7 years – each year doesn’t get easier.

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 ?!

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

6 years…

January is a difficult month for me to say the least. Yesterday was my headaches 6 year anniversary.Every year that goes by doesn’t get any easier and this year was no different. 6 years is a long time for anything let alone to have been in constant pain for, which takes it’s toll.
I’ve had a month off the job/apprenticeship I recently started. A combination of being really badly normal people sick and the pain flaring. So it hasn’t exactly been the greatest month anyway let alone to add in that I find January particularly difficult anyway, because of the anniversary.
I wish I was strong enough to celebrate my 6 year anniversary as surviving 6 years of chronic pain and everything that has brought, but I honestly don’t feel like celebrating my worst enemy, the thing that has caused me so much pain, misery and heartache.
So yesterday I was sad for everything I have lost, all the problems the pain has caused and all my dreams the pain has ruined. I’d like to say today I have cheered up, but it’s been just has hard.

So happy or should I say unhappy 6 year anniversary headache.

 

It’s been 3 years…

Today marks 3 years since the suicide attempt that nearly killed me. It was my third attempt that week, though the first two were more like practice runs to gauge how much medication I needed to take. I had prepared for that day for months, I had spent hours on a suicide note, wanting my last words to be exactly right, everything was ready and I was ready to die.

My memory of it is fuzzy, I remember only brief flashbacks. I don’t even remember getting all the medication out the packet and taking it, the first thing I remember is being slapped in the face in the car by my mum to try and keep me awake on the way to the hospital. I remember a Muslim porter at the hospital praying over me in the lift as I was taken to intensive care. And the next thing I remember is waking up to see my school counsellor at my bedside, the first thing I said to her with tears streaming down my face was ‘why am I alive?’

The pain had pushed me to the edge and then it pushed me off, I felt like there was no other way out, I felt like I had no choice. If I wanted to get rid of the pain my only option was to die and that seemed like the best option for me.

Since that day 3 years ago it hasn’t been easy, I try to keep my head above the water however sometimes I start to drown in the negativity I am so prone to. Though there has been periods of time since moving back to England 2 and a half years ago that I have felt mostly okay despite pain, that I have felt happy despite pain, that I have felt able to cope. So I know it is possible and I just have to keep working on it constantly and try not to drown in darkness that is sometimes oh so comfortable.

My journey with my never ending headache has been hard it’s been over 5 and a half years now and it’s unlikely that I will get better. But I have survived this far and I don’t want my headache to win, because I know I can be happy despite it so I will keep fighting for that.

I will leave you with my favourite quote which helps ground me on bad days:
On particularly rough days when I am sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that’s pretty good.

Two years ago.

Two years ago tomorrow I came back to England from Dubai. I was incredibly suicidal and yet again it wasn’t safe for me to be in Dubai where mental health care is lacking and suicide is illegal. Having only just got away with it in September 2012 when I overdosed and ended up in intensive care. I didn’t want to come back to England, actually I loathed the idea. I wasn’t expecting to stay longer than a few weeks, so when I was told by the mental health people I started seeing here that it would take way longer than that, I was distraught. Dubai was my home and I hated England.
The mental health team were useless anyway and didn’t help so eventually I got rid of them and found a private psychologist who specialised in treating people with chronic pain. I hit the jackpot and she was/is great. She has helped me immensely with being accepting of my condition and learning to live a good and happy life despite pain. Taking every day as it comes, and incorporating mindfulness and pain management techniques into my life, which help a lot.

I never thought any of this would be possible for me, for me to be in pain but to be okay, to be happy. It is highly likely I will be in pain for the rest of my life, but that’s okay because I can cope, I can be happy and I can live a full life despite chronic pain. I still have bad days, bad pain days, flare ups which last weeks/months, days where I’m in a bad mood because of it. But that comes with the territory of chronic pain and not every day is bad.

After dropping out of school back in September 2012 after my overdose I never thought I would be back in education ever again. But I am, I’m at college and I’m doing well at college and hope to go to university after I finish my course in a years time.

I’ve come so far over the past two years, there has been many ups and downs and it has been an incredibly hard journey over the past five years since I got sick to get to this place. However I hope that maybe I am a better person for it. For what I’ve achieved and how far I’ve come.

None of this would have been possible for me if I hadn’t moved back, if I didn’t have the support from the people I do, my family, my school counsellor and my psychologist who support me every step of the way. In order to move back we had to split my family up, my mum lives in England with me and my Dad and sister in Dubai, it’s been hard on my parents and it’s been hard on my sister not having my mum there with her all the time. I feel bad about it but I can’t appreciate what they have done for me enough. I would never have got to this place without moving back and I can’t thank them all enough.

