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...

Lost Dreams

Lost Dreams

MRS left me with a broken heart...

As a child I loved playing with baby dolls, playing house, pretending to be a mummy. I think a lot of people that have problems being accepted and crave that acceptance and love feel drawn towards parenthood. If you are a parent you get that special bond with a child and unconditional love from someone that no one can take away from you.

Holding a doll I got for Christmas, with my sister; Kerry

Being a mum is something I knew from an early age that I wanted for my future, I didn't spend time imagining the perfect wedding or the great big house that I would live in but I did imagine the children that I would have, the names I would call them, the places we would go together, the things we would do.

Holding my baby cousin

Back then I never thought that I would be one of those people who find out they can't have children, who discovers that everything they had planned for their future, those dreams that kept them going through the tough times would never be a reality but it happened, my Adrenal Gland stopped working and subsequently I don't produce steroids or hormones anymore.

I was in hospital for two weeks due to the fact that I was having constant flare ups and my lovely specialist Dr Vyas, of the Royal Preston Hospital, decided to admit me and try to get them under some semblance of control by administering IV steroids over a two week period.

(I should clarify that Dr Vyas is not a specialist in Melkersson Rosenthal Syndrome, he is actually an acute respiratory specialist and I saw him because my illness causes breathing problems, including a paralyzed right hemi diaphragm, however as no one was taking care of me with regards to the MRS he tried to locate a specialist, in fact he has searched the world for one, but unfortunately he came up empty handed and so has since been coordinating my care himself. Without him it is safe to say I would be lost in a very vast system and I am eternally grateful for the fact that he has taken me under his wing.)

So there I was stuck in hospital, hating pretty much every second of it. Lucky for me I had Amy loyally traipsing to and from the hospital every single day and I somehow managed to get through the necessary fortnight of being practically bed bound and seeing nothing but hospital grounds while having drugs pumped through my veins regularly throughout each day.

The day I was leaving I was waiting for my paperwork, for anyone who has not spent time in hospital (you lucky devils) you have to have all of your medications from pharmacy, two weeks worth to be exact, and paperwork for your GP to state why you have been in hospital, for how long and whether you are work-fit. Well, I was waiting for this paperwork, feeling relieved to be going home finally and very eager to get off the ward when a doctor I had never seen before suddenly appeared.

Dr Kaushall, Royal Preston Hospital, was an Endocrine doctor, specializing in the Endocrine System, which is the system that controls hormones. She told me that my Adrenal Gland was no longer working sufficiently and as a result I was no longer producing steroids or hormones, this is extremely dangerous as you need steroids in order to survive.

Your body produces a certain amount of steroids all the time but more so when you are under any physical or emotional stress. This is necessary to live, I had basically been a walking, ticking, time bomb, which was a terrifying thought. For the time being it overshadowed the news that I no longer produced hormones as I did not understand the significance of it at that point.

I had stopped having periods for some time, had been to the doctors and been told that it could be stress, medication, a whole number of things, of course I was worried, I wondered if perhaps I was going through the menopause or something. What was worse was that we had been trying for a baby using a donor, myself as the carrier.

For some reason it just was not taking, each month my heart would break all over again, I was desperate to carry a baby. Then the cruelest joke was played on me, we tried as normal, then I missed a period, little did I know that would be the start of 'no more periods' I thought it meant it had finally worked; we were going to be parents at long last! Even after we did a test and it was negative I still managed to convince myself, fool myself, into believing that I was pregnant; why else would I not have periods?

That had been when my Adrenal Gland had stopped working properly and I had been oblivious, the wicked thing about it was that I had thought I was finally pregnant when in fact it was my body giving up on that ever happening.

With mum, holding my baby cousin again

I now wear hormone patches and take a 'controlled daily dose' of steroids, I can live with that; being tied to taking pills and wearing patches for the rest of my life. It is far from ideal but I can handle it, I have been handling being a slave to medication for years but the fact that I will never feel my baby growing inside me, will never feel them kick, go for my first scan and wait with baited breath to hear their little heartbeat for the first time; that just about kills me.

"Facing it, always facing it. That's the way to get through, face it."

