GIVE UP OR GIVE IT EVERYTHING I'VE GOT?!

Finding a reason to keep fighting

Deciding not to give in; fighting for a treatment

with a little help from my family, my friends and hundreds of  complete strangers...

First of all let me apologize for my unpredictable and unreliable terrible illness; Melkersson Rossenthal Syndrome the rare disease sent straight from Hell as far as I am concerned! Because this is what it has done to me over the last few days... hence the lack of posts...

Sore lips, face and zoning out; Flare-Up :-(

I had such high hopes for this blog, I would sit here and write practically every day delivering my life story post by post, letting you all into my mind and heart; hello inner most thoughts I've decided to set you free! Hello bottled up emotion; you are free too and so on and so forth...

It's not so simple though when the very thing I want to blog about, my illness, is letting me down as per usual; Why oh why did I expect any different? After-all it has always been my Achilles Heel, or rather the hammer that continuously slams down on-top of my head! Ouch!

Lips are so swollen and painful; even I feel sorry for me! :-(

Eight months ago I was pretty much bed ridden, so poorly that simply to move was agony, I didn't feel like me anymore, I was lost and I had had enough. It wasn't a life; it was an existence, I told my partner Amy that I couldn't live like that anymore, that enough was enough and you wouldn't let an animal suffer like that, I decided that the only option I had left was Dignitas in Switzerland. For those of you who haven't heard of it, it's a place were you can go for assisted suicide. To basically be put out of your misery and to die with dignity. I was 33-years-old and I had decided that my life was finished, or I wanted it to be. 

Of course Amy disagreed; she loves me dearly, I know she does. Telling her that I wanted to give up was one of the hardest things I have ever had to do, I was essentially saying that I would be choosing to leave her behind, that the pain and suffering was so bad I couldn't even fight my way through it for her. She took it badly, she still can't talk about it now, it is just too painful for her. I can understand that because if it was the other way around, if she was the sick one I wouldn't want her to go, it would hurt to know she chose an escape route over me but then I wouldn't understand what it feels like to be the sick one in that scenario and if I did, well then I would be faced with a huge dilemma... Her suffering or mine?

You see it's easy to tell someone to fight when you are a spectator, it's easy to tell someone life is worth living when you are not the one in pain all day every day, when you visit the hospital but don't have to stay there, when you aren't basically sharing your bedroom with a group of strangers, sometimes lovely, sometimes abusive, sometimes irritating, sometimes smelly, sometimes delusional, sometimes attention seekers, sometimes you grow to really care about them and then out of the blue they die right beside you... What a life eh? Then there are the endless days you spend in bed at home, in pain, barely able to move due to that and the severe lethargy.

There are the nights out you can't go on, none of them to be exact, the parties, weddings, christenings that you are just too sick to attend, there's the friends that disappear because you never have 'time' for them, when in fact you are just far too ill to see them, to go for a drink, a meal, a cup of coffee, all the things you loved doing - gone. I loved to write; you can probably tell that by now? But I really loved to write, I actually penned a full crime fiction novel but got so poorly that I didn't have the wherewithal to edit it and send it off, so it has been sitting there; useless, and I haven't written a single thing since then. Apart from the odd shopping list of course and now this and the new novel I have started writing.

Reading was my other favorite pastime, yes I'm not exactly exciting with regards to the hobbies that ignite my passion, that make my blood pump excitedly around my body, that get my creative juices flowing and my mind running at 100 miles-per-hour. But when your mind is a constant fog, when you can barely open your eyes; pray tell - how indeed can you read a novel or for that matter pen one? No I was a ghost of my former self, I didn't even look like me anymore, Melkersson Rossenthal Syndrome had changed everything about me and stole my inner light.

I'm not talking religion there; I am about as far from a church goer as you can get, after all what God does this to someone, what God let's the world go hungry, what God allows children to suffer and die? and what God watches as natural disasters strike and does nothing to prevent them or help in the aftermath? No, some people find comfort in believing in a higher being; good for them, I wish that I could because at times that comfort is sorely missed but I decided long ago that I just couldn't let myself rely on anyone else, much less a higher being I cannot see nor communicate with, so God is off the cards.

