Safe to say I’m a little bit excited.

Tomorrow I am competing in the 40th anniversary South West of England Tae Kwon-Do Championships and I’m quite excited about it. I’ve been a black belt since 2007 but the last time I competed in a competition was about a year before I got my black belt, so quite a long time ago now. I usually officiate at competitions now as I’m required to officiate at several a year in order to qualify to grade for my next Dan this coming October. However I thought that I would put myself out there and have a go at competing at black belt level, which isn’t easy to say the least. The competition is tough because there is such a high standard at black belt especially with me now being in the adult range. Though I am in the lightweight division so will be up against people of a similar weight and size to me. I’m not expecting to place, though that would be a welcomed surprise. I like to think I’m quite good at Tae Kwon-Do, actually it’s probably the only thing I’m good at, so I’m just going to try my best and see how far I get. I’m competing in 3 different aspects of Tae Kwon-Do, patterns; which is like a set sequence of moves and there is a pattern for each coloured belt and 3 black belt patterns for my Dan grade. I’m going to be doing one of my black belt patterns which has 44 movements, so hopefully I won’t mess it up! Then I’m competing in Sparring; which is the fighting element of Tae Kwon-Do, so I will be up against black belt women under 55kg, hopefully I won’t get too beaten up. Also competing in a Tag team sparring event with my instructor and his son who is also a black belt, so looking forward to that as well.

From my club there are about 20 of us going, about half competing and half are black belts who are officiating. The competition is held about 2 hours away from us, so have to leave pretty early in the morning to get there before 9am, and then it is likely that it won’t finish till the evening, so it’s a long day. However I’m looking forward to the experience, competing and supporting the people from my club.

Hoping for a relatively good pain day tomorrow, been preparing for the competition by having lots of rest, self care, sleep and of course training hard. I’m excited for tomorrow, and whatever the outcome I will be pleased and proud of myself just for taking part despite chronic pain and illness.

Time to get back on track; this time I mean it!

So in the wake of the disappointment that was Cefaly, I got quite depressed again and could feel myself going further and further down hill. However I have decided to turn it all around, I have decided I want to get better again, not the pain (that would be ideal but lets be realistic) but the depression part, the feeling okay despite pain and illness, the living a good life despite pain. Accepting my illness but trying to lead a positive and good life despite it. This is the starting point that I needed to hit, I needed to make a conscious decision to get better otherwise it was never going to happen and I would just continue being miserable and depressed because that was easy and recovery is hard. I was in that place during last spring/summer and it was good, I was still in pain but I could cope with it, I didn’t let it pull me under and I fought to get better and live a better life despite the pain I have been given. I want to get back there now, and I’m going to fight for recovery from depression.

Yesterday I devised a somewhat plan, well it’s more like a tick sheet. It’s a table, it consists of everything I need to incorporate into my day, pain management techniques like mindfulness and relaxation, things I enjoy like watching a TV show, going to Tae Kwon-Do training, which also classes as pain management, things I’m working towards like college work andTae Kwon-Do theory, to name a few examples. Also included is boxes to make sure I take all my POTS medication each day as I am notoriously bad for missing doses and eating breakfast, lunch and dinner after my brief episode of hardly eating. I don’t have to do everything every day some days are crossed out for certain activities, in that I don’t have to do them on that particular day and there is a column of goal number of times a week I am meant to do each activity, and then the actual number of times I did the activity each week column. There are about 18 things on my tick list to do, not all to be done every day, and when I do the activity it doesn’t have to be done that long, take reading for example, could only be 5 or 10 minutes a day and that is fine, or Tae Kwon-Do theory studying, 10-15 minutes is fine. Every activity has to be paced and if it needs to be done for more than 20 minutes there has to be a break every 20 minutes in that activity. I tick off the activities or tasks as I do them, and don’t beat myself up if I don’t manage to incorporate everything in each day. I feel like this may work, so far today it has kept me relatively busy but there has been lots of periods of rest in-between activities or tasks. I’m aware that doing too much will be counter productive but most of my tasks/activities on my list are small things that don’t last particularly long, mixed in with a couple of longer ones like Tae Kwon-Do training and college work. I work well with lists rather than planning what I’m doing every hour because then I tend to just not do what I’ve planned to do, this way it doesn’t matter when I do the activity in the day. So for the time being this tick list is going to be my guide until incorporating all my pain management techniques in my life become second nature again.

I’m going to pull myself out of this hole I seemed to have dug for myself and into living my life despite pain and achieving things despite pain. This way of natural pain management and acceptance worked before and it will work again. I am a work in progress, but I will get there, there may be some bad days but that is expected when you have chronic pain but not every day has to be bad. I know recovery is hard because I have done it before, but it was worth it for how much better I was feeling despite being in pain and I want to feel like that again. This is the starting point.

Bad news unfortunately.

It’s been over a week since I last posted, I needed some time to figure out what was going on. Cefaly was initially helping, but that didn’t last long at all. Less than a week actually before my Cefaly’s effectiveness seemed to ware off. Been using it just as much, but now when the program has finished my pain levels aren’t any better and a couple of times this week they have even been worse than before I started the program. I know plenty of people it has helped, but unfortunately it looks like I’m not one of them, though they are mostly chronic migraine rather than NDPH sufferers.