Joseph Conrad

I never imagined I would be one of the unlucky ones who this kind of thing happens to, but why not? I am already one of the unlucky ones who has what amounts to a disfigurement that made them a target for bullies growing up and continues to make them stand out now, I am already one of the unlucky ones who ends up extremely ill, I'm one of the unlucky ones who ends up in Intensive Care, I'm one of the unlucky ones who loses family members and friends too young, I'm now one of the unlucky ones who can't get pregnant. Why should I be surprised? Good things don't seem to happen for me, but bad things? They seem to be the 'norm'.

Holding my baby nephew; looking after him made me feel happy 

I look back over my life and I see so much heartbreak and a great deal of that is down to this illness, having a rare illness is soul destroying in so many ways, it creeps into so many aspects of my life and rips it to shreds. It is also something that I feel very alone with because when you tell someone you are poorly that you have MRS they have never heard of it, they don't automatically know what it entails so the natural understanding is just not there.

Before I got really bad, when I was able to work, I still had times that I struggled to get through the day because I felt so awful but if I told an employer I was having a flare up they were NOT understanding, even my colleagues seemed to think I was 'swinging the lead' there were never really any allowances made.

If you have an illness that is debilitating it is bad enough but if you have one that people are aware of and know of its severity they feel for you, they almost understand, even if it is not necessarily debilitating but they have suffered with it themselves then they know how bad it is first-hand but if you have something rare, that they have no knowledge of, then there is no understanding at all.

Having a rare illness is a very lonely thing, the symptoms are yours and yours alone, you can't say to someone that this happened or that happened and have them say that it has happened to them too, that they know how you feel.

Melkersson Rosenthal Syndrome continues to take from me on a daily basis, it got so much worse over the years until I didn't feel I had a life worth living anymore, I wanted to go to Dignitas in Switzerland and put an end to my suffering. Now though it is better then it was, it isn't perfect, far from it and some people might consider it a wreck of a life but compared to how it was when I considered Dignitas it is a lot better.

I still grieve for the children I will never carry, I still feel that MRS has taken far too much from me but I also feel that I have a life to live now, I have a partner who is prepared to carry our children, I have two nephews I adore, I am lucky enough to still have both my parents and to have a sister I am very close to. I have extended family and good friends, my life may not be perfect but it is still a life.

With my nephew; I never thought I'd be someone that can't have children

If I let myself think only about what I can not have, what I have lost, what the bad days are like then I am overwhelmed, a big dark cloud appears over me and sinks down lower and lower until I feel like I can't breathe, like I am suffocating under the pressure of it all and I can't see beyond it, I can't see any light at all, only darkness.

I have to enjoy the good moments because they can sometimes be so fleeting it's almost like they were never there at all, through the bad times I have to remind myself that they wont last forever and if I am lucky enough to get a good day then I make sure I LIVE it.

If and when I finally get to be a mum, it doesn't matter that they were not grown in my womb, they will be everything to me. They already are really, I love them so much and at the moment they are only a dream, an idea, a hope. I will never take them for granted or allow myself to feel that they are too much like hard work. I will know the moment that they are born, conceived even, that I have finally had some good luck, the BEST luck and that I have finally been blessed.

All these years of heartache and pain will be worth it; if at the end of it all I get to be a mum, if I finally, at long last get to hold my child in my arms.

The 1st Attempt At Surgery

Plastic Surgery For A Kid...

I was only young when the doctors decided the best way forward for me was to try a form of plastic surgery known as a Lip Reduction. It was an experiment, no one knew if it would work but we were hopeful; more than hopeful really, we convinced ourselves that it was going to work.

I had been being bullied relentlessly at school and was desperate to look 'normal' again, to have my lips a normal size, not to be a walking target for every cruel child in Preston to make a beeline for. I was frightened, what child wouldn't be? Surgery was a big step but it didn't matter, nothing mattered but me getting rid of what made me 'ugly' and stopping the bullies once and for all. 

Before MRS arrived and changed my appearance forever

The surgery was scheduled and I started counting down the days to when my life would be happy again. I wanted to be able to look at myself in the mirror without feeling physically sick to my stomach to see who was staring back. I HATED myself, I didn't want to be me, I had never been a vain child, what I looked like wasn't that important; well I hadn't thought that it was until what I looked like made me a laughing stock.

I spent a lot of my time drawing and writing, solitary activities that I could become completely absorbed in, I could lose myself in creating pictures of cartoons, animals, princesses etc or I could live a different life through my stories; my hobbies were my escape and they were things that even I had to admit I was pretty good at so my confidence had a boost too.