No, my inner light is what everyone has... that spark, that passion, that drive that makes you go from day to day whether it's a good one or a bad one... you keep going because there is something there to head towards, a future that looks bright, a day you have planned that you know come hell or high water will happen because, well, what's to stop it? The children you have or will have that light up your eyes and make your heart sing, the painting you are planning to create or the artwork you want to buy, the new house you are going to purchase and do up with the love of your life, the career you have or are working towards, the family time you are planning, the nights out, the nights in, the meals you will cook or have cooked for you, the holidays you are going to take... there is always an inner light in people, because there is always something to ignite it.

Melkersson Rossenthal Syndrome extinguished that light, it left me in the darkness, I couldn't even see the flickering of a light at the end of the tunnel, it took everything from me and gave me pain, lethargy, nausea, swelling etc... it altered my appearance so that I don't recognize myself when I look in the mirror. MRS murdered me before I really had a chance to live.

Amy and myself before I was murdered by MRS; how I wish I could press rewind...

.... So a year ago when I told Amy I could no longer carry on, she battled me, she fought, she begged and she won... I gave up the idea of Dignitas and instead started fighting like I've never fought before, we researched, we spoke to everyone we could think of who might be able to help, we reached out. Subsequently Amy found the MRS support group on Facebook, which I joined, I have met some amazing people on there who have been a great support. Prior to that I had NEVER spoken to a single fellow sufferer of MRS, now I speak to them whenever the need arises. There are a total of 146 members, world-wide who are also facing my battle. Some thankfully are not as poorly as I am, maybe some are the same or even worse but now we are not alone; we are found.

Then came the 'light at the end of the proverbial tunnel' which in other words is a possible treatment, not a cure of course but a treatment none-the-less, the possibility that things could improve, I could improve, my life could improve. How could I say no to that possibility? Why would I want to? After talk of Dignitas had ended in tears and recrimination, this possible treatment that we found was like gold dust, actually scratch that, it was more like the fairy dust Tinker-Bell uses on Peter Pan to help the kids fly, this could make us fly!

... All the way to Santa Monica, L.A. United States of America for Stem Cell Replacement Therapy, which was sporting a whopping price tag of no less than £14,000, once we took travel, accommodation etc into account. After being forced to turn my back on my career, to say what was the point of gaining my degree? After having Amy give up her job and chance to 'climb the career ladder' in order to look after me and keep safe as my full time carer - well, we had zero chance of ever managing to save that kind of money!

We had the possibility of a treatment dangled in front of us like a carrot to a starving rabbit, then no sooner had we reached out to touch it, it was dramatically snatched away again :-( Gutted does not begin to cover how we felt! But then brainwave, Amy decided to do the unthinkable, something we had never entertained before, something we were scared our family and friends might frown upon, something that could backfire spectacularly - but that something was also our only chance and with Dignitas as the alternative what choice did we have exactly? Amy asked for help, we got our proverbial 'begging bowls' out, we reached out to people we knew and a whole lot of people we didn't and we asked them to help save my life.

It was mortifying, embarrassing, humiliating, I could go on... but I think you get the drift, Amy created a GoFundMe page for me and we went from there. Neither of us expected what happened, why would we? We had spent so long being kicked in the teeth, I had always been met with cruel jibes, bullying, torment etc from the world at large; why would it be any different when we asked for help?

At first the picture we used was one I didn't mind showing the world, it was one of the only photographs of me that I didn't particularly hate or cringe at the mere sight of, we were new to it all, had never done this kind of thing before. We couldn't use JustGiving as we were not a registered charity, so GoFundMe had seemed the way to go, we set the target at £12,500 thinking that with the time it would take to raise it, if we ever did, we would be able to save the rest ourselves. We didn't want to ask for any more than was absolutely essential and at that time and for a long time thereafter we remained ignorantly in the dark about the fact that GoFundMe take a percentage of every single donation that is made; Oh dear...

We went round to my mum's and dad's and explained why we were doing it, just how bad things had become, I had barely been round to my mum's for some time and when I did go round I often needed a nap, it felt so wrong that my mum would be the one putting a blanket over me at my age, that she would insist on carrying my bags if I ever made it out of the house, things were so back to front. She understood about GoFundMe, so did Dad and as we started sharing the page on Facebook pretty much all of our family and friends got on board and started sharing the page and making donations.

Picture we first used of me for GoFundMe; happier, healthier times

It shocked me to have so much support and I don't mind saying that as soft as it sounds it really did warm my heart, it made me feel loved and cared about and who doesn't want to feel that way? Who doesn't want to know that people will step up and help them when they most need it?

