaches and "breaking bones" only seem to happen when I'm in a full blown flare. Do you have a better grasp on how it feels now? Let's go a step further. Take all the "flu symptoms" I described and add blurred vision, irritable bowel syndrome, restless leg syndrome (it feels like bugs crawling up and down your legs UNDER the skin..), migraine headaches, muscle spasms, limb weakness, difficulty swallowing, dry mouth/eyes/nose and photosensitivity/sun rash. Sound like fun yet? Nope, not done! Now add Dysthymic Disorder, Generalized Anxiety Disorder, Panic Disorder W/ Agoraphobia and Major Depressive Disorder!! This is what it feels like on the inside yet I look completely normal on the outside. It's sad, scary and frustrating to say the least! To literally feel like your dying a slow agonizing death but no one can see it and no one believes you....

I am sorry to be so depressing but if you don't want to know then don't ask because I am done sugar coating things! I am done trying to make everyone else feel better! I am sick, I hurt and I just want people to feel free to ask as many questions as you want but please remember to not judge and most importantly remember....You asked for it!!!

Tuesday, March 4, 2014

Something's Gotta Give!!

I need something to change! I need my life to go back to the way it used to be! I want to be happy again, I want to be able to work again, I want to feel something other than pain, I want to be healthy again.......I just need a break dammit! Is that too much to ask for?!? Is it??!

When I say "break" I don't mean a vacation, although that would be nice....somewhere tropical and warm where I can sit on a beach chair with a drink and just listen to the ocean. Where I can hold my gorgeous husbands hand and walk barefoot in the surf while watching a perfect sunset. Yes, that would be very nice but that's not what I'm talking about.......I need a break from the Hell that my life has turned into! My physical and mental health has become too much for me to handle. I can't do anything anymore without having to consider how it will make me feel later, I can't make plans because I have no idea if I'll even be able to get off the couch that day and I don't want to disappoint anyone by canceling at the last minute.....I am only 34 years old and I shouldn't have to think about these things!! I shouldn't have to feel like this!!! I shouldn't have to blog at 1am or post statuses on Facebook about being sick just to be able to "talk".......I am to damn young for this! I can't even keep up with my beautiful kids anymore and then they ask me why I can't do the things I used to do with them and my heart breaks even more!! They are so wonderful about it but I know they don't really understand and I don't want them to resent me later because they think I am lazy or that I don't love them. I love them more than my own life and I wouldn't have survived this long without them but I see the disappointment in their eyes and then I think that maybe they would be better off without me! Then there's my amazing husband.....he has the most beautiful soul! He has been my rock and my best friend through all of this but I can't help feeling like I am bringing him down....when he signed our marriage license he didn't sign on for a sick wife! I know he meant all of his vows, including
the "in sickness and in health" part, but at our age you never think that will apply until much, much later. That said, if the roles were reversed and he was the sick spouse I would be by his side every second just as he is for me! You might be thinking "why do you feel bad if you would do the same for him?", well, I feel bad because I just don't feel like I am a good wife! The wife is expected to keep up the house, take care of the kids, do the laundry, make dinner and, in this day and age, help contribute to the family finances.....that may sound old fashioned but when I was healthy I could do it all with energy to spare and I was so proud of that! I was a good wife and mother, a good housekeeper, a good cook and a good employee at my full time job! Now if I need to do any housework I have to pick the most important task on the list and I am lucky if I have enough energy to complete that one thing. If I push myself to do more than that I will spend the next day or two in bed trying to recover from whatever I overdid it's pathetic and I am sick of it!!!! 

In addition to all of that I am lonely! Like I said, it's pretty sad that I have to blog and post FB statuses just to be heard. All my friends have jobs, lives and families to deal with.....they don't need my shit on top of it, nor do they WANT to deal with my never ending saga! I can't say that I blame them... I don't want to deal with it either! I'd be lying if I said that I have never considered giving up. I have considered it, many times, but if there is one good thing I have learned about myself in all of this is that I am NOT a coward....In fact I think I am pretty damn brave! I have lived through things in the last three years that most people will never have to live through in their entire lives and I'M STILL HERE!! 

I am just having a really hard time accepting what is happening to me! I have an even harder time believing that anyone else can accept it either.....I just want to feel ok again.....Something's gotta give or I'm gonna go crazy!! Assuming I haven't already gone crazy already that is.......