Not so good.

Things aren’t much better, actually they’re no where near better. I had an awful week followed by an awful weekend and day off of college and things aren’t much better today. The pain has been horrific, this weekend I managed to go to work on Sunday, thankfully it only turned out to be a 2 hour shift which was more like 1 hour but it was a pretty busy hour, the bar was packed. I got through it but when I got home I just collapsed in bed, it hurt too much to move. By Monday morning I thought the pain was a bit better which was good because I had a driving lesson, but as I was driving with my instructor down the road the pain cranked up a notch, I got through the 2 hour lesson though and managed it okay, but after getting home I was in a whole other world of pain. The rest of the day was meant to consist of some much needed college work, but instead it consisted of staying in bed because it hurt too much to do anything and all I was left with was the god awful pain and my depressing miserable thoughts.

Still struggling with my mood, acceptance and positivity has gone out the window and I’m left feeling angry and miserable because of the pain. Angry that I’m in pain all the time, miserable because I’m in pain all the time, so god damn tired of being in pain all the time, and not to forget the fact that it the pain hurts so much all the bloody time. I’m back to putting on this front, the front that everything is fine and there is nothing wrong with me, I put it on in my lessons at college, I go to college every day I need to be in and act like I’m fine in lessons because that’s the front but inside my head is just so screwed up with pain and anger and misery and not to mention hard to concentrate with the pain and also my thoughts, though over the years I have perfected this front. But when I’m alone I just sit here in pain and feeling all these negative emotions that I can’t seem to budge or get back to almost seeing clearly, to get back to feeling a bit better like I had been not so long ago. I don’t know how to get back there, I don’t see how I can, I don’t see how to get past the fact that being in pain all the time is ‘okay’ because it’s not. I don’t see how anyone can possibly help me, doctors can’t, psychologists have tried, but if I’m back to feeling not so good about everything so what more can they do for me. Surely I’m beyond helping now, I feel helpless and I make everyone around me feel helpless because the truth is that no one can take away my pain so what can they do for me?!

Right now I’m meant to be typing up my first sociology assignment draft, but my heads not really in it, and not to mention my sociology teacher is useless and I have no clue where to start. So I might just go hibernate in bed till I can sleep, and then it will be another day at college with the ‘I’m fine’ front that I’m so good at.

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I’m struggling and I’m sorry.

I’m sorry I have been somewhat absent recently, I’ve been trying to write this post for the past week or so but I’ve really been having trouble with it and admitting to myself that I am an absolute hypocrite. I talk a lot on here about recovery from depression, which I had been experiencing for the past 6 months or so. I talk about how it is possible and I know it is because I had been so much better emotionally through acceptance of my condition. But I’ve had a set back and as well as feeling pretty down I feel like I am the biggest hypocrite because I’ve spoken so much about recovery, and I hate to admit it, but I’m not doing so good. I feel down, not like severely down or depressed like I have been in the past but I’m not doing so good emotionally. I’ve lost my positivity, my hope and my acceptance and I don’t know how to get back there and I don’t think I can.

I can’t seem to find the right words to explain how I am feeling but it’s not too good. My head hurts and it hurts all the time and I feel miserable about it. I’ve lost my acceptance of my condition and I’m struggling to get back there. Why should I accept something that shouldn’t be there and isn’t okay, because the truth is it’s not okay to be in constant pain. I feel weak and like I am letting everyone down by feeling like this. I’ve had so many people tell me over the past 6 months that I’m strong, that they are proud of me. But they don’t know I’m struggling again and if they did know I feel like I would have failed them because I’m not strong and they shouldn’t be proud of me. I’m starting to fall down the rabbit hole of depression again, and I’m not sure how to get back out. I feel like I’m a lost cause again that no one can help and that maybe for me complete recovery of depression just doesn’t exist due to the intense pain I am always in.

I am only human and I do have chronic pain which has it’s ups and downs but I feel as if I have failed my readers by feeling bad again and that I am a hypocrite for talking about recovery and then starting to go downhill, so I am sorry. I know it is possible to recover from depression and if you have depression and you are reading this it is possible to feel better but maybe it’s just not possible for me to get completely better from depression due to chronic pain. Maybe I’m just not strong enough to keep my acceptance going, I feel weak and I feel like a failure.

When to reveal to people that actually you are sick?

