The frustration continues…

The driving licence saga continues. First they didn’t receive my GP questionnaire in the post when she sent it, so I got a letter saying they hadn’t got a response. When I received that letter and I picked up the post I thought it was another rejection, it wasn’t thick enough to be a licence and it was thin enough to be a rejection, luckily it was just them asking where the questionnaire was. So I rang the doctors surgery and got them to fax it to them about two weeks ago now. 

This morning I got up and saw there was post on the floor by the door. These letters always come in a brown envelope, and there was one waiting for me to open. Again it wasn’t thick enough to be a licence and was thin enough to be a rejection again so I was worried. I opened it only to find that it was them saying it was going to take at least 12 weeks before I hear anything; get a rejection or a licence. 

12 weeks!! That’s another 3 months before I will potentially be given a licence, this is beyond ridiculous now, I’ve been waiting nearly a year already. My mum is furious, not with me but with the driving authority. I’m pissed off big time, but more so for my mum than me. I start college in September I won’t even have a provisional licence by then meaning my mum will have to drive me 40 minutes there and back twice a day. I’ve applied for a weekend job starting at the end of October, so my mum will also have to drive me there and back as well, if I get the job that is. We are going to Dubai in October half term, I can only stay a week because of college but we were hoping I would be driving by then so that my mum could stay longer than me, but now of course she can’t because I have college and I will have no way to get there without her. 

I feel like I’ve been stabbed in the back because I disclosed my medical conditions, mainly my depression even though that’s almost non existent now but still it’s going to take another 12 weeks to get anywhere. 

Why exercise is the best painkiller.

So as you know if you’ve been following my blog for a while I’m a black belt in Tae Kwon-Do and train at least 5 times a week for an hour and a half to two hours each time. So pretty intense. For some of that time I’m doing some teaching of lower grades both children and adults and for the other part of that time, at least an hour I am training myself. I’m working towards my next level of black belt which is 2nd Dan, currently 1st Dan right now, hoping to be 2nd Dan next April when I take my grading, so right now I’m training pretty hard for that and studying for the theory part of the exam.

You may ask ‘how can you do so much training when you are always in pain?’ The simple fact is, exercise is truly the best pain killer or pain distraction. In my opinion not for the reason that it gets natural endorphin’s flowing, it does but for me that’s not the reason it helps. It’s the distraction, for an hour and a half to two hours I’m not thinking about the pain and it’s truly the best and only relief I get, I’m almost not even aware that I have a headache, I do but I’m not thinking about it. I’m thinking about what I’m doing, getting what I’m teaching right and the training I am doing myself.

I know when you’re in pain all the time it’s pretty hard to motivate yourself to do anything, even the simplest thing as getting out of bed is hard let alone going out and doing a good two hours exercise. I get that I do, because I’ve been there, I know what it’s like. But truly for me the distraction that training gives me is the best thing of my day, hence why I go so often because it’s the only relief I get.

Yeah I have bad days and sometimes it’s so bad I don’t feel able to go even though I really want to. But I have also found if I go when it’s really bad sometimes I’m so angry it’s not really safe for me to do the sparring (fighting) aspect of the sport (there is other aspects it’s not just fighting) purely because I’m so riled up that I fight too heavily, so it’s best that I don’t go. And sometimes it’s so bad that if I even move to do anything it feels like my head is being repeatedly stabbed with a knife and lets just say that that experience isn’t pleasant, so I just don’t go and stay in bed instead where at least not moving isn’t going to make it worse, well I hope anyway, not always the case.

Find something that you love, an interest that you love, doesn’t have to be exercise but anything that is a distraction enough that it gets your mind off of the pain for a while. For me that’s Tae Kwon-Do but for you that may be crafting or painting, anything, as long as it get’s your mind off of the pain which in turn gives you some relief.

1 year anniversary.

So I opened up my wordpress page today only to find a notification that today is my blogs 1 year anniversary. And what a year it has been, it’s been a difficult year to be honest but it’s started to get better. I started this blog a year ago as mainly an outlet for myself to write and on a side note maybe, hopefully help someone along the way by sharing my story. A year ago I had just moved back from Dubai and was horribly depressed and suicidal, most of this year has been difficult and I’ve spent the majority of it depressed and suicidal, up until March of this year where things started to get better.

