Heartbroken.

I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.

Victimised in London, first time feeling unsafe.

I had a bit of a horrible experience in London last Friday. I was sat on the tube on the way back to Waterloo to get the train home and a couple of seat down from me were two black guys who looked like some sort of construction workers as they were carrying hard hats. They were a bit odd on the tube but I didn’t really think anything of it, I got off at Waterloo and they got off behind me and started shouting at me ‘excuse me lesbian’ several times and really loudly. I ignored them despite knowing they were talking to me and carried on walking fast so I could escape them. I got on the escalator to go up to the main station and looked behind me and they were on the escalator next to me waving and blowing kisses and saying inappropriate comments. I felt quite threatened almost like I was about to be a victim of some sort of hate crime, so I quickly power walked away and got on the first train home not wanting to hang around.

Firstly shouting at someone saying lesbian is most definitely not appropriate behaviour whether they are gay or not. And it just so happens that I’m not even gay so his assumption was completely wrong, probably because I have a short hair cut. Which is ridiculous really, just because someone has short hair does not automatically mean they’re gay, and likewise just because someone has long hair does not mean they’re definitely straight. And whether I am gay of not it is not okay to shout ‘excuse me lesbian’ to someone anywhere or anytime, it makes you feel very victimised. That was the first time I have ever felt unsafe in London and I was surrounded by loads of people who didn’t even bat an eyelid as to what was happening.

Anyway it’s valentines day, my mum bought me flowers (bless her) because no one else will. I haven’t had much luck with men so I’ve kind of given up, no one seems to want to ever be with me once they see just how sick I can get. Who wants to be with someone who can’t work or study so doesn’t do an awful lot, who’s life is dictated by the pain in her head, who has depression and anxiety so bad they avoid any and all social interactions with unknown people and people of their own age, for fear that nobody will understand. Yeah I’m great dating material, I’m sure their mother would be thrilled if they brought someone like me home, not. Maybe I’m just destined to be alone. The thing is I’m actually a really nice person but people can’t seem to see past my illness and how it affects me. I really hope there is someone out there who one day might see past my illness, but I’m not going to hold my breath about it.

Side note: I’m a bit stressed about tomorrow, so much so I had a bit of a panic dream last night that I got all the way to London tomorrow and realised I had forgotten my stimulator remote, rendering the majority of my appointment with my Neuro useless. I then woke up thinking it was Thursday and I had slept through Wednesday and completely missed my appointment. Thankfully I realised it was Tuesday after checking my phone and I have put my remote in my bag already, so to not forget it tomorrow. Will let you know how the appointment goes, I’m hoping I get some answers as to why I’m in so much extra pain and what can be done about it. 

 

My fear of failure.

I’ve been seeing my new psychologist in London every week for the past 4 weeks, to start with I wasn’t too sure about it, but it’s been going okay and I’m getting use to him and his approach. It’s hard going in the appointment but I seem to have actually progressed with this psychodynamic approach as each week has gone on I have got better at identifying my emotions and the reasons behind them and my anxiety. It’s also been getting easier to talk to him, rather than lots of silence.

Last week he asked me to talk about something he read in one of my clinic letters from my neurologist. It was to do with studying and going to uni, so I told him about how I went back to college to try and obtain some qualifications because I desperately wanted to go to uni. My main reason for wanting to go to uni was because I just wanted to be normal, and secondly that I wanted to be a psychologist. However I was unable to complete the course because of my pain and ended up dropping out of college for a second time.
He then went on to ask if I would agree to some homework, he wanted to me to go home and look at some volunteering opportunities in my local area. He suggested things like volunteering for the Samaritans. He asked if I would be willing to do something like that, I said I am more than open to looking, however it’s the actual going forward with it that would be the problem. Don’t get me wrong I would love to do something productive like volunteering however in actual practice I worry that it wouldn’t work out. I’m scared of failure, actually I’m terrified. Everything I have ever started in the past 7 years I have not completed, I didn’t finish school, then college, then I had a job/apprenticeship and I didn’t finish that either, all because of the pain getting too bad that it becomes impossible. I feel like a complete failure and I don’t want to enhance that feeling by yet again having to drop out of something because the pain gets too bad. But I’m stuck in this cycle of never doing anything for fear of pain and failure, meaning I never move forward and enhancing the feeling that my life is stuck. Today I’ve had a look at some volunteering near me and I’ve found a couple of things that I’d possibly be interested in. Both of which I’ve actually looked into before however I’ve never gone forward with either for fear of pain and failure.  I’d like to do either of them but I’m just terrified of how I would feel if I started and then had to give it up because of the pain.

