A New Life

Wow, today I got a text out of the blue from someone who had read my blog. I had almost completely forgotten about it and the comment was lovely so twice the bonus.
A lot has changed since the last time I wrote.

I didn't get the courage to speak to Mummy about moving out until March and a lot of talking with my father and counsellor as to how to go about it. It must have payed off as she said yes!

Things didn't go smoothly and there was a lot of stress in the house - my parents relationship is slowly falling apart which meant huge arguments then, now they are just not talking.
So nothing much happened and then they went to visit my younger sister on her GAP year for two weeks and I was left at home with only a girl a year younger than me who is very quiet. It was bliss and I thrived on it, in fact Mummy got annoyed the change was so good! That was middle of May and after that she could no longer delay or deney the fact that living at home with the family was not doing me any good.

A week later and we saw a flat and put an offer in.
Two week later and I was renting a flat.
Five/six weeks ago I moved in!

There was such a change, being in control, in a small place with no stairs means that I have a lot more energy. It means I don't have any noise (apart from usual town noise but it is a very quiet area) and I can have the light off to help my eyes. I only see Mummy a couple of times a week and my physio comes here and I am within walking distance of my counsellor.

It has been a huge boost in self confidence, self worth, self belief and energy. I get to do my own cooking, cleaning, ironing and running of my life. Added to that I have now got into building and designing websites with one 32 page website under my belt which I am now managing and building two more - it is building!
My relationship with my mother has improved, I now have things to tell her and it is now a little more equal, we have things in common now.

It isn't all great, my health is not great, I do have more energy but getting crippling headaches, nosebleeds and my gut isn't working well at all (this is more irritating than everything as it means despite eating healthily I am gaining weight - how annoying!!) but I am able to take each day as it comes and judge it as to how I feel and not live it as a show for someone else.

I was able to go to a 21st party, I am back feeling sociable and I really hope to get back into going to the munch but that requires a walk, a 50 min bus journey, another walk, then the munch and then all that back again which at the moment is a little too much!

Having done months of seeing the counsellor twice a week she is now on holiday for four weeks and after that I am going down to once a week again and I feel much more able to stand my ground whatever comes my way.

So in conclusion, live is good for what it is, I am in control as much as I can be and I have a brand new chance for a life and it is now up to me to make of it what I will.

Who knows what will happen!

Granny Annexe

I have just had a really good long talk with my father, Mummy is out and I sat down and told him that something needed to be changed. It was great, though it is slightly scary due to the fact that Mummy still needs to be told and also in a way that makes it seem her idea! Daddy is going to talk to a family friend and see if they have a granny annexe or know someone that does and see if they want to rent it. This means that I will be able to move out, but still be close to someone who can check on me, it will hopefully be one level and small and compact so use less energy and be manageable even when I am ill and also close by so Mummy doesn't feel alienated.

It is such a relief that he is doing something, we have talked about it before but it hasn't come to anything but this time I think he gets how much I need it and why I need it to happen now. I need to do it while I am fired up and energised before I am ground down again and too tired to stand against it all. Of course this means I need to start making serious inroads into finishing sorting out my room and also appearing to be good while not actually over doing it. This is a fine balance and one I have got wrong before but I hope that I manage to do maintain this at least until I am out.

A years trial, and a promise not to whisk me home the minute I am ill. There are difficulties but these are ones everyone needs to work out. I just pray I can do this while still not completely upsetting Mummy. Daddy says if it doesn't work and I ever feel completely down again that I should ring my godfather who would apparently whisk me away! Although that would mean a complete break with my mother it is nice to know that there is a final option other than the one I seem to have fixated on and it is much nicer in the long term!

I don't know if I would have the courage to split from Mummy but I sure hope so and if not right now, then with later after work with the counsellor but cross fingers that doesn't have to happen.

I really really hope she goes for this annexe idea. I am amazed with my father, it always comes down badly on him lately, she takes everything out on him but he is standing up for me on this. Kudos to him.

Out before the end of May - PLEASE!!

