The hospital became my 2nd home

What it really feels like to live half your life in hospital

When your cupboard of medications fails: It's off to hospital :-(

Staying in hospital is not 'putting your feet up' and the 'chance to get some rest' it's sharing your living space with a group of strangers, most of the time much older than me with issues like dementia and incontinence.

Yes over the years I have made some lovely friendships and connections with people I've been in hospital with; when you are that poorly and together, living in such close proximity, for days or weeks on end you can really build a strong bond, that is undeniable.

I have laughed with people until my stomach hurt, in the most difficult of circumstances, when you feel at your worst it makes such a huge difference to have someone there who you can talk and laugh with.

There have been times that another patient has decided to be abusive because I was laying there all swollen up and looking terrible and their minds were not what they should be or worse they were just taking their hurt out on me. Straight away I would be back to my 'victim of bullying years' and couldn't cope, after all I was already feeling pretty damn awful.

If a patient decided to make cruel jibes; I would go straight back to my 'victim of bullying days'

There's the times that the nurses are so busy that I get my painkillers late and I would be in agony again, at those points I would try so hard to remind myself that they couldn't help it, that it wasn't personal.

However when you are feeling so vulnerable and hurting so badly your mind goes on it's own journey of self destruction and you think the world is out to get you and that no one cares, that you are just a nuisance.

I convince myself that because I have this rare illness and my lovely, loyal doctor has put me on his Respiratory Ward, that the nurses and other doctors see me as some sort of impostor, that I don't really belong there and they are merely waiting for the first opportunity to 'kick me out.'

There are the times that I have seen doctors and/or nurses who have never heard of Melkersson Rossenthal Syndrome, who at best, or maybe worst depending on your viewpoint, google it and come back at you with 'oh yeah it's swelling of the face and lips' - try telling that to someone who has led the life I have, to the hundred or so other MRS sufferers in this world; no it is not merely 'swelling of the face and lips' we only wish it was!

Even my hands swell, they hurt immensely and I can struggle to even hold a pen

Swollen face and lips would be bad enough to some people, those who hide away from the world because of a pimple, a messed up hair dye, a fake tan catastrophe... but to us it would be a Godsend because the information readily available on MRS at the touch of your fingertips is both outdated and extremely misleading.

It is so much worse than mere facial swelling, it is a soul destroying mixture of pain, feeling dreadful all the time, being swollen from head-to-toe, itching everywhere, not being able to stop passing urine (very annoying), and more besides...

Feeling as though you are respected is so very important,
knowing someone believes that what you have to say matters

Don't get me wrong you do get the good medical professionals who say; "you're the expert, I'll be led by you." Sometimes this is a good thing to hear because you do know yourself and the illness better than the person stood at your bedside.

At the same time it would be amazingly comforting if that person instead said; "Oh, you have Melkersson Rossenthal Syndrome, yes I know the illness well, awful isn't it? But hey I know exactly what to do to clear this flare up right up. Leave it in my very capable hands but if you have any suggestions feel free to give them, I'll be only too happy to listen." Now my fellow MRS sufferers and others with rare illnesses; wouldn't that just be the dream?

Instead, they will sometimes argue until they are blue in the face that the treatment you are suggesting is not right or that you can't possibly be in that much pain.

Sometimes they are even downright sarcastic or practically accuse you of being there for the drug high! Erm no, my head feels like it is going to explode, I can barely open my eyes, which by the way are blurry as hell.

My face and lips become so painfully swollen, it feels like my skin is on fire

My face is so painfully swollen it feels like there are small people underneath the skin trying to push it off from the inside out, my throat is so swollen I choke if I try to drink but my saliva glands are also very swollen so they are therefore blocked; meaning my mouth is as dry as the Sahara Desert.

My feet swollen while in hospital

My whole body is swollen, which gives me unbelievable pain everywhere, I feel nauseous to the point of 'quick pass me the sick-bowl' and I am so dizzy that if I try to stand I think, between that and the pain in my legs and feet, you will have to call a couple of burly porters to scrape me up off the floor.

