I’m so ridiculously tired of life. (no need to worry I’m not going to do anything stupid). I’m just so tired of everything, and I’ve had enough. I’m nearly 20 and I’ve had the most part of my teenage years ripped away from me because of this illness. Instead of being able to live my life and do normal teenager things I have to deal with more pain than I ever imagined existed.
I’m meant to be sticking to a timetable of my day at the minute, every hour of the timetable has to be filled with something different, it was really hard to make but I made it. And it’s to include the studying I’m meant to be doing at the minute. I’m just having a hard time sticking to it. Actually to be honest there hasn’t been a single day that I’ve stuck to since I last saw my psychologist a week and a half ago when we discussed it. My excuse being we (me and my mum) have been decorating my room which has taken up most of the week. But I know if I had tried harder I could have tried to stick to it a bit better. I’m just having a hard time motivating myself for anything at the minute. Everything just seems so pointless. I haven’t been to taekwondo my usual six times a week as I just haven’t really felt like going. I’ve got an umpires course for it next Saturday which I really can’t be bothered with. It’s about a 4 hour drive up north to get to the place where it’s held so me and my mum are staying up there the night before so she doesn’t have to do the drive there and back in a day. But it’s like a 5 hour course and I need to do it, and I am going to do it, (we’ve paid and booked a hotel so there’s no backing out now) but I just don’t really feel like going. I don’t really feel like doing anything at the minute to be honest.
I’m having a hard time feeling anything at the minute. I just feel so empty and numb. I’m tired of living a life where all it consists of is pain, suffering, misery and at the minute numbness. Because what is the point if this is all it’s ever going to be, I just don’t see it. And I just feel really alone. I’m tired of this miserable excuse for a life, it’s not a life it’s merely existing and what’s the point in that.
Not feeling so great, I feel kind of distanced and emotionally numb. I’ve had a bad week had the anniversary which was hard and then my drivers licence got declined, and for a short while I was angry about that but now I just feel numb. I think I just felt so overwhelmed with everything it being 4 years and all that so I’ve just shut down completely and can’t feel anything. I thought I was starting to feel ‘normal’ people ill, as on Saturday I was feeling very spaced out and distanced. But it’s just turned into numbness. I can feel the pain but at the minute that’s all I’m feeling. It’s like there’s just nothing else there now.
I don’t really feel able to tell my psychologist or care coordinator this at the minute as I need them to write a letter saying I’m safe to drive (which I am by the way) but I don’t want to give them any reason to doubt that. So I can’t really tell anyone yet and I don’t know what to do.
So got a letter today from the DVLA saying my application for a provisional drivers licence has been denied due to psychiatric illness. I had to fill in a load of medical forms when I applied about my POTS and my mental health, I gave them the details of my GP, POTS consultant, psychologist and local mental health team for them to contact. I find out today that they only contacted my GP, who wrote back to them about my fitness to drive, presumably she didn’t say anything good, as I’ve been denied, but she is calling me on Tuesday and I’m going to ask what she actually said to them. They didn’t contact my psychologist or local mental health team, and if they had I probably wouldn’t have got denied as I know they would’ve said that I am fit to drive and fully support me getting a drivers licence.
I’m furious, if they had just contacted the contacts I had given them this probably wouldn’t have happened. But they only went a bloody contacted my GP who I’ve seen maybe five times tops, and that was when my mental health was at it’s worse. If they had contacted the people who actually look after my mental health they would have seen that I’m fit to drive.
On the letter I received today the last paragraph said that if I had any additional information for them about my fitness to drive to send it to them and it would be considered. I rang up the DVLA an hour ago to ask them about it all, they said that they had got enough information from my GP to make a decision. The mind boggles as to why they can make a decision about a persons fitness to drive without even speaking to said person. So I’m getting my psychologist to write to them and my care coordinator saying they think I’m fit to drive and that they fully support me in getting a drivers licence. And hopefully that will get my case reconsidered, but the woman on the phone said there were no guarantees that it would make a difference.
If I can’t get my case reconsidered I will have to wait another 6 months before I can apply again. Which means another 6 months of my mum driving me around and me not being able to stay in England if my mum wants to go to Dubai because I won’t be able to drive and I live in a remote village so would be housebound the entire time my mum was away.
I’m so angry. Not having a good week at all!
So the day has come around again. 4 years ago to this day I developed a severe headache which never left. Who knew people could suffer from never ending headaches, I never knew New Daily Persistent Headache existed until I got hit with it 4 years ago. But the condition effects hundreds of people worldwide, yet has very little research, or funding for research, and very little treatment. There is no set treatment for NDPH, you just have to dip in and out of medications used for other conditions in hope that they will help. But NDPH is the most resistant form of headache condition to treat. It often doesn’t react to the medications which are trying to help but most of the time don’t. In my case I have tried all the available medications none of which made an impact. I’ve tried more aggressive forms of treatment, nerve blocks, botox, DHE; no impact on the pain. I’ve tried alternative treatments, acupuncture, osteopathy, massage, acupressure, hypnosis and rekei; and none of these had any impact on the pain either. I’ve now got to the point where I have tried absolutely everything there is to offer for this condition and there is nothing more my neurologist can do to help me. I’m on the waiting/funding list for occipital nerve stimulation surgery, though due to funding issues with the NHS this surgery is under decision about whether or not it’s going to be funded by the NHS at all. If it is the wait is going to be about 2 years before it’s done, if it’s not well then there really is no hope at all.