It's just so alien

I went to my counsellor again today, she wants to see me twice a week as she thinks a week is too long at the moment between sessions. I had to tell Mummy this which was difficult - she wanted to know why. I can't really turn around and say that I seem to have serious problems that all seem to revolve around you. I am worried that I worried her, it was difficult trying to say why I needed the extra session without telling her I was feeling suicidal and without being specific as to what my problems were. It came out extremely vague.

In response Mummy said something that puzzled me - she asked me if I seemed to have more psychological problems than I originally thought (When? I knew I had serious issues with my mother but last time I discussed them with a psychiatrist they seemed to think that Mummy might be the cause of my ME and I might to better away from her - valid but not when your fourteen and have a younger sister and frightened that they might try to take both of you into care - it still happens sometimes involving children with ME if the parents don't do what the authorities want but less now and less successfully. In fact that is why I never consented to talking to another one until last year - my younger sister is now eighteen)then how much can I push physically and mentally? (I am not supposed to push, I am meant to increase gently, and gradually increase when I can manage the original goal, all the while resting before I get tired - specifically not pushing) She then asked seeing as how I had more mental problems surely I should be able to increase what I do physically? (I really don't get this - I mean what??)

I just.......

I mean how does she pick the one question guaranteed to completely baffle me as to how she thinks and completely alien to everything I have ever told her and everything that she has seen. Does she really think it works like this? After eleven years? Just the pain these questions cause is enough to undo any good the session today did, and once again tears me apart - she really thinks this way?
I could expect this from someone who doesn't know ME, who doesn't know me, who hasn't been by my side every step of the way for over eleven years. But from my mother?

Its enough to make anyone give up, talk about solid brick wall.

Light balloon

It is odd how a week goes, how you find yourself looking back. I have got my motivation back, I now want to do things. I still don't really have the energy to do them but at least I have that drive. Without it everything turns grey and stutlifies, there can be no moving on as its a struggle to put one foot in front of the other let alone think that once you have done that you have to do it again.

It is a relief to find something else to think about, to distract myself with so I don't obsess over my mother. If I can imagine myself as a light balloon that can ride the currents of the wind that is her moods then I can survive. Most importantly I can keep her happy. If I try to fight those winds I end up popping and she ends up angry.

Its this dependancy thing, I rely on her for everything when I am ill. It is also her overwhelming need for control, she hates it when I am ill because she can't control it and when I am feeling better she hates that because I try and retake at least some control of my life. It seems so petty sometimes when I think about it, but the whole curfuffle over regaining just little things, like who decideds when I wake up and who does it, sometimes takes days. I have to be very careful when she starts taking them over, but it is often when I am feeling so bad that I don't have the energy to do anything about it.

Luckily once I get to a certain point of being better I am able to phrase things better and keeping her happy gets easier. Anything that helps with that is a bonus.

A tentative sort of hope

It's strange isn't it the things we think. The pattern of our thoughts ebbing and flowing. Sometimes one in particular gets stuck, or not stuck but one where when we stop it gets put on pause and so it gets bigger, continues along the line when we resume. Others you can think the same thing again and again, or it diminishes the more you think it. Getting to the point of being able to press the pause button on those particular thoughts is hard and changes each time, and the resume button seems to have triggers everywhere.

I saw my counsellor this week, I haven't seen her for a while as first it was the holidays and then I wasn't able to get there as I wasn't well enough. It has helped a lot though she wants to see me twice a week. That's scary at the moment, just the thought of having to tell my parents that my counsellor is worried about me enough that see thinks a week between sessions is too much is nerve wracking.

But it helps, she has managed to pull me up from the headlong dive I seemed to have launched into and while I am still vulnerable it would be good to have that support.
Having that rebalance in thinking has helped my health as well which of course helps mentally and round the circle goes. This time I hope to last and get well enough that this time I can move out, remove myself from the immediate control and vicinity of my mother in order to gain a more stable footing for myself and in myself.

I have a tentative sort of hope again and I am praying that this can last long enough to remove myself from what I know will trigger what happened again, staying in this situation is not healthy and increasingly is becoming more and more dangerous.

Warmth

Human touch - I miss it and crave it. A hand on my back, a hug, a leg against my side, something that is connected to someone else, that radiates that heat and comfort. A friend that cares, that I am comfortable enough with, that I can relax with, that turns a touch into so much more.