"So bloody well listen to me please... I am 34-years-old, I have had this illness since I was seven-years-old, that's a whole 27 years more experience and knowledge of this specific illness than you have. I am sure you did not qualify to be a doctor or nurse by simply googling everything and coming back with the first thing it threw up? You heard of MRS about 20 minutes ago, maybe less, so how do you possibly think you know more about it than someone with that amount of 24 hour, seven day a week, experience and the doctor that has been looking after me for years and has had the time and the inclination to do real, time-consuming, research?"

My thoughts; the words I feel so tempted to speak time and time again...

Then there is the issue of you being woken all through the night by one thing or another, lights going on and off and by the way they are never fully off, they are simply dimmed.

...So note to anyone staying in a British hospital and possibly ones abroad too, ask for a sleep kit; consisting of eye mask and ear plugs! They have been a real sanity-saver for me at times over the years; 'trust me I'm a regular!'

You have patients wandering aimlessly and being led back to their beds by dedicated but exhausted nurses, you have the constant shouting of patients with Dementia, it is so terribly sad to see but at 3 am after no sleep at all, you would give anything to move your bed to the toilet down the hall, where at least it is quiet and in some instances smells a little better too...

There's the inconsiderate patients who have no excuse to do so but keep their light on, munching sweets and such-like, rustling wrappers, have their televisions on so loud that without the 'sanity-saving' ear plugs can be quite easily heard as if it is on for all to 'enjoy'.'

Then there are the obligatory blood sugar checks, blood pressure and observation checks, medicine rounds that sometimes get delayed due to an emergency and so be prepared to be woken at all hours through the night to take tablets or be hooked up to an I.V. drip.

Bedtime is all the time when I am in hospital as just being there, on the amount of medication I am on, in that environment, makes me exhausted. That coupled with the usual lethargy caused by my MRS and I am a 'barely able to stand on my own two feet zombie' 

I am often on the same ward when I go into hospital, luckily for me I have an amazingly dedicated doctor and kind, genuine man looking out for my interests, Dr Vyas. He is actually a chest physician but as he tried to locate a specialist in MRS somewhere, anywhere, in the world and couldn't he took me under his wing, knowing that no one else would and he takes care of me, even though he is certainly under no obligation to do so.

I am blessed to have met such an amazing doctor and human being, one who is prepared to go above and beyond for his patients, who I trust implicitly to do what is right by me as a patient and as a person.

He makes sure that I am placed on Ward 23, Royal Preston Hospital, when necessary, his ward, where he can look after me and where his dedicated and lovely nurses work. Over the years I have grown close to many of the nurses on that ward, which helps no end with my stays there.

I know that they genuinely care, in moments of self-doubt I wonder whether some wish I wasn't there as I am a difficult patient, not your average case for that ward. However when I think about it, when I consider that I could be a truly lost soul, a faceless patient file, a number on a chart; I know just how lucky I am to have them all and to have Dr Vyas fighting my corner.

It is lovely to get visitors and you spend your morning counting down the minutes until they are due to arrive. I miss Amy so much when I am in hospital, but then when she/they are there I am often falling asleep, unable to keep my eyes open no matter how hard I fight it and I feel guilty because I make her/them feel guilty - yes being in hospital is also a real guilt-fest! Guilty because of that and guilty because I am leaving Amy home with only our Labrador for company.

Amy and Laddy our Labrador; he keeps her going when I'm away

I know that she can't sleep when I'm not there, that she doesn't eat properly and that she walks to and from the hospital every day come rain or shine or even sleet/rain/snow/hailstone/ice/gale-force winds etc... you get the point...

Nothing and no one will stop her making that trip, even when it has meant coming to another city to see me and travelling for three hours there, then three and a half hours home again and all for a pitiful one and a half hour visit :-( yes guilt-fest yet again but lovely all the same!

Amy always had the faith to keep going; no matter what she was there

I always reach what I call my end-point, which is the time when I know I cannot stand it for one more day, I just can't bare it a moment longer, I have reached my absolute limit, used all my resources of emotional endurance, I miss my Labrador to the point of distraction for example; now where is the sanity in that?! haha

I feel like I am missing out on life yet again and of course; I am, there's the birthdays I miss, mine, Amy's, my nephew's... and so on... there's New Years Eve; when Amy and I heard the chimes separately, me in a hospital bed in Resus struggling to breathe and Amy at the Accident and Emergency reception desk checking me in... (That was very depressing as a start to the New Year :-( as I am sure you can imagine.)

