Liebster Award

So I’ve been nominated for this award three times before, but last night I received two more nominations from two lovely bloggers, Emily and Skylar.
I always feel very honored that people think my blog is worthy of a award, so thank you.

As a nominee, one has to carry out the following tasks:

1. Thank the person who nominated you for the award
2. Display the banner/sticker/logo on your blog
3. Answer the questions the award giver asked
4. List 11 facts about yourself
5. List your 11 nominees. Supposed to be with 200 followers or less. No tagbacks.

However because I have been nominated for this award several times now I’m not going to nominate anyone this time. But I will answer all the questions.

11 facts about myself:
1. I’m 20 years old.
2. I’m English but I lived in Dubai for 5 years from 2008-2013 and it was great. My Dad and sister still live there so I go out to visit a lot.
3. I have two chronic pain conditions; New Daily Persistent Headache and Elhers Danlos Syndrome and one chronic illness called Postural Orthostatic Tachycardia Syndrome.
4. I take meds to control my POTS so I can function properly without passing out and having seizures all the time. But I no longer take meds for my NDPH due to the fact nothing ever helped and then I ran out of meds to try. But it has been the best thing for me all the meds ever did was give me side effects and no benefit. And instead I have learnt acceptance and mindfulness and have been trying to live a happy life despite pain and move on with my life from the pain that was holding me back for so long.
5. I’ve recently recovered from depression which was pretty severe due to my NDPH, but I’m feeling a lot better now than I have in years.
6. I had to drop out of school before fully completing high school due to my NDPH, but I’m going back to school in September to get qualifications to be able to (hopefully) go to university, and I’m really looking forward to it.
7. I want to study Psychology at university, I want to be able to help someone struggling with issues that I have struggled with.
8. I’m a black belt in Tae Kwon-Do and train at least 5 times a week.
9. I have a sister who is 3 years younger than me.
10. I have a yellow labrador named Bailey she is nearly 3.
11. I love to blog.

Emily asked me:
1. What was your favorite subject in school?
Physical Education.

2. What’s one of the scariest things you’ve ever done?
Looking back now it would probably have to be trying to kill myself and waking up in the ICU in hospital.

3. What accomplishment are you most proud of?
Trying to live my life despite chronic pain.

4. Worst habit?
Picking my lips, it’s awful.

5. What were you like in high school?
Most of my high school years I have been sick and in chronic pain, which is a pretty hard thing to deal with, I was also severely depressed so because of all that my high school years were pretty terrible and I wasn’t myself.

6. What are you afraid of?
Going back to the deep dark pit of depression I was in for years.

7. Given the choice of anyone in the world, whom would you want as a dinner guest?
J.K. Rowling (Bit of a Harry Potter fan)

8. What is your favorite book?
Chocolate & Vicodin: My quest or relief from the headache that wouldn’t go away.
It’s a book about a woman who has NDPH and her experience with it, I literally felt like she was describing myself and my thoughts when I read it, have even underlined all my favourite quotes in my copy and re read it regularly. Would really recommend it to anyone, headache condition or not, it’s an excellent read.

9. What one thing would you change if you had to do it over?
If I could change it (I can’t and that’s okay, but in a perfect world) not getting NDPH.

10. What has been your biggest challenge?
I recently did a charity cooking event with my friend, for a breast cancer charity. We did a pop up restaurant and cooked a 4 course Indian meal on three nights for 19 people each night. It was a great experience and we raised over £1,200 for the charity.

11. What’s your middle name?
Anna

Skylar asked me:

1. Three things you’re passionate about?
Tae Kwon-Do, Psychology and blogging

2. If you could relive a day or an event which would you choose and why?
Yesterday was actually a pretty great day, I was up in North Wales with my family visiting my Dads family. My Dads classic car which is a 1963 MG lives up there with my granddad who looks after it. And because my provisional licence finally came through my Dad let me have a go driving it and it was literally the best thing ever and pretty much a dream come true being able to drive that car.

3. Coffee or Tea?
Tea

4. Coke/Pepsi?
Coke

5. Earliest childhood memory?
Honestly can’t remember much from my childhood and I’m honestly not sure I can pinpoint an earliest memory.

