5 years ago…

5 year ago today (30th September – is actually the 1st October now as I publish, oops!)  I was rushed to the hospital after a very large overdose. I was done, couldn’t do it anymore, I didn’t want to live in pain for the rest of my life, I just wanted it all to be over. It was a large overdose and I had a lot of other medications in my system too as they were my regular meds. I don’t know how long it was between taking the meds and falling unconscious, but I don’t think it was long. Most of the rest is a complete blur, my family found me, I don’t know how soon after it happened but I was in a bad way. They didn’t want to wait for an ambulance as often ambulances there would take forever to turn up, so they carried me down the stairs and into the back of the car. My Dad ran every red light to get to the hospital as fast as possible, my mum was sat in the back slapping my face to try and keep me awake. All I remember is being slapped and me telling her a few times to ‘fuck off and let me die’ before slipping unconscious again. From here I don’t remember much more just a couple of brief flashes in and out of consciousness. My t-shirt being ripped open in A&E, a porter praying over me in the elevator, a catheter being inserted. They put a tube down my nose for activated charcoal but don’t remember that bit at all. I was unconscious in the ICU for quite a while before I finally came to late the next day I think and then I spent another full day in ICU before a night on a ward as well. Other than these few brief details I do not know what else occurred and I don’t bring it up with my family to ask about it. I don’t want them to have to remember it so vividly and live through it again in their mind.

It feels like that was a lifetime ago, that it was a different person. I’ve been in somewhat bad and suicidal places since, but nothing as severe as how suicidal I was before that attempt and haven’t had any plans since my attempt 5 years ago. Despite the continued pain and illness the past 5 years, I’m glad I survived and I don’t want to repeat that experience ever again. And yes there have been bad times since and lots of pain but I’ve had good times too, some happy times and time spent laughing. I like laughter and sarcasm and turning things into a joke, often this can actually help me cope. I have a great sense of humour and feel that if I didn’t have one, what would I have left? It’d be pretty god damn miserable if I couldn’t see the funny side to things and wasn’t able to laugh at myself and at things in life, which is how it has sometimes been in previous years.
I thought I may feel a bit weird or emotional today about it all, but actually I feel okay. I feel happy I’m still here and that luckily 5 years ago my attempt at taking my own life did not succeed.

Currently I feel very stable mental health wise to be honest. I did have a brief struggle earlier in the year with the whole failed ONS situation, but I’m doing much much better mentally now. Which was helped by changing back to my psychologist of 4 years after having a brief break where I had to see the headache psychologist after ONS surgery, which wasn’t right for me. I feel upbeat and positive, right now I feel like I’m fed up of being miserable as it doesn’t help. Which is a big achievement for me, especially given I’m actually very unwell at the moment. I’ve actually been in hospital the past 2 weeks. But despite the pain and being very sick I still feel positive, able to see the bright and funny side of things, to laugh and to joke. I’ve got an excellent team of doctors, I feel positive and optimistic about everything.  I will write more about it all soon, when everything is all sorted out. I’m in good spirits despite everything, which is pretty revolutionary for me.
However I really need to stop being in hospital on the 30th September. Three years out of the past 5 I have been,  last year was my ONS surgery – can you believe that was a year ago?! And now this year too, which is unrelated to my NDPH or my mental health.

 

P.S have majorly conquered my doctors appointment anxiety currently and am feeling very proud of myself about that.

 

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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.
iamtheneverendingheadache@gmail.com

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

 

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.