Latest Flare-Up

Latest flare-up strikes me down

I am extremely swollen at the moment and it is getting worse every day

My chin is swollen, red and rock hard, the same description can now be used to describe my right cheek. My lips are grotesquely enlarged, so much so that my top lip has two very painful and visually vivid splits, running from my teeth up towards my nose.

My chin is rock-hard and very painful, this is spreading all the time

Melkersson Rosenthal Syndrome is an unsightly illness, that often leaves sufferers too embarrassed to leave their homes during flare-ups and understandably so when they become the butt of people's jokes. I personally have often been pointed at and stared at; public humiliation is not something any of us strive for after all.

Yes, I have been there myself, wrapping a thick woolen scarf around my face, looking like a cheap Mummy imitation as I made my way nervously to the doctors to beg for mercy, for some kind of help, any help whatsoever, just so long as (s)he made this Godawful swelling disappear.

It is extremely painful and I wish I could make it go away 

I can understand wholeheartedly why people with MRS still make themselves masters of their own disguise in order to navigate the streets but I refuse to be one of them any longer.

In fact if I catch myself cowering from the glare of other people's scrutiny I give myself a mental nudge and if that doesn't work I walk headfirst into the nearest wall (not really) but I do tell myself again and again that this is who I am, like it or lump it. I can't change who or what I am; I just have to accept it or spend my entire life at war with my own reflection.

Seriously?

I sound so 'together' maybe even a tad self righteous but if I am completely honest I will admit that I haven't had a hair cut in years, not one that anyone other than my untrained partner or equally untrained mother haven't performed anyway. 

Why? Because I am terrified! Absolutely mortified at the mere idea of sitting in-front of a great, big, mirror and staring at what has become of me, with a hairdresser and everyone else in the salon doing the same thing, staring... All just staring.

Maybe I am wrong to think like that, maybe I wouldn't hold any interest for the other patrons of the salon and the hairdresser would be so caught up trying to locate anything other than a mass of split ends that she would be oblivious to anything else but I am too scared to take that chance.

Years of bullying has taken it's toll; I am a shadow of who I could have been

After years of bullying, of torment at the hands of anyone and everyone who took exception to the way I look I have been left a wreck of a human being, I am the rickety, broken, old boat, with holes littered throughout that washes up on the shore and becomes nothing more than a tale of woe. 

I am the image of a story of what 'could have been' had it not been for that big, ferocious, wave that came out of the blue and capsized me. That wave in this scenario is of course Melkersson Rosenthal Syndrome.

So my horrendous dark brown mop of hair is going to survive another day, week, month, maybe even another year... Before you know it I will somewhat resemble a Yeti and the emphasis will no longer be on my swollen face and body... probably because you wont be able to see any of it under the avalanche of hair.

Being Rare

Having a rare illness does not give me a feeling of being 'special'. I don't feel like I have a golden ticket to some amazing club somewhere, which is reserved for people like myself who suffer with these illnesses day after day after day... no break... no rest... no cure...

Being rare makes me feel lonely, I am not alone; I have my lovely family, my amazing partner, my wonderful friends but you don't have to be alone in order to feel lonely.

Having an illness and symptoms from that illness that no one else has or understands is a very lonely place to be. I can't talk about it knowing the person listening to my troubles faces the same issues as me, the same trials and tribulations. I know that I am the only person that feels what I feel and hurts the way I hurt and that no one else can understand it completely.

When I told Amy that I keep 'zoning out' she had no idea what I meant, in all likelihood neither would anyone else as I have invented the term to describe symptoms that I suffer with on a regular basis, I would love to know if any of my fellow sufferers of MRS 'zone out' too.

I try my best to put into words what I go through when that happens, in fact I have penned a whole post on the matter but alas; here I go again...

My vision becomes blurred, my eyes wont focus, and according to Amy they roll into the back of my head. Everything I hear becomes echoey and distant, like someone is holding a long piece of pipe from their mouth to my ear and are then whispering secrets I am desperate to hear but can't quite make out.

My head feels 'foggy' and I cannot process my thoughts. Words come out slurred and incoherent, I imagine whole conversations have and are currently taking place then respond with an answer to a question, which was never asked.

Another day, another flare-up

It is now two days later than when I typed what is written above, I was far too poorly at that point to continue writing and trust me you should thank me for that wise decision as the 'foggy-headedness' that consumed me would have led me to write a lot of nonsensical gibberish. 

I have been in so much pain over the past couple of days that I have been battling with myself over whether or not I should simply give in and go to hospital. I have been taking Oxynorm as if it is going out of fashion and have been barely sleeping.

Amy has been extremely devoted to the task of helping me get as much sleep as possible by stroking my back and playing with my hair in order to make me feel relaxed. 

The problem is that I do then manage to fall asleep but still wake up a very short time later when the pain decides to give me a rude awakening or the inside of my nose is so swollen that I can't breathe using my NIV nasal mask anymore! Who needs alarm clocks?

It is now 8.16am and I have been awake since 1.30am, the pain a constant barrier between myself and sleep. I feel drained, nauseous and exhausted but I know that sleep will evade me even if I go and lie down once more. Like a cruel joke at my expense it is there placed just out of reach to tease me and make me desire it even more.

Painful Swelling

My whole body is a swollen mass of pain right now, everything hurts and feels tender to the touch, like I am covered in bruises that are invisible to the naked eye. 

