Me in a nutshell... Coping with life... Living with Melkersson Rosenthal Syndrome...

"You never know how strong you are until being strong is the only choice you have."

Unknown

I have an illness called Melkersson Rosenthal Syndrome; does it define me? Well I told you about the illness before I told you my name so while I would like to say that no it does not dictate who I am I would be lying.

This illness is debilitating in every way that you can imagine, it has stolen my identity, it has imprisoned me in a body I no longer recognize and it leaves me suffering immensely every single day.

So, a few of the symptoms; swollen lips, face, throat, neck, epiglottis and larynx, not to mention feet, ankles, legs, stomach and back, oh and for good measure swollen glands and the blood vessels in my head! You name it and it swells!

My lips/face embarrassingly swollen and very painful :-(

The pain is not very easily described and no I am not trying to be ambiguous there, the reason the pain is not very easily described is that it runs along my nerves etc causing all sorts of strange and not so wonderful sensations that can change from one moment to the next creating a somewhat musical symphony of pain! Joy for me!

I now look into a mirror, when such an endeavor cannot physically be avoided by any means possible and see; well I see me, but a hideous, contorted, version of myself, one that makes me turn away in disgust, in utter self revulsion. My long suffering partner, Amy, would hate that I have written that, she would hate even more that I believe it to be true but I said to myself before beginning this blog that I would be 100% honest in both my depiction of myself and of Melkersson Rosenthall Syndrome, otherwise what would be the point? So here it is; the truth.

"Bravery is being the only one who knows you're afraid."

Franklin P. Jones

Anyway, back to the unavoidable reflection/mirror situations; they can be found in elevators, shop windows, hair dressers (which is why my hair is in such dire need of an extremely vigorous cut), dressing rooms, etc etc, these places that were designed for the sole purpose of cutting people like me down to size. We can be momentarily happy in our existence, picturing ourselves as we once were when BOOM; reflection alert! And there you have it, the truth of the matter, MRS has changed my appearance as well as everything else about me.

For those of you wondering how it has done this, well I will take you through a few vital steps… MRS = swelling, which means that first and foremost my face, limbs and body have all swollen quite significantly. When I was a child it began as just my lips, which was bad enough as I was only 7 years old and far too little to have such an obvious abnormality that stood out as a calling card to all the bullies in the playground, the street, the bus, the park, well everywhere basically… But then as the years passed rather than improving as the doctors had hoped my then undiagnosed illness started to progress until it had completely enveloped my body.

In my late teens I finally got a diagnosis; Melkersson Rosenthal Syndrome, an extremely rare, in fact practically unheard of illness with no known cure or treatment available. In fact, they had to go one or two worse than that certain bleakness; there was also no known specialist in the world and therefore no one, anywhere even looking for a cure or treatment!

Meanwhile this illness, this ghost of an illness was slyly snaking its way through my life, wrapping itself around my body and squeezing the very life out of me. It spread everywhere! I even ended up with a paralyzed right hemi diaphragm, so my breathing became affected. I could no longer enjoy long soaks in the bath with a good book because laying down with the pressure of the water on my chest suddenly felt like I was suffocating and trust me that takes the relaxation right out of R&R!

My Feet, ankles and legs swelled painfully making even walking excruciatingly painful to the point where I am often left with no choice but to use a wheelchair, a loss of my independence and a another stab at my pride. 

"Due to cutbacks and until further notice, the light at the end of the tunnel has been turned off."

Unknown (Made me laugh, go on crack a smile)

My thigh on the left side has a patch that kind of feels, as I like to refer to it; ‘dentist numb’ meaning I can feel pain and sensation but it has that strange numb feeling at the same time that you get when you have treatment at the dentist.

The swelling around my face has also worsened, I have had a camera put up my nose and down my throat, a nasal endoscopy, more times than I can count (yes every time I have been awake) and this is because the swelling in my epiglottis and larynx threatens to cut off my air supply.

My stomach swells enormously due to swollen subcutaneous nodules, I have also put on a lot of weight as I have been on steroids for years now and have no choice but to take a controlled dose of them as my Adrenal Gland functions insufficiently and does not produce steroids itself. 

Most people don't realize this but steroids are actually vital to our very existence. The reason being that when our bodies are under stress be it physical or emotional we produce extra steroids to cope with this upheaval, without them we could simply drop down dead. Well I don't produce them anymore... So, signing up to take steroid tablets for the rest of my life... Yep, that would be me...

Pills, pills and more pills...

My arms and hands swell up meaning I can’t wear a wedding ring and on top of that struggle at times to even peel an apple, this is not something that is constantly the case but it happens and it happens often.

There are many things about my appearance that MRS has changed over the last few years so when I find myself in a situation where by seeing my reflection is inevitable I cringe, inwardly, outwardly, I just cringe; because that person squirming in the mirror, hoping no one else looks towards her and notices that she’s there, that person trying to avoid eye contact with her own reflection, that is not me. That is the monster that is MRS, the alien life form effigy that is now in an existence all of its own, with me; a stranded prisoner trapped inside.