There's my nephew's school productions, prior to being so poorly I had attended every one, now I am lucky if I attended one a year! The family meals out... the list of things I miss by being in hospital and/or being poorly is depressingly endless... At my end-point  I always, humiliatingly, end up in tears; it is an overflow of emotions when the body just cannot contain your distress any longer; that is how I see it anyway.

My nephew, Bradley, with Laddy; I miss them so much when I'm in hospital

Trying to occupy yourself in hospital 

They have just added WiFi to the wards in the Royal Preston Hospital and I can't tell you what a life-saver that was during my last admission, before that I would perhaps attempt to read a book, but when your mind is foggy and you are exhausted beyond measure that is not an easy task!

I would draw, colour, do arrow-words, read the odd magazine, chat to another patient; if there was anyone that I could chat with, but mainly I would put my ear plugs in, my eye mask on and go to sleep. So yes WiFi is a big thing, the televisions you hire in hospital being so expensive that I long ago decided I wouldn't pay for them anymore.

Hospital Tip (For UK Citizens)

Tid-Bit: What people in England often are not told though, so I will mention it here for your sake's, is that if you simply register your details over the phone then the television is free for a few hours in the morning (channels 1 - 5), the radio is free all the time and you get free calls to 01 and 02 numbers! Worth knowing!

Hospital Scents... hmmm

One of the worst things to endure in hospital, something that people generally are too polite to mention but is a real down-point; is the smells. Whether they be the overpowering antiseptic scent of hospitals in general, the meals with the plastic covers over them that seem to create a scent all their own or the smell of human excrement; it is cloying, it is strong and it has the ability to absolutely knock you sick...

I'm sorry if I offend anyone, genuinely I am, however it is an honest truth about what it is like to stay in hospital for any length of time.

If you are in for weeks again and again then no, you do not become immune or accustomed to it, what you become is overcome with the desire to ask for the necessary paperwork to sign yourself out and return home immediately, admittedly no better than before you went in but a damn sight happier at that point.

I just want to return home to Amy; to our life - but I also want it to be better

I have often had arguments with Amy because I have wanted to leave hospital so badly and she has insisted that I stay, she has said that she can't face it being the same again, that I have to get better. I feel so guilty knowing that there probably wont be much getting better for me.

No matter how long I stay in hospital, no matter what I.V's I get hooked up to I will probably revert almost straight back to how I was before; sometimes I am overcome with a feeling of complete and utter hopelessness.

Hope lives and breathes

Since the Stem Cell Replacement Therapy I have been in hospital less; that has been a real blessing for me, for Amy... it has given us some much needed hope for our future. Before the treatment there was nothing but darkness, no light at the end of the tunnel, just a vast empty space of nothingness. 

There have been positive changes, I am still poorly most of the time, have flare ups pretty much constantly but we are able more and more to manage my symptoms at home. They are certainly less severe on the whole but we have a long road to travel; at least we can make that journey together.

We now make plans, we hope one day that Amy will be able to carry a baby; that we will get our dream to be parents, our happy ending...

I have finished editing my first crime fiction novel ready to start sending it off and have started writing my second; I have impressed myself with the fact that I am almost 19,000 words in already! I hope one day to see something that I have written on the bookshelves of Waterstones and Borders, I hope to achieve that.

Me, Bradley and Amy; we used to spend so much quality time together, I want that again so badly

I spend more time with my family now; nowhere near enough but it is heading in the right direction. The SCT takes at least a year to work fully, it has only been nine months, we have a way to go yet. I will also need the treatment again, one more time, to keep the results we have and to gain more results. 

We will be fundraising again later in the year; I am nervous beyond words of explanation that we wont make our target the second time around; that I will back-track, lose myself again. Whatever happens, though, I am taking every day as a gift and I am making memories wherever possible. Memories that will sustain those I love, memories made for a lifetime.

Amy made a difference when she wouldn't let me give up

The link to my GoFundMe page, created by Amy:

https://www.gofundme.com/Christiestemcell

The 5 Ws of my Dignitas Choice

Wanting to die was NOT an easy option

but it did feel like my ONLY option

Me in happier, healthier times

I thought about whether or not I should write this post for quite some time as I know that it will be upsetting for the people who know me to read; however after much soul searching, and telling Amy to avoid it at all costs, I have decided that it needs writing. I don't want anyone to think that I when I made the choice to go to Dignitas and end my life that it was a decision I made lightly and I don't want anyone else to think that it is an easy option based on anything I say so...

