If you read my blog then you will know that I’ve been having a particularly difficult time recently with the pain and my depression. And then on Wednesday I had a horrible appointment with my neurologist which has just made me feel worse.
But anyway I really needed something good to happen to me for once, and for once it actually did. Yesterday I passed my driving test. I am over the moon to have passed and have my independence back and not have to rely on my mum all the time. I actually thought I had failed it, but at the end the tester said I had passed and I was so thrilled, he said I sounded surprised or relieved, I said I was both. Apparently I did really well, because I only got 3 minors and you can get up to 15 and still pass.
I really needed this to happen to prove that I could do it and I am not a failure, that I can achieve things. I needed some good news after the horrible time I’ve been having topped off with my awful appointment with my neurologist on Wednesday.
I know the high of passing won’t last that long, and I do still feel really miserable and depressed about being in pain and probably being in pain for the rest of my life. But I drove to college on my own this morning for the first time and it was great, I am so thrilled to have passed, and to finally have something good happen.
Today I traveled up to London from where I live to see my neurologist, it wasn't too positive really.
After filling in the usual questionnaires and a bit of a wait I was called in to see one of the Headache nurses, who is lovely. She gave me a letter from the clinical director that was addressed to me regarding the situation with ONS surgery being on hold, and basically just stated that it was still on hold and they are not sure if or when the problem will be resolved. She went through the medications I'm on, which is now only medications to control my POTS. And then asked me about what my pain levels have been like, which has been awful recently. She said that they had nothing more to offer me medications or procedures wise because I have ran out of options. She said that the only thing left was ONS surgery which obviously can't happen any time soon because of the issues with the NHS and them putting it on hold. But there were the more recent external simulators which have recently come on the market, like Cefaly and GammaCore, and that if I wanted to I could try them. She then said she would go and speak to my neuro in the other room and for me to go to the waiting room and wait.
I was then called to see my neurologist. He went through what the nurse had said and we had a discussion about it. I asked him a question, that I really wanted and needed to hear the answer to and only he could answer it for me. I asked him if I was going to be in pain for the rest of my life. He said that he wasn't going to make any promises but it's highly likely that I will be in pain for the rest of my life. I told him I was desperate, he said he knows and he knows that I needed relief yesterday/today/years ago and that I've been in pain a long time now, and he understands that I'm desperate. He is a really nice guy who I respect a lot and I truly believe he wants to help me, though there isn't anything more he can do for me at the minute.
Safe to say have a mixture of some lovely negative emotions about today. I feel defeated and helpless, and I also feel scared about how on earth I am meant to go on in pain for the rest of my life, and I really don't know what to do, because there is nothing I or anyone else can do to help me. Not to mention I feel beyond miserable and depressed about today and my life. I told my mum when we got home about the question I asked and she cried when I told her what he said, I haven't cried yet, but that's nothing out of the ordinary because I hardly ever cry, will probably break down some when soon about it, but for the minute I'm just feeling desperately depressed and helpless. I was feeling bad before today and now I'm just feeling even worse about everything.
Hope everyone else had a better day than I did!
I can’t do this, I can’t do any of this, it’s too hard.
I spend my life fighting, fighting the pain every second of the day, fighting how it makes me feel, and I never win. Everything is just so overwhelming. I feel so overwhelmed by the pain and how bad I’m feeling at the moment, everything is just so hard and I can’t do any of this.
I have so much to do and I can’t do any of it, I can’t concentrate because of the pain, so I sit at my laptop unable to concentrate and I can’t remember anything, my mind goes blank and then I get really stressed and anxious. So I sit here in pain and feeling like a failure because I am unable to do anything. So I don’t know what to do at the minute, I don’t know how I can keep going in so much pain and not to mention how much work I have to do, of which I am unable to because of the pain being so bad for pretty much the last few months. I’ve had very few moderate pain days and just strings after strings of severe pain days and it’s all too much.
I’m off to London tomorrow morning to see my neurologist, though I know it’s not going to be a good appointment and is going to just make me feel worse by him reiterating that there is nothing he can do, which is what he said last year as well. And I highly doubt that has changed. Not looking forward to it one bit, being told by a leading neurologist in your condition, a top one in the country at one of the top neurology hospitals in the UK, is heart breaking. I feel so desperately helpless and there is nothing anyone can do to help me, which I know will be re confirmed tomorrow, probably after I’ve waited 3 hours past my appointment time to see my neurologist.
So I had an appointment to see my psychologist today, after not seeing her for 4 months. I should have made an appointment and gone back a couple of months ago, but I just let everything get worse and worse.
It was nice to see her and talk to her, she is one of two people I feel able to talk to properly, the other being my previous school counsellor, who I still talk to a lot and still tell her pretty much everything. I never thought I would find someone else that I felt as comfortable talking to, but I did and my psychologist is great and I feel like she understands. She doesn’t know me as well as my school counsellor does due to the fact she hasn’t known me as long or worked with me for as long as I have seen and been in contact with my school counsellor. But she is lovely and it was really nice to be able to talk to someone about how I’m feeling properly, without me not feeling able to be completely honest about how bad I’m doing.
We caught up on what has been going on with me since I last saw her back in July, she asked if I wanted to come back to therapy. And it’s not that I didn’t want to or know that I needed to go back it’s that I didn’t want to feel like I had failed by having to go back, if that makes any sort of sense.