I am the never ending headache, but I have accepted that.
I may always be the never ending headache, but I can live my life as best as possible despite it.
I can have NDPH and be okay, I know that now.

I think I may have had a 5 year anniversary miracle.

So I started typing a very ‘woe is me’ post of me feeling desperately depressed and sorry for myself because it is my headaches 5 year anniversary today. But several things happened for me to end up deleting that post and writing this one instead.

Firstly I spoke to my old school counsellor, I’m never sure how to refer to her now because technically she is no longer my school counsellor as I no longer go to that school. But we are still in close contact which means the world to me as I’ve always felt that she is the only person who understands. I value her opinion over most other peoples, she is always there for me no matter what and knows me better than probably anyone else in the world. We had an appointment to FaceTime on Sunday morning, however my internet wasn’t playing ball and we could hardly hear each other which was very frustrating so she rang me instead and we spoke that way. She always knows what to say to get me to get my act together and I’ve been thinking a lot about what she said. She said only I can help myself but I need to decide I want to get better like last time, and I need to put the work in. That I’m not helpless but no one else can do it for me they can only support me in getting better.

Secondly something very strange yet remarkable has happened. In the 5 years I have had my headache not once has any treatment had any effect (and I’ve tried a lot of treatments), well they had an effect but it was just strings of horrible side effects with no benefit. I was beaten down by all these failed treatments, the disappointment of that along with the pain and misery that has worn me down for 5 years, to the day exact.
My Cefaly arrived last Tuesday, I wasn’t very optimistic about it, didn’t want to hope because I didn’t want the disappointment when like every other treatment, it didn’t help. I’ve used it every day now, in the first few days I couldn’t tolerate the intense pain it seemed to be causing me whilst it was on, but I persevered and suffered through that pain and built up the time that I had it on for. First with program 3 for stress relief, the least intense program, and then built up to program 1 abort and program 2 prevent. It is still very painful when it is on, but something happened, it may be a 5 year miracle. Over the past few days after completing a session or two of Cefaly I have felt clearer with a lot less pain. Pain levels lower than I have ever had in my 5 years with my headache. Take yesterday for example, I woke up at about a 6/10 which is low ish for me anyway, but I did a 20 minute session on program 2 prevent and was down at a 4/10 very manageable. I then went to college with less pain than I have had in 5 years and college went okay, by the time I got home 6 hours later I was back up at a 6/10, so Cefaly went back on for 40 minutes and I was back down at a 4/10. Yes there is still pain but a lot less pain so far. Never before have I been able to say that something has helped the pain so this is kind of a new experience for me, and I will admit that it is a bit scary and a bit daunting. The reason I’m scared is because I feel like admitting that something has helped saying it aloud will jinx me and it will turn out to stop helping ease the pain and I will be back in severe pain and deep deep disappointment and depression because of it. Also that all I have known for the past 5 years is severe pain where I couldn’t remember what being pain free felt like, and I’m now (hopefully) entering a world of a lot less pain which is all I wanted (other than ideally being pain free but that’s not going to happen) but I never thought I would get and that is somehow weirdly scary, is that wrong?
Also since using Cefaly I have felt a lot calmer whereas I was back in deep desperate depression unsure of how to get out, and with today my 5 year anniversary coming up I was just feeling worse and worse and suicidal again. That was last week and before, but now I feel like I can cope, that I can manage my pain now there is some relief, something I never thought I would get but is a welcomed surprise.

I hadn’t quite figured out how to tell anyone yet that it’s helping because I’ve never been able to say that before, so it is all very new to me, and I need to get over the fear of telling people will surely mean that it won’t last, that it will jinx me. But I have told my mum and sister just now, and now you guys as well.

My initial post for today was going to be very depressing because I was feeling extremely depressed and sorry for myself about it being my 5 year anniversary, but with the less pain that has started to lift and I’m feeling more optimistic about my life rather than all doom and gloom.

Today is my headaches 5 year anniversary, though this year it is also the day/week that my pain eased, I am not religious but to me that is some sort of miracle.

I’d say Happy New Year, but I don’t really feel happy about it.

New Years Eve, in bed by 10. There isn’t much to celebrate to be honest, all I have to look forward to is another year of pain. I see all these posts on Facebook, ‘friends’ who aren’t really friends just people I know, about what a great night they had, what a great year they had and how they are looking forward to 2015. It makes me angry at the world, with what I’ve been given; a life sentence of pain and the misery it brings.

I’ve had a horrible year filled with pain and misery and that’s all I have to look forward to in 2015. For me 2015 just marks 5 years of indescribable pain, so what is there to celebrate, what is there to be happy about? My future is bleak, all it’s going to consist of is pain and misery and I can’t handle it anymore.

I feel so desperately miserable and depressed, no one can fix me, no one can help me. I can’t be saved, I’m beyond saving.