I am going to try and explain what it took for me to come to the decision that the only way forward, or rather my only escape, was to go to Dignitas in Switzerland and commit legal assisted suicide.

Some people may think that it was the easy option; a cowards way out and maybe in some ways it was but if I am completely honest it was absolutely NOT an easy decision to make at all. To consider leaving behind all the people I love most in the world, to even think about the heartache I would cause, the guilt of knowing that they would suffer so greatly because of a choice that I made. It almost crushed me. No scrap that; it DID crush me!

I had been agonizing over the question of whether I could carry on the way I was for some time, and in order for you to understand why that was such a huge ask you have to know that life was not life anymore; it was me laying in bed day in, day out, in absolute agony, barely seeing the light of day, not really spending any time with Amy let alone anyone else, it was taking so many medications I had to rely on Amy to administer them because I couldn't keep track. It was being on so much pain medication that half the time I couldn't see straight because of it but knowing that if I was to miss one dose, one single, lousy, dose I would be in the amount of pain that would lead us to the hospital and yet another stay in the place that had long since become my second home.

I was lost, I was sad, I was in pain; both emotionally and physically but all of that was I, all of it was about me, the reason I held on for so long before being brave enough to say I just couldn't do it anymore was because to me what it did to everyone else was more important. I desperately didn't want to hurt the people I love, I wanted to keep them safe; in a bubble, in suspended animation almost. A safe place where they did not know that I was coming to the end of the line; that I was about to drop a huge bombshell that would shake the foundations of our family structure; I wanted to die.

Actually that's not true, I didn't want to die, I wanted to live; more than anything in the world I just wanted to live like everyone else. No one in all honesty could refer to what I was doing as living, at best it could be classed as an existence but it wasn't living, not really. I had long since given up my dream of having a career, gone were the days of thinking that my degree would one day pay off and I would be able to return to work, I knew I would never get to go to town and dance like an idiot in the pubs and clubs anymore heck most of the time I wasn't even well enough to go out for a family meal.

My graduation; was it all for nothing? (From left; Mum, Brandon, me, Dad)

The worst things; I couldn't write, I had neither the energy nor the wherewithal to sit at a computer and write anything that would make even the modicum of sense, that might mean very little to some people but for me writing is in my blood, it's the air I breathe and without it I feel lost. I accepted that I wouldn't be well enough to edit the crime fiction novel I wrote before my illness really took over so I knew that I would never get to send it off much less have the chance of getting it one day published; another dream crushed.

Bigger and worse still; I would not get to fulfill the one dream that meant more to me than any other - I couldn't carry a baby, I couldn't be a mummy. I had always dreamed of being a mum, of feeling my baby kicking inside me, of Amy's hand on my stomach feeling them moving around getting comfortable, of talking to my bump, reading it stories, anticipating the birth with a healthy mixture of excitement and shear terror! Then having my family come to the hospital and see us holding our baby, of looking into his/her eyes and seeing a bit of me reflected back. I would never have that either; MRS had stolen my only chance.

I knew that if Amy was to have a baby that would be my child too; I would adore them, worship the ground they toddled on but I also knew that even if Amy was to give birth that I could never be a proper mum, that I would only hold Amy and our children back and I also knew that that was exactly what I was doing every day that I was with Amy, I was holding her back from her dreams and from the future that she could and should have.

I wanted to set her free, not be what was holding her back...

I hardly ever got to see my family, much less my friends, I was just too poorly, constantly cancelling arrangements until they simply didn't get made anymore. My poor nephews became lost from me in the process of my downfall by MRS because how can I spend time with them when I can't even get out of bed? How can I be there cheering Bradley on at sports day, watching his school productions, playing with him in the park? None of it happened anymore... It was all just lost...

I was breaking my family's and Amy's hearts every single day that they were watching me suffer and I could do absolutely nothing to stop it happening. I tried so hard to fake it, to fake being okay with what my life had become. I cared about hurting them more than I cared about hurting myself.