Over ten months....

It makes me feel starved.

Scared

I'm scared. Scared bloody silly that this will go on and on and on. I'm scared. I want someone to hug me and say its going to be okay. I want someone to be there every step of the way for me. Someone I can cry with, laugh with.

I feel sick if I am out of bed too long, sitting in an armchair makes me feel so ill after a while that all I want to do is curl up into a ball and fall unconscious. The thought of doing that though is just to much effort. My heart keeps fluttering and racing, my chest feels as if a lead anvil is on top and each time I do anything, even brush my teeth I just feel myself draining away. And I am scared that this is going to be my life, I am scared that is downhill from here, that I am going to end up bed bound for years, that each time I have a dip it will take longer to recover and that each time I recover it will be to a lesser degree. I am petrified that as the years go on I will find myself still at this point, stuck here while everyone else goes on. I am petrified and have discovered I am coward. People are much worse than I am all over the world but here am I complaining. I just don't want to do it anymore. I would rather have something I could fight, something that could either be cured or couldn't be. I feel over dramatic and rather ridiculous in thinking that I would rather have cancer - something more tangible, something with limits, something with a bit more certainty.

I am scared and I just want it all to go away.

I want.......never gets

Is there anything more painful striving for a parents recognition, for acknowledgement of your achievements, for love of a parent to also be the love of oneself?
To have her say I am proud. To have her say that she likes something about me. To have her initiate a hug. To have her buy a present based on something that I have said rather than a wish list requested. To have her focus on me rather than her fears. To have her be the hero rather than the bogie monster.
I want to hear her footsteps on the stairs and smile, not have my brain race and heart sink in fear - what does she want now?
I want to enjoy being with her, not for her to be the biggest stress factor in my life, the only barrior.
I want her to stop fighting what she thinks is the illness and support me.
I want her to stop pushing me.
I want her to stop driving me towards the cliff edge at knife point, each slash numbing me further.
I want to want to live, not to die because the plank ahead runs out and the only thing behind is her.
I want.......never gets - isn't that the saying?

I still love her though

Every time I have a talk with my mother it just confirms it even more. She doesn't see. She doesn't see me and that tears at me and rips me to shreds inside. It confirms my isolation, my dependence and the fact I am trapped. Trapped in this house, with her and to life. With no power, no privacy and nothing that's mine that cannot be interfered with by her.

I no longer mind what it would do to her if I killed myself, its the impact on my sisters that still matters and I wish to god it didn't. We no longer talk she and I, she breezes in, tells me what she wants and then off she goes. I just cry on the inside, curse in my brain and try and ask her about her day. Again its the outward show of things that is so crucial to her and yet so difficult for me to do. I try for her sake to make life easier but its killing me inside and makes the dips linger on. It burns me that after eleven years she can't see what is difficult for me and what is really important, that each time I have explained, she doesn't listen, if she does she doesn't remember, if she does she doesn't see beyond or the expanded motion.

Oh she is a devoted mother to a sick child, she loves me deeply and bends over backwards to help. Except she doesn't, she has become a thing that makes me more sick, something to dread, a hindrance instead of a help. All she see is the ME not me, me she cannot see, and increasingly does not like.

Sometimes it hurts

When I got depressed around my birthday this year I just seemed to sink, I didn't much care about anything and when I started to think about harming myself that was the jolt. I didn't know where these thoughts had come from, I didn't actually want to die but everywhere I went it seemed I saw things that I could use to kill myself. It was strange and extremely scary, how could I be thinking about, dreaming about doing something that I really didn't want to do? I thought about it increasingly in fact I got so scared of myself. That puzzled me the most - how could I be scared of myself, of what I might do, I would have said that I had control over myself. This was something that you choose to do and I didn't and yet I was still scared that I would end up doing it. One of the main things that helped me through was the thought that no matter what I was going through, if I died my family would go through worse and why, when I couldn't stand it should I put that on more than one person. I think if I didn't have a family though I might have done.

