So I’m in Dubai for New Year. Was hoping to see all my friends tomorrow night for a party for New Year. But no one was willing to have people over their house. So they have all decided they are going to have a party in the desert instead. Which means I won’t be able to go. I can’t be stuck in the desert with no way to get home if I need to which would probably end up being the case. I could take my car and drive there and back but I can’t risk getting my car stuck in the desert and not having anyone there to tow me out. All my friends are big drinkers they want to go out and get absolutely smashed and party into the wee small hours. Me? I’m happy not drinking at all, staying for 2 hours or so just to see people and then go home. Which I know is weird, but when I use to go out with all my friends back when I still lived in Dubai I felt really disconnected from them all. They’re all normal and want to do normal teenagery things like go out and get drunk. I’m not really into all that, maybe I would be if I wasn’t sick but the way I am now I just can’t do it, I don’t enjoy drinking and like to be tucked up in bed by 10/11pm sleeping, the only break I get from the pain. Though it’s safe to say I’m a little disappointed I was looking forward to seeing everyone that I haven’t seen since April, if it was at someones house instead I would have happily gone along for a bit but I don’t feel comfortable going into the desert and having to stay all night with no way of getting home when I want to.
But to be honest I hate New Years anyway, it’s such a pointless holiday and I really don’t enjoy it at all. Last year I forced myself to stay till 12 to see the new year in which was hard because it got to 10pm and I couldn’t stand how disconnected I was feeling so I then left. So maybe it’s better that I’m not going out , at least then I can avoid the horrible disconnected feeling I always get. My sister is going to a party but my parents aren’t so I think I will just go out for a meal with them, then come home and sleep through the new year.
On another note tomorrow it’s going to be 2 weeks till my headaches 4 year anniversary, safe to say I’m not feeling so great about it.
Haven’t written in a while, I don’t really know why, just haven’t.
The pain hasn’t been great recently, most nights it gets really bad. Taekwondo doesn’t help it, I go to taekwondo quite a lot sometimes 6 nights a week if I can manage it, I don’t go if the pain is too bad or I leave early if it gets bad during. But mostly it’s okay, allows me to escape for a while, when I’m doing taekwondo nothing else matters, gives me a break from my depressed mind the pain is still there but it’s kind of on the back burner and I’m not thinking about it. But usually when I get home the pain gets bad. But that doesn’t stop me going. I refuse to have taekwondo taken away from me like so many other things. Hopefully will be doing my 2nd Dan black belt grading in October. Got a lot to do for it, got a course to go to in February and to officiate some competitions shortly after. My new years resolution is to start studying my theory. A lot of taekwondo is not only the actual physical side but also learning a load of Korean words, and cause I’m a black belt there is a lot to learn. So as of January I’m going to start and re learn it all, which will be hard for me because I find studying quite hard with the pain.
Also been looking at starting studying again, my psychologist thinks it will be good for me, I would have to do it through Open University as I have no A levels and cause of my health I’m unable to go to actual proper uni like someone normal of my age would. Been looking at the courses, I want to go into the psychology field and help people like me with chronic illness deal with living like this a pain psychologist would be perfect. But I don’t want to commit to a full 4 year open university course at the minute. I’ve been out of education for over a year now which is a long time so I need to ease myself into it. Have found a course which is a introduction to counselling a 12 week course which would sort of be perfect, so I need to talk to my mum about that in the new year.
My Dad and sister arrived on Friday for Christmas which is nice. And today my grandparents on my Mums side arrived and also my Dads dad. So our house is kind of full at the minute. They are all here for 3 nights which means me and my sister are sleeping on the floor. So Christmas should be quite nice with everyone here as long as my Granddad doesn’t get upset that it might be his last time to see us, which happens every time we see him, which isn’t a lot as he lives in north Wales. Then on Sunday me my Mum Dad and sister are flying back to Dubai for New Year out there. Some of my friends will be there so it will be quite nice to see them again.
And well me, I’m not doing so good, at the minute I’m distracted with everything going on but I just feel miserable and in pain as per usual and it’s hard to keep a smile on my face for my family. It’s hard to enjoy things when you’re in so much pain all the time. And now it’s less than a month till my headaches 4 year anniversary which always makes things worse so I usually struggle this time of year. I’m not seeing my psychologist till then new year when I get back from Dubai which is quite a length of time not to see anyone. But at least when I’m in Dubai I will get to see my old school counsellor and also my old psychologist wants to see me also, so at least I will have someone to talk to a bit.