When the day of my surgery finally arrived I was relieved, frightened of-course, but relief was my main emotion; it was finally all going to change. I would go back to school a new me, the old me, the one that existed before this monster took over. 

Melkersson Rosenthal Syndrome had altered my appearance so much that I actually despised what I had become, I had not yet come to loathe my photograph being taken, that would come later, but I did hide the photo albums if anyone came to the house, I did fear people seeing pictures that had already been taken. 

No child should feel that way about themselves, should be so embarrassed about what they look like, so ashamed that they beg their mum not to show anyone a single image of them, no child should be so humiliated by those images that they practically break down into tears at the mere thought of anyone looking at them. But that's exactly how it was for me and I'm pretty sure that would have broken my parent's hearts.

I knew that this operation would change everything, I knew that it would save me, so instead of going into the hospital crying and wishing it wasn't happening to me I went in eager to come back out again as a better version of myself. I didn't really know what to expect with regards to the healing process, to be honest I don't think that I gave it much thought, but what did happen was a nightmare.

My mum came down to the anesthetic room to be with me while I got put to sleep, the doctor had put on the obligatory 'magic cream' that numbs the back of your hand ahead of the general anesthetic injection. Mum was there to hold my hand as the solution was injected, but as I the liquid started coursing through my veins the sensation began to frighten me and I called out; "muuuuummmm..." as I fell into unconsciousness.

My poor mum must have been wildly upset, well she was certainly traumatized enough to get lost on her way back to the children's ward and wander through the fire doors setting the alarms off...

I imagined the surgery would fix me; I would be 'normal' again

When I came round from the surgery I was groggy but I felt the pain straight away, it was shocking how bad it was. My lips were swollen even bigger than normal due to the trauma of the operation, they had cut my lip across-ways and up the middle, removed excess tissue and sewed them back up, the stitches held my lips together and were pulled extremely tight to do so; I was in agony.

I could barely eat anything for weeks as I recovered at home, I would just sit in the armchair trying not to cry but the pain was immense and I was so young, still at primary school. As the swelling got worse the stitches stretched and pulled, it felt constantly like my lips were splitting open. I could taste blood all the time and my food had to be put through the food processor so that I could manage it.

The one saving grace was that I knew it would all be over soon and I wouldn't be bullied anymore, I would be happy again.

My lips were always so swollen because of the MRS

The problem was that after the stitches were removed, after the surgery swelling went down, my MRS swelling came straight back; to say that I was devastated is an understatement. I had to accept that I had been through all of that pain for nothing. My lips were swollen just like before and I was a victim again, of the bullies and of myself because I couldn't see past what I looked like, I couldn't see any good in who I was.

I had told the kids at school that I was going to be fixed, that when I came back my mouth would be okay again. I thought that I had been telling the truth but it turned out it was nothing but fiction; just like the stories I made up to escape from my life. I felt like a liar and a fool, I didn't expect things to be any better, I didn't expect the bullying to stop and I was right about that, the only difference was that it got worse.

I look back now, I see that little girl in my mind's eye and I desperately want to reach out to her and tell her that it is okay to be her, it's okay to be different and to accept herself. I want to tell her not to live in fear of what other people are going to call her, what they are going to shout at her in the street. I want to tell her not judge herself by what she sees in the mirror. 

I want to say that she is strong, that she goes through so much but that she survives it. I don't want to see that little girl sitting alone in the playground wishing she would just disappear. I want to tell her to make the most of every moment before it gets any worse. But maybe she would have just given up if she'd imagined it getting worse because even then it all seemed too much to cope with. 

I don't think I am a particularly strong person now, I still have very low self esteem, but I have gone from hiding the photo albums when people come round to being brave enough to post pictures on here. I have accepted that I am who I am and I cannot change that. I've come to terms with the fact that MRS altered my appearance and that I have no say in that but what I can control is my own reaction to myself. I can accept myself and I have.

Having said that I will not give up trying to get better, trying to find someone, somewhere to help myself and my fellow MRS sufferers to find a treatment that works or indeed a cure. I don't want to hate myself anymore but I do hate this illness and I hate that it has taken so much away from me and makes me so poorly and I will never stop trying to change that. But I have come to accept that my reflection is just a small part of who I am and that it isn't so bad; I just wear my war wounds for all to see and have a fair few that are hidden too.