Now I know that if I didn't have a family, I would do it. In fact this frustrates me, as you see, months later, a stint in hospital, months of weekly counselling I now do want to kill myself. I am not scared by the thought anymore, its no longer a mysterious horrendous thought appearing from a side of me I had never met before and didn't want to know, its a realisation that I am trapped. I now want to and can't and that more than anything makes me want to even more. And the scary part - my family's feelings are starting to matter less and less.

That moment

That moment; when all has been set up, but before the main course begins, the anticipation, the eagerness builds.
The rise of goose bumps, a wiggle to test the limits of arms bound at the wrist, ankles clasped by the firm hand of leather separated by iron, thighs kept at the exact distance apart.
Blindfold and bit gag creating sightless eyes and muffled sighs that will soon grow to groans and cries.
Tightened nipples cushioned and caressed by soft cotton down contrasted by the firm press of knee to floor alleviated only by the plump of a pillow.
He cruelly extends that moment of waiting, all focus is on him, his presence behind like heat from a furnace; as he surveys his handiwork and devours the sight.
The manifestations of his control, the growing connection as the moment turns electric. Your whole presence yearns for him to do something, nothing, anything, to prolong that time, to end that time, that endless time.
Then he does.
He snaps the tension; the almost living presence between you now.
He gently, ever so gently, strokes his hand from the side of your waist, past the curve of your restrained arm, down into the dip of you back and then over the crest of you bare bottom.
His fingers casually grazing the two places that call out for attention one so puckered the other pulsing wetter at his tune.
All this he knows, a calculated play on his part.
Thus the moment is broken, ended and the rest begins.......

His Hand

The fires' flickers blur and haze, as the room fills ever more with the smell of woodsmoke, cigar and musky male.
Voices mummer as if from a distance, like hearing a conversation underwater or from another room.
You float through the present, unaware of time. No thoughts are present just peaceful daze.
His hand stroking your hair, tangling its' fingers through the strands, lightly pulling, then soothing. Travelling to your neck and shoulders, moulding, fluttering, digging, massaging down the back.
Leaning into the sensation content with anything his hand will give you, you lean into its warmth. The occasional hard pull, sharp dig, a light tickle as his hand follows an absentminded path.
You know you could spend hours just kneeling here, leaning against his knee or chair with that hand playing as it will.
Fully in the moment and yet out of the present time strand.
There, but absent to all except the heavenly warmth of him.

Fairground Fantasy Writing

The sights and sounds of the fairground usually set my sights racing.
The colour, the noise, the people and that unique smell that shoves you straight into long ago childhood memories. Screams, jingles and bells all around, and all I can think of, is the man who is standing so close to me, controlling me in so many different ways.
My sight is on the approaching crowd but my sense of smell ignores the candyfloss and freshly baked donuts, and focuses on the unique smell of leather, smoke, and male, my male, that is surrounding me.
My sense of touch is focused on the feel of the cold breeze, every time I take a step it brushes past my ever increasing wet thighs. Due to a pussy pelmet skirt and an order to abstain from panties, my hot and swollen labia is oh so vulnerable. To the gusts that arrive every time my leg takes a stride forward and pushes open the protective covering of the loaned trench coat.
Left to my own devices I would have shortened my step to avoid having to part its long lengths but the hot hand at the small of my back keeps me at a pace, just enough to tease, but not enough to properly flash goers by.
My thoughts are filled with trying to keep the plug, 'kindly' lubed up for me earlier and fed in anally, from sliding out.
Fighting with that is the sensation that, due to a heavy sweater and no bra, each step also moves the nipple clamps, pushes and wiggles them, creating flashes of pain amongst the ever present ache that swirl downwards to clench my stomach and increase the wetness that the breeze is having so much fun with.
Mostly though, my mind and senses are on him, my Master, the one who has created this scenario, is leading me through it, who is my magnetic north for all my thoughts, feelings, and who directs my pain and my pleasure.
With my hands bound at the small of my back, hidden by his draped coat, I cannot help but rely on him to support me. I have to trust him and so I breath through all the sensations and reach for him as he taught me. Leaning against him as he guides me through.
Trusting in me that I will succeed, comply and above all, submit.

Optimism

A new start has begun I hope.