6. Favourite pass time?
Does Tae Kwon-Do count?

7. Most exciting place you’ve visited?
Kenya

8. The last thing you ate prior to answering these questions?
Half a pizza

9. What’s playing on the radio now?
Not sure, not listening to anything.

10. If you could change one thing about your life what would it be?
Being completely honest I would say suffering from chronic pain.

Like I said not going to nominate anyone as I’ve done it twice before. But very honored people think my blog is worthy of an award. I love blogging and it always makes me happy when people enjoy reading my posts, so thank you.

Off to visit some family.

So tomorrow me and my family are taking a road trip to North Wales where my Dad is from, it’s about a 6 hour drive from where we live in the South of England. It’s always quite a stressful trip, not the journey there but actually being there and visiting all my family. We are there for 3 nights, so 2 full days of going from relative to relatives house and being force fed tea and cake at each house you visit and if you don’t have any it’s rude. And then there’s the fact that in North Wales they speak Welsh, my Dad speaks it and so do all my relatives up there so they are chatting away in Welsh the whole time, a language me, my sister and my mum don’t speak, other than knowing a few greetings and things like ‘would you like a cup of tea?’ and ‘thank you’. And it’s generally very boring and tiring visiting family all day and listening to them all speak Welsh, don’t get me wrong it’s nice to see them, but it’s just a bit draining.

Family trips since getting sick have always been quite a struggle for me. This isn’t really a holiday it’s more like just visiting family all day which in itself is quite tiring. But every time I go on some sort of family trip it’s always been a bit of a trigger for me, pain wise and depression wise. They have sent me spiraling downhill in the past. Hopefully with how I’m feeling now it won’t be too bad.

And then there’s the fact I have hundreds of scars all over my arms that the family I’m visiting have never seen before, and plus it’s summer and rather warm here in the UK at the minute. I wear short sleeves all the time, my scars don’t really bother me, well most of the time. I hide them for some things but generally most of the time I don’t because I really don’t care what the general public think of me, they have no idea what I’ve been through. But I’m kind of in two minds about letting my family on my Dads side in North Wales see them. So I’ve packed a cardigan so I have the option not to reveal them if I don’t want to.

Having no direction in life.

Chronic pain/illness is a life changing experience. We lose so much; our health, family, friends, independence, happiness, ourselves etc. Sometimes it seems like we have no direction in life, all our life revolves around is our pain and our illness and everything that brings. We often lose a sense of hope, hope that things will get better because at the time it seems like things will never get better because we will always be sick. We wake up every morning in pain, we spend all day in pain and we go to bed in pain, day after day, year after year, it’s hard and it’s soul destroying. It seems like nothing will ever get better and maybe the pain or illness never will, but does that mean we have to let it destroy us and make us feel like we have no direction in life?

For a long time I had no direction in my life and that was sometimes one of the hardest things. My days consisted of getting up late, and then staying in bed for the rest of the day unless I had therapy to go to, which at the time was once a week. I didn’t have any plans for the future because well I didn’t even see a future for myself, and I didn’t want the future that I saw for myself at the time, which all it consisted of was pain and misery. All I saw for my future was staying in bed and living off my parents indefinitely, which made me feel even more miserable.

When I was finally able to try and accept my condition and felt ready to move on from the misery that was holding me back I decided I needed to do something. It’s all very well that I felt ready to accept my condition but I had to put something in place to be able to move forward with my life. Going back to school was the logical thing to do. I never completed high school so I have next to no qualifications to do anything with, like get into university. So I’m going to college in September to get the relevant qualifications to be able to go to university.
Now I’m feeling so much better emotionally and now have something in place to be able to move forward positively with my life instead of having no direction whatsoever. I’m looking forward to my future despite the pain that has held me back for so long. And I’m excited to start college in September. I don’t ever want to go back to that dark place, that place of having no direction.

A lot of people have asked me how I do this when I’m in pain constantly, I’ve had a lot of people online tell me they are proud of me and I’m an inspiration, which makes me feel pretty good to be honest. The simple mater of fact is that, I’m in pain 24/7 I can either choose to succumb to the pain like I did for 4 years and continue to let it destroy everything or I can try to live my life as best as possible despite the pain. And yeah I will have bad days (and I’ve had a hell of a lot recently) but on those days I can choose to let it get me down or I can just accept that it is a bad day, try and do what I can, break things up with rest breaks and hope that tomorrow won’t be quite as bad.
I came across a quote the other day and I wrote about it in a previous post, not quite sure who it’s by. But it’s about the fact that if you are having a bad day and you think there is no way possible you can get through it. If you think about it your track record of getting through bad days like this before is 100% because you’re here today. And I think that is really important to remember, every time I have a bad day now I think of that quote and it just reminds me that it’s not impossible to get through today because well I’ve done it hundreds of times before and you have too.