Not long later I gritted my teeth, stole myself for a moment, took every ounce of my courage, a very deep breath and agreed to be interviewed by our local newspaper. Yes, to some that may not sound like the monumental event I just described however to someone who stares at the floor walking down the street for fear of making eye contact with someone who might call out a rude name, well it took guts!

But I did it, I braved it and the lady I spoke to, Laura Wild, was lovely, she took me by the hand and led me through the whole thing and what's more she seemed, and I believe was, genuinely touched and interested in my story. She also believed that we could do it; that we would raise the money. She offered support and advice and said she would be there from beginning to end to cover every meaningful moment our 'cause' had and she kept her word; Go Laura Wild you absolute STAR! :-)

Photograph of me and Amy used by the Lancashire Evening Post (our local newspaper)

To put myself out there like that, to be willing to be seen by so many people at my worst, to be photographed when truth be told I can barely stand to look in a mirror, to talk about my inner-most thoughts and feelings, to open up about all the hurt and upset I had felt was to risk my heart, to put everything on the line and to entrust it all to complete strangers. Who until this point in my life had only seemed to find enjoyment in my misery, had only compounded that misery - they certainly hadn't previously offered a helping hand.

Following the story being printed the donations started pouring in, we couldn't believe it, my mum was on the telephone exclaiming that it was working, that people were helping, that they cared. I was gobsmacked, honestly and truly flaming gobsmacked! Not only were people making donations but they were writing the most lovely, kind and supportive comments, people I didn't know were adding me on Facebook. I reached out and hundreds of complete strangers reached right back and took my hand.

I am truly thankful for every single hand that reached out and pulled me back from the edge...

Of course the donations slowed down, there were only so many people that read our local newspaper, we knew we had a lot of work to do if we were ever to reach target. I still didn't believe it would happen; these kinds of things did not happen to me, they happened to other people. We didn't get to have the happy ending - or did we?

We kind of formed a fund-raising committee, consisting of myself, Amy, mum, dad and my sister Kerry when she wasn't busy with my lovely nephews. We decided we would hold a few fund-raising events, well as many as it would take anyway.

My Uncle Paul wanted very badly to help and took donation pots to put in restaurants etc of people that he knew, he even kept one at home that they put money in daily, he also talked about getting a loan to help, which of course I said a firm no thank-you to. It was bad enough asking people for donations but letting a family member get into debt to help, while being an extremely generous and touching offer, was simply out of the question.

We decided that I needed to alter the photograph on my GoFundMe to one that would show my illness and resonate with people, let them see why they were donating. Well I had braved the newspaper so why not? I agreed to just go for it, to put everything I had into trying to raise this money, trying to live, trying not to break the hearts of my partner and my family.

The picture of me as a primary school child that we used for GoFundMe

Then we contacted the Bee radio station and I was subsequently interviewed by Victoria Glover, who was also very interested in my story and offered to follow our efforts throughout. Amy contacted TV stations etc and I ended up appearing on Granada Reports, I struggled to know how to approach the interview on this one, it all felt very 'staged' and unnatural. I didn't take to this style of interview at all but I still did it, Amy joined me on camera too, I know she didn't want to but as always she remained dedicated beyond measure to raising the money we needed.

Amy and I on Granada Reports, ITV, 31st January 2015 at 4.40pm

We appeared in magazine articles and newspaper articles too, and then while in hospital with yet another flare up I was contacted by a producer, Alistair, from the Jeremy Kyle program; he advised that they would be running a special episode on people living with a rare illness and that it would be filming that very night. 

The pressure started there, I knew that being on program with such a wide reaching audience could make all the difference both with regards to raising the money we so desperately needed and raising awareness of Melkersson Rossenthal Syndrome, they had been talking discharge that day but were still deciding so of course I nudged and nudged and nudged... Until finally they gave in...

I left hospital at 4 pm I believe and we were in a taxi (sent by ITV) at around 7 pm that evening on our way to a nice hotel, we would stay overnight and film the following day. They would be picking my sister up in the morning after the school run and she would be there with us. It was all such a whirlwind that even now I can barely remember it. I do however remember that much of the evening was spent with Amy and I being called by producers of the show for pre-show interviews so that Jeremy Kyle would have the background information he needed; it was exhausting, I was exhausted!

The next day was spent in a pokey little room from morning through until around 6.30 pm, as we were the last segment to film. There had been an issue with the other guest and so rather than the show being a 'special' we would instead be a 'special' segment on the end of a regular show. We were disappointed; what if we were not the kind of people they tuned in to see?

