Made Sick by the Sick Note

I realized on Tuesday that I had not renewed the library books so I went online and found they were way overdue and I had to take the books back in person and pay the fines before I could renew them again online.

I had to go and collect my sick note so I thought I’d make a trip of it. By the time I was washed and ready to go it was already dark (as I’m on a schedule of 1-2pm to 2-4am at the moment, it seems to be where I settle given enough time in my day)

I got all the library books into a bag and realized how heavy it was. I checked my purse but I didn’t have enough on me to get a bus up, so I figured I’d get some money out and get one back.

All wrapped up to face the British weather I made it as far as the front gate before I noticed just how much it was raining by seeing it through a headlight on a car coming in the opposite direction. My legs were wobbling from fatigue even with the cane, as I was lopsided with a ton of books on one side.

I realized I’d be lucky to make it back in one piece and so went back inside the house, beaten. It’s really frustrating to come across your limitations like that, it made me realize how much a car would be really handy (but finding the money for the lessons when I could be facing bankruptcy is just another limitation).

So I decided to split the journey up into two for the next few days. Firstly I’ll just go up to the doctors and collect the note and get some money out and then I’ll go up another day with the books and endure a bigger library fine (£15 and rising).

So yesterday I took the trip to the surgery. Usually with no muscle pain or fatigue I can get there and back in 30-40 minutes tops. It took me an hour and a quarter with the cane and with my legs as unstable as they were.

It wasn’t a nerve flare but just the inability to hold myself up without it being too taxing for my legs. By the time I came back I was so exhausted that the effort to stand up and cook soup for tea was enough to send me into the bath afterwards.

I feel like I’m going into a phase I’ve gone though a few times before where I’m fighting not to be come bed bound. Because all I do all day is sleep or sit in my armchair (and even then sometimes I nod off or need to rest my head on the arm). The last time it happened was when I was off sick for two years, and although the period where I over did it was more compared to this time, my age is working against me now.

I’ve been off work just about 2 months and I don’t feel any more rested than when I’d been I work, except now the idea of doing a days work is so out of the question it’s frightening. It feels like my body is slowly shutting down and if I try to ignore it and ‘soldier on’ it only speeds the process up. If I can be made sick by the sick note, what chance do I have of keeping a job?

Literally Losing Control

Before I get onto the main piece I just wanted to record a classic Fibro moment for those out there similarly afflicted: I went upstairs to my bedroom to get my headphones so I could listen to another Alan Watt Blurb. I ended up in the bathroom instead and so proceeded to brush my teeth and then go to the loo. It was only when I got downstairs and saw the blurb playing on my computer that I realised why I went up stairs. This is classic fibro behaviour…It’s amazing how much of my activity is habitual auto pilot.

~

So I went through a bit of a weird episode yesterday. I’m going to talk to the doctors about it because it was unusual. It started off with my legs wobbling a bit as I had over done it physically the day before. I had to use the cane inside the house, which I only ever use if I feel really weak/off balance. Climbing the stairs took forever as raising each leg for each step was an effort. I got in the bath to soak and recover but within 30 minutes I started to get this tingling sensation, like pins and needles starting in my hands and feet, then it got really intense like every atom was bouncing inside my skin, this sensation crept up my legs and arms and kind of met in my abdomen/chest, it also spread to my face where upon I got a headache.

I couldn’t form a fist or wiggle my toes very well, the effort to do either of these was excruciating and when I later recovered it made me realise just how difficult it was for me in this episode. (Like I was in quicksand and could barely move them) My hands kind of curled up like the tendons in my hands and arms were been pulled in along my elbow like a taut rubber band. It made my hand form a kind of beak shape. I was shaking all over but mostly in my arms and legs, with occasional spasms.

After some time if I didn’t wiggle my toes or used my fingers to make ‘O’ shapes they would go kind of numb and I’d get these small bursts of nerve pain from the ball of my foot up my leg to my groin/hip and the pins and needles would get worse. I found myself curling up in the bath to use less energy trying to hold my legs outright. My heart was hammering the whole time and I could hear it in my ear again. I kept trying to calm my breath because I was getting a bit scared, and I thought if I breathe deeper my heart rate will come down. It was hard but it’s what I focused on whilst I waited.

I couldn’t get myself out of the bath; Ray eventually found me and pulled me out, crying because it was very creepy. It was like I was loosing control of my body a bit and I had to keep moving it to keep in touch with it. The only thing I can possibly relate it to is sleep paralysis: when I’m trying to wiggle my toe so I will move my body enough to wake up properly. (See my blog post: Lucid Dream for more details)

When I was out and Ray had me standing up I defiantly felt better. It seemed the heat of the bath intensified the experience. I was still very wobbly but I was able to slowly get down stairs with the cane. I sat down and Ray made me a sandwich and the pins and needle were still there but less intense, but it felt like the top layers of my skin was numb, like it was over exposed by the pins and needles and now it can’t feel anything (like adjusting to bright light after being in a dark room but with touch) This lasted about 30 minutes or so making the whole episode about an hour in length.

Afterwards I was exhausted but unusually hungry. Anyone who knows me right now will know I haven’t had much of an appetite for over a year now, due mostly to medication I believe, but unfortunately I really need the meds to have any chance of getting a comfortable nights sleep. So to be this hungry, to point of ordering pizza (so I didn’t have to stand up to cook) is unusual, especially since I’m not made of money right now.

