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.