Disappointed would be an understatement to be honest, and I’m angry at myself. Angry because I let myself hope, initially I had no expectations about Cefaly, well actually I was pretty convinced it wasn’t going to help. But then it seemed to start helping and I let myself hope that maybe this was the answer to everything, that this was my magical miracle treatment and things would only get better. However it turns out that this wasn’t the magical miracle treatment for me, and I’m just left with the terrible disappointment that I swore to myself ages ago I would never inflict on myself ever again. I’m angry at myself for letting myself hope, for allowing myself to get disappointed again by trying another treatment. I honestly don’t know why I bother, no treatment ever helps and after I am just left disappointed and trying to hold myself together in the deep dark pit that is the disappointment of yet another failed treatment. I dug myself this hole by trying this treatment, but I don’t know how I’m going to get myself back out of it.

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.

Latest accessory to combat the pain; Cefaly.

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Cefaly is a device which is like an external stimulator mainly designed to treat migraine conditions, and also to relieve stress. As you can see from the picture of me wearing it above it is like a plastic frame you wear around your forehead attached to an electrode stuck in the middle of your forehead just above your eyebrows. The device stimulates the Trigeminal nerve and attempts to decrease head pain in conditions like migraine. There isn’t much research done on if it is helpful for NDPH patients however I know a few that use it and say it has helped some. It isn’t a cure and can take a few weeks or a month or so to see if it has any effect, so like most treatments really. It’s relatively new to the market and has to be bought privately, and if you are in the US you need a prescription to get one. However in the UK you can just order it online and have it delivered right to your door, though it’s not exactly cheap.

At my last appointment with my neurologist in November he said it was the only thing left to try and that it might be worth me getting one. So after Christmas my parents ordered it for me and it arrived unexpectedly this morning whilst I was at college. My neurologist said I would need an appointment with his nurse to be taught how to use the device, but after reading the instruction manual it came with and speaking to some migraine sufferers online, I decided that an appointment and a trip to London would not only be a waste of time for something so simple but also a waste of money. So I went ahead and tried it out.

The UK device differs from the US device which only has one program, whereas the Uk one has 3, abort, prevent and stress relief. The programs last 20 minutes, with for the first 12 minutes the intensity increasing till it reaches the maximum intensity for that program at 12 minutes in. You can put a hold on the intensity increasing by pressing the button and it will stick at the intensity you stopped it at for the rest of the 20 minutes. I followed what the instructions said and started on the abort, program 1, which happens to be the most intense setting.
It was a very strange feeling to start with, my forehead and eyebrows felt all tingly and pins and needles like, and then my eyebrows were going to fall off (I know, weird right!) and then came this intense pressure inside my head and intense pain. It was almost unbearable, however I suffered through it and managed to complete the full 20 minute program without having to put a hold on the intensity increasing. By this point I was in a lot of pain and very scared that when the device finished it’s program I would be stuck in the same amount of pain that I was in during the program, that Cefaly had made it worse. The program eased off and then eventually turned off and luckily my pain levels went back down to what they were before I started the program, which was a huge relief.

I was very scared that maybe Cefaly wasn’t for me, that the pain I experienced during the program wasn’t normal. However I then spoke to some migraine sufferers online and they said that my reaction to it was completely normal, that it is normal for it to be quite painful the first time round. However they did say that I should have started on the lower intensity setting, program 3 for stress relief, and also that I should have put a hold on the intensity increasing after a few minutes and not completing the whole 20 minutes. I was advised to have a break and have another go later but this time at the lower setting and not the full 20 minutes.
I have just completed my second attempt, it wasn’t quite as horrific as the first time, but it was still quite painful. I think I just need some time to get use to the stimulation of the nerves. A few migraine sufferers I have spoke to say that it has really helped them and some that they can’t cope without it. A lot of people who use it say it’s very relaxing, personally I don’t see that quite yet but you never know. I am skeptical that it will help me, but there is always a possibility and I pride myself of doing anything and everything to attempt to decrease my pain, so I couldn’t not try it. Though I don’t want to get my hopes up because I know the disappointment of failed treatments all too well, and it’s not very pleasant to say the least.

I will keep you posted on my progress with Cefaly, but I envision that it is going to take me a little while to get use to it and even longer to know whether it has helped any.

Maybe my brain does work properly after all.

Before Christmas my first law assignment for college was due, a day before the deadline and I only had less than a 100 words out of the 1100 word limit. Against my better judgement I sat down for 6 hours with minimal breaks to get it done, of course I paid for that afterwards, but needs must, it had to be done for hand in day the following morning. I have really been struggling with college, and feeling like my brain no longer works properly, that it has just turned to mush. I have been feeling really stupid and with a severe lack of concentration because of the pain. I managed to complete my assignment on time for hand in day after a very stressful 6 hours working on it, however I was convinced it wasn’t very good and that it was not good enough to pass. The first assignment is pass or fail, and I was adamant that I had failed it.

Today my law teacher emailed me my results, and I passed! He said that if the assignment was graded I would have got a distinction, the highest mark you can get! Completely shocked and thrilled; maybe my brain does work properly after all.

I had a horrible day yesterday, feeling miserable and depressed beyond words and the pain was severe, I retreated to my bed and didn’t leave all day. So this was some really good news that I needed to prove to myself that I can do things, that I’m not stupid, and most of all that clearly my brain must be working properly even though a lot of the time it doesn’t feel like it does.

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.