Reflection on 2016.

So seeing as we are nearing 2017 I’m going to take some time to reflect on this year.

Some say you start as you mean to go on and I started 2016 led in bed in a world of headache pain, so severe I could not move. I was at my now ex boyfriends house spending New Year at his and it was the first time since we got together a couple of months previously that he had seen me in such agony (I had managed not to let him see it up until this point); and to be honest it didn’t go down well. From there my relationship with him was a complete disaster, he completely checked out of it and I eventually got fed up with being cast aside and the complete lack or willingness to understand any of what I go through. A couple of months later I broke it off, only to find out a week or so later he was cheating on me anyway with a work colleague and was now in a relationship with said person. I wasn’t particularly sad that our relationship had ended, I was more sad at the prospect nobody ever wanting to be with me because of my illness, that I could never be loved or worthy of someone wanting to be there for me through all the pain, that I am not worth the effort.

From about mid November last year I started an apprenticeship at a local doctors surgery doing business admin and a bit of reception duty as well. The job was okay, well actually it was easy, the people were nice though the turn over of staff was high; people working there were unhappy for one reason or another. I did a lot of higher level admin, but I always wanted more, I wasn’t enthused about my job, to me there wasn’t any meaning for me, I was a person in an office when really I’d love to be the GP seeing the patients. Don’t get me wrong, a doctors surgery would not function without all the people in the office upstairs but it just wasn’t what I wanted to do with my life and wasn’t meaningful enough for me. Anyway I was off sick more than I was there, management were understanding and supportive but at the beginning of April I resigned. It was too much the pain was too much, the concentrating, the stress, the whole thing just made my pain levels sky rocket to become unmanageable. I was upset but it wasn’t really to do with upset of leaving the job it was more upset at, well there’s another thing in life I have failed at, let’s just add that to Sian’s big long list of failures.

It wasn’t long after that till the surgery process got fully underway, psych evals, meetings with my neuro and surgeon, followed by more psych care etc etc. But then one day in July I got the call with the surgery date. After that I just felt like I was in limbo, waiting for the 29th September to come, a day that could change my life for the better, or now as we know it, worse. Surgery came and went and I’m still in a great deal of pain as you all know.

I wish I had some sort of life plan or even just some life goals of what I want to do with my life, but the truth is I really don’t have a clue because I don’t know what I am able to do or even what I would be good at. I’m someone with zero qualifications and next to no formal experience, then you add in pain and that makes the whole situation even harder. I’m the sort of person that likes to plan things,  I write copious amounts of lists and the thought of something so big like my future being so unknown and unstable scares me and makes me incredibly anxious. I just want what ever I end up doing to have some sort of meaning to me, I want it to matter, I don’t want just some random job. Not that I’m even well enough to work at the minute. I’ve tried so god damn hard over the past 2 years to be a functioning member of society,  I tried college – headache did not like that at all, I’ve tried a part time job – headache did not like that either, I’ve tried a full time apprenticeship/job – headache definitely did not like that one! I don’t know what more I can try, everything I do try just makes me fall apart with pain.

So there is the three main sections of what has gone on with my this year. This year is the 7th year I’ve had my headache with the anniversary looming on the 14th of January. Every year brings me new issues and challenges dealing with pain in my life, I’d love to tell you that each year gets easier, when really they’ve all been difficult in different ways. I’ve had a lot of lows this year at the minute is one of them, but I’m trying so hard to hold myself together, maybe 2017 will bring me more luck, ha!

The never ending headache – Sian

Wishing everyone a low pain Christmas!

I have treated myself to a Christmas present, my own domain! I am now theneverendingheadache.com which I feel very excited about.

Christmas can be a hard time for us chronic pain sufferers, we so badly want to be well and join in with all the activities but often we just are not able to join in with everything we wish we could. Leaving us to feel miserable and frustrated about how our conditions affect us.

I’m spending Christmas in Dubai with my Mum, Dad and sister and we are out to a hotel on Christmas Day for lunch or Christmas Day brunch as it is called here. It should be really good, that’s if my pain behaves as much as physically possible, which hasn’t been happening much recently at all.

Wishing everyone a Happy and low pain Christmas I hope you manage to enjoy the day as much as possible,

love,

the never ending headache – Sian

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.

2 months of hell!

So it’s been 2 months since I had surgery and it’s been horrific. I’ve been sat at home in agony wishing I never had surgery in the first place. My normal headache has been way worse and it had been joined by a new friend; an extra headache at the back of my head. My head has also been very sensitive to touch, having my head against a pillow to sleep has been even more painful, thus my insomnia has made an reappearance. About 2 weeks ago now I decided to do a test and see what would happen if I turned the stimulator off for a bit, the result of this was that the extra headache went away, proving my theory that it is not surgical pain and actually the stimulation is causing an extra headache. I rang up my team in London and they said to turn the stimulator down really low and see if that made a difference, but there wasn’t any significant change after a few days so they decided they wanted to see me.

On Wednesday I trekked up to London and was first seen by my neurologists headache nurse who is a reprogramming wiz. She spent ages going through things with me and asking me about all the extra pain and looking at my stim system. She quickly came to the conclusion that my nerves had been severely overstimulated and I had developed allodynia in my head which is why it was painful to the touch. She said I seem to be very sensitive to the stimulation so we need to take things slow. She has changed the contact of the stimulation on my occipital nerves so I feel the stimulation in a different area of my head and the program is now one tenth of the strength it was before. As soon as she changed it I instantly felt some relief from all the extra pain, which felt bloody good. She is confident that this program will be a lot better for me and basically when my neurosurgeon reprogrammed it he only made it worse.

I then saw my neurologist for a few minutes to just catch up. I told him I had been wishing I never had the surgery and he said is is optimistic that this will be a lot better for me, and I still have 60/40 odds of some improvement of my normal condition. I mentioned that my psychologist wants to move me over to the ONS team psychologist when I get back from Christmas in Dubai in January. One of the nurses piped up saying he is fully booked till end of Feb, to which my neurologist insisted I be made a priority and have one soon after I get back. They rang me the next day after giving me an appointment 3 days after I get back from Dubai, so that’s good.

I left the appointment feeling so much better than I did when I went in, the extra headache has now been relieved and I never thought I would be so happy to have my normal headache back. Hopefully now that the programming is better the stim might be able to do the job it’s there for and help with my normal headache and not cause me any extra pain.