TODAY = PAIN

So today is a bad day...

I am going to jump forward a few years for this blog, as my intention had been to take you on my journey year by year until you got to the present day with me. However I feel that today is a 'live in the moment' kind of a day but not because it is exciting or there's some challenge I am facing that I don't come across every day but rather because today is a bad pain day.

When I am in pain like anyone else I struggle to focus, particularly on anything that is not the here and now, so instead I will talk about today's symptoms. A bit of jumping back and forth through time shouldn't confuse you too much I'm sure, after all we have all managed to follow the 'Back To The Future' franchise without too much confusion; haven't we?

... So I woke up shattered, the reason being that last night I barely slept. That is nothing new to me as due to influxes of pain I am often too distracted for sleep, too caught up in the not crying or screaming out in agony moments that are a fixture in my life.

Once again my feet, ankles and legs are painfully swollen...

My legs feel like they are on fire with the tight, stretching feeling as the skin around my legs, ankles and feet pulls tighter than should be humanly possible due to the immense swelling that has occurred. It is unsightly, in the way that I officially develop 'cankles' the term made famous by 'Shallow Hal' meaning my calf looks like it meets my foot without a clear ankle in sight! Yes, my intention there was to make light of the horrible situation that I find myself.

I do that a lot; make the joke about my appearance before someone else can or before you can think it. At least then I am in control of the situation and it appears that I am able to laugh at myself, even if inside I am dying with embarrassment; you wont know that because on the outside I just made you laugh about the way I look and I even laughed along with you.

Anyway the pain from my 'cankles' is extraordinarily bad, they feel hot the pain is so raw and they look poofy and red too; not a very sexy look I must admit.

My face itches and aches as the swelling spreads and I can feel my eyes stinging and my head hurting as the pain radiates around my head and body. I also get swollen blood vessels in my head and the pain from that; well it is unimaginable! You would not want to try to imagine it, trust me.

My thoughts become sluggish and confused, my mind a misty fog filled cavity that I cannot safely navigate my way through. This is why today was not going to be a writing day; as the last thing I want to do is write a load of unintelligible gibberish that people feel obliged to pretend makes perfect sense when in fact it reads like War and Peace back to front and upside down.

I don't want to be a bore but I need to be able to describe these moments, that later become lost to me, as they happen. My vision is almost as cloudy as the images in my minds eye. I feel exhausted with lethargy, a lead weight incapable of moving an inch.

It is not just tiredness and despite what people believe who have never suffered with it you cannot simply fight it off and carry on, it is all consuming, it crushes your body in a death grip of sheer and utter exhaustion and will not let go.

"An abnormal state or disorder characterized by overpowering drowsiness or sleep."

The meaning of lethargy

I feel heavy and my eye lids droop; they are almost incapable of staying open. The world around me is echoey, like i am in a dream state, here but not here, awake but not conscious. My ears hear every minute noise in the quietness of the kitchen as I sit here typing away, yet although I hear everything, the ticking of the heating system, the sound of rain tapping the window pane; it is all so distant, as though everything is far away and I am very small, almost insignificant.

My pain is the only thing keeping me conscious, stopping me from simply falling asleep sat up at the kitchen table, which has happened many times previously. Every muscle in my body is stiff, I attempt to move my arm and a sharp pain shoots through me; like someone has run me through with a Samurai sword. I know that the same pain and worse will attack me when I finally stand up ready to go to bed and so I dread it even as I desperately need to make the journey upstairs where I can finally give in to slumber.

"The greatest evil is physical pain."

Saint Augustine

"Being in physical pain 24/7 takes it out of you not just physically but mentally and emotionally. It literally drags you down more and more, the worst thing about it is, it's never going away."

Unknown

It is 17.07 and I know that I will shortly be going to bed for the night, having only got up at approximately 12pm, this is because this illness drains you, not to mention my lack of sleep last night because of the pain I was in.

I read a fellow sufferers link to her gofundme account today, which she has set up for financial help as she lives in the USA and her medical coverage has ceased. She has MRS like me and as I read her symptoms and looked at her photographs I felt that familiar connection of having found yet another poor soul suffering without help.

She too has symptoms which are not described on the internet as being part of MRS but her symptoms like mine run through the very heart of this illness.

A familiar vein of symptoms travels through each and every one of us who have to endure this awful, debilitating illness. I am sick of being in constant pain, of feeling rubbish, of hating my own reflection. I am fed up of watching everyone else live fulfilling lives while I desperately try to grab a moment of normality. I am so so tired of having a rare illness, of being my rare illness because we are one and the same; myself and MRS, there is now only a blurry line separating us.

After a while I lost my identity, I became the very thing that is destroying me; MRS. How could I avoid it when it bleeds into every single aspect of my existence? I see people my age and younger with families, careers, nice homes of their own, in happy fulfilling relationships. Yes that sounds like the ideal and for many they don't get that ideal or if they do it doesn't last but they at least get a shot at it, a fair attempt to live the dream.

As far as I am concerned any aspect of that would be heaven, yes I have a partner I love and I know that I am loved deeply in return but I feel sometimes as though I am a noose around her neck, I know she doesn't see it that way but how can I help but feel it when I we have to cancel trips at the last minute, stay in the house for days on end, hardly ever see our friends or family, when we live not even half a life between us? How can I not feel a tremendous sense of guilt when it is all down to me, my illness, my MRS, when she has the ability to live a 'normal' fulfilling life if she would only live it without me?

I no longer ovulate, so short of having IVF, which this country will not give me, I am not going to get to carry a baby. My dream, the one thing I have unfailingly always wanted more than anything in the world and I cant have it. I can probably never have it. That hurts more than I can put into words, more than all the physical pain that this illness causes me.

I ache with grief that my womb will never feel the weight of a growing baby, that I will never see myself reflected back in our child's eyes, I'll never feel our baby kick or cry out during labour, I'll never be the mummy that carried them for nine months. It scares me that any baby we have will see me as an 'add on' as though I am a step parent, not a real mum.

With my nephews before my illness took hold, I love being their auntie but I long to be a mum

I know that Amy can carry, all being well that is the plan, and that baby will be my baby too, I will adore him or her I can guarantee that but I will never get to feel a baby kick from the inside, never hear their heartbeat as a monitor is slid over my abdomen, even childbirth is something I took for granted I would one day get to experience but now it is all lost to me.

It terrifies me that they wont love me the same way that they will love Amy, and I feel awful admitting that but what if that's true, what if they resent me? I don't want to be the boring parent that is too poorly to join in and can't run around on the park with them or play football.

But then I think about it and I know I will love them more than life itself, the way I love my nephews now. I will do crafts and draw with them, I'll teach them how to cook, I'll instil respect and manners into their personalities and read stories to them every night, even if it feels like my arms are going to drop off with the weight of their books. Will that be enough? Will I be enough?

"You have power over your mind - not outside events. Realize this, and you will find strength."

Marcus Aurelius

MRS has taken so much from me and given me such awful things in return. I get indescribable pain, swelling, confusion, lethargy and so much more and all of that in place or a regular life. I don't get to make use of my degree, I don't get to carry a baby, I don't get the glittering career or the active hobbies, the social occasions that people get to share with family and friends don't happen for me.

I am outside in the cold looking in through the window; watching the fire flickering, the children playing as the parents look on glowing with pride; I get to witness other people's lives rather than live my own. I want that to change so badly, I need it to, for me and for Amy; it has to change!