You might of noticed, or not, that I usually do a post for Thursdays. But, well, my health is rather unpredictable right now and as a result I can’t predict a good time of day or a good day to write.

My chronic pain is as it always has been. It is a bit more severe with our erratic weather this year. Unseasonably warm actually, and shifts in barometric pressure every day is making for a lot of migraine attacks. And my fibromyalgia is severer because I have to rest all day… it doesn’t like it when you rest, or do not move, at all. That hurts.

Chronic Illness- On pause

The situation

The main issue is my vertigo and dizziness and lack of balance. This would be what they believe to be Meniere’s disease but my neurologist wants to send me back to the vestibular clinic to confirm. This, pandemic or not, will take time since it is the Only one in the city. And I would be fine with that if not for the fact my doctor decided since I was on SERC, which is helping slightly with the vertigo attacks, I wouldn’t need Clonazepam which suppresses the vestibular system and was helping with ALL symptoms. Take it away, as I am Slowly tapering off it this month, and you take away literally ALL my functionality.

It takes me back to the beginning of this vertigo hell actually. And in the beginning of this all I moved from the bed to the couch. And that was all.

And that is where I am now. Living on the couch. Having to lay down 90% of the day. Rest. All. Damn. Day. If I do anything, I get worse. I also get worse as the day goes on and then I have severe balance issues and have troubles walking. So I use the cane in the house but still very unstable. And the next step which will begin when I go down further will be the vertigo attacks and drop attacks (a drop attack is much like it sounds, you just fall without knowing your falling, until you catch yourself before you hit the floor or the floor catches you). So I have that to look forward to. Right now, the vertigo is short episodes. Severe at night though and making it impossible to sleep. And since I can’t sleep the symptoms are so so so much worse the next day.

Part of the problem is the shock to the vestibular system. Feeling the bulk of those symptoms all at once again is a bit of a shock to my equilibrium which is why I feel at my worst and I am not yet done tapering off the med yet.

What can I do about it?

With this level of low functionality I can do nothing about it. I have slight functionality early in the morning, which is why I am writing this in the early morning hours when I am just very dizzy and nothing else- before that and everything goes nuts.

When the symptoms get severe I can’t function. I have a hard time sitting up. I have a much harder time standing and walking. I can’t focus or think and am so easily confused. I feel zoned out. I have this falling sensation, and motion sensation in my body. Some spinning in my head- but not a hard core vertigo attack. When those happen, well, it is all-consuming and you can’t predict when they will happen. They just Do. My left ear hurts sometimes. It gets intense ringing. If feels full. I lose my hearing now and again. Crackling, buzzing and other weird noises come from that ear. Back to all the insane symptoms of the way it was without any medication frankly.

I have no hobbies to distract me. I can’t draw. Or read. Or work on creative writing. Not unless I do it for a very short time in this very short morning window I have. But I pay the price for Doing Anything in this morning window. If I do nothing it lasts longer. I do something, it gets mighty short.

So my time for Life is about a couple of hours with some laying down in there. And then laying down the remainder of the day.

Paused

I feel like I am on pause. Immersed in these turbulent symptoms, yes, but on pause with any sort of semblance of a life. Just having a bath is a massive feat and must be done very early on. I am immensely fatigued. I am not capable of even small teeny tiny bits of housework. I can’t distract myself with hobbies.

If I felt coherent enough I would stubbornly find things to do. Listen to podcasts or watch documentaries. I don’t have to focus or energy for that even.

I don’t explain this for pity or whatnot. But to say sometimes for reasons out of our control we take a huge downturn. And there is not a damn thing we can do about it.

Emotions

So massive downturn happens. BAM your laid out for an indefinite amount of time. You do not know how long you will be or when things will improve.

And it gets to you. It just does. If you can’t distract your brain, then it is very hard to cope all the time with symptoms. We need our distractions. Without them we are saturated in pain and symptoms.

I feel:

  • Frustrated– that I can’t seem to do even the smallest of things without a massive toll. And only in the short morning window at that.
  • Bored- even though I am dizzy, nauseated, can’t walk well, spiny… I am bored because I can’t do a damn thing all damn day.
  • Angry– People around me are doing things and having fun and being all Mobile. And here I am a lump on the couch that has trouble just sitting up for long. It makes me angry and irritated and in a MOOD. No one wants to feel sick and laid out all the damn time.
  • Isolated- Everyone is doing things and I can’t do anything. So it is very isolating.
  • Sad– I feel useless and tired and immensely Sad that I can’t even function a little bit

If I could do some art or writing I could work through this tangle of emotions but I have no release for them. I just have them. And they suck. And I just want to feel Better than This. Any sane person would, of course.

But I just have to deal with it. Just the way it is. For however long. Since the medication suppresses the vestibular systems it is brutal when you taper off. You feel it all Slam back into you. But when I am off of it entirely, I will adjust slowly. It will be bad. As bad as it is now but no worse than it is now. Unless the I have Meniere’s disease and it has gotten worse since I was put on the medication that is. But, there will be an adjustment as my body tries to adjust to the lack of balance, dizziness and those constant symptoms. Not the vertigo bouts themselves, but the constant symptoms, yes. And I can hope when it does it is no worse than it is now on 2 pills.

I go down another step on Monday and I sure don’t want to. Not with how I feel right now. But I will. I will do what I have to do.

