Childhood imaginings

I have just been reading Stephen King's 'On Writing' where he talks about his earliest writing attempts as a child and the imaginary worlds he created in his head. Reading this got me thinking about my own childhood and some of my earliest memories involving imagination.

I must have either read or listened to someone read Jill Murphy's 'The Worst Witch' because a school where young witches learned how to do spells was the theme for my imaginary world. It was not just me living in this world, but my then best-friend Sarah was also there. We would see each other during the day, then say "Bye, see you tonight at Witch School".

At night, in my dreams and imagination, we would both leave our homes and ride off on broomsticks to our 'other' school. Here we would meet up with our schoolmates and study spells, potions, transformations and how to fly. We had adventure after adventure, sometimes there were incidents in class where someone would mess up a spell and end up turning themselves into something unpleasant by mistake. Tricks were played on teachers, familiars were misplaced and friendships changed over time.

The part that I find most fascinating as I look back is that when Sarah and I would meet the next day, we would talk to each other about what had happened the night before at Witch School. When we discussed the night before we would have the same stories, when one of us started talking about "so-and-so doing this" the other would say "Yes, and then she did this". It was fun and incredibly entertaining.

All that fun and imagination seems to disappear as we get older. Although if I am being honest, I do still fly away to different places and worlds

My name is Becky and I abuse grammar

It has been quite a while since I wrote in my blog, a few months in fact. Part of that was because we spent some time in Wales, where - believe it or not - I actually improved. When we came back home I very quickly deteriorated and found myself back where I started. That was kind of depressing to be honest. My inner tendency towards negative thoughts took over and I have spent the past three weeks or so being kind of bleurgh.

I have consoled myself with trying to write some fiction. It was actually something I had started writing before, but then had a dramatic moment and completely changed it. The basics were still there, but I did feel as though I had improved the telling of the tale. Admittedly at the point I asked if any friends would mind reading it and critiquing it for me I had only written fourteen pages. In the almost-week since some friends very, very kindly agreed to have a read I have decided that, although it is incredibly kind of them, I really do not need them to give me an opinion or ideas on how to improve because it is - quite clearly - crap. I am sure that you know what it is like when you have decided that you just completely suck at something - and I do not mean that comment in any kind of 'Carry-On' way! On the other hand, I will be incredibly grateful to read any advice they give me on improving my writing. I do know however that I cannot write fiction, not even when large chunks of it are based on reality.

 Plus, and I am sure you know this part, I suck at grammar. I cringe every time one of my friends admits to being a grammar-nazi, because I know - I just absolutely know - that I abuse the poor, innocent comma. It really does not deserve what I do to it. I am sure the comma never asked to be stuck in places that it has no reason to be in, but I cannot help it. My brain just keeps insisting that they be inserted. I do need help in stopping my terrible addiction to grammar abuse.

Exercise with FM

What do you class as 'exercise'?

I imagine that the term 'exercise' has a hugely different meaning for me than it does for most of my friends. When I was a child, it meant practising gymnastics, going horse riding, running round with my friends or whatever else I could come up with at the time. As a teenager that did change a little, although I kept up the gymnastics until my mid-teens as well as adding in scuba diving - although I will admit that part of the attraction there was the club bar where they were happy to serve me despite my age. As a healthy adult I was happy to go walking, but refused point blank to run as it was something that I had always hated.

Now exercise can mean as little as sitting on a chair with my feet flat on the floor and simply straightening my leg several times. Like the majority of my friends with either disabilities or disabling illnesses I have to be careful not to get carried away and do too much. I did that back in 2008 when I was apparently improving a little; I got excited that I could walk - without sticks - for up to half a mile. I pushed it too hard, got carried away and ended up spending months in bed; almost back to where I started out.

Because I spend a ridiculous amount of time unable to get out of bed I have had to alter my expectations of what exercise is and try to be realistic about what I can and cannot do. It is hard not to get carried away; I have a tendency to get excited and think that I can do far more than I can. I forget about the consequences of my actions and put myself in a position where I risk exercise having a seriously detrimental effect on my health.

I am trying to be good however. I am starting out with quite literally a couple of repetitions of movement and very, very slowly building on it with the hope that I will get some improvement, however small that may be.

Phobias and how my worst phobia began

My big confession: I once left a country because of a spider; or, strictly speaking, a principality.