Therapy is what has got me through this year, lots of it. It’s what has got me feeling a lot better emotionally despite the pain. So much so that now my thoughts are not dominated by the pain the whole time, apart from when it’s severe. Now I often find myself so distracted from the pain that I’m not even thinking about it all the time. Which is a good thing. Yes there are still bad days, bad pain days, but I find I’m able to cope with these better now. I’m able to cope with everything better now.

I’m excited for this next year, armed with my new positive attitude, the fact that I’m feeling more myself than I have in years, starting college in September and the prospect of university after that. For the first time in a long time I’m not fearing the future, I’m looking forward to it and what is to come.

I want to thank all my lovely followers for taking the time to read my posts, for your kind words and your support. I never thought people would actually want to read what I have to say. It is my hope that my writing will help someone one day, that sharing my story for the world to see will help someone. Writing helps me enormous amounts, I never thought I would love to write, but I do and I will continue to do so.

The downside to always searching for a effective treatment/reason.

If one day you got sick and you weren’t getting better, what would you do? If one day you got hit with severe constant headache that didn’t go, what would you do? You’d go to a doctor right because that’s not normal and there has to be something wrong with you and the doctor should be able to fix you, that’s their job, right?

But what if they can’t? What if they can’t find anything wrong with you, yet you still have all these horrible painful symptoms that won’t go away. So you go from doctor to doctor for help, trying various treatments, maybe even eventually getting some diagnosis, yet still you’re sick or in pain or both and the doctors can’t make you better, you are now chronically ill or now suffer from chronic pain. Yet you never give up because there has to be something actually wrong with you, an underlying cause, a reason why you are in pain. From doctor to doctor, treatment to treatment but nothing works and you are still sick and in pain and maybe even now depressed.

I have the diagnosis’ of New Daily Persistent Headache NDPH (my main issue), Postural Orthostatic Tachycardia Syndrome POTS and Ehlers Danlos Syndrome Type 3 EDS3. NDPH means I’ve had a constant severe headache 24/7 since the 14th January 2010, POTS means basically that my heart and blood pressure can’t cope with the force of gravity when I change positions, so my blood pools when I stand up my heart rate races and my blood pressure plummets to compensate and my brain then doesn’t get enough blood/oxygen and I faint and have weird seizure type things, EDS3 means my joints are hypermobile because my connective tissue is faulty leaving me prone to joint pain, partial dislocations, dislocations. My POTS is controlled by medication now so I no longer faint and have seizures multiple times a day, EDS3 I experience quite a bit of joint pain and partial dislocations (subluxations) but luckily I have never fully dislocated a joint and I’ve just started physio to see if that will help my pain and subluxations. My NDPH has been the thing that has affected me the most, as you can imagine having a severe often migraine level headache 24/7 can take it’s toll on a person, and if you read my blog regularly you will already know how badly it has affected me.

I was diagnosed with these three conditions in 2011. Since the beginning of my headache in 2010 I had been searching for answers like any normal person in pain would. But the doctors in Dubai were useless and I was getting no where. So I came back from Dubai for the summer of 2011 to go to London and see a bunch of doctors. I started with a cardiologist even though my main issue was my headache, my GP in Dubai noticed that my resting heart rate was constantly way too fast and my blood pressure way too low. The cardiologist in Dubai was pretty useless, told me I needed to stop exercising as my heart was working too hard and if it continued like that I would go into heart failure. Pretty extreme and not really true. To cut a long story short I went to England saw a cardiologist who didn’t say a lot and then sent me to neurologist for my headache. He was pretty useless also other than the fact that one of his team noticed I was hypermobile, she use to work for a professor of autonomic dysfunction and thought I may have POTS, so they sent me to the professor. After some tests I was diagnosed with POTS but he said my headache was completely unrelated and sent me to a headache specialist, where I was eventually diagnosed with NDPH. He also sent me to a rheumatologist because I was hypermobile and the rheum diagnosed me with EDS3.

