What it really feels like to live half your life in hospital
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| 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.
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.
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| If a patient decided to make cruel jibes; I would go straight back to my 'victim of bullying days' |
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!
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| 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...
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| 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.
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| 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.
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| 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.
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!
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.
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.
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!
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 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.
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.
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| 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!
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| 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.
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| My nephew, Bradley, with Laddy; I miss them so much when I'm in hospital |
Trying to occupy yourself in hospital
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.
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| 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.
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| 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.
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| Amy made a difference when she wouldn't let me give up |
The link to my GoFundMe page, created by Amy:
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