ZONING OUT :-(
Today is a Fast-Forward Day - Back To The Future
I have been flaring up really badly today, I had started to feel 'iffy' yesterday and had a bit of a dodgy night last night but then today began...
I woke up feeling awful and the day has just gone from bad to worse in all honesty, my mouth and face is very swollen and painful, not to mention looks hideous! It is yet another of those 'can't stand to see my own reflection' days. Not that I ever can stand to see myself in the mirror these days, but I think you get what I mean.
Swollen and feeling terrible
I HATE to share these pictures but I know how important they are to being as open, honest and informative as possible on this blog; so deep breath and 'insert image.' My mouth is full of ulcerations and cuts again and my gums are swollen and tender, unless you have suffered it you can't imagine how painful it is to try and eat with a mouthful of ulcers and cuts.
When my mouth is like this just brushing my teeth hurts and leaves the sink full of blood from my weakened gums. I used to have repetitive dreams about my teeth all falling out, horrible nightmares that would play on my mind the whole of the next day, needless to say I got a little paranoid and began the habit of brushing my teeth about six times a day.
I hate to look at my own reflection
I keep 'zoning out' today; that is not the official term of what I am referring to however as there is no official term that is the one I am going with. I have always called it 'zoning out' as it's the best way I can come up with to describe what it feels like.
I become kind of lost and disjointed from myself, my mind cloudy and foggy, (sounds suspiciously like a weather forecast haha) my eyes roll into the back of my now heavy feeling head, which often lolls backwards, my vision then becomes unfocused and blurry, my pains in my body become more pronounced and I get a funny feeling in my chest, which is akin to the sensation you get during the start of a panic attack.
During these awful episodes I also get very confused and my words often come out slurred like I have had one too many and can barely keep control of myself. It is a really terrible feeling and is one of the most debilitating and unsettling aspects of my illness.
I have always wondered whether it is a common occurrence for any other Melkersson Rosenthal Syndrome sufferers and have recently had that question somewhat answered. I am a member of an MRS support group on Facebook, that has been a life-saver for me, and people often post about their own flare ups and the symptoms they are struggling with.
Link to the MRS Facebook support group
I was talking to someone from the support group the other day, he was having a flare up of his MRS symptoms and he described a strange feeling he gets as part of his flare ups; what he described was almost definitely my 'zoning out' put into his own words.
The MRS support group has been a real blessing to me, Amy found it when I was at my lowest and so poorly all the time that I seriously wanted to go to Dignitas in Switzerland and put an end to my constant, unrelenting suffering.
She found the support group of all places on Facebook, I would never have expected it to even exist let alone be so easily accessible but there it was and joining it has meant my first experiences of being able to converse and engage with other people who have the same illness as me. It has meant a unity and togetherness I can't get from anywhere else; because there is nowhere else that I completely fit in. Not when it comes to MRS and all the baggage it drags along with it.
Talking to people with MRS is something I have never experienced before
During this current flare up as with any other I also find that I can't stop urinating, yes not a nice topic but there it is, needing to run (or in my case hobble as fast as is possible) to the bathroom every few minutes is a pain in the derriere but it is yet another aspect of MRS and one that not many people are comfortable talking about. I said I would be 100% brutally honest on this blog and I am keeping to my word, however humiliating that may be at times.
I have had it confirmed by a fellow sufferer that I am not the only one that has this problem or who spends half the night going to and from the bathroom because of it. Neither of us are certain as to the direct reasoning for this particular treasure of a symptom but we assume swelling of the abdomen is likely to be part of it, and boy oh boy do I have that in abundance!
All these weird and never wonderful symptoms, that even doctors remain unsure of, are things that we can discuss freely with each other, we can discuss what we are comfortable sharing and have a listening ear, or rather a reading eye, of someone that actually understands what we are going through.
When you have a rare illness that in itself is a very rare thing too. In fact I have gone through most of my life without speaking to a single person that has MRS. Imagine that, imagine never knowing anyone who completely understands you and what you are going through...
Behind the need to communicate is the need to share. Behind the need to share is the need to be understood."