If I could have taken myself out of the equation entirely, made it so I had never been born, if only I had to suffer the pain of losing them, then I would have done it in a heartbeat in order to spare them. If I could have emigrated and let them believe I was happy somewhere else, oh the things I thought about; the ways I could exit their lives and leave as little pain behind as possible.

But none of it was realistic, it was all just wishful thinking, if you could call it that. I would think about dying as a relief from the physical pain I was having to endure every single moment of every single day without a break but at the same time the idea of not seeing my nephews grow up would leave me in tears of grief just at the mere thought.

The idea of not seeing my nephews grow up left me in tears

I'd consider what it might do to my parents, that they may not cope, I remember how my mum suffered when she lost my Nan when I was 9-years-old; would that happen again because of me? As much as I didn't want to believe I wouldn't be missed, wouldn't leave a Christie shaped hole in their lives; I would rather they felt no pain, that it would have been as much a relief to them as it would to me but no matter how hard I tried to convince myself I knew that wasn't true.

I also knew that when Amy said she would kill herself if I ever died, that as horrible as that was for her to say, and I still think it was, she meant it and that was an enormous amount of pressure to rest on my shoulders. Part of me was pushing forwards, carrying on, just because I was so afraid of what she would do to herself and deep down I think she knew that to some extent, I think maybe that's partly why she said it in the first place; to force me to stay.

When people have cancer, it's a dreadful, evil, painful illness and I feel for every person that has to go through it and every loved one that loses someone because of it but they have understanding, it is something that others have heard of and they know instinctively that it is excruciatingly painful and it carries with it a massive emotional burden.

For me that understanding was not always there, most of the time people did try to grasp it but five minutes after you have left the room, the phone, the chat-room on the Internet; they are no longer thinking of you and your struggle, because they get to live and why shouldn't they? The problem is, I didn't.

The other thing about illnesses like cancer is that when it is bad, when it is so so bad that the poor sufferer is in daily pain then there is usually an end-date in sight, I know that sounds awful, crass even but I promise it is not intended that way. It's just that they have the relief of knowing that their suffering will not be forever, that one day it will be over and that their loved ones will not blame them for that and in that way they will be free to move on.

If you suffer pain for long enough, if you have everything meaningful lost from your life and if you believe that you are a noose around your loved one's neck's then eventually you will find it too hard to carry on like that; well I know I did.

I would lie awake at night watching Amy sleeping, thinking about how I could do it but cause the littlest amount of pain possible, for a long time I had been nurturing her relationship with my family to make sure she had people, had a reason to stay. I made sure she spent as much quality time as possible with our nephews, bonding, building strong connections that would keep her bound to a life here on Earth and would give her happiness then and in the future.

I encouraged Amy to build strong connections with our nephews

As much as I wanted her to have those connections with our nephews so badly, to watch her with them doing the things that I used to hurt me like crazy. I felt redundant; like the boring add-on auntie who turns up to occasions and if anything sucks the fun right out of them by being so poorly and a distraction from the good times.

I would watch her and know that she would one day know a life without me and that it would inevitably be a better life that would give her far more happiness than I could; as much as that was a good thing, as much as I desperately wanted that for her, it cut like a knife right through my heart and I can't deny that, I would be doing her a disservice if I even tried to.

My sister and I are the only children of my parents, I know that if anything was to happen to her I would suddenly feel very alone in the world, that half of me would be missing and I wondered whether Kerry would feel the same, whether she would worry about when she gets older and there would have been her and me pushing our shopping trolleys through town - that instead it would be her alone.

Me (on the left) and my sister; we thought we would always have each other

I thought of the friends that I had let go over the years because I never thought I was good enough for them, because I thought that my life was already a mess, that I wasn't successful enough, 'sorted enough' to be their friend. I considered the fact that they would never know what they had meant to me; that they were the family I chose at a time when I needed them most. That in the years since I had walked away from our friendships I had missed them dearly and always regretted it.

I spent days, weeks, months crying whenever I was alone because I couldn't contain the hurt, I couldn't cope anymore, it was all too much. I didn't want to just take a bottle of pills, tie a rope around my neck and hang myself from a public tree somewhere obscure where no one I knew would find me, I didn't want to do anything underhand; I wanted them to understand that they had to let me go and to be there with me to hold my hand; so that we could say our goodbyes.