My stomach is so swollen that if you didn't know me you would probably assume that I am pregnant, which is yet another cruel joke at my expense seen as that is something I want more than anything else but cannot have.

My legs, ankles and feet are extremely swollen and it is painful simply to walk. When they get like this I tend to hobble like I am an 80-year-old who should be using a walking frame, in fact yes, I do actually have one of those! It is hidden away from view in Laddy's room as I refuse to use it, I would see that as me giving up yet another aspect of myself and I am not ready to do that, no where near ready in fact.

The pain is intense, the swelling pushes against my toes and makes me cringe

I seem to have lost my ankles in the above image! lol, see I can laugh about it, in fact isn't that the way that most people deal with an embarrassing situation? They laugh and point out the issue before anyone else can? 

Amy is forever telling me not to do it but it's an automatic reaction, self defense...Really, if I am honest, I want to do anything but laugh, crying would probably be a more honest response.

The swelling pushes on my nerves and creates a mixture of pains just for good measure, the pressure as it pushes onto my toes leaves me with a cringe-worthy and extremely uncomfortable sensation, walking hurts so much that, for example, I find myself avoiding going upstairs until I have absolutely no choice.

My stomach aches from the swelling and my chest hurts with the effort of pushing my chest out to breathe. Having a paralysed diaphragm means that I must force my chest outwards to give my lung room to expand as normally your diaphragm would move down to make room for your lung's inflation.

Normal chest X-Ray

 

A chest X-Ray of someone with a paralysed diaphragm

The above X-Rays show the difference between what it looks like when someone has a paralysed diaphragm as apposed to someone with a working diaphragm. 

It is very noticeable to look at on an X-Ray and it is extremely noticeable to live with. Add to the breathing mix chronic asthma and swollen airways (Epiglottis and Larynx) and you are going to have problems.

Causes and problems associated with having a paralysed diaphragm

The cause of my paralysed diaphragm is of course, as always, Melkersson Rosenthal Syndrome. Although they have no clear explanation as to why it has happened the general consensus is that it is the root cause.

During a flare up when my airways are more swollen than normal my breathing becomes very problematic along with my swallowing. It kind of feels like I have a pocket at the bottom of my throat collecting fluid when I drink, making me choke and struggle to swallow.

I have been seen by the 'Swallow Team' at Royal Preston Hospital and they have confirmed this as the problem, I trust myself to be able to self diagnose these issues prior to an official diagnosis simply by the way I feel. 

Time and time again I have told doctors what I believe the cause of a problem to be, had them look at me side-ways clearly thinking that I am crazy or imagining things, only to then be proven correct.

I am a big believer in the fact that no-one knows you better than you know yourself and no one knows a child better than their parents (if they are good parents of course)because who pays the most attention after all?

So this 'fluid pocket' created by the swelling in my throat is driving me crazy and most likely sending Amy on that roller-coaster known as 'Momentary Insanity' listening to me constantly trying to clear my throat and coughing and spluttering because I can't.

Tough Decisions

Amy and I have now come to the conclusion that the best option, or rather the only option, is for me to 'give in' and go to hospital today. I have been getting worse and worse with this flare up and not getting any better.

We know from previous experience that if I don't go in now for a couple of days I will end up in later for a couple of weeks; and that is something that would kill my spirit rather than simply cause it minor injury like a couple of days will.

My lips are very swollen and I have painful splits in the skin of my upper lip and in the corners too; I worry about that too in relation to a hospital stay, as I have been targeted a few times now by people who were clearly once playground bullies and who unfortunately never saw the error of their ways.

I can't wear a scarf around my swollen face in hospital, I can't hide, I simply have to hope that no one 'picks me out of the crowd' to take issue with.

I will have to hold my arms out again and become a 'pin cushion' once again, years and years of having to have canulars (needles inserted for vein access) along with my MRS in general has caused my veins to be thin and weak. It is extremely challenging for them to get access in the first place and my veins often simply collapse within a day or two.

I have had canulars in my feet before now, they have threatened to put them in my neck and I have had a piccline (semi-permanent access to a main vein near the heart running mid-way down my arm) twice. 

So off I go, wearing loose fitting clothes ready for the inevitable monitoring equipment that needs to be attached and the needles that will be injected. 

I am hoping against hope that I will feel much better after a few IV medications, the usual suspects being Hydrocortisone steroids and Piriton Anti-Histamines amongst others, and that I will then be able to come home. 

I'm desperately wishing that I will not have to spend the night, or worse a succession of nights but  at this point I will do what needs to be done. I will do my penance and stay in for as long as I need to so that I can return home to Amy feeling somewhat human again and not like something out of an episode of The Walking Dead (one of Amy's favourite TV shows).

I may not be able to write a post for a few days, we will see what happens, but if I don't give in and go into hospital today I run the risk of ending up in Intensive Care again and that is not somewhere I am in a hurry to head back to.

Any good vibes and thoughts of a swift and problem free recovery from this latest flare-up will be gladly received. Thank you so much to anyone who has been loyal enough to read my post this far lol, it probably isn't up to standard as I kind of feel like I have been run over by a Jet and subsequently mauled by its engine! 

All the lovely people that follow my blog and anyone new to it too are all appreciated; wish me luck! :-)