I have one of the most common phobias around; arachnophobia. Even just thinking about spiders makes me shiver and my flesh crawl as though hundreds of little eight-legged creatures are running all over my body. Believe it or not I actually have an even bigger fear, one that really came about while I was in High School; Crane Flies. I am actually more scared of crane flies, also known as daddy long-legs here in Britain, than I am of spiders and believe me that takes some doing.

I had actually thought that I was getting a little better with spiders, however when one approximately half the size of the palm of my hand ran across the living room floor two nights ago I screamed loud enough to wake the dead. Because the spider ran under the sofa and Pete was unable to catch him, I insisted on being taken into the bedroom and refused to come back in. Even now, two days later, I still keep on checking my legs to make sure that nothing is crawling on me.

I know without doubt though that I will never get any better with daddy long-legs. September is a hellish time of year for me, as it always spawns hundreds of them and they all seem to try and fly straight at my face. I said that this particular fear came about while I was at High School and I was being honest. For anyone that remembers what the layout was like at Crestwood School during the late Eighties and early Nineties, picture the grey mobile classroom building around the back of the school; I think it was near the domestic science classrooms. Come September the entire end of that particular mobile would be absolutely covered with daddy long-legs. When I say covered, I do mean covered. Quite literally heaving with them, barely a millimetre between each of those that were settled on the building, while others crawled over them to try and find a place in the sun.

For a period of time that mobile was my form room and I had to go into that building every single day. Later on I had lessons there one day a week, in the afternoon immediately after lunch. Anyone who remembers that particular lesson will remember me begging people to hold open the doors while I built up my courage to run from the side of the main building past the crawling end of the mobile, up the steps and through the door. Since then I have viewed them with all the fear attached to spiders, with the additional horror that they fly....

At one point my phobias were so bad that they were having a detrimental effect on my life. I worked hard to try and get over them, but only managed to get so far. I simply cannot get past this point and the reaction I had to the spider from two days ago (the reaction I am still having) has shown me that I do actually need to try and find a way to at least reduce the level of fear that I feel. So, if anyone out there knows a good method of dealing with phobias I would love to hear about it.

Photographs and memories of the farm

I have just spent a couple of hours looking through old photographs that I have stored on the computer and various online photograph sties - flickr and photobox are the two sites that I have uploaded to most often. I think flickr has almost three thousand of my photographs on there. My desktop computer has thousands more photographs on that I have not yet got around to uploading.

Recently someone commented to me that they felt that while digital cameras are a fantastic development and allow everyone to see their photographs instantly, we are missing part of what photography means; printed photographs, held in albums that we can look at, hold and take our time over. As I have flicked my way through hundreds of photographs today I think I have decided that I agree.

The photographs I took when I was a child were on film, I had a limited number of photographs that I could take - mostly because mom and dad were not going to pay for an infinite number of films to be developed. Because of that I took more care to only photograph the things I really wanted to. I am not saying my photographs when I was a child were perfect - in fact, far from it. But I think that maybe now we - or I - take so many photographs we fail to look at them. Maybe photographs that remain entirely digital just do not seem to mean as much as the physical photographs.

I do wish that I had taken more photographs on the farm (Llandre Egremont) when I was little. Up until I was around 12 or so the church, St Michaels, was still standing in the same field as the caravans. The graveyard was fairly intact and safe; several of the stones were raised, horizontal stones covering the grave. I suppose many adults would express horror at the thought of four young children making a tree house in a huge Beech tree on the edge of the graveyard and having mini-picnics sitting on the raised stones. We meant no disrespect, in fact we used to talk to the people in the graveyard in that wonderful, innocent way that we lose as we get older.

I have a photograph somewhere of the remains of the church the year we came back after the winter break and found it and the graveyard vastly reduced in size. I was horrified at the time - and to be honest I still am to a degree. The photograph shows my brother on a rope swing that we had hung from the beech in mid swing, one hand on the rope the other out to the side with a huge grin on his face. The church and graveyard with its newly bare earth sit in the background.

That tree was the centre of so many childhood fantasies and games; we would see how high we could climb up the tree, who would dare to jump from the tree on the rope swing - now that was seriously terrifying - and so on. I remember my brother and younger cousin building another tree house in a tree the other side of the field - I think it's another beech - this time with a huge wooden platform crossing several branches and a rope to help you climb up.

I must admit that my cousins did get up earlier than we did at the farm. While they managed to be up in time to collect the eggs from the chickens every day, my brother and I were absent half the time. I was always up to feed the calves though; there was no way I was missing that! Feeding the calves used to consist of mixing up the milk from a dry powder and popping it into a bucket. Persuading the calves to come to the gate and drink the milk was not always easy. Often you had to call some of them until they came closer, dip your fingers into the milk and into the calves mouth, slowly leading them down to the bucket of milk. The new calves were always so lovely and I am glad we were on a farm where they were looked after well, with plenty of room to move around.

