It’s the never ending headache’s 4 year anniversary!

I got a notification today telling me it’s my blogs 4 year anniversary. It’s crazy to think that it’s been 4 year since I started writing on here. I’d been writing similar for a couple of years before but on Tumblr under the same sort of url, but closed it down and started out on here properly.

My reason for starting writing was to help me cope with the challenges of living with this headache, to give me an outlet because I’m not very capable of voicing my feelings to anyone. I needed a safe place where I felt able to express how this condition makes me feel somewhere other than the once a week session in a psychologists office. It has always and still does make me feel so much lighter once I have written down and shared how I feel; it’s very therapeutic! I’d really recommend blogging/writing to everyone, especially if like me you tend to bottle things up and have difficulty expressing and sharing your emotions with people.
My blog has always remained very private to me, as in I don’t tell people who I know in real life and see all the time about it. Most of my friends and family don’t know it exists and the couple that do respect my privacy enough and how I feel about not wanting to share it with them. I just simply wouldn’t feel comfortable being as honest if I knew family and friends were reading and knew everything I write on here.

I know this blog isn’t often too positive or hopeful and in some ways I’m sorry about that, I wish I could be more of that for you all. But I’m not going to lie and tell you that living with this condition isn’t hard or it’s easy just to get on with it, suck it up and continue with your life as if you didn’t have a headache. Because that’s not possible for me and not for a lot of people with NDPH, that being said a lot of people do work and study. Most of us just try to get on the best we can, whatever that may look like or our situation may be. I pride myself of this being a personal honest account of how this condition affects my life, the problems it causes and how it makes me feel. And I hope that is okay.

When I started this I never thought that many people would be interested in reading about my life and the issues I have faced and still currently face with my headache, turns out that quite a lot of people do. To those of you that read my blog and have ndph or a different headache/migraine condition, I hope that somehow knowing that you’re not alone in this or how this may make you feel is of some small comfort.
To everyone those that always comment and are rooting for me, thank you means a lot!
And finally to all the lovely people who have emailed me since I put a contact email on here. It’s been really nice chatting to each of you, I hope that sharing experiences, helping each other feel slightly less alone, and chatting about random stuff in our lives as a distraction helps you guys as much as it helps me.
If you haven’t emailed me but would like to talk to someone who gets it, share experiences etc, feel free to send me an email as I’d love to hear from you.

Thanks for all the support over the past 4 years, I’ll keep writing 🙂



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

After having some time to reflect.

I have been so absent from here recently, it has been a difficult few weeks with a lot going on and a lot of thoughts going through my head. Sorry for the lack of posts but am hoping to be back blogging more frequently again now.
I have had some time to reflect this week and really think deeply about what I am going to do. I don’t think university will be right for me I think it will be detrimental to my health both physical and mental, someone I care about and value their opinion told me today that what would be the point in a degree if I end up dead. Blunt, but true. So that brings up the question of what do I do instead and this has really been getting to me as I feel like I have to do something meaningful and I feel like I need to be working towards something.
I am currently in Dubai and on the flight here I really had some time to think about everything. I feel like I need some time out of everything, time to focus on getting my pain under control naturally again, time to get consistently stable with my health, time to work on my acceptance. I have had periods of being stable and okay over the past year, so I know it is possible as long as I put the work in. The problem is that they have been short lived and I feel like I need to get it so that I am consistently feeling okay before I move on and do something with my life. I feel like I will be unable to move forward with a job and a career unless everything else is under control, and if it is not then I know I will not succeed in what I want to do. So I am going to spend some time however long I need to do this, maybe even up to a year, whatever it takes to reach my goals in managing my pain and stability. Putting into practice everything I have learnt, making it a routine and sticking to it consistently.
After that I might look at slowly introducing some other stuff as well as my pain management, maybe some volunteering to get some life experience and then maybe a counselling course to become a counsellor.
Being in Dubai, today I saw my favourite person; my old school counsellor. I discussed all of this with her, she probably knows me best in the world and always understands my feelings about the pain. She agreed that I need some time to get myself sorted before starting anything again.
I will not be returning to college next year to finish my course, and therefore will not be going to university for now. Instead I will be focusing on getting back the good place I have been in before however have not managed to stay there consistently, but I will get back there with time, work and effort and hopefully I will manage to stay stable indefinitely. And then I can start to move forward towards what I ultimately want to achieve from my life, but my pain management techniques along with my acceptance have to be made a priority in my life, above all else – this is what I have failed at before and I need to work to succeed in this for the sake of my health and well-being.