Sleep? What's that?
I normally complain that I am lethargic, keep 'zoning out' and can't stay awake; not today, because last night was one of those nights! My mind was full of information like I had just been swatting for an exam, drumming statistics and all sorts of boring information into my mind. Only it wasn't the means to pass an exam, or irrelevant information floating around my skull that was keeping me awake; no, it was the nagging thought that kept stating the obvious 'I am in pain, I am in pain, I am pain' like a mantra dedicated to driving me insane.
Like I needed my own mind telling me that I was in pain, I could feel it, but you know when you try desperately to ignore that nagging, painful headache but it refuses to allow you the physical or mental respite you require? Well that is exactly where I was at 1am, 2am, 3am... you get the picture I'm sure?!
Pain is unavoidable when you have MRS
I have tried every painkiller you can probably imagine be that opiates, analgesics etc, you name it and I've probably been on it at some point. I don't like taking pain relief, I am certain that most people don't; they come with their own set-backs such as the barrage of side-effects that can take over your life.
To name but a few of the side-effects I have suffered with over the years:
- Fatigue
- Insomnia
- Dizziness
- Nausea
- Headaches
.... and so on and so-forth...
None of the medications I have taken from the doctor, over the counter, herbal remedies, even a tens machine, none of them have been sufficient to control my pain. Yes, they certainly help as I am certain that without them I would be in a very dire situation but they have never completely taken the pain away.
In fact when it is so bad that I have had to take myself into hospital even I.V. Morphine did not leave me pain free and to make matters worse I have become so accustomed to it over the years that I now need a higher dose to achieve even remote pain relief.
At home I am now on 75mg Fentanyl patches that need to be changed every 72 hours, 300mg of Pregablin for nerve pain twice a day, regular paracetamol and 10 - 20ml of Oxynorm for breakthrough pain. It's quite a cocktail but is by far an improvement on my previous mixture of 50mg MST, which is slow release morphine tablets, 20ml Orromorph, which is liquid morphine, every couple of hours if needed, regular paracetamol, 100mg Tramadol up to four times a day, 300mg Pregablin twice a day and at one point I was also on liquid Ketamin for breakthrough pain - yes the latter is also a horse tranquilizer!
Current cocktail of pain medications
I have been put on these medicine regimes by my pain doctor at the Royal Preston Hospital, Dr Desai, he is a very good and thorough doctor and has been a wonderful help at getting me settled on the current concoction that I am taking. They work as well as it would appear is possible for me, MRS causes a LOT of pain and it would appear that it is also very resistant to medications.
Tablets that I take every morning
The above image is the pills that I take every morning, then of course there are the medications I take throughout the day and the ones I take at night, not to mention my insulin injections. I sometimes feel like if you were to pick me up and shake me I would rattle.
Medicine cupboard; full to the brim :-(
Keeping track of my medications is part of Amy's job as my carer, not just because I am often too poorly to do it myself anyway but because I would probably get confused and double dose or not take enough! So she fills medicine pots that have morning, afternoon and evening sections with my medications to make life a little simpler for both of us.
I am currently on an increased dose of my Hydro-cortisone Steroids, which wont be helping with my sleeping problem as they are known to give you a very unwanted case of insomnia. So not only do I have my regular symptoms to contend with I am now a walking, talking (slurring) zombie.
Issues created by sleep deprivation
I have been sitting downstairs with my Labrador, Laddy, for company since 3.30am after having finally given up on the prospect of sleep at all for the night. I will no doubt find myself trying to get some much needed 'shut-eye' later on.
Melkersson Rosenthal Syndrome; 'The Thief In The Night'
Life with MRS is anything but convenient, it interrupts every aspect of your life like a sharp elbow in your side, followed by an incessant nattering in your ear! It wont let go for even a millisecond and allow you to forget it's there. Melkersson Rosenthal Syndrome in itself seems to have an unquenchable desire to constantly remind you of its existence.