On Saturday I came home having been in a hospital for three weeks. It was the most wonderful, peaceful place where I had constant care, help and counseling. I was able to go to church, talk to a chaplin, have some intense sessions with a counselor and got some really helpful advice from some physios.

Life is no longer looking bleak, I have a way to cope, an aim, a goal and remergence of the core of who I am.

That isn't saying that there aren't moments when it is a struggle but I feel much more in control and supported than I have been.

The hospital has shown me a way to live with ME and trying to improve my quality of life not just my health. It is also helping me develop tools in order to become an adult living with a disability rather than a child dependant on others.

This has been an eye opener and it is still taking time to get used to it. It has certainly shaken things up at home and is taking a little longer in that respect.

It was a bit claustraphobic and lonely to suddenly come home but I think I am overcoming that and taking steps to avoid sinking back into depression.

My life is a little more regimented and I have lots of proper rests, which has enabled me to be able to do a lot more. However I haven't suddenly become better overnight and the tasks I am doing are small and only for a short amount of time.

A big thing is that everyone has agreed I need to add some colour to my life and despite however tired it might make me feel I need to have a social life. I will be trying to go to the Saturday munch but although I am excited I am also nervous. I haven't been to one since Feburary, nor have I been about on Fetlife. Many people have moved on to other places and I feel I will be walking into mmostly a crowd of strangers.

When I went to my first munch there were only three other people - not scary at all, now it has grown and the amount there will be much larger and I am not sure how many people I will know. I am also dubious about my social ability - I haven't really talked with anyone for months and I haven't done anything interesting so I worry that I will be boring. Also I am nervous about how I will cope.

I won't be able to stay long, and I am not sure whether I will be in a wheelchair or not. My parents and I have been discussing getting one - walking and standing up are very tiring and so decrease the energy I want to use on other things. However a wheelchair has huge negative conatations and my parents are worried about that. For me, it is an enabling device, something that will let me do more things, get about more but I do realise that it is a scary thing as most look at it as a disabling device.

Life though is going on and right now I am happy about that and believe that once more I am living not just exsisting. All I have to do now is screw up my courage and rejoin the community that I left so abrubtly.

Life seems determined to speed by and yet each moment seems endless. Last week a different time, so much changing inside and yet bored by the monotony of what I am capable of. Guilt at lack of inclination to do anything in the times of self realisation which (un?)fortunately are few and far between.

Am I living?

Long time

I haven't posted for so long, in some ways I regret this and in other ways I don't. It was getting difficult to write, I knew people who read it and I started to care what they thought so started editing what I wanted to write - not really the point. I also lost the ability to write and think coherently for quite a long while and it is still a strain writing and I am very rarely on the computer anymore. I used to go on every day but now its more like every other week, not much has seemed important.

I have gone through some really difficult times and still am, some days it takes everything I have just get dressed, though recently it has been getting slightly easier. I am now seeing a therapist, my third session was on Tuesday. It has been surprising and I think it is helping, actually I know it is helping.

Before that though I got to my lowest point, I broke down and pleaded for help, I knew I needed it. I couldn't see a future and all I thought about was how to make it all stop and increasingly the answers became darker. My last post was in December - what a lifetime ago.

I was ill over Christmas, came down with a nasty flu bug and although it took me awhile to recover I did. However I then over did it, I tried to do too much and physically and emotionally I took a hit. I went to a club for the first time and there I met a guy! He was the first guy I have ever really clicked with, T was nice but A, wow, I just couldn't stop smiling after I met him. Or stop thinking about kissing him!

It seems all so silly now. I was so stupid, logically I knew I was as well but I also didn't think it would affect me so much. Emotionally the whole thing had a serious backlash. I underestimated the fact that I had never been through this before and the fact that my body reacts to strong emotions. Crying makes me sleep, anger makes me shake and then sleep and these are just minor flare ups not really strong first emotions accompanied by hormones!

It is sort of funny in a way I guess, the guy turned out to be a bastard but I did have my first kiss - wet and kinda awkward, which he then judged! (I was better than one of the guys he kissed in the club where we met, not much of a compliment as he had told me several days earlier that it was awful!) Half of it is that I now can't believe I was so idiotic but that life isn't it. But in order to see him I had also done to much, I had gone out five times in less than two weeks, tiring enough for anyone but the last straw for me and coupled with the emotional whammy the whole thing knocked me for six.