I explained how difficult college is and how I’ve practically been in flare up since I started college in September and how depressed I am again. I haven’t spoken about this on here but I now developed some issues with eating which has been going on for a a couple of months now, but recently has gotten progressively worse. I don’t eat, well hardly anything, and I ignore the fact I’m hungry, which gives me a sense of control. It’s not about weight, it’s about control, in the past I have used self harm which gave me control but now instead of that I have turned towards not eating to give me a sense of control in my life as I have no control over my pain so I search for control in other areas of my life. It’s very twisted but she is going to help me with that also. But everyone is very concerned about it all, my mum also knows about it.
She looked a bit overwhelmed with the amount of issues that need to be addressed at the minute and said she wasn’t quite sure what one to address first, but thinks that if we focus on getting me less depressed and pain management techniques then hopefully that will help sort out my eating issues.
Anyway I will be seeing her weekly again for the time being to try and help how I’m feeling.
Maybe there is no happy ending for me, I will most probably be in pain for the rest of my life. There is no hope with NDPH for me, no more treatments, nothing anyone can do to ease my pain.
I was 15 when my headache struck out of almost no where, it is an unwanted guest, like the annoying relative that just won’t leave your house, to put it mildly. Over half of my teenage years have been taken away because of the pain, I’m still young, though I feel old, but I should be out there with friends doing normal things like drinking and partying and having fun. Instead I’m 20 years old and I spend the majority of my time in bed, other than 2 half days at college a week which is really all I can manage, and probably even then is still a bit too much. I don’t enjoy life because all I experience is pain and misery, and happiness is hard to come by.
I don’t see a happy ending for me, because I don’t envision that I will ever not be in pain. NDPH is almost a life sentence of pain, it’s a cruel diagnosis like so many others. People don’t get it, they don’t get how having a constant headache can destroy your life, and take away all hope and happiness. They just see it as a headache, as a headache is something relatively normal, that everyone gets from time to time and they struggle to fathom how a headache can be 24/7 for years on end. But it’s so much more than just a headache, it’s constant never ending severe pain in the place where you think so you can’t not think about it, it wears you down and destroys you and everything you once knew. It leaves you with such a feeling of hopelessness and helplessness and you can’t escape it because you are always in pain.
There is no happy ending, just pain.
Sometimes I tell myself this is all a dream, that this much pain can’t possibly exist, it just can’t. That maybe I am just having a horrible nightmare and one day I will wake up from. Or that I’ve had a terrible accident and am in a coma and this is my coma dream. I know of course this isn’t the case and really my life is really just one big living nightmare that I wish I would wake up from.
At the minute the pain is so bad I just want to cry, the past few days have been particularly god awful and I just don’t know what to do anymore, because when it comes down to it there is nothing anyone can do to help me. Medicine has failed me, therapy only does so much and when it comes down to it I truly am helpless because no one can take away my pain and nothing eases it. Which makes me feel so angry and miserable.
I’m struggling to be around people, so I’m isolating myself. College is difficult, it’s so hard to sit in a 3 hour lesson and concentrate with the pain that is dominating my mind, not to mention that concentrating makes it worse. I find it difficult to do work at home as well due to the pain being bad, there is so much I need to get done but with the pain being bad the majority of the time at the minute it is proving to be difficult, to say the least. Don’t get me wrong I don’t dislike college, I love to learn, always have done, but it is very hard for me.
I’m going back to see my psychologist on Thursday, maybe that will help me feel a bit better. And then next Wednesday the 26th I’m in London seeing my neurologist for my yearly appointment. Not looking forward to it one bit, don’t know how well I’m going to take the ‘sorry Sian there is nothing I can do’ line for the second time; probably not well at all.
Just can’t cope with everything at the minute, the pain being so bad all the time and the way it makes me feel.
Today I had a meeting with a woman from the skills development department at college, she contacted me for the appointment. I told her my medical issues and how difficult they make things like studying due to having difficulty concentrating and poor memory and that doing anything makes the pain worse. So I have to provide her with some evidence from my doctors so that I can get extra time and rest breaks in exams, which I have had previously. I told her how I’m meant to pace myself with studying but that becomes difficult at college when I am in lessons for an hour and a half before I get a break, whereas I’m meant to have a break every 20 minutes. Anyway she offered me the opportunity for support with my studies and that I can loan a tape recorder which means that if I need to leave I can record what I miss, and that I can check in with her every week or so to see how I’m doing study wise, to go through any pieces of work together and she wrote down a bunch of other stuff on a piece of paper for me to consider.
It all sounds well and good but I’m having difficulty accepting this help, I told her I would get back to her and rushed off to catch the train. I try so hard to be ‘normal’ (by normal I know that there technically is no such thing as normal, but I mean to be someone who isn’t in pain 24/7 and isn’t depressed) that I feel as if I accept this help that I probably do need then that makes me less ‘normal’, which I’m so far from due to being in severe pain all the time and being depressed. I’m having trouble with pacing, I know I need to take a break but I don’t because I don’t want to make a big deal out of anything, none of my peers at college know about my health and I feel that if I am always leaving class then I’m disrupting my learning, and it kind of singles me out and makes me different, which I am but I don’t want everyone to know that. I know I should accept this help, I know that’s the right decision for my health but I don’t want to need help, I want to be ‘normal’ so I am reluctant to accept the help she is offering.