I started college this week and so far it’s been great, everyone is really nice and so far I’ve been enjoying the four subjects I am taking for my Access course. I’ve had a busy week, consisting of going to college then coming home doing my homework and writing up notes and then going to taekwondo training, I haven’t had much free time which I’m somewhat okay with because I’m keeping busy and not having much time to stop and think about the pain, which so far has been behaving this week (other than Monday night where I was at a 9/10 all afternoon and evening, but it was my day off college so didn’t effect me in that way) other than that I have been averaging 5 or a 6/10 on the pain scale, which is a level of pain I can manage and still function with.

Something I am struggling with though is when and if I should reveal the nature of my condition to people. The course leader at my college knows about my headache and so do the nurses. And we had to write an introductory piece about ourselves in English yesterday so I wrote about my headache in there, so my English teacher will now know, I should probably tell the rest of my teachers but I don’t really know how to bring up such a topic. My pain does effect my studies, my concentration levels and my ability to function especially on a bad day, which so far hasn’t happened. But my flare ups can last for weeks and although I don’t cancel plans because of my pain and I try to go about my day as best and as normally as possible despite the pain being severe, but there will be some days where I just won’t be able to cope. Maybe I should send my teachers an email just explaining my situation, maybe that would be the best thing but I’m not sure.

And then I’m struggling with do I tell the people on the course about my headache, do I want people to know? I don’t want pity that’s not what I want and I suppose eventually I should tell people, though I’m not entirely sure how and when is the right time. I don’t think it’s something I want to reveal just yet, maybe I will when I know these people a bit better. They are all really nice and I’m sure they will be understanding but I’m terrified I will be judged on my pain and put people off from being friends with me. Which could sound mean of me to say because I know not everyone is like that, but it is something that concerns me. If anyone has any suggestions as to what they think I should do, I am open to them!!
It’s really nice to have something to do every day now, something to get up for, things to learn and a goal to work towards. For so long I haven’t had that because I couldn’t see any type of future for myself that I wanted.

Doctors: Conclusion.

My experience with doctors hasn’t been easy to say the least, I’ve seen so many over the course of the past nearly 5 years now, and most of them haven’t been that great, haven’t had a good bedside manner (That includes nurses as well: I once had a nurse in London say to me ‘You can’t be depressed and self harm, I bet you have a flat screen TV at home you have nothing to be depressed about’ which sent me into floods of tears and I don’t cry often but that really got to me), haven’t listened or seemingly haven’t wanted to help much. Doctors who I was seriously questioning if they had ever even gone to med school because they seemed so lacking in their ‘expertise’. For a while my faith in doctors was completely crushed and as I’ve written this series you have seen that I eventually found some ‘good’ doctors, and not only good at what they do but nice as well, so they are out there but often it can be so difficult to find them.

When my neurologist told me last November that there was nothing more he could do because we had exhausted all options I felt so utterly and completely lost and helpless and it sent me in to an even deeper pit of depression than I was already in and started hoarding medication again. But with a lot of therapy from a psychologist who specialised in treating those which chronic pain conditions, I learnt acceptance. I always thought that as long as I had NDPH and was in pain I would always be depressed, that I would never recover from depression because it was so closely linked to my pain. When actually it doesn’t have to be that way, in my opinion we have a choice, we can let the pain control and define us, we can let it hold us back from the things that we want to do or as hard as acceptance is (and believe me it’s not easy but I can assure you it is totally worth it.) we can accept our condition and try to move on from it even though it’s still there, we can try to live our lives as full and as happy as possible despite the pain.

For me acceptance was scary and totally unknown, I felt safe in my bubble of depression which consisted of me sitting in my room feeling miserable as hell, to go out into the real world was scary to rejoin society again and start living my life and moving on from the pain that had been holding me back for so long. When my neurologist told me there was nothing more he could do, I felt angry, angry with the world, angry with my condition and angry at him because he was the doctor and wasn’t he meant to fix me?! But really he did the best thing by being honest with me, he allowed me to be able to move on. Getting out of treatment for my NDPH has also been great for me, the medications were horrible, awful side effects all the time, I gained 2 stone in weight for the past two years, I’ve lost all the weight now and and now back to almost the weight I was before I got sick, I’m no longer completely exhausted all the time because the medications were making me so sleepy, my hair has also all grown back from when I lost over half of it due to Sodium Valproate. I look like my old self again and I pretty much feel like my old self again, which I never thought I would get back. Acceptance is a powerful thing and it’s changed my life for the better, if my neurologist hadn’t been honest with me then I don’t think I would have got here with still being in treatment, so for that I thank him, for that he is a great doctor.

