It’s been nearly 4 months since I had surgery, I wasn’t expecting to be miraculously better however I was not expecting to be worse.
For the first 2 months I was over stimulated which was agony but that eventually got sorted out and the program changed to be much lower. The allodynia (nerve pain) that I had developed from the overstimulation went away thankfully, however underneath that nerve pain was a headache. My ‘normal’ headache has always been located at the front of my head; my forehead area and just reaching around to my temples, it’s never changed location and I never had pain at the back of my head. Since surgery I have been experiencing a lot of pain at the back of my head, the sides of my head and even behind my ears. It feels like my ‘normal’ headache has grown a friend or doubled in size.
The stimulator is on so low that I cannot feel it, because if I feel it my head actually hurts more. I was told that I needed to be able to feel the stimulation slightly in order to eventually reap any benefit. However feeling it causes me more pain so at the minute I’ve opted for having it on but on so low that I cannot feel it, so to not cause me any more pain than I’m already in.
Everyone I have spoken to says that this is not normal to happen after this surgery, so I don’t understand why I’m in so much pain?! I fought so hard to be able to get this surgery, I waited 4 years, went through a stressful complaints process, only to have the surgery make me worse, how does that work?! I feel defeated and I just don’t know what to do anymore. It’s been 4 months since surgery and the extra pain has not improved and I’m getting worried that I’m going to be stuck like this now. My neurologist wants to see me on the 15th Feb, so I’m hoping I might get some answers and some help then because I’m struggling right now.
It probably sounds really stupid but my most sentimental item is a stone my high school counsellor gave me years ago. In reality it’s nothing special it’s just a stone that was in like a decorative bowl of stones on her table in her office. But it means a lot to me and to me it sort of represents my journey and how much my old counsellor now turned close friend means to me. I know for a fact that I probably would not be alive today without her support and her friendship and advice means more to me than she probably knows.
Anyway I take this stone with me whenever I travel, and I arrived back home in England from a month in Dubai on Sunday afternoon. So started unpacking my bags, placed a bunch of clothes and bits and bobs on my bed including my stone, which I placed in the centre of my bed and left it there until I was ready to put it back on my bedside table where it lives. Finished unpacking and everything was away in cupboards and drawers and my bed was clear, however there was no sign of my stone. I then spent the next hour unpacking everything I had just put away, searching high and low for my stone. But it was no where to be found. After about an hour with no success I started to get quite distressed that I could not find it. I roped my mum in to see if she could find it but she couldn’t. The most frustrating part of it all was that I literally could not remember if I had put it somewhere after I had put it on my bed or even if I had imagined unpacking it and had actually left it in Dubai. After about 2 hours searching I had to face the fact I was not going to find it that night and would search again tomorrow, so I went to bed. Monday morning I woke up and started searching again, after another hour with no luck I was getting seriously worried it was lost forever and messaged my Dad to ask if he could check my room in Dubai to see if I had left it there. About 10 minutes after messaging him I had another look in my wardrobe in the pockets of my jackets, I then randomly looked in the hood of one of them and there my stone was! The relief that flooded me when I found it was so huge I felt like crying.
Other than the fact that the stone is really important to me, one of the most frustrating things about this situation was that I literally could not remember if I had put it somewhere. You see I have a really bad memory, which I put down to one, my headache and being in constant pain for 7 years and two, all the strong medications I was on for years. I personally believe that the combination of these two things has destroyed my memory. I struggle with remembering how to use the washing machine and even the oven. Anything Iattempt to learn is gone from my memory almost as soon as I have finished reading it. I have to write copious lists and notes so that information is not lost forever. It’s actually up there with one of the most frustrating things about my condition, and is quite hard to deal with.
However thankfully in this situation with the stone, I actually hadn’t forgotten anything I just thought I had. The stone had obviously fallen into the hood of my jacket when they were both on my bed and I hadn’t realised and ended up putting the jacket away without knowing the stone was in the hood.
It’s nice to be back at home in England, I prefer being here. Am going up to London tomorrow to meet my new psychologist so hopefully that will go okay.
Today marks 7 years of my never ending headache, who knew a headache could last more than a 7 days let alone 7 years. I’ve had a difficult year and today is a difficult day, this day reminds me of everything I feel was taken from me on the 14th January 2010, my education, my friends, my social life and my future. This day makes me wonder what my life could have been like if I had never got a headache 7 years ago.
Every year I write a post like this and every year the same thoughts and feelings come bubbling to the surface. Every year I feel angry for this card I’ve been dealt and every year I feel the same sense of dread for the year to come.
I wish I could be fixed, I wish miracles existed, I wish I could go back in time and change my fate of pain.
It’s been 7 years and I still struggle to cope, I struggle to get out of bed and get through the day, I struggle with trying to figure out my place in this world and find where I belong.
I feel incredibly lost at the moment as you may already know, I feel like my future is out of control because all it consists of is me in pain struggling to make it through each day. I feel like there is no bigger picture, it’s just me in pain doing not a lot and I don’t want that but I can’t figure a way out. It’s like I’m trapped in the cage of pain and I don’t have the key to get out.