As soon as the calves were old enough they went out into the fields. All the cattle were free-range, living in large fields where they were free to roam around. Now and again we would help the farm bring the cattle down from a particular field to be checked over by the farmer or a vet. Of course, it is a beef farm and they are not there just to look pretty. They do end up going to market and from there to slaughter. We went along to the cattle market a couple of times and I have to say that I enjoyed it. I always fully understood the purpose of it, even when I was little. I think we all did. I saw chickens killed, plucked, gutted and prepared for the oven. I fished in the river with my dad, or my mom, caught fish and saw them either thrown back or killed and prepared for the table.

I loved being on the farm and I wish that I could do now what I did in my childhood.

Memory, distortion and a fantastic childhood experience...

Pete and I were talking about memories last night and how our perceptions of events can change over time. We have a couple of very obvious examples where extended family members tell people that they did something that they could not possibly have done, due to age or other factors. I am sure that a lot of other people can think of similar examples too, either friends or family members that tell the world that they did something selfless or had a worse upbringing than they did and so on and so forth. 

I did a course a while back, called Understanding Global Heritage, through Open University where memory and the effects of time were discussed as part of one of the units. I found the concept of memory distortion (article on memory distortion) particularly interesting, especially as it is something I have witnessed first hand. I have kept a diary  - on and off - for years and tend to make quite long, detailed entries for significant events. One particular conversation with an individual was something I had found extremely distressing at the time and so had written down everything the person had told me. In great detail. Several years later we were discussing the events in general terms and I raised the particulars that the person had told me. They insisted that they had never told me, that these events had, in fact, never happened and that I was obviously making this up. At the time I was both shocked and confused. I started to doubt my own recollection of the conversation, until I re-read my diary. Now, no doubt I had my own perceptions of the conversation at the time and these formed part of the diary entry, but the conversation and events in question did most definitely happen. I was actually quite worried about the person in question until I read through the module unit and did some research of my own into the subject. I still worry a little because of the actual events, but a lot less than I did initially. 

It also made me think about the events that have taken place in my own life, things that I remember (or how I remember them) and stories that I have been told by people who are no longer around. I do not want those stories to be lost; I want there to be a record of them somewhere real, not just online but something tangible. I have decided that I am going to buy a nice, good quality, attractive note book and start writing down all those events that I can remember, all the stories I have been told, so that there is a record of them. Even if the only person who ever reads it is me, at least I will remember the events the way that I remember them now and not further distorted by time and place. 

One of the greatest sets of childhood memories that I have is of growing up spending almost all of every school holiday in Wales on a farm in Pembrokeshire - or Dyfed as it was when I was very little. To have grown up being able to collect eggs every morning, to help feed the calves buckets of milk, help herd the cattle, go to the cattle market with the farmer and his wife, pick fruit and veg, ride on a tractor and oh, so much more! I had the greatest time imaginable when I was a kid and I have to say that I am so glad that I had the opportunities that I did. I would not have traded my time on the farm, which I still go to by the way, for anything. While friends would maybe go off for two weeks in over-crowded Spain, with 'organised fun' (I cannot think of anything worse) I got to explore a fantastic farm and have a truly amazing childhood. I want each of those memories to stay as fresh and true as I can make them. Although I wish I had written some of them down sooner, I think that I am going to have a great deal of fun remembering and getting them down on paper now.

When I first explain 'trade-offs' to people they often think that it sounds dreadful. For me though trade-offs work like this: EG I know that if I do 'A' then I am going to spend 'X' amount of time unable to get out of bed - is the trade-off of doing 'A' worth it? If the trade-off is worth it, then I simply go ahead. 

The trade-off of having the bathroom done is worth it. I have not been able to sleep for several days so I am a little hyped at the moment because I am running on exhaustion fumes. I thought that the trade-off of going to see a good friend that I have not spent enough time with recently would also be worth it - and it most definitely is. I know that the combination of these things will have a knock-on effect on me, but so what! It is my choice and it is the right one for me. Okay, so I might not be able to get out of bed for a couple of weeks, but I have a new bathroom and I have had nice afternoon. Now THAT is most definitely worth it!