Looking for my way out

I knew that in some countries there was such a thing as legal assisted suicide, I had read about it a long time ago, had covered the issue in Religious Studies in high school and found the subject fascinating at the time; even then, at that age, I found myself agreeing with it in certain circumstances, so I know I have not become a hypocrite at least.

So I started looking into it and I soon came across video diaries and web pages made by people who had made the choice to go to a place called Dignitas in Switzerland; it was heartbreaking to read what they had written, even worse to watch the videos they had made, when they had looked so alive yet so broken at the same time.

I watched them and I cried for them, I did a lot of crying at that time in my life - not like me at all. They all had their own very valid reasons, some were terminally ill, some had very debilitating illnesses like me. For reasons of their own they had decided that they wanted to take control, take charge of their destiny. They couldn't choose not to be poorly, they couldn't stop the course of their illnesses but what they could do was decide when to leave and how.

When I looked at Dignitas itself and read their criteria, something struck me, hard, right between the eyes; I did meet their criteria, I was a candidate for assisted suicide. To me that validated my choice to die and was another driving force behind my final decision - I really was that sick. I wasn't exaggerating or imagining that it was worse than it was; this had really, honestly become my life.

You never imagine one day you will be so poorly you would rather not live

When you are healthy, or even relatively healthy, you read sad stories in magazines, see them on the news, watch documentaries. You hear of so and so's mum or auntie or brother etc that has fallen ill and is dying. You are told about someone who has this God-awful illness that has left them a shadow of their former selves. You think how awful it is and how sorry you feel for them and then like everyone else that isn't directly involved in their sad story you get on with your life.

What you never, ever imagine is that one day that person at the center of this hugely sad and traumatic tale will be you.

The big questions

I spent time asking myself the big questions; is there a Heaven, will I go there if there is? Will I be re-incarnated? Will I get to watch my family and Amy from afar? I tried to buy into all of that for my own sake because it was ripping my heart out thinking I would never see them again. I couldn't believe in a higher power no matter how hard I tried to make myself.

What I started to see it as was a big, long, rest, of knowing no different and apart from the grief of not seeing my loved ones again, funnily enough the idea of said rest did not fill me with dread either... It actually made me feel like I would finally be at peace.

Telling Amy

When I finally told Amy about my choice I was frightened about her reaction, I knew it wasn't going to go down well, of course I did, but when you feel that low, when you are that desperate you rationalize. You believe wholeheartedly that they will be better off without you and that if they loved you enough they would let you go because it is too painful for you to stay.

That is why I don't judge other people who come to the decision I did, whatever their reasons. I think it is very unnecessary in many cases as things can no doubt improve; if it is emotional distress that has led them there for example. All the same, at that moment in time, their minds are telling them that this is the right thing to do, the only thing to do.

I saw it as being finally set free, released from my pain and my obligation to live in order to keep other people happy; in fact that was one of my arguments with Amy - that it wasn't fair for me to suffer to keep everyone else happy when it was me alone that had to go through all the physical pain etc and not them.

I stand by that to some extent, I know that at that time I really, genuinely was in too much pain to live with it like that forever. There was no known cure, there still isn't, but there was also no effective treatment, nothing was ever likely to get any better and I couldn't live with that.

I also didn't want to waste more years of Amy's life, I had tried pushing her away many times, it clearly never worked lol, we have had some huge arguments over the years. We have, at times, walked a rather rocky path in our relationship but when I got really sick, when a lot of people would have run away, she stepped up completely and she didn't leave my side even when I begged her to.

We have our moments, we aren't the 'perfect' couple, I don't think anyone is, but we are perfect for each other. We are the perfect partnership; some might wonder how being the perfect couple and the perfect partnership are different but I believe that they are.

I think that you have to be a partnership to work well as a couple but that you can be in a couple and not be in a partnership that you can just be 'out for yourselves', I just think it works much better if you have both, I believe it makes you stronger.

Her reaction

When I told Amy and watched her break in front of my eyes, when I saw the damage I had already done; I wanted to take it all back. I wanted to tell her to forget I had said anything, that it was just a sick joke, a moment of madness, that I honestly didn't feel that way at all. Except I did feel that way and I meant every word and she knew it as well as I did; there was no taking it back, there was no way I could.

