I can’t do this.

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.


12 thoughts on “I can’t do this.

  1. Sian – I recently received this in my email from a group I belong to regarding NDPH. It is something I want to discuss with Lauren’s neurologist. She did give me a sample dose of Cambia that Lauren took during a particularly bad HA day but it didn’t help much. It appears that strong doses over a continued period of time helped this woman’s son. His mother who wrote this apparently is a doctor too. Please discuss this information with your neurologist.

    Also, please try to find some information on neuro feedback – I am telling you that it is the one thing that has helped Lauren cope since 2009! She has suffered longer than you and she is only 17 now, a junior in high school. It’s a daily struggle but when we miss neuro feedback appointments, she can tell the difference. We are having an MRI tomorrow in our never ending quest to find relief. Good luck and know that you are not alone!!!!

    It’s rare to come across a success story when it comes to the treatment of NDPH. I found Rowan’s story today in the comment section of one of the posts here on the blog and wanted to share. I hope that this can help someone out there find relief from their pain.

    “My son has recovered from NDPH and he wants his treatment documented for others. Rowan woke up on Sept. 10, 2012, age 13, with an excruciating headache which was continuous until Feb. 10, 2014.
    He had done Topomax, Maxalt and other migraine medicines with no avail. Botox and DHE infusions were also tried. He was put on a low dose of Protriptyline which lessened the headaches but he was still unable to attend school and ordinary social functions. In December of 2013 we went to a new neurologist, Dr. Khoury in Dallas, TX. Rowan’s meds were bumped up to high doses of Protriptyline and high doses of Cambia. Both of these have an anti-inflammatory effect and after 6 weeks of that regimen, Rowan’s headache stopped and has not returned in the last 5 weeks.
    My heart goes out all of the NDPH sufferers and please never give up hope. Regards Dr. White (Rowan’s mom)”

    If you have tried these medications, please share your experience (pros and cons!) in the comment section.
    Wishing you a low pain day,

    • Hi Debra, thanks for this, I had actually read it the other day, I also get an email when Amy posts. Will discuss with him tomorrow, but not holding out any hopes.

      • Please share with me what your neuro says! I sent to our neuro today for her comment. I’ll share her response with you as well. You’re in my thoughts and prayers. Debra

      • My neuro doesn’t think it will help due to the evidence of that nothing has helped me medication wise. He said my only options left till ONS surgery becomes available again, is Cefaly or GammaCore, so might try them depending on what my research about them brings up.

  2. Sian, you are NOT A FAILURE! You are the OPPOSITE! You are COURAGEOUS, you are going through something most people don’t understand. This is a dibilitating illness which only sufferers know and those close who can see what they go through. I find it hard to believe in this day and age that they don’t know how to cure this dreadful illness. Don’t put pressure on yourself about any studies, do only what you can, the more pressure you put on yourself the more pain so it appears. My daughter with same will stop her studies for days if she has to, she paces herself.There is no rush, you are young and have plenty of time to complete your studies. These terrible thoughts that go through your mind are natural with so much pain, but try and look to the future, and there is one, try and have a positive mind. Easy said l know, but there is a future, they will find a cure, we can only pray sooner than later.

    • Thanks, it’s really hard to study with the severe pain I am always in but I managed to do some work today with lots of breaks mind you.
      Hope Ashley is doing okay, haven’t heard from her in a while!x

  3. You are so, so much stronger than you’re giving yourself credit for right now. I know what non-stop crazy levels of pain in your skull/head is like, but I do not know what your unique pain is like, I have Trigeminal and Occipital Neuralgia, both, I’m 25 and I’ve been in constant pain for three years. To be completely honest, even though I know you don’t want to hear this, nothing makes the pain go away, but some things are important enough that I am able to push through it for a short period of time, and the pain can be pushed away just for that little bit, then it’s rest time again, as I have been stuck in a flare since getting the swine flu last December…. almost a whole year with less than ten manageable days, and one “good” day that entire time, the rest up in the 7-9 range. Sounds like you have been dealing with something very similar as far as medicine failing you. It’s awful, and I’m terribly sorry you have to deal with this part of being chronically ill. It was my least favorite part of gaining some acceptance, so I am sending you lots of warmth and good vibes.
    If I’m not able to push through a task or a job or anything, or unwilling for a certain reason, I try to respect my body as much as possible. You will get to a place where it’s easier to honor your strong, resilient body that has gone through so much. You will get to a place where your needs are more important than those of the people around you telling you what you “should” be doing, from therapy to schoolwork. It’s hard to hear your own voice over all that pressure. I can hear in your tone of writing that you have hope still. That’s going to carry you so far. I also have a lot of experience with self-harm, anxiety, disordered eating, depression, PTSD, so I understand that the body and the mind are linked in ways we can’t quite pin down, but have to acknowledge anyway. I have been reading your posts and wanting to comment for a while, but this post pulled at me in a way I could ignore and not respond to. Reading your writing it’s like I’ve known you for a long time. That is definitely a talent, building familiarity with readers you have never met. You are refreshingly honest about your struggles, and I admire that, very much. I never would have had the foresight or the guts to do that while I was still searching out answers. I was way too overwhelmed to even think about finding another outlet. I hear how much pain you are in, and I so much want to make it better, but I know healing doesn’t (unfortunately) involve waiving a magic wand. Sometimes there is no “fix” but there is room in your life for both the chronic pain and the kick-ass woman you are striving to be.
    That doesn’t mean you have to do so much that you cannot ever get out of your flare up. Your rest is a major priority, to you and your support network. One of the main things that being ill has taught me is to always look at the situation from a different angle and to not be such a perfectionist, type A personality. It was not easy, but I am not that person who nitpicked and obsessed over every little thing being in its place and every grammar mistake fixed and every sign that I have brain fog and cognitive issues erased or covered up.
    Maybe you need a break, maybe some things need to get shifted around or there is some other answer for you that involves not being under so much overwhelming stress. I certainly hope there is. ❤ ❤ ❤ Stay strong darling. Wishing for your pain levels to go down.

    • Hi Jessi,
      Thank you for commenting, means a lot. Sorry to hear you suffer with pain also and have been in flare up for a year, that’s awful.
      I try to push through as much as I can and I never miss a day of college that I’m meant to be in, not always very productive due to the pain but I always turn up. I’m trying to pace myself with work but it’s very difficult and it’s very difficult to concentrate with the pain.
      I’m glad you commented and I’m thankful for all the kind wishes you have sent me 🙂 Writing helps me a lot to be honest, and I feel this is a platform I can be totally honest on and that there are some very lovely people (like yourself) who know what it’s like because they are going through similar things and it helps me feel less alone and I don’t get that sort of understanding with many people in my life.
      Stay strong too, and I hope you are having a low pain day! ❤

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