I also have some gorgeous flowers to show for my afternoon, from A Cottage Garden in Wolverhampton. I always have such beautiful flowers from there and they last well, which makes a big difference. They are currently sitting on my altar at the moment, brightening up the room. 

These are the flowers

People talk about 'pacing' when it comes to chronic illness - and they are right. In theory. It is, however, incredibly difficult to 'pace' your activities when you basically only have bad days. For me on many days the term 'activity' can only be applied to the huge effort involved in getting out of bed and going to the bathroom. Yes, there are days when I can get out of bed and even the rare day when I can make it out the flat. I am lucky. 

I am lucky in more than one way; I have an amazingly supportive husband who does all those things that I cannot. He does the housework, the cooking, the shopping and so on, as well as having always worked full time. The amount of work he does for me would cost over fifty-five thousand pounds per year if care had to be paid for. People like my husband save the tax payer an estimate £118 billion every year. Imagine what would happen if people like him went on strike and the country had to actually look after sick and disabled people like me properly....scary thought, huh? Not least for me. 

Anyway, enough of the politics. I admittedly do rather hate all the 'big' parties, but do not want to talk about them here. 

So, back to pacing. Is it possible to learn to 'pace' properly? You know, although I have heard of a few people that have had success, most of the people I know have struggled with the concept. They have found that the reality of life is that there is no choice other than to try and do as much as you can on the 'better' days otherwise things simply do not get done at all. The theory is that by sticking to a certain level of activity on both 'better' and 'worse' days that overall you will not only find that you start to be able to do more, but that you will get more done overall. But people do not work like that. We, or most of us, find it difficult to leave something that needs doing when we have the energy to do it. 

I think that pacing is brilliant in theory, but I am not sure that I can actually come anywhere near to doing properly in practise.


 

One size does not fit every insomniac

One of the more annoying symptoms of fibromyalgia that I experience is insomnia. I know that to people who sleep properly and may occasionally experience a little bit of sleeplessness it may sound mild. It is not. Insomnia is a bitch of a symptom that wreaks havoc with your mind and body. 

How can I describe fibro in a way that those who do not have it can understand? I am honestly not sure, but I will try this: imagine having influenza all the time. Not "I've got a cold but I'm going to say it's flu" but real, full-blown influenza. The constant ache throughout your muscles and joints, feeling like your finger joints have swollen to twice their normal size despite there being no visible sign of this. Add onto that the frequent and dreaded 'fibro fog' where your brain simply decides to quit on you. Short term memory vanishes, while words you use everyday pack their bags and walk out the door. The aches throughout the body are not mild, although I suppose they are for some. For me it is constant pain that just varies in intensity from "Holy shit, that hurts" through to "Someone please shoot me now". 

In short there physically speaking, it is not a nice condition. There are a myriad of connected symptoms that vary from person to person and cannot be predicted. 

For most of us the fatigue is a pretty major symptom to begin with, so adding the insomnia into it can drag you from mildly tired and a wee bit irritable to destroying the world with a single word, should any poor soul be silly enough to speak to you. 

I have to say that having had only a couple of hours sleep, on top of the fatigue I already have, has actually left me too tired to be irritable. Or maybe I am just forgetting to be irritable. 

Normally if I am going through a bad insomnia phase I sit in the living room (my version of sitting it often somewhere in between sitting and lying down) and do something productive and different. I will list something on ebay or draw, write, anything that is different and more interesting than lying in bed. I think the worst thing that an insomniac can do is just lie there in bed; if I do that, all I do is end up thinking and getting irritable that I cannot sleep. On the other hand if I sit/lye in the living room and do something it takes my mind off the fact that I cannot sleep. I start to get sleepy - and have been known to fall asleep sitting up....

I have had long discussions with my GP about insomnia and neither of us are keen on the idea of additional medication - not after I have worked so hard to cut so many meds out. Between us we have come to the conclusion that it is not necessarily that the pain increases if I have not slept, but rather that my ability to cope with it decreases dramatically. 

So, after not sleeping well for a few days my body becomes even more sluggish than usual and my brain is not only slow, but also lowering my ability to cope with the pain I am in. Should I follow the advice of many OT's and not sleep during the day and hope against hope that results in me getting a good night's sleep? No thanks. Not for me, as I have been there and tried that. It really did not work for me, in fact it made things worse. I think everyone has to find their own coping technique, there cannot be a 'one technique fits all' approach from our support services. We are all individuals and deserve an individual approach to managing our symptoms, including insomnia. 

Lastly, I apologise if this sounds a little off in places, or if I have wandered off topic, but I have had around five hours sleep in the past three days. I am a little brain-weary right now.