I haven't been right since, my brain went out of commission for quite awhile due partly to a diet I was put on to sort out my gut which managed to starve my brain - not fun and also painful. Then just endless days of struggling to get out of bed and do a bit each day, until the week of my birthday.

I turned 20, my younger sister started her A-levels, it was the birthday of my friend who died, and it was also the date of a picnic that I really wanted to go to in order to see friends. Well, I realised that I had now had ME for 11 years, I wasn't well enough to do anything for my birthday, I never managed to get an A-level, my reach for life starting with my friends death had lead here three years later and of course there was no way I was able to make that picnic. Of course it wasn't just this but everything one on top of the other just sort of dumped on top of me and I didn't have enough strength to stand against it.

Life looked endless, the future just another round of the same cycle always ending up ill at home having achieved nothing and I fell apart. I haven't picked myself up yet, I still can't do much more than read for a couple of hours or potter about for a bit without having to sleep for a bit. My sensitivity to light has increased. I can't stand to be around other people much. Having a conversation is sometimes just too hard. Noise is guaranteed to wind me up. I have no control over my emotions, I flare up in anger over the smallest thing and cry far too much. The thought of any treatment fills me with panic at the moment. Taking decisions and control is something that everyone was trying to make me do though I think they have finally got that at the moment my head space is just not conducive to that.

You see in order to make a decision about starting a new treatment and taking control of your life you have to believe that it is going to work and you have one. At the moment I don't. I do realise that's a problem and I hope that my therapy sessions will help. You see I know logically that I can get better, other people have and they have been much much worse but I can't see it anymore, I don't believe.

My mother thinks I have given up, who knows, she is probably right but I still, I just don't have it in me anymore to keep on pushing. I realise I am depressed, I am getting help. Unfortunately St. John's Wort which has helped in the past is no longer being sold due to some EU regulation and anything chemical reacts with my other pills and just isn't advisable.

So for now I live day to day, trying not to watch too much television, trying to play the piano a bit every day to try and get my brain working a bit and for the last two days I have also managed to potter down the drive, the first time in months that I have been able to do anything remotely like exercise.

And so I will continue until something changes, hoping that something will change, but between you and me - not really believing that it will.

What Might Have Been

On Thursday I met up with T. This time last year he took me on my first date, he also asked me to be his girlfriend. Unfortunately I said no as we had only met three times and although I really liked him I wanted to get to know him a bit better first. Then came Christmas and with that I became ill, I only saw him three times after that, though he kept on asking and kept on being in contact throughout the year. He finally went home to Switzerland after his exams and although there was a chance that he might go to Oxford Brookes he didn't get the grades and ended up in Wales.

Where upon every time he got drunk he texted me saying he missed me. Cute the first time but ended up being a bit heartbreaking after a while. I wanted to move on really and forget about him. He didn't really keep in contact otherwise and although we had some great chats when he was drunk he then wouldn't reply or speak to me when he was sober. Well he did it the week before last and I got fed up. He had told me that he had stopped going to uni and was in London until his flight. I told him that he had to stop texting me where upon he asked if he could see me. Seeing as I had asked if this was a possibility or not and he had told me it wasn't, this was a bit confusing but I wanted to see him for one last time really to say goodbye, and to stop the texts.

So he came down on Thursday, I was completely nervous and I think Mummy was half convinced that I was going to sleep with him - I wasn't! I managed to work myself up into a right tizzy especially on the bus but when I saw him it all stopped. He hadn't really changed at all except become a bit beefier - he is a rugby player. We went to the pub where we meet for Munches and so I felt comfortable and we then talked for two and half hours. There was one awkward moment but apart from that it was just great. He then took me out to lunch at a Thai place and then walked me to my bus. He gave me the funniest Christmas card with a seriously nice message in it.
It was so sad to say goodbye again - he is going back to Switzerland and then has army recruitment as they are conscripted over there. I doubt I will see him again.

It is sad as he is full of the things that could have been. Had I not been ill he would have been my first boyfriend, given me my first kiss and who knows he could have been the first person I slept with as well.