He also gave me a second piece of homework, which was to get out my old college papers which I obtained all distinctions on. As often I get into the belief that I’m not clever and I have never achieved anything. The belief I have that I’m not clever is not true (hence all the distinctions at college), but I guess I try to believe it because I actually am really clever but I never get to use my intelligence and I’ve never managed to achieve anything with how smart I actually am because of my pain. So I guess thinking that I’m not clever is almost like protection from the feelings I get in knowing that I actually am clever but I feel it will never amount to anything worthwhile and meaningful. That probably doesn’t make a lot of sense, but somehow it makes sense to me. Anyway I got them out and had a read through them and I was reminded about how easy and straight forward I found the assignments. I was also reminded about how I felt when I realised I was going to have to drop out of college because the pain was too bad. I was distraught despite knowing yet again in my life that education was not the right thing for me and my headache and that in my eyes I had failed at something again.

This homework task was okay, I kind of figured out the reason behind my thinking that I’m not clever when actually deep down I know I am. It also revealed how much I’d like to do something productive like volunteering, though I don’t know if I will go through with it because of my fear of failure due to pain.

I’m in London twice this week, Wednesday to finally see my neurologist and hopefully get some answers on my extra pain. And Friday to see my psychologist again, which is my final session out of an initial block of 4 sessions, however I would like to continue seeing him as it seems to be being helpful, so hopefully he can offer me some more sessions.

 

Was it a big mistake?

I’ve realised recently how many unresolved feelings I have about my illness, and how none of them have really changed over the years. It doesn’t matter how much I try to escape my pain, how much mindfulness I do, how much I try to accept this condition or even all the many many treatments I’ve had, my never ending headache still remains as strong as ever.

I’m 2 and a half months post surgery, the tweaking they did a few weeks ago (when they finally realised I was being severely overstimulated and it had caused allodynia hence the severe nerve pain at the back of my head where I could feel the stimulation) has relieved the allodynia but I am still experiencing headache pain at the back of my head which is not normal for me it feels like my normal headache has doubled in size. I haven’t really told anyone about it as I don’t want to let everyone down with the fact I’m still in a lot of pain. At the minute I’m in Dubai with all my family spending Christmas and New Year here as my Dad lives here, right now I’m led in bed in agony. The pain is horrific and has been since last night.

I know I should be positive about the outcome of surgery and I know it’s still really early but I have a gut feeling that the surgery I had is not going to help me. Which leaves me to feel completely and utterly upset and helpless that my last ditch attempt at a life with lower pain is not going to be successful. That I’m going to have to live with extreme pain for the rest of my life that prevents me from doing anything worthwhile, from being independent, from having some sort of resemblance of a normal life.

A lot of my feelings have come bubbling to the surface recently, feelings I buried deep within quite some time ago. The anger I feel towards life, the depression that comes with chronic pain, the complete and utter loneliness that I experience and the distraught I feel towards the loss of my normal life nearly 7 years ago now.

I’m trying hard to keep everything together, I mean it’s Christmas for fucks sake, I should be happy, right?! But at the minute I’m a mess, it’s also quickly approaching the 14th January, a date that messes with my head, the date it all started 7 years ago. Yes you say it’s just a date it shouldn’t effect me, but I feel like I lost so much 7 years ago on that date and it sends me down a deep dark spiral every god damn year.

I wish one day I could write a post to tell you all that I’m miraculously better or even just that surgery has reduced my pain; I’d settle for that. But I don’t think that will ever be possible. I know my headache better than anyone and I feel like it’s here to stay. I feel like it doesn’t matter what I try my headache will always win and no one can do anything about that.

It’s been a while, yet again.

