Sunday 5 June 2011

I wish.....

I wish that on rapidly approaching my 100th post I had something worthwhile and inspirational to tell you all. My mood is blue, my pain has been reaching 9 out of 10 - I actually asked Amanda a trainee medic friend of mine to amputate both my legs tonight, such was the agony. She refused on the grounds it would be too messy and I would moan about having to clean the floor later. She was right on both counts.

 For the first time in years I cried with the pain and managed to freak hubs out completely.

I'm not a screamer or shouter when it comes to pain. In fact people that didn't know me would be hard pressed to notice anything was amiss. I go quiet, breathe deeply and barely move. If its really bad I will start to shake. If its worse again I will cry but its silent, no great body wracking sobs as I don't have the energy and it hurts to move.

Even when I had a small bowel obstruction over ten years ago now, I slipped in and out of consciousness without so much as a whimper. I really do the British stiff upper lip thing quite well. I think it stems from childhood my pain coping strategy. From quite a young age I knew that my peers thought I was a wimp or a moaner as everyday some bit of my body hurt and I would tell them. (my family were great). I soon learnt that if you complained a lot even if it was the truth no one believed you. How could a child with nothing medically wrong with them hurt everyday?

A classic from my youth is when a teacher rang my mum to tell her I needed picked up from primary school because I had a headache. Her words went something like this "We have maths today and Rachel now conveniently has a headache". That's stayed with me for thirty years. Yes we did have maths which I hated, I have undiagnosed discalculia (sp?) (like dyslexic but with numbers couldn't tell the time until I was 18!, but that's another story otherwise you will know me as tangent woman!).

 As I lived a ten minute walk from school it was agreed mum would set off and meet me half way rather than me hang around for her. I set off staggering down the hill vomiting most of the way. By the time mother reached me I could barely stand. I was marched straight to the Dr's where a bad sinus infection was diagnosed.I hadn't felt the pain or discomfort of a sinus infection building, I only felt it when it got to the stage of vomiting with it. I know my mother took great delight in ringing the teacher to tell her it wasn't a headache and it was absolutely nothing to do with maths. It also tells me that there is something wrong with the way my brain perceives pain. I think even at that age my brain was so accustomed to those pain messages it filtered them out until it got to a level where it could no longer ignore them.

Tonight I hid how bad it was for quite a while until I unleashed a four letter tirade on Frankie when he put his head on my lap. Hubs jumped out of his skin as I rarely shout or raise my voice when it comes to the babies. He then realised my eyes were streaming with tears. I hate the look he gives me when he is in total panic about what to do.The first thing he said was
"painkillers?"
"Took them an hour ago"
"Not working"
"No"
"What do you want to do?"
"Help me get upstairs, electric blanket and then Tens machine. If that doesn't work I need the out of hours Dr"
"OK, we have a plan"
Hubs likes plans and he also knows I hate seeing Dr's or visiting the hospital. Over the past four years my aversion to them has grown steadily worse. Its a vicious circle I admit I need them to help me, I won't see them to tell them I need help, how can they help they aren't mind readers. I know all that I just find it incredibly difficult to trust Dr's when I have seen the very worst of them.

Other than that I've had a good weekend. Mum and Dad with their new pup Maggie came and visited me Saturday. Saturday morning whilst out accompanying hubs when he took the dogs out I saw a baby fox. They probably have a special name but I can't remember it. It was about the size of a five week old weimaraner puppy, not that its much of a reference point for a lot of you. I've never seen one before so it was amazing! The beauty of nature is something to behold.

Plants in the garden are doing well and will get some photo's on here as soon as I am able.

I also want to say a big thank you to my readers/followers and a special thanks to those of you kind enough to leave comments. They have really touched my heart and quite often I go back and read them when I am having a tough time. So Thank you xx

5 comments:

Clove said...

Concealing an illness is like keeping a beach ball under water.

Read more: http://www.brainyquote.com/quotes/keywords/illness.html#ixzz1ORZAvWJV

I have not learned yet how to handle all of this pain, I'm some ways I am tough, but sometimes this stuff brings me to my knees. We will find a way out for sure. xo

The Myasthenia Kid said...

Hi Clover,

Thanks for the link will check that out.

Pain is tolerable today and have been making sure I keep on top of the meds thats half the battle.

Hope you are ok?
Rach xx

Rachel said...

Rach, I hope the pain has let up some. There's no need to feel like a post needs to be inspirational, your blog is also a place to rant when things aren't going as you would like. I think a baby fox is called a kit, but I'm not 100% sure...
Hope you start to feel a bit better soon!

Nihlaeth said...

Thanks for writing this, I recognize so much! I got diagnosed with EDS almost 3 years ago and I still can't get myself to take painkillers. I still think of myself as pathetic and weak. All I allow myself is a microwave cushion... So I spend lots of time in bed, not even able to read or watch a movie.

Is it ok if I link your blog? You can find mine at http://nihlaeth.nl

The Myasthenia Kid said...

Hi Nihlaeth,

Thanks very much for your comment and thats very kind of you to link our blogs I will be checking yours out shortly.

Rach