New bathroom

Having the workmen in can be a stressful for anyone, for someone with a chronic condition it can have an enormous impact. 

We're having the bathroom done; with the guys due to arrive anywhere from eight thirty, it meant that I had to get up at 'healthy person' times. When I was healthy I often used to be in work for seven in the morning, then finish at three. Admittedly when I first started working, we were not allowed to actually enter the building or start until seven thirty, so I used to arrive and collapse on the sofa in the lobby and chat to Paul, the security guy. There were times that I would arrive straight from a night out, or still drunk from the night before. Paul always found it highly amusing. We used to have some good chats, though i wish he had not insisted on telling the senior management team that they should promote me while they were walking through the lobby after doing promotion interviews one day.....

That, however, is long in the past. Nowadays, while I can still be wide awake at three in the morning, getting out of bed is almost an Olympic event. It takes a great deal of time and effort, and I feel like I have been in training and preparation for ages for this week. They were due to arrive around eight thirty this morning, which meant that the alarm was going off at seven. It took me until seven forty-five to even sit up. I am not going to tell you how long it took me to shower and get into clothes, nor shall I mention how much assistance I required to do so. I am sure that my disabled friends can take a wild guess, while my able-bodied friends are left wondering what on earth I am talking about. 

Still, I was actually dressed and (in theory) awake by eight thirty. Actually, no, that is a lie. What I was at eight thirty was in a drugged (medicated) haze sitting on the bed wondering whether I should attempt to move or not. In the end the effort of getting out of bed, showered and dressed made the decision for me and I fell asleep again. Although I woke up at various point through the day I actually never even met the men who spent most of the day dismantling the bathroom. I have to say that they have worked extremely hard. The bath is gone, sink is out, there's new plasterboard up, tiles delivered and we actually have an extractor fan. 

They're here for the next two days; I think tomorrow they're doing the tiling and putting in the shower tray etc, then Wednesday it will be the shower itself and the 'disability' bit - the grab rails and shower seat. 

Now that part is fantastic and I'm really looking forward to having a new bathroom, but the next two days are going to be interesting. I have to admit that I am dreading getting up early in the morning, especially as I have a doctors appointment so will have to get to moms for a shower as early as possible before the doctors. Right now I'm thinking of cancelling the appointment as it's a case of balancing what I can manage and making sure that I do not overdo it.

Living with chronic pain

My husband and I were talking to a friend recently about pain, what it is like to live with and how we cope with it.

Now looking briefly at my GP's letter to the DWP, I am diagnosed with fibromyalgia, CRPS, unusual forms of migraine that affect one side of the body and endometriosis - as far as pain conditions go. My husband also has chronic pain from two collapsed vertebrae, which impact on the nerve going down his right arm and have caused damage, as well as a serious leg injury which is currently undergoing treatment. We know a little about living with pain. 

People who do not have pain will occasionally say things like "You get used to pain" or "After a while you start to not feel it so much". Both of these statements are completely inaccurate. You do not get used to pain, although you get used to being in pain. Those are completely different things. The pain is still there and you still feel it as much as you ever did, but you become so used to being in that much pain that when you have brief moments where it vanishes you are utterly surprised. Often you do not realise what has happened until that brief moment has passed and the pain is back.

Does living with chronic pain mean that you cannot be productive? 

Of course it does not! Many people are still able to live full and realtively normal lives while being in chronic pain. They may have to make some adjustments to the way they do things or use coping methods, but they are still able to work. They are still able to walk, to do their hobbies, socialise and generally live their lives. 

For some people, like me, the pain is more wide-spread and more serious. That does not mean that I am unable to enjoy life though, it just means that I have to do things differently to other people. I live in a combination of having to plan things ahead of time and being aware that even with long-standing plans I may have to cancel at the last minute because of the severity of pain I am experiencing. 

I spend most of my time bed bound. The pain is not my only problem, in fact for me it is not the worst problem. But it is one of the more significant reasons that I end up stuck in bed and not able to leave my home. There are some hobbies that have fallen by the wayside purely because I am no longer physically able to do them. But I have also picked up some hobbies that I had abandoned long ago, like my drawing. I also study, I write - for example - My 'zombie blog', though that is not the only writing I do (really it's just something silly to keep me entertained). I also have a try at different things, some of which I decide are not for me, but others I pick up and do on the odd occasion; I have a half knitted scarf sitting beside my as I type, I have a book on patchwork on the other side of me. I read a huge amount of fiction, largely sci-fi and horror because I like to escape. 

