You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.

You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.

I wrote this a few weeks ago, it was meant to be my way of motivating anyone who needed it. But, I never actually got around to finishing it. Now, lying in a hospital bed (yet again), I find it more suited to my own situation.

Current state:

I called my neurosurgeon’s room yesterday and told them about nausea and a headache I’ve had for the previous 3 days, all day, every day. Mid-December, I had the same dizziness pre-surgery last May. My headaches have come and gone over the last few months but this was longer and more intense. The directive was clear; “Go to the hospital emergency, don’t muck around!” So, here I am. Admitted overnight, awaiting an MRI with flow study later today, and a visit from my neurosurgeon.

A visit to my gastroenterologist the day before sparked some of my concern. He booked me for an endoscopy in 2 weeks time but examined my abdomen and remarked; “That amount of discomfort and pain could be due to pressure in the brain”. I tried to brush it aside.

Hopefully the MRI will guide our next steps. It may not lead anywhere, however, I remain optimistic regardless of the outcome.


  • You’re facing another brain surgery, or
  • You’re unsure if your treatment option is failing, despite your gut telling you otherwise. Or,
  • Maybe your body physically cannot take the pain anymore. Or,
  • Maybe, like me (so many times), you feel helpless and have no medical direction. Or,
  • You have no Neurosurgeon to call on. Or,
  • You’re at your wits end because every visit to the hospital emergency department turns into a fruitless waste of time. Or,
  • Doctors who should know better, dismiss your concerns because they don’t fit into a textbook checklist. Or,
  • You’ve dipped into a state of depression, feeling like you’ve fallen off the board, pummelled by the ocean. Or,
  • You may even be anxiously awaiting your next MRI or neurosurgeon consult, feeling like time is literally standing still.

If you’re hanging on by a thread, because you’ve had symptoms, which you’ve tried to brush aside, and feel like you’re “ghosting” yourself. Know this:

There’s only one way to get to the other side, and that’s to keep going. Stay on the board whether you’re surfing the wave or just using it as a flotation device.

I’m floating right now, simply because I’m tired of the effort it takes to stay standing. At least I’m on the board, despite feeling like I could literally just slip off the side, and be done with it all…

How about you?


  • Rob

    April 14, 2022 at 7:50 pm Reply

    I hope that you find some answers and some relief so that you can move on to a pain-free life! No one deserves to be in misery or pain. I wanted to relate the following, because I am fed up with the US medical system. It is not my intention to make this post about myself, and I apologize in advance if it is taken that way.

    I’ve been to the emergency department twice in the last month for pain around external valve behind ear (it’s painful to sleep on my left or my right side). and itching and discomfort in my shunt tubing in my neck, sometimes extending to my abdomen. All blood and imaging tests are negative for infection/feel bettemalfunction. I find it very interesting that up until a few months ago, I rarely noticed that I had my shunts. I am also dealing with a chronic GI issue causing abdominal pain and ache. I have another study scheduled for that issue, and I see my neurosurgeon next week. I’m tired of feeling sick!
    Again Skye, I hope that you find answers soon so you can feel better and be well again.

    • Skyewaters

      April 19, 2022 at 8:52 am Reply

      No need to apologise. I know what you mean and can relate as I too have ongoing GI issues. I was due to have an endoscopy next week but that’ll have to wait. If it helps, both my Neurosurgeon and Gastroenterologist have said brain and gut issues are connected.
      NS said last night, let’s get your shunt sorted and see if it helps the GI issues. Keep look for doctors who will listen and hear you. All the best💙

      • Robert Myers

        April 19, 2022 at 3:10 pm Reply

        Thank you so much for your reply! Even though you indicated that you didn’t want a shunt, if it makes you feel better and is able to restore you to a healthier, functional person (as I’m sure you were before the recent chain of events), then I suppose it’s meant to be. Thank you again for your kind response, and know that you are in my thoughts as you progress through this latest chapter in your journey of life.

  • Philippa Taylor

    April 14, 2022 at 10:08 am Reply

    Sending you strength and love. You’ve got this. A friend of mine has recently had another shunt revision. I haven’t for a long time, but pain (muscle, nerve, gut, joint, you name it, it hurts) and unrelenting fatigue and memory problems- can’t see GP due to a lot of staff sickness, can’t speak to neurosurgeon as he will tell me it’s not shunt related, or will only do a CT scan (head only, not spine or stomach) and only after my GP has referred me.
    You are so incredibly strong, and things will improve for you soon.

    • Skyewaters

      April 19, 2022 at 8:48 am Reply

      Don’t settle for that kind of treatment or uncertainty. Keep searching for a doctor who will not only listen but, more importantly, hear you.

      • Philippa Taylor

        April 20, 2022 at 11:11 am Reply

        Thank you. I’m going to speak to my GP again- probably email her as there are still a lot of staff off sick at the moment- and say that I want (need) further tests. It doesn’t feel like intermittent shunt failure, but it does feel neurological and/or spinal, and I don’t think it should be ignored simply because it’s not immediately obvious what’s causing it. Going away next week, so probably be after that.
        Thanks again. Love and strength x

        • Skyewaters

          April 20, 2022 at 9:42 pm Reply

          All the best💙

          • Philippa Taylor

            April 21, 2022 at 10:38 am


  • Gabby

    April 14, 2022 at 3:22 am Reply

    Hang in there…it has to get better and you are an inspiration!

    • Skyewaters

      April 19, 2022 at 8:47 am Reply

      Thank you.

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