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 🙂

 

Had a week in hospital, am very unwell.

Been a while since I wrote a proper post, so thought I’d do a bit of an update before I get back to trying to regularly post. I’ve had a difficult time recently with a number of health related issues; mental and physical.
I haven’t been in a very good place at all for a while because of the failure of my stimulator and it has been getting to me quite a lot.
I spoke on here before about the fact my neurologist thought I had a histamine intolerance, well GI and eating related symptoms started getting worse and worse. Since about the middle of March they have kept getting worse. Eating would cause me to feel full after one or two bites, along with intense abdominal pain and nausea which would persist long after I finished those two bites followed by other GI symptoms. I tried to power through and continue eating but it kept getting worse, and from mid April I survived on a couple of mouthfuls a day. It wasn’t that I didn’t want to eat, wasn’t hungry or that food didn’t look nice, believe me it does – I love food and love cooking. But it makes me so unwell and causes severe pain and it kept getting worse; eating became unbearable. I kept getting weaker and feeling more and more unwell, abdominal pain and nausea started to appear not only after eating, though if I tried to eat they would just become unbearable. Since end of March I’ve lost 13kg in weight. My POTS symptoms have also returned over the past couple of months as well and as you can imagine my headache is not too thrilled either!

I saw a neuro-gastroenterologist in London a couple of weeks ago, that my neuro recommended I see. He said that he thinks that Ehlers Danlos Syndrome which I suffer from (genetically faulty connective tissue) is effecting my gut and we would need to do some urgent tests to figure out exactly the problems it was causing. However I kept going downhill and 3 days after seeing him last Monday I ended up having to go to A&E at the advice of my GP surgery. I was on the verge of collapse and needed urgent IV fluids to treat severe dehydration; as it turns out I also had dangerously low blood sugar. They gave me fluids and glucose and kept me in as they were concerned, however the doctors at my local hospital where I was said they would be unable to help me as I was too complicated for them. After discharging myself for a number of reasons which I won’t go into now (maybe on another post) the neuro-gastroenterologist professor in London admitted me up there, to try and get me a back on my feet slightly and to do the tests.
(I did also see my neurologist last week as well as I had a previously scheduled appointment that I managed to still make before I got admitted at the hospital where the professor is, however I feel this needs it’s own post so that will come soon!) 

I was given IV fluids, magnesium and vitamins, and because I am now completely unable to eat normal food without the pain I’m already in becoming unbearable, they have put me on these nutritional drinks called Elemental 028; which is basically a pre digested formula. They are more tolerable than food but do still cause me some pain which I hope won’t get worse. I had the tests but so far they have not figured out what is wrong and the only thing that showed up was that my spleen was on the high size of normal and my white cell and platelet count on the low side of normal. I was discharged on Saturday but still no better and am pretty much bed bound at home. Standing and walking for even a very short period of time e.g. walking to the bathroom, makes me feel like I am going to collapse. I’ve got another test to have but on an outpatient basis however I don’t know when that is going to be. But for now it’s predominately bed rest and nutritional drinks which aren’t very pleasant and cause me some pain but are tolerable and keeping me going for the time being. But I am pretty unwell to be honest.

I do have a theory that I am exploring but we will see how that goes.

 

 

I wish I knew…

I wish I had a path, or some direction but all I feel is lost and depressed. People tell me I need to be mindful and take one day at a time but how can I even do that when I don’t know where I’m going at all. It would be alright if I knew where my life was going or had something to work towards but I feel like I’m lost in the darkness and I don’t know how to find my way out.

People ask me what I am going to do this year but I really don’t know. I don’t know where my place in this world falls and I don’t know how to figure it out. I just don’t know. The problem is, I’m in pain and not the sort of pain that improves with medication to become manageable.  I have severe constant headache with no cure and never any relief. I struggle to get through a day let alone a year. My pain is not manageable and most of the time it’s severe, surgery only made it worse and gave me two headaches instead of just the one.