You do not have to be a brilliant artist to draw, you do not have to be a brilliant writer to write and you do not have to be the greatest singer in the world to sing. Whatever hobby you do that keeps you entertained is fantastic and who cares how good your are at it - the only person whose opinion matters is yours. If it is fun and you enjoy it, then do it. 

The point of bringing up my hobbies is this: when you live in constant, agonising pain you need a distraction. You cannot have people talking to you 24/7 because sometimes your brain will not work, or sometimes you will be so angry and frustrated at the pain that you cannot tolerate other people around you. They also may not want to be on the receiving end of your temper all the time, no matter how much they love you. Hobbies can be a wonderful distraction and they form part of our combination of methods of coping and managing the pain. 

Yes, I am medicated. I am on morphine patches, which give me a constant steady feed of drugs. I take a whole host of other medications, not all for pain. But I tell you what, distraction works almost better than the meds. 

Having people visit can be wonderful though and the best distraction/medicine going. They say that laughter is a wonderful medicine and I cannot disagree. Spending too much time alone can be dangerous for a pain patient. It gives our brains too much time to think on the negative things in our lives and we can end up becoming depressed, or worse. We need people around us, but we also need people to be patient and understand that living with chronic pain is difficult. It can make us forgetful, partially because of medication, and it can make us a bit short tempered and irritable. Keep talking to us for more than a few minutes though and I promise that not only will we have fun, you will also make more difference to the life of a chronic pain sufferer than you can ever understand

I would say that is it probably best to just drop a quick call or text first to make sure I am awake or there is a chance you will just be knocking and knocking with no answer. Of course, if I am on my own I will not actually be able to get to the door to answer it anyway - though I guess we could shout through the letter box! The bedroom is next to the front door, sort of, so that could work - see, I'm adaptable. Huh! I am pretty sure I read that it was the species and people that were able to adapt quickly that survived the last ice age. On that logic pain patients are the perfect survivors; there is no-one more adapatable than a pain patient who happens to be a good self-manager!

Mental Olympics

I have always struggled to maintain concentration on one subject. At school I could be sitting in a classroom and a passing cloud would completely capture me; I would have no clue what happened in the rest of the lesson because I had gone away into my own head, my own imagination. As an adult, I am forced to admit that nothing has changed. 

I cannot do one thing at a time. I quite literally cannot. My mind is in too many places, jumping over all the possibilities, all the entertaining things that there are; things that I could be doing. I have never, ever been able to read 'just' one book at a time. I have several on the go at any one moment and will jump in and out of them at random, switching from story to story. In between I will draw, or watch TV or talk or...the list is endless. 

I genuinely cannot say whether having fibromyalgia has changed this. If I try and think about it, try and focus for a minute, I think that nothing has changed that much. I still fit and have to be doing several different things at the same time. The only thing that really throws me is noise. I have never had much tolerance for noise - neither have my brother, or my mom - but now it is as though all noise blends into one. If there is background noise and you ask me a question, please do not expect an answer. All I will have heard is a random noise that will not have made much sense to me. A little like Charlie Brown's teacher where all you hear is "Wah, wah, wah, wah". 

Mind you, saying that I'm sitting here typing one thing while having a conversation with Pete about people murdering apple trees (cutting them down), so maybe it is not quite as bad as I sometimes think. 

Okay, I admit to being lazy and needing a good push in the right direction

Actually made it to Weight Watchers for the second week in a row, which is fairly unusual for me as for quite a while now I have generally only been well enough to go once every four or five weeks. I am definitely not complaining as I actually lost two pound this week. I am not thinking about how many more pounds I need to lose, just concentrating on trying to eat sensibly using home made food prepared by my Chef (aka my husband, Pete). I do like that Jane, our Weight Watchers Leader has such a strong focus on freshly prepared food and has done since before Weight Watchers jumped on her band wagon. She has also had a focus on moving more and exercise for a long, long time and does encourage people no matter what their circumstances. This is not an advertisement for Weight Watchers, more like praise where it is due for a lady who had the right idea long before anyone official came out and agreed. 

I think that for me the only way I actually lose weight is to really have a lot of structure. That means planning meals for the week, including snacks if possible and making sure that I stick with that plan. Admittedly an A1 sized flip chart sheet sitting in the living room is hard to miss, but even with it being on full view, there is the option of ignoring it. However I know that if I ignoring it my arse is gradually going to get bigger and bigger until I actually become wedged in a doorway and someone has to call the fire brigade to rescue me. Not really the image I want to leave a load of firemen with!