By the time it was our turn to film I was having trouble moving, let alone walking the huge trek across the studios to where the show is filmed. Did they slow their pace to accommodate me? Erm in a word; no, I had to ask them to please slow down repeatedly as did Amy and Kerry as by this point my breathing was starting to become troublesome and I was in a LOT of pain.

Unexpectedly Kerry was placed in the audience rather than on stage and Amy was told she would be first on stage, ahead of me. To say she was nervous would be a massive understatement, me I think I was in a trance lol, I was in too much pain and too tired to feel nervous. It kind of felt surreal on one hand and on the other like I was back at Uni about to film an interview (I did a Journalism Degree) I didn't feel nervous about the interview itself just about being 'seen' by so many people.

They were very clever in how they filmed it, they took Amy on stage and asked the kind of questions that would provoke an honest reaction that was emotional and raw and to watch her break down in tears like that, to watch her fall apart because of me, well that broke me and I started to fall apart backstage myself. Conveniently there is a television backstage so you can see exactly what's going on, so you can't avoid it; before I even went on stage I was a wreck.

https://www.facebook.com/brian.f.w.lees/videos/10153268529640815/

          

Link to video of us on Jeremy Kyle, gulp...

I was crying buckets, something I did not count on doing on television, everything I said was 'in the moment' completely unplanned and very much from the heart. If I am honest I held a preconception of the TV show itself, I have seen it, who hasn't? I knew it was mainly about lie detector tests and DNA tests, I imagined the kind of people watching it on the whole would not be too interested in me and my plight. I hoped for some donations, I hope to raise some awareness, but I didn't dare hope for what happened...

Myself and Amy on the Jeremy Kyle show, it was extremely emotional

We waited an agonizing month for the show to be aired, had been told they would be in contact prior to that happening. In the meantime I had family and friends offering their help and support, they would do fun runs, marathons, my good friend Nicole held a bake-sale at work then donated all the proceeds, my cousin Cassandra did sponsored events, nurses from the ward I often end up on at the Royal Preston Hospital offered to help by doing sponsored activities, friends from college and university, even high school got in touch to help; I was stunned.

My cousin Cherie even did a parachute jump, I was terrified for her, I didn't want her to do it, what if something happened? What if the worst thing that could occur did occur and her parachute didn't open? Argh! No Cherie, don't do it! Don't jump! Don't dive straight out of a plane for me! God love you for wanting to, being willing to, but please don't... Too late... She jumped... 

My cousin, Cherie, after thankfully landing safely following her sponsored parachute jump

I had so much support from family and friends and then it happened... We were contacted by the Jeremy Kyle show to advise us when it would air, so in March 2015 we were finally on...What followed shocked us all to the core; strangers in their hundreds posted comments and made donations as fast as lightening. It was hard to believe for someone like me, I had not realised I had so many people who cared about me that much and that there were so many genuinely lovely people in this big wide world of ours that would hear my story and want to help.

The amount on GoFundMe just kept getting higher and higher, we were actually getting near to target, we had a long way to go but to get that far felt like a miracle. It gave me strength, showed me that ever elusive 'light at the end of the tunnel' and it was getting brighter by the day. Things would die down, of course they would but then we did our fund-raising day, it was nerve wracking, hard work but above all it really was fun!

Thank-you everyone who helped me in any way for shining the torch so that I could see...

A few pictures of our fund-raising day:

(Which was held at Cottam Community Centre, Wednesday 11th April 2015, 10 am - 3 pm)

Our nephew, Bradley, at the Fundraiser

Amy and I running the bookstall

Family friends running the Bric a Brac stall

Raffle, teddies, hand knitted toys, home-made jewlery

Games for the kids run by a friend who volunteered

Family friend face painting

The Tombola was very popular - run by mum and dad

After calculating the result of our efforts we were more than pleasantly surprised to find that we had raised a respectable, no actually an impressive £721. You see as fund-raising novices we had failed to check what we were up against and it just happened to be Grand National Day, our local football team Preston North End were playing a big match and it was the Golf Open, so we did amazingly well all considering.

As time went on the episode of Jeremy Kyle was repeated and with each repeat came floods of donations, I had one donor who donated £10 every single day without fail, I had others who parted with their money despite struggling financially themselves, a kind man made contact and offered to help us reach target but before he even had the chance something amazing happened...