Throughout this period of searching for answers I was very depressed and actively self harming. I was then put on meds for my POTS which worked and I became stable POTS wise. And my new neurologist put me on medication trials. Then for a period of 3 years I flew back from Dubai every three months to see my neuro, each medication trial lasted a minimum of 3 months, so every three months I would get reviewed to see if the medication was working, but every time they didn’t work so I got put on a new one and so on and so forth. I got no benefit from any medication, all I got were side effects, extreme fatigue and sleepiness, lost of weight gain, and on one I lost over half the hair on my head which wasn’t pleasant and then there’s the fact that I literally was like a walking zombie because of the meds for three years, they didn’t do me any good. I also tried more aggressive treatments, nerve blocks, botox, and infusions, none of which helped the pain in my head either. And I was just left feeling disappointed, miserable, depressed and exhausted after every failed treatment. Last November I was told there was nothing more my neuro could do for me, which yeah hit me hard and made me more depressed for quite a while as many of you know.

But it was probably for the best. All this searching for answers searching for an effective treatment was exhausting and defeating. When I finally gave up my search, it took a while and a lot of therapy for me to get to a point where I can now say that it was for the best. My neurologist saying that to me was obviously not the best thing ever because the best thing ever would be no pain but it was the best thing he could do for me. My search for an effective treatment wasn’t me living my life, it was me being drugged up on headache preventative meds that were causing me more harm than good, that meant I couldn’t try to live my life despite pain.

There is no answer as to why I always have a headache and as I’ve found for me there is no effective treatment either. So I’ve accepted the pain and I’m learning to live despite it, I spent 4 years searching for answers searching for a treatment that would work so much so that I wasn’t actually living.

Giving up the quest for relief may seem scary, but what if the relief just doesn’t exist, what if there are no meds that will make it better. Ask yourself are you living? Because I wasn’t. It’s normal to search for answers and try to see if it can be fixed, but I suppose you just need to know when enough is enough, when the search is doing you more harm than good, when you are not living a life anymore.

If you suffer from chronic pain you probably think I’m crazy for saying this, but it’s been the best thing for me to stop searching for relief and try to accept my pain and try to live my life despite it.

Achievements.

When suffering from chronic pain/illness it’s important that you recognise your achievements no matter how small. For a long time I believed that I had no achievements in the past 4 and a half years. My school counsellor would always tell me I had loads of achievements and listed off a reel of things, however I never saw this all I saw were my failures, one after another. Several of what I thought my failures were included:
– Not completing school and my A levels
– Only completing one A level when everyone else could do three or four
– Not being able to cope with school
– Trying to kill myself
– Dropping out of school
– Having to move back to England due to my mental health
To me these were huge failures and they dominated my mind for a long time. Now looking back I can see my achievements of that time and my most recent achievements. Some of these include:
– I got out of bed everyday and went to school no matter how I was feeling I turned up (I wasn’t very productive but I went to school everyday without fail)
– I completed my GCSE’s with all grades above a C
– I asked for help by going to see the school counsellor
– Completing one A level despite my circumstances
– I started working helping teach Taekwondo in Dubai for 6 months
– I handed over medication in April 2013 when I had the chance to hoard/take it all
– I came back to England for help
– I started therapy in England
– I stopped self harming
– I threw away a bunch of hoarded medication and chose to live instead
– I gained a new positive outlook
– I accepted the pain and chose to live despite it
– I applied and got into college starting in September
Some of these achievements are small and some life changing. It’s important to recognise both and no matter how small they are. They may be hard to see, it’s only now looking back that I can recognise my achievements, for a long time all I saw was a string of failures. Start with seeing something small as an achievement, like for example something as simple as getting out of bed on a really rough day. If you suffer from chronic pain/illness sometimes getting out of bed can be the hardest thing so really it’s not a small achievement if you get out of bed it’s actually a huge achievement even though you may not see it as that.

For a long time I was so focused on all my failures or rather what I thought were my failures that I couldn’t see any achievements. You may be the same but I guarantee you they are there, you just have to look a little closer.