I only got here because I had exhausted all options to treat my pain, I tried everything medical and alternative and nothing worked. I had a choice to make, to let the pain control me and have literally no life whatsoever and also no life that I wanted or to live despite the pain and choose acceptance. I obviously chose the latter but it took me almost 5 years to get here and it was only after I had exhausted all medical options. So if you are in treatment and you don’t think you are ready to accept your pain and accept that you will probably be in pain for the rest of your life then that’s fine, but I encourage you to have an open opinion towards acceptance, it changed my life and it has the potential to change yours too!

World suicide prevention day.

I am disrupting my doctors blog series to talk about a day that has great significance to me, today is world suicide prevention day.
As many of you know I am a suicide survivor myself, having tried to take my life three times in September 2012, the last attempt landing me in the ICU in hospital for a week. I’m a bit fuzzy on the details but after taking a rather large overdose I passed out unconscious, I don’t know how long I was unconscious before I was found, and it’s not something I like to ask my mum about the details of because well as you can imagine it’s a bit of a touchy subject for her to say the least. I do remember several flashbacks though, I remember briefly coming to several times in the car on the way hospital, I was angry, I was shouting at my mum who was slapping me to keep me awake, I was shouting ‘fuck off, leave me alone’. I didn’t want to be saved I just wanted to die and in my eyes they weren’t letting me so I was angry at them for that, at the time anyway. A lot of the next bit is a blur, I remember being in hospital and being taken somewhere in my bed still in and out of consciousness, angry and not letting anyone touch me so they nearly restrained me to the bed. But I remember the porter taking me somewhere and he was praying over my bed, praying that I would survive. I don’t remember much else other than waking up briefly and my mum asking me what I wanted, I asked for my school counsellor and the next thing I knew she was there at my bedside, she then proceeded to wipe away my tears when I was asking her why I was alive, probably the only time in over 4 years that she has seen me cry. It was kept very hush hush what I did because of legal reasons of the country I was living in, but I got visit from my GP and my psychologist and my two best friends.

I was in such a dark place with my depression, caused by the pain I was in all the time, I couldn’t cope and I didn’t want to continue living if all my life was going to consist of was more severe pain and the misery that came with it. I had no hope, no hope that things would ever get better, no hope for my future because I didn’t want the future I could see that was in store for me. And I felt so desperately helpless, it seemed like no one could help and things would always be like this. I had planned my attempt for over a year, I was upset and angry that it hadn’t worked and that I was alive.

Chronic pain/illness can leave us feeling so desperately hopeless, helpless and alone so much so that we don’t want to live anymore and often people become suicidal, I did, I know what it’s like. But I’ve come to see that we don’t have to get better physically to be able to live a happy and full life despite our pain and limitations. There is hope and we can still achieve what we want to achieve. It’s possible even though it may seem like it’s not, I never thought it was but it is and I am proof. You may not recover from the chronic pain/illness but you can recover from depression, it’s not easy but it’s worth it.

To Write Love On Her Arms are a non profit organisation for the awareness of mental health, addiction, self harm and suicide are an organisation that I think are amazing. They are running a campaign right now for National suicide prevention week called No One Else, it’s message is that no one else can play your part, that your story is yours and it is important and people should hear it, you matter and your story matters, your pain and your hope matters. I think that is a very important message for people struggling with depression and things like feeling suicidal.

I don’t feel ashamed of my attempt on my life at all, though it’s not something I tell people I meet it is something I will talk openly about if I want or need to. There is so much stigma around suicide, it is such a taboo subject however it affects millions of people but no one feels able to talk about it for fear of being judged or shunned, I think that needs to change. Yes it’s not a very pleasant subject to talk about but people with depression feel like they can’t talk to anyone about what they are feeling because they fear they will be judged for it, for feeling the way they do, which in turn just makes you more depressed which doesn’t help. 1 in 4 people are affected by mental illness which is a staggering number, but it is a subject that people don’t speak about making the people that suffer feel more and more alone.
Take a moment in your day to smile at someone, to ask someone if they are okay and really mean it, no just one of them  quick ‘Hi, how are you?’ comments where you don’t actually really care for the true answer. It could make all the difference to someone struggling. Be kind, always, for everyone is fighting a battle you know nothing about.