Greatest day ever, well for a while.

So if you read my blog regularly you will know of my struggles with the driving authority getting a provisional licence so I can learnt to drive. If you don’t know I will summarise now. Basically I can drive in Dubai (where I use to live) as I learnt there, but I learnt on an automatic car and a Dubai licence isn’t transferable to a UK licence. So I had to start the whole process again. I applied and disclosed all my medical information, and they declined my application due to my psychiatric issues (depression). I then got my psychologist, GP and local mental health team to write to them saying I was safe to drive and was invited to reapply. So I did that and went through the whole process of applying again with medical forms and questionnaires to my GP. I got a letter 2 weeks ago saying it would be at least a 12 week wait before I get a decision. I was angry but there was nothing I could do to speed up the process. I felt like I had been stabbed in the back, I told them my medical issues I could have easily lied and it would’ve taken me less than 2 weeks to get a provisional out of them but I didn’t. I told them about them all, and then I recovered mostly from depression but I was still waiting on hearing back from them, even though I am and always have been safe to drive. I first applied for this licence nearly a year ago now. It had been nearly a whole year and I still hadn’t gotten a provisional licence, the licence you need here before you can learn to drive.

Today the post came. I saw two brown envelopes (the drivers authority always use brown envelopes, so I knew it was them) One was thin and the other a bit thicker, the thin one was thin enough to be a rejection. I wasn’t expecting anything from them as they said at least 12 weeks so I was convinced that it was a rejection again.

I opened it and it said ‘You meet the legal medical standards for being able to drive your licence will be posted out to you in the next 14 days’ I was thrilled, finally I had got a provisional after all that time. So I opened the next letter and there it was, my provisional licence card.
I FINALLY GOT IT!
Absolutely thrilled, I screamed upstairs to my sister as she was the only one in, and then I literally jumped around the house for about an hour.
So happy, got my first driving lesson on a manual car tomorrow afternoon and we will go from there. Got to learn loads of theory and book my theory test also. But hopefully it won’t be long before I have my full licence and I’m driving!!!

And as if the day couldn’t get any better, this afternoon I received an email from the company of the job I applied for and I’m being offered an interview in a week and a half’s time.

All topped off with my Dad arriving for two weeks from Dubai this evening and had a nice family BBQ, which I cooked.

So all in all a very good day! Happy Sian!

Bad day.

Today is a bad pain day, I’ve had quite a few recently. Actually more than quite a few, the majority of days in the past 2 weeks have been bad. Today I got up at half 11, so pretty late but I had a busy day up in London yesterday for physio and I didn’t go to bed till pretty late last night.

When I woke the pain wasn’t too bad but since then it has just been building and building up and now I’m at an 8 on the pain scale. I feel like my brain is being crushed, it feels sharp and it’s radiating down my face, it hurts to keep my eyes open and there is nothing can do but sit with my pain. In the past this would have really got me down, I’d lie in bed in pain feeling so miserable and depressed and just wanting to die. Now I’m led in bed in pain but not feeling so miserable and depressed and I don’t want to die because there is so much I want to do, go to college, go to university, make a positive impact on someone struggling like I have struggled.

Today has been and still is a challenge to get through because the pain is so bad. It’s a challenge to think positively when I’m in so much pain. It is a challenge to keep my acceptance of my pain when it gets so bad. But this is just one bad day of hundreds that I have got through so I know without a doubt that I can get through the rest of the day and then maybe the pain won’t be quite as bad tomorrow, hopefully anyway.

Is it all in your head?

Firstly I’m going to start off by saying no! Because it most definitely is not all in your head.

I haven’t talked much about the time when I first got sick before, it feels like a lifetime ago to be honest, and it kind of was. Getting sick changed me, I was no longer the same person, I didn’t feel like the same person and I never thought I was going to get that back if I never recovered from chronic pain. Clearly I was wrong, I haven’t recovered from chronic pain, but I feel more myself than I have since I got sick.

