There is more strength in UNITY than in NUMBERS alone

Feeling Hopeless - need your help...

At the moment I really have no capacity or ability to write anything other than despair because short of that I am inflated with nothing else.

I am the balloon left behind at the party because it has a slow puncture and will soon be nothing but a useless piece of what it once was with a little string attached, reminding you that at some point it was anchored to something. That's what has been left of me since my doctor pretty much gave up on my situation and walked away, the only dredges of air inside me are consumed by despair at my current situation and fear about where I can turn to from here.

Me swollen and in pain trying to celebrate my birthday.

Amy has been making herself busy writing to all sorts of people who work within the Rare Disease community and when you search those people out you realise that it is very much a community but yet again we are on the outside looking in; through windows kept pristine because inside are all the 'bigwigs' and outside arrives the window cleaner frantically wiping away the dirty unwanted smudges we are leaving to show of our presence. Will they ever know that we were even there? That we even existed?

The loudest voices typically are the ones that are heard again and again and then there are the rest of us, meekly calling out, a minority of a handful of people across the world, unable to even commune in the same space at the same time to make our voices that bit louder, we are quiet as little mice and probably just as annoying should we be discovered.

We convince ourselves that someone, somewhere will take an interest and want to help us, will have the means to help us; but we are the comedians at our own show, eagerly laughing at our own jokes. We are merely a drop in the Rare Disease ocean, there are currently approximately 7,000 different rare diseases in existence and more being discovered every moment, 

It is estimated that 350,000 people are living with a rare disease world-wide, add to that that approximately 50% of all rare diseases/disorders do not have their own foundation working with them and for them to try and find help and to raise their voices.

It scares me just how small we really are compared to the BIG illnesses and the not as BIG but still much BIGGER rare diseases, we are a molecule if you really look at it, our whole support group community on Facebook consists of a tiny 148 people, significant to us, because we have all suffered alone for so long but as a collective, as a group of individuals in dire need of being heard; our voices are just too small.

I recently took the time, along with my partner Amy, to write a questionnaire about Melkersson Rosenthal Syndrome and send it out into the world with my details attached; hoping against hope that everyone else with this awful illness would feel as passionately as we do about getting help, raising awareness, finding a treatment or better yet... a cure.

In the weeks since I have sent it out I have received only 2 copies back and a minor flickering of interest. I am hoping that after years of being let down it is a deep routed cynicism that is sitting squarely upon my right shoulder whispering cruel jibes, that people don't care enough, that no one will see the importance of trying, that no one else will bother to complete one...

However in our situation we have no choice but to put ourselves in that position;
Otherwise what hope do we have?

I thought now would be as good of a time as any to explain why we did the questionnaire; well here goes, since joining the Facebook MRS Support Group, I have spoken to many other sufferers with the illness and for some of those I have not spoken to I have read posts that they have written about their own experiences with MRS.

From reading these posts and speaking to these lovely people we have gained an insight into each others lives and there have been many moments of 'Oh My Goodness I get that too' for example. Things that our doctors have ignored, swept under the carpet, or left for the next doctor (who would never appear) to look into it. These things I started to realise are not only my cross to bare! They affect all of us on some scale, some may get away with some of the symptoms, others may not, some may get them in later life but they are there ready to rear their ugly heads at any given moment and no one is connecting the dots.

The information available on google about MRS is so severely lacking that it verges on being dangerous, in fact in my case it could well be considered dangerous, as my airways swell up significantly, this has long since been linked to MRS by my doctors, however with no treatment to offer me other than adrenaline nebulisers and IV steroids when I have a bad attack I am left huffing and puffing my way around. 

I have spoken to others who also have swollen limbs, which gives you excruciating pain and makes even the most menial tasks like holding a pen to write a challenge that cannot always be met.

There are so many links and crossovers in our symptoms and non of them are being formally attributed to Melkersson Rosenthal Syndrome!

Where does this leave us? Down a very dark alley, calling and calling into the abyss...

I am currently in agony from head to foot and my head feels like it is full of cotton wool, people expect sense from you're when like that, they expect you to be able to care about the little things that will pass in their own way with or without your input. 

No amount of pain relief is working for me right now, I am on analgesics amongst other strong medication but it wont even ease to be suitably comfortable, I feel like I have weights under my skin, all around my body, pressing down, pushing and digging, giving me no peace at the best of time and at the worst sharp stabs of agony.

I can tell these symptoms to any doctor I like and non of them will investigate, they will all just 'make a note' or pass me off to the next doctor who will then also 'make a note' occasionally they might run some random scan or try a new pain medication or suchlike that will prove ill-effective and then I am again back to 'square one'.

My 'Zoning Out' bothers me so much more than I can say, to feel like you are not connected to your mind anymore, that you are not in any control whatsoever is truly terrifying. I wish I could get across to someone, anyone how that felt, I wish for just a moment someone else I know could experience it just so that they understood.

I have tried so many times to explain what happens when I 'Zone Out' and I am still not sure I am getting it right. When we recently went to see Dr Vyas's nurse, I asked Amy to explain from her perspective, as I can only say that I feel disjointed from myself, that I go 'fuzzy' I get a pain in my head and chest, my eyes become unfocused, everyone, everything sounds distant, and I know I am slipping away...

A screenshot of our appearance on Jeremy Kyle when we desperately asked for help.

Amy said; "It is like a mini stroke, her eyes roll into the back of her head, she isn't with it, sometimes she can't hear me at all and sometimes she tries to answer questions I have asked but slurs incoherently. Sometimes she is unaware she has even 'Zoned Out' or for how long as it can last from 30 seconds to 30 minutes, she sometimes comes round and thinks that she has said something or that I have and it just hasn't happened. She then gets very disorientated and confused. The longest 'Zone Out' to date is probably about 45 minutes and we are extremely worried. No one is investigating it, no one is helping at all!"

With all of these varying and sometimes terrifying symptoms it would be a comfort to know that there was someone out there willing to do the work it takes to put all of our symptoms together, to see which ones are part and parcel of MRS and which may not be and to then encourage the possibility of creating an MRS Charity Foundation, in other words a VOICE!

If you can contribute to that in any way, shape or form, then why would you choose not to? Please I am begging all sufferers of MRS however mild, moderate or severe, to please fill out a questionnaire and return it by the end of April or sooner if possible, even let me know that you are interested. I am a born worrier and the idea that we wont have enough questionnaires to glean the results we need scares me. None of us know what the future 
holds but maybe together we can work to make it a little brighter for those of us with MRS and all others with rare diseases too.

We are a giant tree, full of beautiful, branches flush with flowers and leaves, seedlings springing off in all directions. That tree is Rare Disease and each branch is an illness or disorder and every seedling a new illness or disorder. Every single leaf or flower is one of us and we may feel very alone blowing in the breeze but together we are a magnificent, strong and majestic tree, we are part of something bigger, if we link into that strength then perhaps we too can become stronger, maybe we will finally be heard.