It is time for A Chronic Voice prompt link-up post!

Prompts for June

  • Accumulating
  • Harmonizing
  • Prioritizing
  • Carving
  • Training
A Chronic Voice June Prompts

It is migraine awareness month in June. I have chronic migraine with aura. I also have vestibular migraine- and how bad these are is pretty much up for debate at the moment. They used to be episodic and well managed with medication (quite unlike every other migraine I get). But since my vestibular symptoms have become constant and I was diagnosed with PPPD one would have to assume, since PPPD doesn’t account for all my symptoms, that my vestibular migraine attacks are also way, way more frequent than they used to be. But who even knows. It is just a big ball of symptoms smooshed together. I can tell any of it apart, to be honest. If they don’t know then how the hell can I know.

Accumulating

2021 is a getting slowly a bit better but not a lot. I still know so many people that are suffering the consequences of the pandemic which we are still in. Economically this province was hit hard and I know way too many people just trying to stay afloat somehow. So a lot of people are not accumulating anything… we just want to stabilize and stop the downward slide. I am really worried about so many people I know.

For myself and my spouse, my spouse found work and that I am extremely happy about. It doesn’t pay like his previous career but I think that will be just the way it is for a lot of people. It is in a new field and, again, I think many people will have to think outside of the box. He likes the people and the company. It has potential for advancement. And if he likes the work, that makes me happy. I worried what he would have to take would be some job he loathed but would have to do for lack of any other option. That worried me with his anxiety issues. Stress really eats at him and like for many of us has some physical consequences with chronic illness. So I think it is fortunate he was lucky enough to find this company that ‘fits’ with him.

I accumulated a diagnosis of this PPPD to explain my vestibular symptoms. I am not sure it fits but it is possible it does. I don’t think it matters one way or the other because they are sending me to vestibular rehabilitation and that is a very important step.

Harmonizing

I really do not feel any harmony at the moment. Between migraine attacks, and fibromyalgia and vestibular symptoms it really feels like I am assaulted with a lot of signals that are just out of sorts and not aligned with reality. I don’t think my body is quite aligned with reality right now. As a result I am really fatigued and it is insanely hard to keep any routine and get things done.

'Sometimes I think I'm diagonally parked in a parallel universe' quote on a wall to the right. Left side of image is the side of the building.
Sometimes I think I’m diagonally parked in a parallel universe

Prioritizing

At this point, I am prioritizing my self-care and taking care of my physical and mental well-being. I know I can’t maintain a routine. I know it is difficult to do more than 1 simple thing a day. And that is just the way it is at the moment. I am just try to wisely choose what I do each day to do things that help with my mood and well-being. Just focus on pacing. Focus on self-care.

Carving

When your functionality is pretty low and your having some extreme fatigue issues with that you have to really slice into your day some time for yourself in there. And carve out some of the unnecessary things that consume a lot of time but have little actual value. I can’t do any of the things I love to do for long periods of time but I can do each of the things I love for short periods of time, one selected each day.

Training

Earlier in the pandemic when I was on a decent amount of medication to help me function with the vestibular symptoms I did take some courses to keep myself occupied, at my own pace. As such, I am certified as a life coach. I don’t have the energy to actually to that but I have the knowledge and training. Such is life.

And I have been teaching myself art which is a fun exploration. I can’t do much of that at the moment but I try to do a little bit in there once in a while. This is a picture of an ink drawing I am working on that I will watercolour as well. I am exploring ink drawings and watercolour together at the moment.

Basically, I am coping with a difficult cluster of health issues at the moment. But I am coping. I am maintaining my mood. I am focusing on the necessary self-care. I do not set long-term goals but I set myself one goal for the next day to aim for. I am keeping my motivation to keep on keeping on. I wish I could do more in the day. I sure want to. I have even tried to, to test my limits, and, yeah, hard limit there. So slow and steady for now.

Yet, I comprehend even with my capacity to function low I still have to have some life satisfaction. So I know with that small amount of time I have to function in the day with that bit of energy that I choose to use it every day in ways that will keep maintaining my mood. Not doing the things I enjoy, at all, would be a real blow. So even if I can only do the things I energy for a fraction of the time I used to, I can spend some of my energy on them- for my well-being, my sanity, my happiness.

So I look forward to the vestibular rehabilitation which has the potential to reduce the vestibular symptoms substantially. It takes time and a lot of work, but it would be so worth it. I have to wait for that though because the pandemic has slowed down treatment for things like that. So I am on a wait list. Nevertheless, it will happen and I look forward to better functionality in the future.

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8 thoughts on “A Chronic Voice June Prompts

  1. Hi Nikki, it sounds like you are managing your mood quite well so good for you! Selfcare has to be a priority when dealing with complex health challenges. Let’s hope you get the rehab treatment soon 🙂

    Liked by 1 person

  2. I hope that you get the vestibular treatment soon. I had migraines with aura until menopause, and now I only have the visual auras. Migraines are the worst pains to deal with and always seem to strike at the worse possible time! Did yours get worse during the pandemic?

    My son has had the same pandemic-caused mental blocks. Being so trapped in our homes has made reality very blurry. I hope that we can all cope and get through this time and then we will be stronger.

    Liked by 1 person

    1. My migraines didn’t get worse during the pandemic but I think that is because I was on disability before it hit. I was getting used to my own routine around the house already.

      Like

  3. I am like you, I have to do things in little bursts and try not to burn myself out. It feels like I’m not doing much, but we can only do what we can do. I’m glad you have your art to work on, a little bit of time working on something you enjoy helps a lot. I really hope you get your vestibular rehabilitation soon and that it helps you a lot.

    Liked by 1 person

    1. I hope I get in to the rehab soon as well but they said it might be a bit since a lot of the staff was pulled to helped with the pandemic.

      Like

  4. Thanks for always joining us Nikki, I appreciate it and love to hear from you. I’m sorry about all the health issues you need to deal with endlessly. June has been a sucky month for me, too, in similar but different ways. Parallel universe like it goes! Sending good thoughts and happy creating!

    Liked by 1 person

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