Doctors: Part 2

I went to England hoping that finally I would get some answers as to why I was in pain, mainly. My mum use to do the accounts of a pediatric cardiologist up in London, he recommended a cardiologist for me to see initially. I only saw him once and he was semi alright but after stating that the headache was my biggest problem he decided to refer me off to a neurologist at another hospital in London. I’m not sure what my first impression of this new neurologist was, I didn’t dislike him but I also didn’t particularly like him either. He admitted me to hospital for tests but they were mainly to do with my heart and he started to ignore my biggest problem, I kept having to reiterate the pain to get him to listen. The only thing he did do was refer me to an anesthesiologist who gave me a greater occipital nerve block to see if that would help my pain, it didn’t, which was disappointing to say the least. So then it was back to the neurologist who had got far too caught up in my black outs and heart rate and blood pressure problems , though one of his team thought I may be hypermobile and thus also have POTS. So they decided to refer me to a professor of autonomic dysfunction that she use to work for. By this point it was half way through summer and it wouldn’t be long before I was jetting back off to Dubai to start school again.

The professor was amazing and was actually a really nice guy, he set up tests, 24 hour monitoring, exercise test and tilt table. And after that it was pretty clear to him that I did in fact have POTS. Which was all fine and well but why did I have a never ending headache. He started me on medication, and did another test to see if an injectable medication may help me because my black outs were so frequent and severe, the results came back in that it would help me. So I got put on that and two other medications, which resulted in me becoming stable on the POTS front. Nearing the end of the summer I was very concerned that my headache hadn’t been addressed, that no one was listening to me in that I needed help with the pain, I needed answers. My POTS professor eventually referred me to a headache specialist neurologist at a top hospital for neurology in London. After a full summer of having doctors that didn’t listen when I spoke about the pain being the main problem I had found two highly regarded doctors who were listening and wanted to help, my POTS professor and my new neurologist. My new neurologist was good, he was professional but nice and obviously knew what he was talking about with headaches. He diagnosed me with New Daily Persistent Headache, which is actually what I thought I had through my own research for quite some time. He had lots of ideas and treatment plans of how to approach it. Medications and procedures, and thus began my trips back to London to see him every 3 months. I had medication trials each lasting a minimum of three months, these were preventative medications aiming to reduce my level of pain, if one wasn’t working after three months I went back and got the next one. Over the course of the next two years I tried medication after medication, I tried every type of triptan abortive, I tried nerve blocks, Botox and infusions, but unfortunately none of it worked and each time I left feeling a little more defeated, helpless and hopeless. 

Last November I saw my neurologist and he told me there was nothing more he could do for me because we had exhausted all options and none of them worked. Hearing those words made me feel more defeated and helpless than I have ever felt and it sent me spiraling into an even deeper pit of depression than I was already in.

To be continued…

Doctors: Part 1.

We think that doctors are meant to hold all the answers, that when we get sick they will be able to fix us. Well that’s what I thought before I got sick. They study for years to become doctors, they specialise to become experts in their field and we put our trust in them to be able to fix us or at least help us, because isn’t that what they are meant to do, isn’t that their job?! 

