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.

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A bit of a set back.

It’s been a couple of weeks since my last post where I wrote that surgery was imminent. Unfortunately that hasn’t been the case and there has been a slight set back. I had my psych evaluation with a very nice psychologist, who although didn’t know an awful lot about headache conditions, he was willing to learn and was understanding. So he can go on my list of nice psychologists/doctors. The evaluation itself went okay and he said he is not a gatekeeper as to whether or not I get surgery, that that is mine and my doctors decision, but he just wants to make sure I have appropriate care throughout the process. He wanted to go away have a think and read some reports from my previous psychologists before seeing me again in two weeks time.

Two weeks time was Tuesday so I trekked up to London to see the psych and my neurologist, I saw them briefly and then they went to have a meeting with the head of the psychology department to see what support they can offer me. The result of that was they can offer me one session with the psychologist before surgery and four after surgery, in the hope that once four sessions are up the service for the surgery I am having will be completely sorted out and they will have their own psychologist specially for this. However they said before I have surgery they want me to see their psychiatrist, and this is a 2-3 month wait to see him; and there’s the set back. I don’t really understand why I have to see a psychiatrist, my thinking about it would be their concerns that I could be a risk due to my history of self harm and suicidal tendencies. I would be lying if I didn’t say I was annoyed about this slight set back. I feel that I was kind of led to believe surgery was much sooner than the current time schedule I am now on with having to wait to see this psychiatrist.

This week has not been good, I officially resigned from work, I had my hours cut because it was just triggering insane pain levels constantly. But that wasn’t enough and they couldn’t cut them anymore so I felt the right thing to do was to resign, working made the pain unbearably bad all the time and I just couldn’t continue to do it anymore. Naturally I am very upset, I cried most of the day which of course did not help my pain levels. It is hard I just feel like everything I ever try to do to move forward with my life gets crushed cause of the pain. I never manage to finish anything and it makes me feel like a complete failure. I am 22 years old, and there doesn’t seem to be anything I can do because of the pain, so what the hell am I meant to do with my life. Everyone my age is either studying or has a job and a life, then there’s me, next to no qualifications, unable to cope with studying, unable to cope with a job, so seriously what am I meant to do. I wish someone would just help me figure it all out and come up with a suggestion because I am really lost and alone.

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.

 

Trapped with no escape button.

I have been absent again; sorry for that but at the minute I am having a hard time to do anything or keep up with anything. Between my headache and the issues I have been having with my heart and not knowing what on earth I am doing with my life, I am finding it difficult to keep my head above the water, or in other terms I am slipping back into depression, yet again. Writing posts at the minute is making me emotional which I am trying to avoid, I know that often it helps int the long run but at the minute every time I try to write a blog post I end up in tears, thus making the pain worse.

I feel like every dream I have ever had has been ripped away because of my illness, and it is so difficult for me to watch everyone around me have lives, friends, education, jobs and I have none of that. My life is pain, I have no proper friends my own age, I can’t survive education, I can’t get a full time job, I can’t support myself and I don’t know if I ever will be able to. All of that just in turn makes me depressed, it makes me angry and jealous at life and everyone around me. I know that no ones life is perfect but the majority of people don’t have illness holding them back from anything and everything they want to do. All my dreams have been destroyed and I don’t know what I am doing or where I am going with my life, I feel like I have no life because well I don’t really, I’m 21 and I have pretty much zero friends my own age, I spend half my time in bed either in pain or depressed or both, and I have no direction with no indication that things will ever improve for me. I feel like I am never going to be independent, because with my pain the way it is I can’t even hope to hold down a full time job, it would be impossible, therefore I am stuck living off my parents for the foreseeable future.

I don’t think words can fully describe how stuck and trapped my illness makes me feel, how angry I am at everything, and how difficult it is to watch everyone around you move on when you are left behind and trapped in a body of pain with no escape button.

Every time.

Every time I admit I’m doing well something happens and I end up going back downhill. Still in this flare up and it’s awful, I feel awful, I feel miserable, depressed, angry, stressed and anxious. Yes I m well aware that’s a lot of negative emotions to be feeling. I don’t know what to do and I have no one to talk to. I am unable to do any college work, my end of year graded exam for psychology is in less than a months time now, I have so much revision to do but I can’t do any of it because of the pain, so I can’t see myself passing the exam. I have my final graded law assignment due in 2 weeks, I am yet to start it because of the pain and I am feeling stressed about it. I feel like giving up with it all at the minute.

I don’t know what to do, the problem is the pain and that can’t be fixed or helped, who knows how long I will be in flare up, the last one lasted a month. I don’t know how to do everything I need to do when I’m in so much pain. I can’t even keep up with my pain management techniques, I don’t know how to do it all.

At the minute I just feel like crying, I have spent the day on the sofa watching tv with my dog, that’s exactly what I did yesterday as well, oh and the day before also. My depression is creeping back in and I have no one to talk to about it all and I just don’t know what to do.

Feeling alone, helpless and miserable.

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.