Recovery

When we are just laid out and non-functional for long periods for time for whatever reason we have to focus on recovery. Just getting through it. That sucks. But it is reality. It is what it is. The main focus is actually the rest your body is Demanding from you.

But it can’t be just rest and only rest. That way lies insanity. Most days that is all I can do. Some days I do small increments of things, or attempt to, to test my limits. And I will eventually find some sort of things I am capable of doing without much focus and laying down. It is the nature of being disabled. You find a way to occupy yourself in new ways when you must.

And we must get through these times. Somehow. And part of that is recovery and rest. Part of that is slightly and carefully pushing our limits. Like the pain from fibromyalgia is getting to me so I want to do, carefully, do some lay down stretches to ease that pain. You have to do the self-care that you are capable of to manage symptoms and and well-being as best you can.

Everything changes

Chronic illness never stays the same. Everything changes. Sometimes for the better. Sometimes for the worse. It is hard to maintain balance so we have to have resiliency for these downturns and do what we can when we can.

At least I’m not working. When abrupt downturns happen when I’m working it has often led to short term leaves. And that has led to workplace stress on my return and eventually a rather toxic work environment. When you are not working, you just can focus on recovery, rest and slow improvements.

See more posts

Chronic illness: We are only human
When you feel like a loser because you’re disabled
Chronic illness: The disabled line

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24 thoughts on “Chronic Illness: On pause

  1. Hi Nicki

    My fibromyalgia is bad too but my main symptom is pain, especially my back. I can’t get away from it. Medication doesn’t work for me so I made myself go to work, just a few hours a week. What I don’t understand is that whilst I’m working I don’t feel much pain. When I’m at home, like today, the pain is beyond words. It annoys me. I don’t understand, is work making my pain worse? If so, why don’t I feel it so much there? I don’t know what to do, ask for more work or less? Very frustrating

    Liked by 2 people

    1. With fibro I found the same thing. FM likes the movement… so we move positions more and we do not feel as much pain. Also, work is a distraction from the pain so we do not notice it as much… as soon as we are home and do not have that distraction we notice all that pain a lot more.

      Liked by 1 person

  2. Good Morning Nikki! Girl, my heart goes out to you. I also suffer from chronic pain, vertigo, and migraines. I was in a car accident some years ago that left me with a spine that was never quite the same. I have been through the gamut of terrible doctors. I am so glad you are getting some treatment. Can I ask, what part of the world do you live in? Neurologists can be a handful sometimes. I hope answers and relief come to you soon. Take care of yourself. Blogging can wait. ❤

    Liked by 2 people

    1. I’m in Alberta Canada. The whole vertigo thing seems so hard to diagnose. I have been waiting for over 3 years now for them to diagnose and treat this. And now without the med that helps me function it is going to be rough. They seem to think they have narrowed it down. But I still have to wait to get back into the clinic and with the pandemic I really do not think that will be anytime soon. Vertigo is so brutal on our lives.

      Not that the migraines and chronic pain are a walk in the park but I have coped with them for decades. And some vertigo for years and years. I just can’t handle these intense symptoms knocking me out.

      Liked by 1 person

      1. Yes, I can imagine your quality of life is certainly suffering. I remember a time when I couldn’t even ride in a vehicle due to my own vertigo. I still have spells, but they are much less severe now. Have you considered chiropractic? I am so glad to hear you are in Canada. I am in the US and as I’m sure you know, our heath care system is atrocious.

        Liked by 1 person

      2. I know what you mean about the vehicle rides. I haven’t seen a chiropractor, mostly because I am waiting to see what the actual diagnosis is. The pandemic is really slowing the process down. But yes, being Canadian helps since I don’t have to pay for any of these specialists and tests

        Like

    1. Sorry to hear you can relate to this one… it has been a rough go of it and I wish none of us had to endure times like this. But illness is so unpredictable

      Like

      1. Agreed. I think in many ways my chronic illness has prepared me better for all this covid stuff and quarantine etc. So at least there are some benefits.

        Like when everyone was going crazy for being in quarantine for 3 months I was just like…. 5 years and counting dude take a chill pill.

        Wishing you a low pain, high functionality day… You know… Even if it’s on the low scale.

        Liked by 2 people

  3. Nikki, I was taking my medication yesterday and read the instructions on flunarizine. I take it for migraine but it did say it’s used for vestibular vertigo too. Made me think of you.

    Liked by 1 person

    1. They don’t think I have vestibular migraine, or if I do, I also have some sort of inner ear issue like Meniere’s disease. I have been on that before, years ago.

      Like

  4. Nikki, I am hoping you find answers and relief soon. Vertigo and dizziness are some of my most frustrating symptoms because I usually just have to lie around and wait for them to go away. No reading, watching TV, writing, working. Just lie around while the room spins. Sending some positive vibes your way! Hugs!

    Liked by 2 people

    1. That is precisely my frustration. When it isn’t vertigo it is this severe dizziness. And so I find no relief. I do hope they find answers soon but I do not have an apt yet for that so I think I’m in for the long haul

      Like

  5. This is definitely hell that you’re in. I’m so sorry. I so hope that the upturn comes. I’d like to expedite the process for you. You’re in my thoughts.

    Liked by 1 person

    1. Thank you. It will improve slowly as my brain adjusts to the lack of the medication. I think. But then I will still be less functional than I was before, unfortunately. It will be a long wait until I get back to the vestibular clinic

      Like

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