I do have a tendency to be the same with everything. It really is not only the food planning and weight loss that ends up being last minute and guesswork. It is certainly something that I have found myself doing time and time again when it comes to essays and studying. Yet get me on a subject I am truly interested in and I will do well; for example the OU's now defunct course "AA310: Film and Television History" was the best course I have ever done with them. I actually enjoyed doing research and writing essays. I found the subject fascinating, particularly my last essay where I discussed feminism in Joss Whedon's series 'Firefly'. Sounds odd, I know, but there is already some interesting research and academic writing on the subject in general and Joss Whedon's many TV series in particular. I ended up gaining a distinction on that course and came very close to getting a First Class Honours degree because of the renewed interest that course inspired in studying. 

Unfortunately the interest in studying is rapidly on the decline right now. I get interested in my current course for about five minutes, then realise that I do actually find the tutor mildly irritating and the course rather bleurgh. I think that once this current degree is completed, my second with the Open University, that will be it with that particular institution. They are moving away from the freedom of choice that made the University an attractive alternative and becoming much more like a traditional University. Yet many of those 'traditional' institutions seem to be moving more in the direction of some truly inspiring distance learning courses. All good things come to an end, I guess. 

 

Here's to being who I am, instead of who people think I should be

I have started to get back into sketching. I have done a little drawing now and again over the years, but the last time I picked up a pencil with serious intent was over twenty years ago. 

As I picked the pencil up and started sketching for the first time I have to admit that I was convinced my drawing would look like something a five year old had done. I was pleasantly surprised that it came out okay. I am never going to be the greatest artist in the world, I know that, but I do love to draw. 

When I was in my teens my love of heavy metal and rock music did influence my choice of subject matter. Well, that plus the fact that I really hate to draw 'nice' scenes. Rolling landscapes or close ups of flowers may interest other people, they may even be pretty to look at, but they really are not something that I have any interest in drawing. So, I draw portraits of rock stars and more than a couple of Iron Maiden's mascot - Eddie. Oddly enough I have attempted another drawing of Eddie amongst my new sketches. I wanted to see if I could still draw like that, if the years of not really drawing anything much had taken their toll and I had lost whatever abilities I had to begin with. I have not had time to upload my most recent attempt, so I thought I would upload an old drawing. I think this was from when I seventeen years old.

I had always had trouble with colour when I was young. I did do a monotone painting for my art exams at school, but I have to say that it was probably because I was pushed into it. I actually took my art folder in to my teacher (who sadly passed away far too young) to see what he thought. I was pleasantly surprised that he liked them. He asked me why I did not draw in the same style for my art classes. I still cannot find an answer to that one. If I was suddenly sent back in time, perhaps I would happily shock the rest of the art department and do things my way. 

Now that is exactly what I can do now. Not the shocking the art department  part, the doing things my way. I always felt under pressure to do things someone else's way, I felt that I had to try and fit in. Yet I found school impossibly awkward. I felt like I didn't understand what I was supposed to do, how I was supposed to fit in. I would often say, or do, things that were not what everyone else felt that I should do. I struggled to understand people's signals, you know? Body language and emotions just did not always compute with me. If there was something going on where I had to be in a group of people I felt out of place. I had no clue how to behave in a way that would make people 'like' me, though I did try. I always felt like I was trying to play a game that no-one had told me the rules to and I was struggling to play catch up all the time. 

Now it is a different story. Work gave me confidence that I had been lacking. Although it was a hellish place at times, it did give me that. I didn't always fit in there, but I had stopped caring. Now that I'm here, bed bound most of the time, house bound pretty much all the rest of the time, I can be who I am without fear or worry about anyone else. And I can draw exactly what I like. So as soon as I remember to photograph my new drawing I am going to upload it to show you all. In the mean time I hope you like my teenage attempt at Eddie.

After over twelve months where I haven't been able to deliver any of the 'Expert Patient Programme - Chronic Disease Self Management course' sessions due to my delightful medical conditions, I have finally managed to deliver two sessions from a course. I have also (finally) had my long overdue monitoring assessment. 

Obviously I cannot go into specifics because we value participant confidentiality, but overall it was a good session and I passed with flying colours. It is nice to get it out of the way, though in all honesty it did not bother me at all. 