It was like the episode, or whatever it was, drained the life right out of me I was so hungry. Usually I only feel this after a bad period and I’ve been in the bath for four hours and I’m drained by all the pain and therefore in need of more energy otherwise I’ll crash. It was like that but I wasn’t in pain it was just uncomfortable and an extreme effort to move.

Knowing how much this spooked me is enough of an indicator that this is something out of the ordinary. It could be nothing, part of the course of ageing with Fibromyalgia, but of course my brain won’t let me alone until I find out for sure. What surprised me the most was how much I was willing to almost dismiss the whole thing, to bury my head in the sand rather than face what happened to me and what it could mean: Good old programming still at work I see, when will you leave me in peace? When will my experience be enough?

Ignoring the Inner Voice

I’ve been struck recently just how much of our inner voice is cut out in everyday life. We eat beyond hunger, drink beyond thirst. Bury our feelings until it bursts out of us uncontrollably and push our bodies, quite often, beyond their limits.

I’ve been through physio over the last year (See: Blogcasts/Myo Fibro Hell) and in learning how to listen to my muscles, to know when I’m stretching and overdoing it, it made me realise just how much I was ignoring it in the first place. Now I can tell much better when I’m on the edge of a flare and to slow down.

So it got me to thinking, how did I get so out of whack in the first place? When did I stop listening and why? Since then I’ve realised it was because it’s reinforced all around me, our culture, our work ethic of driving ourselves into the ground for a wage that can barely cover the basics.

Countless films and book all reinforce the idea this is normal and I see people on the verge of a breakdown as they plod through the same old routine because they have no choice, despite their health and peace of mind.

What ever happened to liberty? Money is the new slavery and just because we can buy ourselves little tokens that make us feel good, nothing you can buy in a shop is going to get you that time back with your kids and the ones you love.

We are so hooked to our jobs that they become our lives and given some spare time we desperately try to fill up the silence with anything, so as to avoid looking at who we are and what we might like to do with this life. We are so used to not doing what we love we forget what it is to have passion.

I always feel the need to be productive, even when I can’t physically or mentally cope with it. It’s been drummed into me that work must take effort. If I’m enjoying it I can’t be working hard enough. However, I realised that the things I do effortlessly because I love them are work too, but for some reason I don’t count it in my brain, because it doesn’t drain me enough. The passion gives me the energy I need. I’ve been underselling myself to myself for years!

A Place for Tears

I was riffling through some old photos today to show my new fibro friend (See: Blogcasts/Myo Fibro Hell) the up’s and downs of weight over the years as I’ve discovered we’ve both had eating disorders in the past.

I have tons of photos because I’m a bit of an amateur photo geek and I was looking for the big blobby pictures and the ones when I was a 6 stone rake. It was interesting to see that although my body and moods changed there was a quality to my eyes and a presence that remained through out.

It seemed to confirm my last post, that humans are such a flux. Nowadays my swings are more internal rather than attacking my appearance through food or the lack there of.

As I went through the entire batch of pictures I came across countless of my family. It’s been nearly two years since I spoke to any of them. Their stance on my sexual orientation unfortunately has led me to this. An unfortunate turn of events, but necessary because I had to break free of the mental ruts they were all in that was bringing me down. I had to make a choice between my partner and my family and I’m at peace with it.

However I didn’t realise how much until today, because I didn’t even cry. I could see in their eyes they loved me, they cared, but they were so wrapped up in their problems they couldn’t provide me with the parental roles they were supposed to. They couldn’t see that my partner was good for me; therefore they couldn’t see me at all. I made a choice to live my life instead of letting them live it for me because they were too afraid to look at their own.

The only time I cried was when I found a batch of photos of my old Samoyed. We were very close; he always knew when I was down and would come and nestle into me to keep me company. He was my wolf hound and I miss him dearly. For him I shed a tear.

The whole process made me think about the fact that there is a place for tears. I’ve been on a new anti-depressant (Citalopram 20mg) having not taking any meds for 10 years. One of the reasons I didn’t like it in the past because it made me very numb and I couldn’t cry except in these horrific down turns that snapped suddenly in and out after 6 months or so of nothing. Without them in a bad patch I can burst into tears over nothing at any moment.

5 weeks into this current attempt the fact that I can still cry is a good sign. I think when you are completely cut off from your emotions it’s easy to ignore or overlook issues that need to be aired. Having a good cry everyone now and then helps. The fact I didn’t over my family is more a sign I’m at peace with my decision rather than a lack of feeling, because believe me it still hurts.

Becoming Miss Brown: The Tao of Niamh

If you are unsuccessful in and insane world you are going in the right direction. That has been the story of my life. I have never fit the imposed system placed upon me. From nursery I was a loner, told to ignore the experiences I had, the emotions I felt.  For along time I buried these feelings, isolated myself and it ate away at me like a cancer.

We all need affirmation in life and when you don’t find people who think like you then you can easily self destruct. I’m writing this blog to share some of the random inner workings of my mind and my ever changing outlook on life in an attempt to give back some of the affirmation I was lucky enough to receive from many wonderful people that touched my life over the years.

Something I picked up from some Buddhist material I read was the idea that we are constantly in a state of becoming in the present, that we are never the finished article, but rather a living work of art suspended in time. So in a similar vein this blog will try to collect the human flux that is becoming Miss Brown.

Watch this Space!

I’m trying to expand the blogging business from MySpace into Word Press for more exposure and to organise the different blog topics better. All names have been changed to protect privacy.