Unfortunately he is also kind, good looking, fun to talk to, generous and has a sense of humour. I am not over him, I suppose it will take a while. I guess also that some of the allure of him was the fact that nothing happened. He is a could have, might have, wished I had.

It was bittersweet but good closure, to hear what he was going to do and to see him one last time. I was sort of hoping that my memory had hyped him up but alas!

I wonder what might have been.

The Scarlet Pimpernel

I came across The Scarlet Pimpernel when tidying my bedroom yesterday. I have never been able to read it and yet I count it among my favourite books. Soon after I got ME I was put on Amitriptyline, I was on it for three years (recommendation is for only three months). This was not because I was depressed because at that time I wasn't it was because at that time ME was thought to be a mental illness, it also is meant to help with pain relief. I was on 50mg a day for most of it.

It made me very zombie like, I got very bad insomnia, I lost my appetite and became very bloated and gained weight and in the last year year became very depressed. It didn't really work, I was still in pain and I was on the highest dose. In the last year we tried to decrease my dose with varying degrees of success, in the end we couldn't go further than 25mg. We had been told that it wasn't addictive but I would say that it was physically addictive, my body through a tantrum every time we tried to reduce it or come off it. It masked my senses and so coming off it meant that I had to face the full reality of what I actually felt. The doctors were not particularly helpful as they wanted to keep me on it.

Eventually Mummy and I decided that I would come off it no matter what it took and I went cold turkey.
What followed was the worst two and a half weeks in my life. I didn't sleep, I was in incredible pain, I was sweating and feverish and couldn't get out of bed. There was one night where I was in the most pain I have ever been in and I never want to feel that again. It was horrible, my parents tried to get a doctor to come out and give me a painkiller shot as the Co-codamol and other painkillers I was on were not making the remote bit of difference.

He refused when he found out I had ME, so to help me my parents stayed up through the night and read in shifts The Scarlet Pimpernel to me. They got me through that night, changing my sheets, getting the pills, constantly refilling the hot water bottle and just being there with me. Whenever I doubt that my parents love me I remember that night and it completely banishes that thought. It was the worst night in my life but also the most memorable due to my parents actions.

That night also cemented my wariness of doctors from that point onwards as well. We stuck it out though I think if it had lasted much longer I think my mother might have relented but it worked and there was a huge improvement. It had though destroyed my sleep patterns and it took us two years to sort those out and I still have to be quite rigid about them. I became quite depressed in the years after as well, but after an increasing amount of suicidal thoughts I went on St. John's Wart which was very helpful.

I saw a nutritionist that summer who took me off wheat, sugar, dairy, caffeine and citrus fruit and that combined with coming off the pills made me loose a serious amount of weight. So munch so that I had to eat a certain amount of potatoes each day to try and regain it. My appetite still swings but is on a much even keel but the main thing is hat the only time I am not switched on is when I have brain fog, I am not zombie like each day. I can appreciate life and my senses are all switched on and working. And most importantly I can hug my parents in thanks for that night and many other times that they stuck by me and fought for me in the various battles that have occurred.

But I have never been able to read The Scarlet Pimpernel since because the memories of that night take over.

A very helpful answer

A couple of weeks ago I had a crisis of confidence, I wondered just what the hell I was doing. I sent someone a message

'I was having a bit of think last night and got really rather confused. Especially after having read some posts on here and just generally. I was wondering if I had got ahead of myself here - trying to run when I haven't walked yet. I mean I am a virgin so how on earth can I say I am into kinky stuff when I don't even know the vanilla. Some women have rape fantasies, it is something that turns them on but when it comes down to it and they act it out they don't like it. Maybe when it come down to it I am not actually kinky in which case I'm a fraud being on here and at the Munch's. I mean I haven't even ever kissed anyone and yet I have stood up and said that I am interested in the kinkier side of things. How do I really know, if I haven't had sex how can I really claim that I want to try rough sex when in reality I have no idea what occurs emotionally etc just in nilla sex.