I tried to make her understand, I tried to show her that it wasn't that I didn't love her enough to stay but that I loved her too much to do it to her; that I couldn't be the anchor pulling her down because no matter how many times she said I wasn't, I knew that I was and I couldn't do it any longer.

I knew that she saw the pain I was in, she lived with me, she knew me better than anyone, she saw me suffering on a daily basis. She was there with me every day I spent in the hospital, was aware of what I endured; because she endured it alongside me.

I don't think before that point that she had allowed herself to believe there would ever come a point when I would say enough was enough. I don't believe she had ever considered it. She called me selfish, she said the whole idea was selfish and that anyone who did it was cruel and thoughtless.

She told me she would never support me in my decision, that she wouldn't be there with me, that she would stop me from doing it, that she hated me for hurting her like that, she cried and cried and threw every ounce of hurt back at me that she could and I took it all because I knew it was only the same hurt I had just given her.

She asked me how I could even think about leaving my nephews, she told me I would break all their hearts, that I just couldn't do it, that it was evil, I was evil. She didn't want to be around me, she wanted to be away from me but kept coming back (as is Amy's way during arguments lol.) I think at that moment I pretty much hated myself too.

I can't remember what happened after that if I'm honest; those days are a blur of tears and raw emotional outbursts from both of us, launched at each other like weapons.

However Amy had realized how serious it all was, how serious I was about it and that she had to act now if she was to keep me with her, if she was to help.

What she did

She found a support group of other Melkersson Rossenthal Syndrome sufferers on Facebook, the last place I would have ever thought to look! She signed me up; I got talking to people who understood what I was going through for the first time in my life and that was an amazing thing and still is. That group is a gift to everyone with MRS who finds it and Amy found it for me when I needed it more than ever before.

Next we came across the Stem Cell Replacement Therapy as a possible treatment (not a cure) we researched it and the more we found out the more positive and hopeful it all sounded. My last post kind of takes it from there with regards to that and I will explain what happened when I went for the treatment in a future post...

However I would just like to say that had things not improved I honestly do not know what I would have done, whether I would have gone through with my decision to go to Dignitas but that I meant it at the time and I had researched the place, people who had made the same choice and I knew exactly what I was thinking.

My doctor has said himself in that past that what I had was 'no life' and he was right, things are slowly improving with the SCT, however my life is extremely far from ideal. But that's the thing; I just called what I have a life and I meant that too!

End Note

I have been informed by a very lovely lady that my above post triggered her to write a post of her own, on her blog, re the same issue. If you would like to read her story: Here it is. I am honoured that she described my post as being "bold as hell & refreshingly honest."

From Amy with love...

What it's like to be the carer and wife of someone who wants to give up and leave you behind...

Amy's words...

In happier times; together the way we should be

I am not a writer but I am going to attempt to put into words how it feels when your wife tells you she wants to go to Dignitas for legal assisted suicide, it was heartbreaking, soul destroying; like she was telling me she had cheated but rather than being in the arms of someone else it was with the idea of giving up on us, of giving up on herself and of leaving me in a world that would no longer have her in it. 

In all honesty I wished she had cheated with someone else, at least she would still be here, at least she would still exist in my world, I would then have every right to be furious with her but we could get through that, we could fight to be together; I would be able to fight to get her back but I couldn't fight this; I couldn't fight for someone who was no longer here.

First of all, the biggest feeling I got was an overwhelming mixture of denial and grief; Initially telling her she was being silly and that we would get through it, telling myself things weren't as bad as they seemed. That it would get better, she would get better, laughing and joking with family as if my world hadn't started crumbling beneath my feet. 

Carrying on like she hadn't just dropped the biggest bombshell; Unfortunately, my mind couldn't switch off and I kept repeating it in my head like a mantra making the smallest tasks difficult to concentrate on. Working out our finances became mind-boggling, everything just seemed so trivial and unimportant and I couldn't focus on anything other than the thought that I am losing her, I am losing her... I am going to blink and she will be gone.

I think the second stage was anger; She wanted to give up and leave me all alone when I had given everything up to stand by her and support her! Anger that I had to carry this burden on my shoulders as she had made it clear I was to tell no one else; why break someone else's heart when mine was clearly enough. 