So I have a psychologist who is very good, she specialises in treating those with chronic pain. I really like her she’s understanding and talking to her helps a lot. I also have a mental health care coordinator on the NHS, who comes round to see me every couple of weeks. And I’ve been doing this emotional coping skills group course through the NHS for the past 11 weeks and it’s the last session next Friday. It hasn’t really helped all that much to be honest.
But I was talking with my care coordinator on Tuesday when she came round about what I was going to do after the group course finishes. She said she would speak to one of the psychologists at the place she comes from about me and what to do next. The psychologist happens to be one of the people that has been helping run the course I’ve been on so I’ve met him a few times and he seems alright.
When I saw my care coordinator on Friday at the group course (she was sitting in on it this week), she spoke to me and said the psychologist she spoke to suggested having a meeting with my pain psychologist and them both about what to do next. I don’t really think they know what to do with me anymore or how to help me. My care coordinator has even said that she doesn’t know what to do now.
It makes me feel quite depressed that mental health professionals don’t even know what to do with me or how to help anymore. I guess I really am helpless. No doctors can help me anymore and seemingly mental health professionals don’t know what to do anymore either.
There is no end in sight, I’m always going to be in pain so I’m always going to be depressed.
I’m not doing so good. I feel so alone, other than my family and mental health professionals who it’s their job to be there for me, I don”t really have anyone anymore. I did have friends, but it seems like they are starting to drift away. Only one of them talks to me anymore, but I feel like she’s loosing interest in talking to me. My ‘former’ best friend doesn’t talk to me anymore either, I have to talk to her first and when I do she stops replying half way through a conversation. Which makes me feel brilliant, feel like she doesn’t give a shit about me anymore, I’ve told her I’m not doing good, she knows I recently had another struggle with self harm, she knows how badly my neurologist appointment went. Yet still she doesn’t talk to me. I feel like everyone always leaves me, because well that’s the case. They get fed up of being there for the girl in pain and depressed all the time, it’s happened before and it’s happening again. And I feel so alone. The one person who has always been there for me, the only person ever to help me feel better about things isn’t replying to my emails. I know she’s busy but I’m having a hard time and could really do with talking to her.
I feel so helpless and miserable. There’s nothing more anyone can do to help me anymore. I’m effectively stuck because of this fucking pain that never goes and torments me every waking fucking minute. I just don’t know what to do anymore. In a months time it will be my headaches 4 year anniversary which is making me feel even worse.
Saw my care coordinator today. She thinks the reason I feel so stuck is because I’m living in two different countries, and can’t commit myself to one or make a life for myself in either. She thinks I should move back to Dubai. But the reason I moved back was because of my health and my mental health and that effectively hasn’t changed or gotten any better so I don’t really see how I can move back just yet, it wouldn’t be safe.
So my parents had agreed that I could get surgery done privately, they thought they would be able to get the money together, we found out how much it was going to cost and it was a little more than we had expected but they still said it was fine. And it would be fine, but this isn’t the type of surgery that is just an initial surgery and everything is fine. With ONS surgery you may need more than one, if the wires migrate and you need revision surgery, reprogramming, a new battery, going private means you have to pay for that as well if it happens. It’s an ongoing thing that you have to maintain. So it’s not going to cost the initial amount in total it could end up being double that. And that we can’t afford, if it was just the initial surgery it would be fine but it’s not just that and that’s the problem. This is the reason I didn’t want to go private in the first place, and I thought that they understood what was involved. Turns out they only just figured that out, even though I had told them.
They haven’t said no and my mum said she would do some more research and get in contact with a friend who works in the NHS who might be able to help out with some information. But it’s looking very likely this isn’t going to happen.
But I got my hopes up, thinking that maybe just maybe soon I would be dealing with a lot less pain that I would be able to cope with better, and that maybe I would be able to get on with my life, to be able to finally start studying again to maybe even go to uni. I knew I shouldn’t get my hopes up whenever I do they just come crashing back down.
I wish they had just said no in the first place, I know they are trying to help and that’s all they want to do is help me and keep me around. But it would just have been better for me if they had said they were unable to do this. At least then I wouldn’t have got my hopes up for nothing, to have them cruelly ripped away.