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!
Sunday, 5 August 2012
Tuesday, 24 January 2012
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 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!!
Monday, 23 January 2012
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.
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.
Sunday, 22 January 2012
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.
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.
Saturday, 21 January 2012
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.
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.
Friday, 20 January 2012
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.
Over ten months....
It makes me feel starved.
Thursday, 19 January 2012
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 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.
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