So when I’m asked what I’m going to do this year, first I feel ashamed to say well I really don’t know and second it just makes me feel depressed. Because no doubt it will be like every year, filled with pain and misery and only glimpses of stability, only distant dreams of the life I wish I had, the life I feel that my headache stole from me in 2010.

At the minute I just feel more lost than ever, everything I try to do never works out because of the pain. So I feel like I am resigned to doing ‘not a lot’ for god knows how long, forever? I am having a nightmare with the fact that surgery has made things worse and I really don’t know what to do anymore other than feel depressed. I wish someone had some answers for me because I sure don’t.

I wish with all my heart I was able to do something more than ‘not a lot’ this year  and I wish I knew what I should or could do with my life, but I really have no clue.
If you have any suggestions please fire them my way!

 

30 things.

30 Things about my invisible illness you may not know:

1. The illness’ I live with is: New Daily Persistent Headache (NDPH) Postural Orthostatic Tachycardia Syndrome (POTS) Elhers Danlos Syndrome Type III (EDS III)

2. I was officially diagnosed with it in the year: June 2011

3. But I had symptoms since: NDPH Since 14th January 2010 and POTS since 2005

4. The biggest adjustment I’ve had to make is: Learning that I can’t do everything and that doesn’t make me a failure.

5. Most people assume: That I’m lazy, faking it or exaggerating.

6. The hardest part about mornings are: Waking up and realizing that I have to spend another day in constant pain.

7. My favorite medical TV show is: House and Greys Anatomy

8. A gadget I couldn’t live without is: Laptop.

9. The hardest part about nights is: The pain is usually at it’s highest at night.

10. Each day I take __ pills & vitamins (no comments please): At the minute 4 different types and injecting 3x a day. It has got up to over 10 different types of medication though.

11. Regarding alternative treatments I: Have tried, Osteopathy, Physiotherapy, Acupuncture, Massage, Reiki, you name it I’ve probably tried it.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I had to drop out of school last October on my 3rd attempt of year 12. And I am unable to work.

14. People would be surprised to know: That I’m actually sick, and that’s the reason why you think I’m lazy and that I most definately am not faking it.

15. The hardest thing to accept about my new reality has been: That I can’t do every single thing I want to do, and having things taken away from me that I’ve wanted to do but can’t like school and university.

16. Something I never thought I could do with my illness that I did was: Pass my driving test in Dubai.

17. The commercials about my illness: They don’t exist, most people don’t even know that my illness’ exist let alone have commercials about them.

18. Something I really miss doing since I was diagnosed is: Being able to go to school and participate properly.

19. It was really hard to have to give up: School

20. A new hobby I have taken up since my diagnosis is: Lying in bed and watching TV series does that count?

21. If I could have one day of feeling normal again I would: I don’t even know.

22. My illness has taught me: That you should never take a pain free, healthy normal life for granted.

23. Want to know a secret? One thing people say that gets under my skin is: When people say i get headaches NO I have ONE headache, headaches implys that it comes and goes that is not correct it has never gone.

24. But I love it when people: Ask genuinely how I’m feeling.

25. My favorite motto, scripture, quote that gets me through tough times is: I don’t actually have one, I’m quite a negative person (don’t tell me that I will feel better if I’m positive tried that it doesn’t work).

26. When someone is diagnosed I’d like to tell them: Keep fighting and stay strong, you are not alone, the chronic pain and illness community is actually quite big on facebook and the blogging community.

27. Something that has surprised me about living with an illness is: Just how sick I actually am and how much pain I am in all the time, I never thought this much pain existed, I was wrong.

28. The nicest thing someone did for me when I wasn’t feeling well was: My sister giving me a cuddle and kissing my head to make it feel better.

29. I’m involved with Invisible Illness Week because: It’s so very important to spread awareness of invisible chronic illness’ as it’s the only way we will get rid of the stigma of ‘it’s all in your head’.

30. The fact that you read this list makes me feel: Great, Thank you for taking the time 🙂