So I guess it’s (un)happy 7 year anniversary headache – haven’t you tortured me enough already ?!
I disagree with the statement that pushing through the pain is possible for me, that Ishould just go about a ‘normal’ life like someone who doesn’t have chronic pain and live despite my chronic pain. That I should be able to ignore it, that after 7 years of it I should be use to it and therefore it shouldn’t bother me. I disagree with the statement that just because I can do things like exercise or pop out to the shops means I could work a full time job, I’m sorry but you don’t quite understand.
See I try so god damn hard to function as much as I can despite my pain, but when I try to do normal things like study or work my pain has a tantrum like a two year old that’s hungry, actually that’s not entirely accurate as it lasts way longer than a two year olds tantrum. My pain revolts, it gets so angry I’m left in more agony than normal and completely bed/sofa bound for what could be weeks on end. So when people say I should plan for the future or I should push through the pain it actually makes me really angry as I really don’t get how I can. I’ve tried so many times, I take one step forward into the real outside world trying to be a normal functioning member of society but soon after I am catapulted two steps back into my bed with pain levels through the roof. And when my pain is that bad there’s no hope in hell that I can function.
So my question is, if my pain does that when I try to do something how on earth am I meant to push through the pain and be a normal member of society despite my chronic pain? Because I really don’t understand how that is possible.
I wish I had a path, or some direction but all I feel is lost and depressed. People tell me I need to be mindful and take one day at a time but how can I even do that when I don’t know where I’m going at all. It would be alright if I knew where my life was going or had something to work towards but I feel like I’m lost in the darkness and I don’t know how to find my way out.
People ask me what I am going to do this year but I really don’t know. I don’t know where my place in this world falls and I don’t know how to figure it out. I just don’t know. The problem is, I’m in pain and not the sort of pain that improves with medication to become manageable. I have severe constant headache with no cure and never any relief. I struggle to get through a day let alone a year. My pain is not manageable and most of the time it’s severe, surgery only made it worse and gave me two headaches instead of just the one.
So when I’m asked what I’m going to do this year, first I feel ashamed to say well I really don’t know and second it just makes me feel depressed. Because no doubt it will be like every year, filled with pain and misery and only glimpses of stability, only distant dreams of the life I wish I had, the life I feel that my headache stole from me in 2010.
At the minute I just feel more lost than ever, everything I try to do never works out because of the pain. So I feel like I am resigned to doing ‘not a lot’ for god knows how long, forever? I am having a nightmare with the fact that surgery has made things worse and I really don’t know what to do anymore other than feel depressed. I wish someone had some answers for me because I sure don’t.
I wish with all my heart I was able to do something more than ‘not a lot’ this year and I wish I knew what I should or could do with my life, but I really have no clue.
If you have any suggestions please fire them my way!
I’m not a big fan of new year, especially the whole ‘new year new me’ thing people seem to do which really pisses me off because it’s a load of crap. And I don’t usually set myself any new year resolutions, but this year there is a couple of things I want to re-introduce to my life and so I’m going to make a couple of resolutions.
Re start journaling – I use to keep a diary/journal every day for years, however most of this past year I have neglected it. I’m not entirely sure why, I kind of got into my mind that I didn’t want to acknowledge how I was feeling because in my head I felt like if I wrote it all down it might make me feel worse. Which really is a load of crap because journaling was a great outlet for me for years and it actually made me feel better, so I don’t really know what happened this year with that, but I’m going to make it my goal to get back into writing a bit every day.
Improve my blogging – I want to grow my blog and improve my writing skills so I’m going to aim to write at least two blog posts a week on a regular schedule, and anything more than that is a bonus! I’ve already set some reminders on my phone to remind me to write and publish posts because my memory is awful, so I guess that’s a good start.
Reading – when I was younger I use to read a lot, mainly novels and then when I got sick I got really into non fiction books about health and psychology etc and those of the sorts of books I tend to read now. I’m currently in Dubai and before I flew here I bought 3 books and set myself a target of reading all 3 in a month. We’re now 2 weeks down and I’m already on the 3rd so it’s going well and I’ve got really into reading again. So this year I want to make it a goal of reading a bit every day, doesn’t have to be chapters and chapters but just a little bit every night before I go to sleep. I’ve found the past 2 weeks by doing this it also calms my mind and gets me away from technology and helps me unwind before trying to get to sleep, making it easier to fall asleep, which I struggle with.
They’re not exactly big resolutions or goals but just 3 small things which do help me cope which over the years I’ve neglected so it’s time to re-introduce them, in an attempt to help me feel slightly better.
Like I said I’m not a big fan of new year, it makes me incredibly depressed, a combination of seeing all these typical posts on Facebook of people bragging about what a good year they’ve had; which makes me feel rubbish because for the past 7 years every year has not been good and I’ve just struggled so much to get through it. And then in 14 days time my headache reaches it’s anniversary, this year marks 7 years and it just makes me feel downright miserable about my life and my future.