I haven’t posted in a while, for a number of reasons, I had been doing okay and I decided I needed to take a break from blogging and focus on solely being okay. I did have a boyfriend but that ended unfortunately, I had, well have a job but the pain has been difficult. So much so that I have recently had to take quite a while off to try and recover from the horrific pain levels that it gives me. So is safe to say that it hasn’t been going great. Going to work with horrific pain levels is just awful, I sit at my desk feeling like my head is about to cave in, that my brain is being crushed or I am being stabbed in the head, and I just want the world swallow me up whole.

On a positive yet scary note I’m getting surgery soon, I don’t have a date yet but I have a psych evaluation and an appointment with the neurosurgeon next week and beyond that it will only be a matter of weeks till my surgery date; this is the ONS surgery I’ve been waiting 3 years for. I hope with all my heart that it works, it’s not a cure but it could be the next best thing. Obviously I am quite scared it won’t help and give me the relief it is meant to and that is playing on my mind a bit. I am scared of it working and what I will do my life if I am in less pain, and I am scared of it not working and me finding I can’t really do the job path I am currently in with this level of pain, which is proving to be quite difficult at the minute. What will I do then?

I’ve been quite lonely recently, it’s hard when you don’t really have any friends to talk to. Going through life with no friends is really quite difficult, I don’t know what I do wrong I don’t know why I find it so hard. But having no one is beyond horrible all I just want is one person to stick by me that’s my age and wants to be my friend. But there isn’t anyone and it tears me up inside and makes me feel like I’m just not worth being friends with, that no one likes me enough to stick by me, that maybe I’m just a horrible person. I just don’t have anyone, of course I have my family but that is really not the same. Is it too much to ask for to just have someone?!

I don’t want to give a time frame of when I will post next because that might not be the case, and I am sorry if I haven’t replied to comments or emails recently as I just haven’t checked them.I hope to post again soon and keep you updated with the surgery process.

So for now I will say bye, I hope to write again soon and I wish you all a low pain day.

 

Scared, but I want to get better.

So I had a session with my psychologist today which was good, she’s really nice and helpful and I always feel a bit better after talking to her for a bit. I haven’t been doing very well recently, I had said I didn’t want help and wanted to let my misery consume me because I have been in such a dark deep hole again. But I feel now like I want to get better, I don’t want to feel so miserable I don’t want to be constantly fighting the urge to kill myself, because who wants that really. I know that I have been in such dark places in the past and recently where it was safe and comfortable to sit with my misery and not want to try and get better because that was too scary. Acceptance was too scary, to me acceptance sounded and still does sound and feel like accepting the fact that I will always be in pain means being in pain all the time is okay. I know that that’s not really what it means but to me that’s what it feels like. But I want to try, I want to feel better, I may always be in pain but I want to be able to move on with my life instead of feeling stuck. It’s all very scary.

I was talking about my homework with my psychologist today and it was all about values. I wrote in the work section that I wanted to be able to help people in the way that people have helped me. And in the personal growth section I had written that I wanted to continue learning about medical stuff, as I put it. As I do a lot of research and reading on medical ‘stuff’. What was interesting is that my psychologist then said had I ever thought about becoming a doctor or a nurse, well since getting sick it’s kind of been a secret dream of mine to become a doctor. As a patient who knows what a good doctor is like and has experienced more than my fair share of bad doctors who wouldn’t listen and didn’t understand or want to help, I think that I would make a good doctor. But like I said that’s a dream. Personally I don’t think I’m clever enough to become a doctor, maybe because I’m too scared to try encase I fail. We had previously spoken about me wanting to pursue psychology as a career path and helping people that way, because I never even thought it was possible for me to help people in any other way like for example becoming a doctor or a nurse. But now I think about it more I suppose that maybe it’s something I want to try, though saying that it would take me with my health conditions and pain a lot longer than the standard person. And I would have to first do some more A levels as I only have one and that’s in Physical Education and I only got a C, because I messed up my final A2 exam.

The problem is I’m so scared of failure, I’m so scared of not being able to do something because my pain gets in the way that I just don’t try anymore so effectively I’m stuck because I don’t feel like I can do anything and that in turn contributes to my depression making it worse.

I may always be in pain but I want to feel better, I want to be able to accept and move on with my life.