It didn’t take me long to lose all hope and trust in that doctors could fix me or even just help me. Ten days after the onset of my never ending headache I developed numbness tingling and pain in my hands and then my feet, it was only then when I and my parents decided it was time to see a doctor. The doctor I saw was a general practitioner she had no clue what was wrong with me other than to say that I needed to go to the hospital for an MRI scan. So that’s what I did and the next day I saw a neurologist for my results, the neurologist thought I had a tumor on my pituitary gland so admitted me for further investigation and another MRI, this time with contrast. The tumor was ruled out but I still had my headache and weird things with my hands and feet. At this point I placed all my trust in this neurologist and the doctors at the hospital that they would figure out what was wrong with me and fix me. I didn’t question the tests they ordered or the meds they gave me, I was only 15 and I had every faith that they knew what they were doing and I would be fine again soon. After 5 days in hospital and no closer to knowing what was wrong with me as every test came back normal I was discharged and thus begun me losing my faith in doctors. After the weekend I went back for a follow up appointment at the hospital with the neurologist and he basically blew me off, telling me I had a migraine, to take this topamax as it would be my miracle drug and my headache would go and to basically go away. Topamax was never my miracle drug, I’ve tried it twice now, both times it did nothing and that doctor was wrong, I don’t have a migraine. 
I then found a new neurologist, hoping he would be better than the last but he was useless too. He gave me medications to try but none of them worked and after trying each one for a period of time I went back to him to tell him they didn’t work and his basic attitude was ‘What do you expect me to do about it?’ My response to that was confusion, wasn’t he supposed to be a doctor a neurologist at that so surely he was meant to help me so I wasn’t in so much pain. He offered me no suggestions as to what was wrong with me and pretty much was disinterested in helping the girl with a constant headache. Fed up with how I was being treated by him I stopped seeing him and for a period of time I stopped seeing doctors, no one seemed to want to help, I felt helpless and not to mention I was in a lot of pain all of the time. 
That summer I went back to England to see a neurologist there, hoping that this doctor was going to be better than the experience I had already had with the ones in Dubai, it wasn’t. The woman was meant to be a top neurologist however she told me at my appointment that there was nothing wrong with me and I needed to have a restful summer and it would go away, which infuriated me. Safe to say I had a somewhat ‘restful’ summer and by the end of it I was still in pain and that neurologist was definitely an idiot.
I then tried alternative therapies, Osteopathy, cranial osteopathy, rekei and my school counsellor took me to go get acupuncture done as to begin with it seemed very scary then thought of having loads of needles in you. Needless to say there was no need to be scared because it doesn’t hurt at all and is actually very relaxing, I quite like it now. But none of the alternative therapies worked and I was left feeling more helpless. The practice the acupuncturist worked at also had doctors and physical therapists etc at. So the acupuncturist after agreeing that this wasn’t working and if it was going to help it would already have started helping after 10 sessions he gave my case to a GP at the surgery, she reviewed my case and was interested in trying to help me so we set up an appointment. I was shocked she was really nice and it seemed like she genuinely wanted to help me. Though she wasn’t quite sure how she was going to help me. She noticed that I had very low blood pressure and a very high resting heart rate, which is when I told her about the blackouts I had been experiencing since I was 12. She decided to send me to a cardiologist at the American hospital in Dubai as it was the only place in Dubai that had the test she thought I needed, a tilt table. I didn’t like him from the moment I met him and he went on further to annoy me by saying I should take some paracetamol for my headache, which infuriated me. Did he think I hadn’t already tried that months ago, did he think I was completely stupid, I wanted to punch him in the face I was so angry, but I contained myself and didn’t. He ordered tests, an EKG, ECG, and a 24 hour heart rate monitor and then eventually a tilt table test. The tests came back in that I had slight mitral valve prolapse but with no regurgitation, tachycardia and I tested positive on the tilt table test for neurocardiogenic syncope. And I was started on a steroid called Fludrocortisone, the aim of which was to stop me passing out all the time, I’m still on it but in the beginning it didn’t work, it only helps now that it’s combined with the other medications I am on.
At this point despite the annoying cardiologist who I thought was an idiot, I was pleased they had finally found something wrong with me, however I was confused as to how on earth any of this was going to help the pain inside my head, which was without a doubt my biggest problem. I could deal with the blackouts, I’d already been dealing with them for 3 years it was the pain I couldn’t deal with and I felt that was somewhat being forgotten about. However the cardiologist at the American hospital treated me like dirt so eventually I stopped seeing him but continued to take the medication and seeing my new GP, who I actually really liked.
But then my black outs got worse, I would black out over 10 times a day and on multiple occasions I would shake and jerk to the floor like I was having a seizure however it wasn’t epileptic. And my resting heart rate was always through the roof, I couldn’t play sports anymore, I got tired too quickly, as soon as I was to start doing something active my heart rate would sky rocket even more and I would have to stop. So I was sent to the German heart centre in Dubai, I was told there that I needed to stop physical activity like sports because my heart was working overtime and continuing to do so was causing it damage. That was hard to hear because I loved playing sports and didn’t want to stop, but I took the doctors advice and stopped for a bit. He repeated all the tests the previous cardiologist did, but added a 24 hour blood pressure monitor as well as a 24 hour heart rate monitor. I remember having to go to school with it on the next day and having to repeatedly explain what it was to people. The German cardio guy put me on a beta blocker to lower my heart rate and see if that would help, though I had no diagnosis as to what was wrong with me and everyone seemed to have forgotten about the fact that I had a headache all the time. Meanwhile my GP had been doing research and was convinced I had POTS, Postural Orthostatic Tachycardia Syndrome, but knew that no one in Dubai would have the expertise to diagnose me with that or even know what it was, so she suggested I try my luck with going back to England to search for answers. The majority of the doctors I had seen in Dubai seemed to be useless and I felt very helpless that none of them seemed to be able to figure out what was wrong with me, and I was annoyed that everyone seemed to be forgetting my biggest problem; the pain.
This was Spring 2011 and I was very depressed, I had zero friends because they had all ditched me that year, fed up with the girl who was always in pain and was depressed because of it. That year I left school 2 months early to go back to England and no one even noticed I was gone, or if they did they didn’t care enough to get in contact and enquire about where I was or how I was.

To be continued…