I am slowly starting to do one or two things, although it is incredibly slow going and does take quite a while. There is a pay-off in terms of time I then have to spend doing, well, nothing but lying on the sofa. But, you know what, it is worth it. I know that there is going to be a trade for having spent so much of my very limited energy doing 'whatever' but it is doing the things that make us happy that makes life worthwhile. 

I honestly do not think it matters how ill or how disabled we are; there is always something that we can do that makes us happy. In my case it is drawing, writing, reading a book and delivering EPP courses to other people who are sick or disabled. I do think that EPP can make a positive difference to people's lives IF they get involved and do the 'exercises' that they're asked to do. 

In every course that I have delivered there has been a point where the participants try to turn it into a 'chat' session and in one way that is great. It means that they are getting along and have gelled as a group. Of course, as the tutor or session leader, it does mean that I have to pull them away from that and get them focussed on whatever the particular activity is. 

There is one activity that I am not sure about. I do not particularly enjoy delivering it, but apparently I am one of the tutors that delivers it well. I think asking people to talk about things such as 'living will' can be difficult. But I also think that it is a very useful thing to know and something that should be talked about more often. 

Brain hop-scotch

For the past week or so my brain has gone into hyper-drive, jumping from one subject to another and finding it impossible to settle. I am struggling to know how I feel at the moment, what I want to do to fill my time and a million other things. Nothing feels right, I feel sort of mentally itchy and uncomfortable in my own skin. 

I have also got it into my head that I have offended someone; a specific someone who is a friend and I simply cannot get the thought to go away. I have no clue why I think that, I cannot think of anything that I may have done but the thought and feeling remain there anyway. I do not exactly know what to say or do; I mean how do you ask someone if you have done something to offend when in all likelihood asking them that is likely to cause more offence than if you had just behaved like a sane person to begin with. 

Ah, well. Sanity is, perhaps, over-rated anyway!

I have started drawing again (and cannot remember if I already blogged about that) as I enjoy it and thought that it might be good for my hands, which have been incredibly painful lately. It has got to have been a good ten years or so since I last picked up an pencil, so I am actually quite pleased with the first result - not that I am going to put it on here! That would just be disturbing.... if only because of my chosen subject matter. I tend to draw disturbing images, the dead or horror figures, things that live in nightmares and horror movies. For some reason when people meet me they never think that I am going to be a horror or metal fan. I can never understand why; I presume I am supposed to look like some archaic 1980s view of 'rockers' or something rather than just a fat chick in a wheelchair. 

I have also decided to start getting some of my short story ideas down in writing (thank goodness for Dragon; mine is named Sid). Again I do have a tendency to head straight towards horror and sci-fi, because that is what I know. It is what I read most of, although intellectual snobs do like to put down anything that they 'genre' fiction. All I can say is that they are missing out and therefore likely to be the first one's eaten come the zombie apocalypse. Oh, come on! Like there aren't a few politicians out there that you secretly hope zombies will chow down on. 
 

I figured calling this blog simply Rebecca's World means that I can post about pretty much anything and everything that I want to. As I am disabled and housebound, my world perhaps is not as large as some other's, but I still find life and my world pretty interesting. 

I am not going to dwell on the reason I am disabled, other than to say that I have a condition called fibromyalgia, which affects every part of my body. I am in a lot of pain and sometimes that does get so out of control that my medication cannot help. At that moment in time the pain consumes my world, everything else phases out into a distant dream and I am transported to a place where there is nothing but pain and misery. It does not last, at least not for more than a few days at a time. Once it is over that world of pain is gone, difficult to remember the intensity of what I felt during that time. 

For most of the time I am at a controlled level of pain and able to do some of the things I have always loved. I read - excessively! My genre's of choice do tend to be horror, thrillers and science fiction; mostly in the form of that amazing man, Terry Pratchett. At the moment zombie novels do seem to feature rather heavily in my reading list, as do post-apocalyptic tales. Hopefully this is not a sign of things to come, but merely one of my obsessive reading phases. They do happen from time to time; actually, if I'm honest I am a little obsessive about things full stop. Back when I was still able to do the washing up (see, disability has to have some advantages and not washing up is definitely on the list) I used to have to have everything in the sink a certain way. If things were not in the correct position I would take everything out of the bowl and then put things back in the 'right' way. I know, I know, that is an odd thing to do, but it is not like I thought the world would end if they were in wrong, I just could not put my hands in and wash up until things were right...

As you can tell my mind does tend to wander off on some rather strange segues. It is just the way it is and I seriously doubt I am likely to change; but then again the cognitive symptoms of my condition are getting worse, so I could be wrong about that.