Tuesday, 3 September 2013

Sjogrens Syndrome

Sjogrens Syndrome.

It sounds like a bad Swedish Band name, except its pronounced *sho-grins*.

Which makes it sound like something you need before you go on stage on Broadway.

"Make sure you all have your Jazz Hands and Show Grins girls".

I never realised just how much hope I put in having a name for what was wrong with me. I thought once I had a name for it, a medical term, suddenly it would be like 

"what's wrong with you?"

"I have Sjogrens Syndrome"

"Oh, I understand" or "Oh I see" or even "Oh you poor thing, no wonder you feel like crap all the time"

The reality is, when people ask what's wrong with me and I tell them, they still don't understand. I still have to explain everything. I have to rattle of a list of symptoms, all of which seem to have nothing to do with each other. They just seem like random complaints.

It just feels like one big excuse with a name.

For example, at the moment the Sjogrens is causing severe joint pain, which comes and goes, so one day I will seem fine, the next day I can barely move. I have constant sinus infections/throat infections because my body now has issues producing saliva, or any sort of bodily fluid, meaning infections occur easier. Also, because it is auto immune, my body is constantly attacking ITSELF. 

Oh, and fatigue.....You know that feeling after you have been struck down with the flu for a week straight, barely able to get out of bed the whole time, then you get up and start moving? You feel bone weary, in your muscles weak and shaky? That is how the fatigue feels to me. On a good day I am fine and I can go about life normally. Go to the gym, go to work, come home and do the housework, run around after Mini Miss and feel fine. On a bad day I can barely get out of bed at all. Most of my days walk that middle line, the one where I'm not great, but not bad enough that I can't get out of bed. That limbo, where I look and feel like crap, but manage to keep going.

Some days I run on sheer will power, which is funny, because my will power is not so great. If it was, I would certainly be a lot thinner!! 

Knowing there is a very real possibility that there is more to it that just this one thing, and that, in reality, while I may find a treatment for some of the symptoms, I will have to live with this for the rest of my life? That is beyond overwhelming. The urge to just give up is strong at times. It seems too hard. It's too much. I HATE with a passion feeling like this all the time. I hate the disease and I hate the excuse. 

I want to be normal again. I want to be well again.

I don't want a name, I want a cure. 

Having a name for it feels just the same as using the term procrastination. It just gives what you are doing a name. Its still being lazy, but it has a name. 

And as long as people don't understand that an illness can leave you perfectly fine one day and crawling out of bed just to pee the next day, it will be no different. The name is just a term for the excuse. I can see people thinking "oh, so the doctor gave you a name for your excuse, good-o. Now you can complain about your symptoms, which for all I can see are really just in your head, and have a term for it. It's still just excuses and complaints". 

Except it isn't. 

I don't want to feel like this. So badly so that I push past what I am capable of. I push through the pain, the tiredness, and I end up where I am right now. At the end of my tether, looking for any way out. Any way to escape what I feel, what I deal with everyday. I become emotional, depressed and feel completely useless. I feel like a burden on everyone, especially my family. I feel like a waste of space. 

Suddenly, I can understand with clarity why my Mum gave up her struggles. 

Thankfully, in a way I guess, I have lived through the aftermath of that "giving up", and I refuse to do that to my family, ever. So, I will "sook" for a day or two, and then brush myself off and keep fighting, keep on going. My family need me, and no amount of looks, dismissive "oh, i see"'s, no lack of understanding stops that from being true. 

My girls NEED a mother, and I, for better or worse, am what they are stuck with, so I best make sure I do as good a job as I can! 

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