I’m struggling.

I’m really struggling at the minute. After my appointment with my neuro who gave me the ultimate decision of pain meds or surgery, either or but I can’t have both. I can’t even have pain meds to get me through the wait till surgery, not allowed anything other than triptans, which do not work. But I’ve been struggling, I feel so miserable and helpless and I don’t know what to do. I’m not sure I can survive the wait till surgery with nothing for the pain. I’m struggling to keep my head above the water and I feel as if I’m drowning. Drowning in misery and helplessness. 

My neurologist said there is nothing more he can do for me. And I’m struggling to accept the fact that I might be in pain for the rest of my life. I don’t want to accept it. Because to me accepting that means saying it’s okay. I know that’s not what acceptance is but it feels like it is. It’s not okay to live in pain for the rest of your life, but if there’s nothing more anyone can do for me, I guess that’s what it’s going to be.  

I feel so miserable, defeated, helpless and even upset. And I don’t know what to do. I’m not strong enough to continue living like this forever. I just can’t do it and I shouldn’t have to. If I were a dog they would have put me down by now because no one should have to live in this much pain. So why is it okay for a human to have to live this way for who knows how long. 

I’m expected just to suffer it out till I can get a surgery that may not even work, well not work because it’s not a cure but help even. In 8 weeks time my headache hit’s it’s 4th year anniversary, that’s 1461 days or 35063 hours spent in pain. Which is a long time. This illness has taken so much away from me, 4 years that I will never get back, my teenage years ruined, time spent being a happy teenager doing normal things with everything to live for taken away. 

I have no future, a future without pain doesn’t exist for me, so what’s the point in a future at all. I have an agreement with my psychologist that I will not try to kill myself whilst I am still seeing her regularly. I tend to uphold my agreements so I don’t have any plans to do anything. But that doesn’t mean I don’t wish I was dead. 

I just want it all to end. 


6 thoughts on “I’m struggling.

  1. What are your laws on marijuana? What would your Dr’s thoughts be on it? What about muscle relaxers and anti depressants? Being that I am from Seattle My Drs are down for most anything if it helps. My Nuero will try a combo of muscle relaxers and anti depressants to keep me off the edge and my general Dr can prescribe something heavier which my neuro doesn’t mind as long as I am in less pain. Have you got a second opinion? I had to switch Drs. a few years ago as well.. Some can not relate, this one knows what it feels like to be in pain and cares.

    I am so sorry that you have to go through this. No one should have to and to have a Dr that doesn’t feel like he is on your side 100% makes me cry for you. I wish I could fix it. Do something. I hope this gets better for you. I hope that you have a less pain day or even better a pain free day!!!

    • Marajunana is illegal in the UK but I have tried it. It helped a bit but then I had a horrible reaction to it was on the floor passed out and having one of my weird seizure things I get from my POTS for ten minutes. Was scary so I don’t want to try it again after that. I’ve tried muscle relaxers and antidepressants with no luck. My neuro said it was okay for me to go on opiates but he said it would mean I wouldn’t be able to get surgery. So I have to pick one of them but I can’t have both or even have opiates in the wait till surgery. So it’s really hard and I don’t know what to do.
      Thank you. I wish you a low pain day also!

      • Will he allow you to have the surgery. If it doesn’t work then allow you to use opiates? In the mean time while you are waiting for surgery make a list of every single thing you can try. Different meds, Botox, meditation, Acupuncture, massage, I mean anything and everything to get you to surgery date!!!! My dr and I have a kinda check list of what works and what we have tried and what we will never ever try again. Our goal date right now is march 13. When you have the date insight it adds a bit more hope and calm. I don’t know if any of this will help… I just want you to know I care. I want you to feel better. To get better.

      • Yeah probably I suppose. The problem is that I’ve now tried everything medical and alternative and nothing has helped so I don’t know what to do now. Thank you it really means a lot!

  2. If I can think of anything or my nuero comes up with something new I will pass it on.. I hate seeing anyone else in pain. Its a sucky little world we live in right now but its going to get better for us!! I just know it is!

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