That I was not a part of her equation before making this massive decision, that she could imagine leaving me so easily was just too much for me. It has to be the hardest thing I have ever had to deal with and I still struggle with it now.

One of the hardest aspects was seeing our nephews, completely, innocently oblivious to the fact that their worlds were about to be shattered and their innocence lost because my wife couldn't cope with the pain of living anymore and for her it was easier to leave us all than it was to keep suffering, to keep fighting. 

We argued, she begged me to understand, she desperately wanted me to agree with the choice she had made but that was the problem she had made that choice; I'd had no say and I couldn't agree. Not only would agreeing mean breaking my own heart and the hearts of our family but there was also something fundamentally wrong to me about agreeing for someone I love to die; and to die by choice.

I would not only be betraying my beliefs but betraying my nephews and family by being any part of this decision that would change everything for all of us. I was absolutely devastated and so, so angry that she would expect me to do that. That she would leave me with the guilt and everyone else's anger; that would have no place to rest but on my shoulders seemed so cruel.

Then comes the selfish wave; When I tell her to fight because I don't want to be alone, I don't want the pain of losing her, that I cannot picture my life without her as I wouldn't cope because I love her more than anything but again this makes me angry at her as she is willing to leave me behind. To leave OUR dreams, OUR future in tatters and to leave me with nothing but fragments of the life I thought we would share. 

Eventually I think you do kind of accept it, to a certain point I did anyway; I thought if something doesn't change she is going to go to Dignitas regardless of my view because she cannot live like this anymore. She was hurting every moment of every day and could see no way out, no light at the end of tunnel, it was hard to imagine just how that must have felt. 

I knew it was hard for her, more than just hard really, it was impossible but at the same time unless you go through it I don't think you can completely get it. With that in mind I don't think she could completely get what I was going through either. 

We were hurting each other trying to come to terms with the fact that she didn't want to live like that anymore and I didn't want to live without her and no matter what way we looked at it one of us would lose.

Fortunately, I found support groups and we found a treatment to give her hope (not a cure). Facing the possibility of losing Christie made me fight harder and me being so distraught made her fight harder. We searched and searched expecting the usual; nothing but what we actually found was possibility. 

That possibility came in the shape of Stem Cell Replacement Therapy; it was hugely expensive, in fact it cost much more money than I thought we would ever be able to save. The only thing I could think of was GoFundMe; I had read stories of people asking for help with medical costs, funeral costs etc and I thought; Why not us? What did we have to lose? 

The very night that we had found out about the possible treatment, after we had spent all day in talks with the clinic I posted the GoFundMe page and spent a sleepless night hoping against hope that it would work and that I would be able to keep Christie with me.

I can honestly say the fear that it's one day possible that she will again mention Dignitas never goes away and I have cried more tears over this than anything else I can think of. When she has a flare up that lasts and lasts, when she is depressed because of the MRS, when she is in hospital yet again, when Christmas is taken over by her illness; I worry about it again and again and sometimes I truly feel like I can't breathe with the weight of it all.

I just want to make it clear when I say I gave up so much to care for Christie I did it gladly and I have gained so much more in return. I know some people think its a huge burden considering my age and that I am missing out on living a full life, Christie is the first to say that, but I can honestly say that I am happy. 

I am in love and the only thing I would change is Christie's illness so that we could both live a full life together. I would rather live half a life with Christie than this full life everyone talks about without her because a life without Christie is no life to me. 

I also know that there are some people who believe being a full time carer is easy, that it is an excuse not to work and I really don't want anyone to think I resent Christie for this but being a carer to someone as poorly as her is more than a full time job; It is a 24 hour, seven day a week job that I happily do but that is all consuming, exhausting at times and really quite frightening at others.

I watch her eat wondering if this is another time her throat will swell and she will choke AGAIN, I watch her sleep and listen to her breathing pattern thinking about whether I should wake her to give her a nebuliser, I see her swelling spreading and get the Epi Pen out ready; there are so many dangers that haunt our everyday lives; I would rather work as a bin lady, a vermin exterminator, a chicken truck driver lol than watch Christie suffer like this.

That isn't an option; I don't get to choose whether our lives change, Christie's illness dictates that, she has no say either, we are ruled primarily by MRS and to some point that is okay because I signed up for it and I would do anything, live any life so long as I get to spend it with her.