Leo Rosten
"Understanding is deeper than knowledge. There are many people who know you, but there are few who understand you."
Unknown
No matter how much people might try to understand what your life is like living with a rare illness, what it feels like to be you, it is never the same as when you tell someone something about yourself and they say; "I know, that happens to me too" that is invaluable. You could never quite grasp how important that feeling of being understood is until you have something that is so rare you are practically unique in your suffering.
My zoning out today has been happening all through the day, I have spent much of my time in bed but my mind wont rest, I am thinking about all the things I need to do this week and how inconvenient this flare up is. Not to mention how bloody terrible it is to be going through it yet again.
It's my sister's birthday on Tuesday and we are supposed to be shopping for her presents tomorrow, wheelchair or no wheelchair it will be difficult for me in this state. Not to mention the fact that my mind is a foggy mess so trying to have any understanding of the choices for her gifts is going to be extremely challenging.
It's like your mind is so 'mushy' that you can't get your thoughts into order, you can't make decisions, you can't work out money and how much things cost. It's like you just cannot think clearly at all, everything is confusing and mixed up.
"Pressure and stress is the common cold of the psyche."
Andrew Denton
I am thinking about all the important things that need doing and the fact that yet again my illness decided to rear its ugly head at the most inopportune time. It does get worse with stress and anxiety, there is definitely no getting away from that, so the more stressed and anxious I become about the situation the worse it all gets. I am in what is commonly referred to as in a 'catch 22' situation.
I have been wanting to start work on my second novel since Christmas, I have been dying to get started on a new journey. To feel like I am slowly but surely on the path to achieving something; even if that is simply a self satisfied kind of achievement and no one else ever reads what I have written. Unfortunately I have been too 'foggy' to be able to start, to be able to clear my mind enough to sit down and make a start.
For some reason this blog seems to fall into place, I am not saying that I believe I am sitting here writing some sort of modern day blogging masterpiece (that sounded somehow like swearing! haha) but because of the topic and the fact that I live it every single day it is flowing quite comfortably.
I am akin to my illness, it is a huge part of who I am, it is the worst part of me but in some respects it brings out the best, because no matter what happens, no matter how awful I feel, no matter how dark the situation when it has been weeks or months without a break in flare ups; I still come out fighting. I still stumble through another day, somewhat unsteady on my proverbial feet but I get there, from A to B I struggle through.
"And once the storm is over you wont remember how you made it through... You wont be the same person who walked in. That's what the storm's all about."
Haruki Murakami
When I have a string of good days, they are never brilliant but to someone like me they can be considered good but when I get a string of those 'good' days I forget somehow just how bad it can get. Then I have a day like today and I have to come to terms with my life all over again.
It's almost like my psyche protects me from myself, by allowing me to forget so easily and quickly the many parts of MRS that are soul destroying. That chew you up and spit you out every time it takes a hold of you. My mind seems hell bent at the moment of not letting me get to the point where I spend my 'good' days anticipating and dreading the bad days. It's like it achieves this by self administrating a medicinal dose of temporary amnesia.
Don't get me wrong my good days are the equivalent to a bad man-flu day, they are no better than that but they are nothing compared to these bad days that get me in a death-grip and refuse to let go, that cloud my mind, make me feel like I can barely stand on my own two feet and take away any semblance of what 'living' actually feels like...
Days like today are the reason Melkersson Rosenthal Syndrome is so terribly hard to live with and to survive because as much as anything it kills your spirit to feel this bad, to be in this much pain and not to be able to do a thing about it...
(Apologies if any of the post sound confusing or mixed-up, please be forgiving when you consider that I am right in the middle of a flare up and it has taken a great deal for me to be able to sit here and write this. Sitting back in my chair often, trying to make sense of what I am trying to say; hopefully it will still be informative. I would love any of my fellow MRS sufferers to comment with regards to their own symptoms and whether or not they can relate to mine as I know how diverse and complex our symptoms can be. I would also be happy to read comments from anyone else with or without a rare illness who just has something to say.)
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