It was the middle of the night, just three months in from the start of our campaign and I woke up in pain as is the 'norm' for me, I had a message on Facebook from one of my lovely, kind supporters, the message said simply; 'OMG you have reached target!' I knew it couldn't be right, how could it? I still needed almost £4000!

But alas some kind person had anonymously donated a whopping £3,925, I instantly woke Amy then we rang my mum... Before long everyone knew and then the whirlwind really began... 

Thank-you so much for lifting me up, I truly hope your hearts reaps the benefit as they should

Because next was a flight to Santa Monica, LA in the USA and me undergoing Stem Cell Replacement Therapy, which has never been done for anyone with MRS before but has had success with illnesses that behave in similar ways. The Stem Cells take a year at least to start working properly and it has been around eight months, there have been some improvements in that my flare ups are now more manageable at home a lot of the time. I have them less often and they seem less severe, I have even been able to lose some weight, but it's a long road and I'm aware of that.

I am nowhere near the finishing line of this particular race and the doctor who administered the treatment advised us that I would need to undergo the same treatment at least one more time in a few years in order to maintain the results and gain more. Unfortunately we will need to raise the same funds again and I am just not convinced that the first time wasn't a fluke but we will try, no we wont try... We will put everything we have into it once again...

I feel too cheeky to ask for help with fundraising yet; it feels like people will have only just stuck the kettle on and put their feet up, I certainly don't want to be asking them to get back up again just yet! So I shall let the dust settle for now and then it is off we go again...

But in the meantime I am having days like today, it started off like yesterday - flare up central but it has since developed into 'not such a terrible' day, however my mouth and throat are full of sores and ulcerations, my lips are swollen and have splits in the corners and up the middle of my top lip, my face, stomach, legs and feet are all swollen and my back and neck hurt! So just a normal day at the 'MRS Office' then...

Not pleasant at all; hideous looking and pretty damn painful too :-(

Last year was a journey in more ways than one, it started off with me wanting to head off, bags packed on a one way ticket to Dignitas in Switzerland, then we started fundraising thinking it was a pipe dream but at least a dream and everyone needs one of those, then there were newspapers, a fundraising day (only had time to do one before we reached target), radio shows, TV news program, then of course Jeremy Kyle, tonnes of hospital stays, a trip of a lifetime to America, although it was probably about as far from a holiday as you can get, then back home and waiting for results...

Now I am writing this blog, working on my second novel and having the odd 'good' day to get me through the bad days... I get times like this morning when I think that I am reverting back, that I will be stuck bed bound and unable to move without being in agony, that I will once again be in hospital more often than I am at home.

I panic, who wouldn't after the life I have led? But as the day progressed, indeed as I got further into writing this blog, my mind became somewhat less foggy, my pain a little less severe and my 'zoning out' died a very welcome death, however temporary that may be. Okay let's say it is currently lying dormant, death would be wishful thinking on my part. 

There's some hope, there's a reason to wake up in the mornings, although to be honest I wake up over and over again all night anyway but I now see a very dim light at the end of the tunnel. I received 486 donations on GoFundMe and even more messages of support and kindness. I have been called an inspiration by so many people; what that means to someone like me who has been beaten down their entire lives, who walked down the street staring at their feet, who sat as a child in the playground wanting a big hole to open up in the ground and swallow her completely, who was so depressed she tried to end it all at 15-years-old then wanted to go to Dignitas because her life was so abysmal at 33-years-old, who can't have the one thing she always wanted more than anything (to carry a baby), who has been called a thousand cruel names that have been etched forever on her heart creating scars beneath her skin; what all that means and what it means to know she is loved and cared about so dearly; is that I have a reason to keep fighting and that a lot of people have lit candles to light the way, so my journey is no longer being made in complete and utter darkness and I can never thank them all enough.

Dear All who helped,

     I would just like to say that I am still in touch with many of you who helped me, I have made some lovely friends and great connections. You will always be very dear to me, those of you who chose to remain anonymous, those who helped then stepped back, those who remain in my life and of course those of you who have always been in my life; you are all so very important to me and always will be. You have healed some very old wounds that I had thought were beyond repair, you have given me a lesson in humanity that I will always take with me wherever I go. I will forever endeavor to be as kindhearted and giving as all of you, thankyou for helping to mend a damaged heart and helping me locate the light at the end of the tunnel,

Much love, Christie x

Hope is the biggest gift of all :-)

 I will soon be posting about my journey in America, what happened when I finally got my Stem Cell Treatment and where I go from here...