The poor guy! lol But I had been thinking and driven myself into confusion by over thinking and getting totally mixed up. He sent back a very good reply which I won't post here as I don't have his permission but basically he told me that it was more the fact that I was interested in kinky sexuality not the amount of experience I had. That Munch's were the meeting of like minded people not the meeting of people who do the same stuff.

It was extremely helpful along with the other point he came up with and although I felt a little embarrassed having panicked like that I was also at the same time almost glad that I had actually come out and asked someone about it. I do have a point, at a time when I am not in a position to have a relationship of any sorts and not particularly inclined to have one either meeting people all with sex as a common interest might seem a bit odd. But then I realised that for me the Munch's are not a pick up joint, they are to meet and hopefully make friends with other open minded people and also hopefully learn more. So far this has worked and when I am there I don't feel a fraud and I hope I never will.

My dog and the memories she brings

I was thinking quite how much my dog means to me. It has just been her ninth birthday and I got her just after Christmas when I was ten. I was on six weeks bed rest and she spent the remainder of those weeks in bed right there with me. She used to curl up just by my head and we would go to sleep together and try and while away the day one way or another. At 3.30 we would move to my parents bed so I could watch Art Attack, Blue Peter, Newsround etc. It was the highlight of my day.

Most of the time I read though I played with my toys as best I could restricted to laying in bed. My sleep patterns got shot to pieces and I used to lie awake just waiting until the morning came and Mummy let my dog up.

When I then went into hospital for intensive physio to repair the damage that the doctor had done by prescribing this bed rest she was still so small and Daddy used to smuggle her in to say hello. I missed her a lot. My parents were brilliant, in the four weeks I was in hospital I only spent one night alone, they took it in turns to stay in the bed next to me (which had a jelly bean under it the entire time we were there!).

I am not quite sure how they managed it as my younger sister was a day girl and not very old herself. It was an odd time, I was in the teenage ward as the beds in the children's ward were too small and it was too noisy at night, it was completely empty except me. The hospital was far away from home and so it was difficult for both of them, I doubt they saw each other much that entire time. Daddy spent most of the time at home and my dog has a deeper bond with him than anyone else in the family except me.

It is now ten years that I have had ME, this year has sucked eggs (as the expression goes) and has had some really fun and amazing times too. I got to go to France to see the WW1 battlefields, a dream since I was six, I went with a different family and for four days I had the time of my life and I didn't have a relapse. I have managed to get to all bar one munch so far and I am now doing some Reeling (Scottish Dancing!). I have done something 'fun' every week for the last couple of weeks and it has been increasing.

I might have moaned and admittedly still do about this new treatment, I still hate it but I love what it has done for me. A few weeks ago I had more energy than I knew what to do with, I hadn't had that much for so long I had forgotten how to handle it. I slightly over did it but touch wood I am still okay. Christmas approaches with its own difficulties, both my sisters will be home and that is never an easy time with the family but it will be Christmas which tends to make it better.

If (and please God let it happen) I manage to get to Christmas without having a dip or getting a cold, it will have been my first Christmas since I first got ME that I will have got to at the same level as I felt at the end of the summer. It is so extraordinary to think this when life looked decidedly bleak at the beginning of the year.

I still have repercussions from that, I have to wear glasses more and sunglasses whenever it is bright, I can't really listen to the radio for that long, I feel car sick even when driving and I get really bad headaches most days but they are all things easily taken in stride when i think of what I am doing and how I am living at the moment. I had some problems with some new pills last week and it really brought it home how I was actually feeling now, to feel suddenly so sick and weak was sort of life affirming as it only lasted a couple of days and within three days i was at another munch!

My dog instead of sleeping next to me most of the day is begging me not to wash her after we go for long and very muddy walks. She snuggles up to me while we watch television downstairs and I can look forward to driving her somewhere exciting for a walk pretty soon as I am learning to drive and up to an hour and a half at a time now.

So yeah at a time when I normally get a bit depressed as yet another year has passed and I still have ME, I am happy and content, I have come to terms with what I have (at the moment anyway!) and the life I lead now (long may it last) is fulfilling and I am even straining to do more. I admit to having an aversion to making long term plans now but next week for me is a good week with lots of things to do and people to see and after that we shall see, I'll take it as it comes.