The longest I’ve been clean.

So I got clean from self harm in October and I haven’t cut since. This isn’t the first time I’ve got clean from it, there have been several, I stop cutting for one reason or another, last a few months and then have a break down and relapse. But this time it has been the longest I have been without cutting, 9 months now, which I guess is pretty good. I don’t even feel the urge to cut anymore it’s not something I want to do anymore or feel compelled and addicted to do. Yeah, sometimes when I see a sharp object I always think what it would be like to cut myself with, I think that but I don’t want to do it or like I said feel compelled to cut with it anymore. It’s just merely my mind wondering, I’ve spoken to recovered self harmers before and one thing one of them said was that even now after being clean for years they always look at sharp objects and wonder what cutting with it would be like. I guess because we know what cutting is like and how it can make you feel we will always wonder. Don’t get me wrong, saying this doesn’t mean I want to start self harming again because I don’t and I don’t even feel the urge to when things start to head south. I’m quite proud of myself that I’ve been clean for 9 months, before that I spent the ‘best’ part of 4 years self harming so for me this is quite an achievement.

Things are moving forward in my life at the minute, I’ve got a college interview on Wednesday at the other college I applied to, probably will decline the offer if I get one but I’m going to the interview anyway as you never know. I might be applying for a job at a local supermarket for some part time weekends work starting in September, however whether I will get the job is a whole other story. The supermarket are expanding and taking on another 120 people, so there is 120 jobs going, so I’m going to apply and see where it goes.

And then I have some really exciting Tae Kwon Do news, I can’t share it all with you guys because it’s top secret, but my instructor wants me to take my instructors qualification, I took three lessons on my own last week whilst my instructor was on holiday and I did a really good job, my instructor heard from several people that they were really impressed with me and I was very mature when handling the very naughty children that I was teaching. Really excited about the fact that my instructor thinks I’m good enough to take my instructors, you have to understand it’s taken me a lot to get here. I started Tae Kwon Do when I was 8, I got my black belt when was 13, but I was an absolute nightmare to teach, I messed around, I didn’t do it properly and I certainly didn’t put any sort of effort into anything. It wasn’t just me I had a group of friends there who were exactly the same and we kind of fueled each other, but I’m the only one who stuck with it and is still training. But my instructor refers to me as one of the worst he has ever taught, I don’t mind because I train bloody hard now, do it properly and to the best of my ability; which is high, and if I do say so myself now pretty darn good. He uses me as an example of comparing me to how I use to be and then what I’m like now, basically I just grew up and grew to love the sport, so much I train five times a week. So it makes me extremely happy and excited that I’m now considered good enough to take my instructors and not to mention take my 2nd Dan (next level of black belt) in April. It gets a lot better but I have to refrain myself from telling anyone, so I guess you will just have to wait on that one!

Physio.

Yesterday I went to London for my first physio appointment. It went well, the woman I saw was really nice, she asked me about all my medical history and what brought me there today so I spent a good while explaining that to her. Then we discussed my affected joints and the problems and pain I have been having with them. She then asked me to change into shorts so she could assess my joints and how I move. 

She said that I have really strong rectus abdominals, because well that’s kind of obvious as I actually have a six pack, but she said the muscle underneath my bottom abdominal that joins onto the pubic bone and extends all round the hips and lower back is very weak. She said that this needs to be stronger in order to support my hips and back and before she can start work on trying to prevent the pain in my hips and prevent them from constantly subluxing (partial dislocation). She looked at my knees another area I have problems with and noted that when I squat or bend down my knees don’t go down straight they bend inwards, which I never knew I did before she pointed it out. 

So she has given me a load of exercises to strengthen this muscle and I have to do them everyday and see how I get on and then make another appointment to go back up for another session in 2-3 weeks depending on how I progress with these exercises. 

My hips and knees were killing me with pain yesterday after I got back from London, all evening and night and I had real trouble getting to sleep even with the meds I take to help me sleep. Ended up having to take some paracetamol which seemed to ease the pain a bit so that I could get to sleep. Hopefully these physio sessions will help because joint pain on top of my headache is a lot of pain to deal with.