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 ?!

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.

A day in the life of me.

Pain dominates my life, it controls every action and thought I have, and I can’t help it because the pain is so severe all the god damn time. Every day I wake up in pain, sometimes it’s at the lower end of my pain scale, which is still a 6/10 but that’s the best I get. Sometimes I wake up and I’m already at an 8/10. Throughout the day it continues to climb no matter how bad it is when I wake up, by afternoon/evening it’s even worse. Getting out of bed is hard, because well who really wants to get out of bed when they’re in severe pain and know it’s only going to get worse throughout the day. Sometimes I think that maybe if I stay in bed and don’t get out to face the day that maybe my pain won’t increase, however that is never the case, so I force myself out of bed even though all I really want to do is sleep forever. Sleep is my friend, actually sleep is my best friend, when I sleep there is no pain, so ideally if I could sleep forever that would fix all my problems, I wouldn’t have to feel the pain and I wouldn’t be subjected to all the horrible emotions the pain brings me, which I can never seem to escape.

There’s something different about having a constant severe headache than having pain anywhere else in your body. (Not that I’m minimising other types of pain because I’m not!) But because a headache is in the place where you think it’s so dreadfully hard to think about anything other than the pain that is dominating your mind and every thought and feeling you have. I get joint pain because of my EDS, it’s not severe on the scale of EDS pain, but for me it’s much easier to deal with than the pain in my head, I can almost compartmentalise the joint pain but my headache, well that’s a different story. I can’t forget about it for a minute, because it’s in my head.

I go into college for lessons on two half days a week. I have one lesson on each day but they are three hours long with only a 20 minute break halfway through. I sit there and I attempt to concentrate but it’s so hard because the pain is dominating my mind and is usually really bad and concentrating only heightens the pain. It makes me angry because I want to be able to learn, to concentrate, to not have the pain dominate my life, but the pain always wins and makes me feel weak and like a failure because I can’t do anything. So mostly I just sit there trying dreadfully hard to concentrate but the pain won’t let me so I sit there feeling miserable and not really taking anything in. I spend a lot of time outside of my 2 half days of college a week in bed, lying there in pain and miserable because I’m in so much pain.

By evening I feel like there are a hundred knives stabbed into my head and my head is about to implode/explode, it’s hard to do anything other than lie there and even that hurts far too much. And thus the cycle repeats.

The majority of time I feel desperately depressed because of the pain I’m in, the majority of time I don’t even want to be here. I know I’m weak because of the pain, because I let it control every thought and feeling I have, but I just can’t help it. I’m so desperately helpless because no one knows how to help me, and the truth is I don’t think anyone can help me anymore. Everyone has done everything they can, doctors have tried and failed, therapy only does so much, there isn’t anything more anyone can do and I feel so lost and stuck, I really don’t know what to do anymore and where to go from here.

The only fix there is is to not be in pain anymore, but I’m going to be in pain for the rest of my life. My neurologist said it’s highly likely I will be, and don’t know how to explain it but in my heart I feel like I know the pain is never going to get any better. I know my body and I know my headache, resistant to anything and everything, it’s stubborn and I know it’s probably never going to leave. I don’t know how to cope with that, I don’t think I can.

On the 14th of January 2015 my headache reaches the 5 year anniversary. That’s 1,825 days of constant pain. There’s something different about the 5 year mark than say the 4 year mark this past year, something worse. 1 year was pretty bad, actually they were all bad, but 5 years, half a decade is even worse. The anniversary just sends me spiraling downhill even worse every year, it reminds me of everything I’ve lost, everything bad that has happened. It reminds me that because I’ve reached 5 years, there is nothing stopping this going on for the next 5,10,15,20 years/the rest of my life, and that scares me to death. I worry about it all the time, how am I ever going to get through it all, how am I going to live with this pain for the rest of my life, how the hell am I going to cope. No one wants a life in constant severe pain, but that is what I’ve got and that is what I’m probably going to have for the rest of my life, and I don’t want that future, I don’t want it at all. All I see is more pain and misery in my future and it’s not very inviting.

4 year anniversary.

So the day has come around again. 4 years ago to this day I developed a severe headache which never left. Who knew people could suffer from never ending headaches, I never knew New Daily Persistent Headache existed until I got hit with it 4 years ago. But the condition effects hundreds of people worldwide, yet has very little research, or funding for research, and very little treatment. There is no set treatment for NDPH, you just have to dip in and out of medications used for other conditions in hope that they will help. But NDPH is the most resistant form of headache condition to treat. It often doesn’t react to the medications which are trying to help but most of the time don’t. In my case I have tried all the available medications none of which made an impact. I’ve tried more aggressive forms of treatment, nerve blocks, botox, DHE; no impact on the pain. I’ve tried alternative treatments, acupuncture, osteopathy, massage, acupressure, hypnosis and rekei; and none of these had any impact on the pain either. I’ve now got to the point where I have tried absolutely everything there is to offer for this condition and there is nothing more my neurologist can do to help me. I’m on the waiting/funding list for occipital nerve stimulation surgery, though due to funding issues with the NHS this surgery is under decision about whether or not it’s going to be funded by the NHS at all. If it is the wait is going to be about 2 years before it’s done, if it’s not well then there really is no hope at all. 

It’s been 4 years, which if you think about it is a long time to be in pain for with no relief. Over 4 years ago now I was a normal happy care free teenager, now I’m in pain, depressed, miserable and have had most of my teenage years taken away from me that I will never get back. I’m feeling very miserable today because of it’s anniversary, the day just reinforces everything bad, reinforces that I’m helpless, that I feel alone, that I don’t have much of a future to look forward to as all it is going to consist of is more pain and the misery that comes with the pain. It’s been 4 years and there is nothing stopping the pain from continuing on another 4 years, 10 years…forever. I struggle to see the point in doing anything, because seriously what’s the point in anything if all I’m going to be is in pain all the time. I’ve been suffering with no relief for 4 years now and I don’t know how much longer I can cope with the pain. I’m fighting it and fighting it but the pain is always there and I’m tired of fighting, I’m exhausted from being in pain all the time. I just don’t want to have to do it anymore. And I don’t understand why this happened; what did I do to deserve all this pain?!