I remember how it all started so vividly. It started in January 2010. I was in year 11 of school (UK system), I went to school on the 12th Jan 2010 and came home with a pretty bad headache. I got home, took some over the counter medications and went to bed and by morning I was feeling fine again. Same thing happened on the 13th.
And then on the 14th I was sitting in the computer lab after school with my Physical Education class finishing some coursework when I got a severe headache which hit out of no where. My friend went to the nurses office and got me some paracetamol and then I went home to try and sleep it off. But when I woke in the morning it was still there to greet me. I’d never had a headache that lasted more than a few hours, tops a day before. But to be honest in the beginning I didn’t think much of it. The weekend was then over and I still had a headache. I then went to school all week still with the same horrendous headache. After 10 days of this I started to get this numbness, tingling and pain in my hands and then my feet. But me being me I went to school anyway. I remember sitting in class and not being able to write because of the pain in my hands. I remember standing outside the art room waiting for class to begin and my tutor walked past and saw me, I must have looked pretty bad because he took me straight to the nurses office. I then eventually went to see a doctor who sent me straight to hospital for my first MRI. Went back the next day to see a neurologist for my results who admitted me to hospital as he thought I had a tumor on my pituitary gland. I then had a further MRI which ruled that out. I stayed in for a week being given numerous drugs none of which alleviated the pain in my head, though the numbness, tingling and pain went (though it was never figured out what that was but it hasn’t since come back). After a week I was discharged still in pain and with no answers as to what was wrong with me. And well you know the rest, 4 and a half years later and I’m still in pain with no answers.

But I thought I was crazy, I thought that it was all in my head. Because, well no one could see what was wrong with me, no tests came back with anything wrong with me, no medications helped my pain. So it must be all in my head right?!

See the thing with having a constant headache is that the pain is in your head, where you think. You can’t escape it because it’s in the place where all your thoughts are, everything is clouded by the pain in your head. So yes literally it is all in my head, because that’s where my pain is, but I am not imagining it, my pain is real, I know that and I believe that.
I searched for 4 years for an answer to my pain, every test gave me that little bit of hope of ‘please let there be something wrong with me, I don’t care how bad it is, I just need something to be wrong with me so I know it’s not all in my head’. But every test came back clean and every medication and procedure failed to help. And that wears you down, physically and certainly emotionally.

But I don’t need an answer anymore, I don’t need to know why, because I can cope with this, I cope every day; somehow anyway.
It’s a scary thing to accept your pain and be at peace with it, it’s not easy at all. But accepting my pain has allowed me to move forward from the deep dark place I was in with no direction in my life. Literally I spent day after day in bed feeling miserable because I was in pain. But I changed that, I didn’t change the pain because that can’t be changed but I changed how I respond to the pain in my head. I could have easily let it continue to destroy me and would have probably ended up dead with the way I was going. I chose to be able to move forward with my life, to not let the pain control and define me any longer.

If you’re reading this and you’re struggling, know that you’ve coped this far through all the bad days which you thought would never end, but somehow you got through them. If you’re still here, you’re track record of getting through the days that seem impossible to get through at the time is 100%. And that is an achievement in itself.

For the first time in over 4 years I am out of therapy.

I’ve been in therapy almost as long as I’ve been sick.
I started seeing my school counsellor a few months after I got sick and started to go downhill mood wise. Not long after that my school counsellor thought I needed more than just her so sent me to her supervisor. I saw the two of them every week for over 3 years. I then moved back to England and had the NHS mental health service, which I will add was rubbish. But then I found a psychologist privately that specialised in treating people with chronic pain and in pain management techniques. From September up until April I was seeing her every week, when I started to feel better we started cutting it down to every 2 weeks, then three weeks ago we cut it down to 3 week gaps. I went today and after discussing how I have been over the past 3 weeks and that I’m doing so well we mutually decided that I didn’t need to see her anymore because I’m doing so well.

It feels pretty weird to be out, to be well enough that I don’t need it anymore, but it feels good too and I’m pretty pleased with myself to be honest. Though a bit scared to be out also, I can go back if I need to but hopefully I won’t. My psychologist said I could email her if I needed to and to let her know how things go with college etc. And my school counsellor who has been there for me through everything is still there for me on the other end of an email or a text and I know she will always be there for me.

I am now officially out of therapy for the first time in over 4 years.