There are so many things about having MRS that I HATE beyond words; the constant pain, the way it has altered my life in every way, the change in my appearance, the fact that I have to take so many medications that in themselves have awful side-effects, it has taken away my ability to get pregnant, causes my mind to become confused and 'foggy', I cannot stand the 'zoning out' that happens regularly, it makes me lethargic beyond measure, it effects my relationships, has stolen my chance to have a career...
MRS is the proverbial thief in the night and it came into my home, cloak and dagger style, and left with everything that meant anything to me. It stole my very existence so that I no longer recognize my life or myself; I am the shell of a building left behind by a fierce Tornado, I am a withering wreck seeking shelter from a Tsunami, I am a ghost wanting to be seen but is only mist in the air.
Since I started the process of fundraising to raise money for my Stem Cell Replacement Therapy in the USA I have been told many times that I am strong, I am an inspiration. Lovely people have said this, family, friends, complete strangers who have reached out to me. I didn't expect this reaction when I started fundraising; I never even expected to raise a fraction of the funds, I simply knew that I had to try, that I owed that chance to myself and more importantly to my family and friends.
After years of being bullied, being ridiculed for the way I look because of my illness, after so many derogatory comments flying in my direction to be told such wonderful things has been a real confidence boost for me but it doesn't mean that I believe it. I don't think I am particularly strong and I certainly don't see myself as an inspiration though it is certainly an honour that other people view me in that way.
What I see myself as is someone who has had no option, no choice but to wake up every morning and face another day, no choice but to keep fighting. If I could choose not to be ill, if I could live a 'normal' life then ofcourse I would. I'd leave all the physical and emotional pain behind and dive into a 'real' life with so much enthusiasm that I would look like a Cheer Leader on a high.
I'm trying so hard to be that strong person whom everyone already thinks that I am, I take heed from the fact that I am still here, still facing the day despite the physical pain I am in. It would be so much easier to go and crawl back into bed, to pull the covers over my head and hide from the world. It would be simpler to put away my laptop and not share my struggles with you; but that would be giving up, that would be letting MRS win yet another battle and I am not prepared to give in that easily anymore.
"People cry not because they are weak but because they have been strong for too long."
Unknown
I have shed many tears over the years because of MRS, never so many as when I found out that I no longer ovulated, that truly felt like the final straw. I remember that I spent days in bed afterwards, I was awful to Amy because I thought that being that way would make her leave and right then I wanted nothing and no one to care about or to care about me.
I thought it would be better if I was alone, then I could give up without hurting anyone. I wanted so badly to just give up. I refused to eat, I barely drank and no matter what patience and love Amy showed I pushed her away. She could have kids, she could get pregnant, she could have a career, a normal life; what was she doing trying to tell me she understood?! Ofcourse she didn't understand; how could she possibly know what I was feeling?
"Sometimes we push the people we love most away to protect them."
Unknown
I was angry at the world, angry at the doctors, angry at every single pregnant person out there, every mother, every father, every useless parent, I was angry at my parents because I had waited to get pregnant until it was the 'right time', I was angry at Amy because she didn't understand but told me she did but most of all I was so so angry at myself because I was angry with everyone else.
"If you are lucky enough to carry a child... cherish it. There are so many women who would love to be in your shoes."
Unknown
I hurt so badly that it was as much a physical pain as it was emotional, I think I cried enough to end world drought over the course of the week. My breaking point was also my turning point and that came when I stormed out of the house, having got dressed for the first time in days, got in my car and drove all the way to Ocean Edge caravan park in Heysham, where mum and dad were staying.
I think I just needed my mum at that point to let me cry and to be there to listen. I had an emotional collapse in front of both my parents that day, followed by the English cure for heartache; a cup of tea. Then I returned home and spent the rest of the day talking to Amy for the first time that week.
I wasn't angry anymore, I was sad though and I'm not sure that will ever go away, but I was no longer full of anger. My life is not what I imagined it would be, it hasn't gone to plan in any way but human beings are adaptable aren't they? I have had no choice but to bend with the changes.
"God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."
Reinhold Neibuhr
I love the above proverb, I'm not much of a religious person at all, I have never claimed to be but that proverb really speaks to me and always has. With every day that comes my way I am trying to change the things that I can, I can't move mountains but maybe I can nudge them.
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