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.