It’s been 4 years, which if you think about it is a long time to be in pain for with no relief. Over 4 years ago now I was a normal happy care free teenager, now I’m in pain, depressed, miserable and have had most of my teenage years taken away from me that I will never get back. I’m feeling very miserable today because of it’s anniversary, the day just reinforces everything bad, reinforces that I’m helpless, that I feel alone, that I don’t have much of a future to look forward to as all it is going to consist of is more pain and the misery that comes with the pain. It’s been 4 years and there is nothing stopping the pain from continuing on another 4 years, 10 years…forever. I struggle to see the point in doing anything, because seriously what’s the point in anything if all I’m going to be is in pain all the time. I’ve been suffering with no relief for 4 years now and I don’t know how much longer I can cope with the pain. I’m fighting it and fighting it but the pain is always there and I’m tired of fighting, I’m exhausted from being in pain all the time. I just don’t want to have to do it anymore. And I don’t understand why this happened; what did I do to deserve all this pain?!
So today I have started studying for my Tae Kwon Do 2nd Dan grading which hopefully will be in October, fingers crossed and also my driving theory test. I wrote up a time table which consists of just under 3 hours worth of studying a day with several breaks in between. So it’s not actually that much. Need to ease myself back into studying as I haven’t done any studying for anything in a long time. It’s over a year since I dropped out of school so I haven’t done any studying since then, and lets be honest the last 2 years before that I didn’t really do any studying either. So it’s been a long time since I’ve done any studying at all. But I now remember why, I’ve just completed the first hour and a half worth of Tae Kwon Do theory and it’s made the pain worse which is making it hard to concentrate. But I still have about another hour to go before I’m done for the day.
I’m determined to stick with this but it’s going to be really hard. I don’t want the pain to get so bad that I’m ruined for the rest of the day and won’t be able to go to actual Tae Kwon Do training in the evening, but I need to study also. I struggle with my concentration and memory because of the pain so it’s really hard when trying to concentrate actually makes the pain worse.
Off back to England tomorrow, looking forward to getting back but I know my mum is not. I actually quite like living in England now though I know my mum does not. Wasn’t meant to be coming back to Dubai till April, and was looking forward to having a long stretch in England but now my mum wants to come back late Feb early March. So I have to come back too, because where I live in England is a small village with no public transport services so if I stayed in England I would basically be house bound. I can’t drive in England yet. Although I have a licence in Dubai it’s not transferable to a UK licence which is really annoying but I can understand why given the driving of a lot of people in Dubai. I’ve applied for my provisional licence but because of my health conditions they won’t give a me a provisional without first talking to my doctors. So I’m still waiting for it to come through, am hoping something will be waiting for me when I get back home tomorrow. Then I will have to learn manual as I can only drive automatic at the minute and take my theory, I think the practical won’t take me long as I can already drive a car, but I think the theory will be the hardest part. Once I’ve got my licence and have a car I won’t be coming to Dubai as often, it’s nice to see my dad and sister but there isn’t really anything here for me to do anymore, I have more in England now and prefer it there.
This time in Dubai hasn’t been too bad though as some of my friends who have all gone off to uni have been here which has been nice. And I’ve caught up with my school counsellor and my old psychologist which has been nice. But I’m ready to go home. Which is weird as I now consider England my home and actually like living there now.
The pain hasn’t been too good since I’ve been here though, and it’s really bad now as well. In a weeks time it will be my headaches 4 year anniversary so I always struggle with my thoughts this time of year. Makes me even more depressed the anniversaries do.
Is it me or does anyone else hate it when people say that you’re looking better?
I get this all the time, people saying that I’m looking better. But I don’t feel better at all, nothing has changed in that respect. Several of my friends in Dubai who I’ve seen since I’ve been back have said I’m looking better and good and stuff. I think the main reason why they said it is because I look different, my hair has finally all grown back from when I lost over half of it due to a horrible medication side effect. And I’ve also lost a lot of weight since I left. So in that respect I am looking good. And I’m glad when people say ‘Wow Sian you’ve lost so much weight’ or ‘Sian! Your hair has all grown back and looks good’. I’m actually happy with my weight and hair again finally so it is nice when people notice it. But I hate it when people say that I’m looking better because I’m not better at all, I’m far from it. And it really annoys me when people say that. I get it from my mums friends in England as well. I know I should probably take it as a compliment, but when you are suffering from an invisible illness no one can see that you’re sick and in pain so it really annoys me when people say I’m looking better because I’m still as ill and in pain as ever. It’s like if you don’t look sick then you’re not sick. And that’s the problem with invisible illness’ no one can see them so to a lot of people it’s like they’re not there at all.