Check out A Chronic Voice for this month’s blogger March prompts!

Prompts

  • Staying
  • Doing
  • Being
  • Targetting
  • Weighing

A Chronic Voice: March Prompt Post

Staying

Well, I have been staying home a whole lot lately. My vestibular issues have decided to get worse, not better. This means they are not responding to my medication as well and it is very hard for me to be mobile (standing, walking, sitting upright) for long. I require a lot of rest. And if I do go out and about… it nails me hard, for more than a day. It has been a problem. And feeling this dizzy, well, sort of don’t feel up to anything either. I can’t really focus and I am so fatigued. Everything takes so Much Effort. So I just resting. I have made a doctor’s appointment but I really doubt she can help me since they have no clue what the cause of this issue actually is.

Doing

Like with any sudden downturn in health I am was doing nothing at all. Just trying to find some balance and resting, hoping it would stabilize back to where it was, but that hasn’t happened.

So now I have to find ways to do things in a way that doesn’t aggravate the dizziness and doesn’t require much mobility. So laying down activities. I have found propping myself up on the couch with the laptop has helped me with using the laptop without getting significantly worse from sitting up. And I was thinking of listening to podcasts because reading is quite hard when you are so dizzy. I have just recently, after some time, returned to my drawing hobby… again propping myself up on the couch and sort of doing it that way. It is difficult to do that way but it helps to focus on a hobby instead of resting All Damn Day, which is taking its toll on me mentally and physically.

I drew this one on a bad dizzy day so it is more of a sketch than anything, but I think it turned out well. It expresses my current mood and situation. That is why I worked on it really. And it felt good to at least be able to express myself somehow on such a horrific day.

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Being

I do not feel myself lately. I am consumed by dizziness and mobility issues that sucks the energy and motivation from me. It is so very hard to do much of anything. I want to get diagnosed. I want treatment. I want to feel better. I want to know what is going On. But I won’t. Not for some time yet. So my Being in the World is going to be severely limited for some time. If I had any energy at all this would cause some sort of emotional response or melancholy but I am just too dizzy to have even that.

Targeting

My only targets for this month are to find things I am capable of doing while laying down to pass the time so I do not go completely nuts. And try to push my limits a wee bit by getting out of the house for short durations… so I do not go completely nuts. I also want to try some laying down exercises because my fibromyalgia pain is getting very cranky with this need to lay down all damn day… and I need to stretch or do some exercises to help with that… just a little bit. I also aim to keep trying my new migraine med Aimovig this month and see if I get any results from it (so far not so much so we will see).

Weighing

It weighs heavy on my mind that this is how it is going to be for some time. Or forever. I feel pretty discouraged that answers will come any time soon… or at all even. And that bothers me. I know we adapt to whatever conditions we have to but I don’t want to have to. I don’t even think my doctors comprehend how unwell I feel or how hard it is to do things or how low my functionality is getting. It is concerning. It is frustrating for sure.

I have talked about downturns and lower functionality before… when this first tanked on me. And it bothers me that there seems to be no bottom to this that I can adjust to… just gets worse. But either way, it will bottom out eventually and I will adjust. Because I will have to. Downturns are just due to this infernal unpredictable nature of chronic illness. We never know when something is just going to spontaneously get worse. And there is always an adjustment period to that. But we do endure and persevere.

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29 thoughts on “A Chronic Voice: March prompt post

  1. I think a big problem with doctors is that they only see on days you are actually well enough to get yourself together and presentable and make to their office. They don’t see you those days you cannot even get off the couch or out of bed. This gives a skewed picture of your health to them. They hear you say what’s really going on, but the visual is so much in the forefront, I think it just goes in one ear and out the other. I am so sorry you are going through such a trial. I only have pain and fatigue, and that is enough to make me want to give up sometimes. I can’t imagine what it is like for you. ‘Never give up. Never surrender.’ That’s what I tell myself in the bad days. Thank you Galaxy Quest. 🙂 Stay strong!

    Liked by 1 person

    1. Pain and fatigue are a trial enough… I know that for sure having lived there for most of my life and struggled. This is just the straw that broke the camels back with this crap added on. But I am hanging in there… just sort of like a melted puddle of goo though

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    1. Really? Huh. Well, I am doing a lot laying down these days… just the way it has to be right now. At least this new hobby keeps me occupied… because I don’t have much skill at it, it will take a lot of time to improve. Which is the sort of hobby you can get into when you can’t do anything else.

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  2. Hi, Nikki! Since I broke my right shoulder my functionality also tanked, and on high pain days I feel sort of like a hibernating slug. Now that I’ve started physical therapy my fibromyalgia is acting up. It is so hard to relax and accept these low energy periods and not stress about it. Sending hugs and love your way.

    Liked by 1 person

    1. Thanks! I think it is my best one yet… just got back into drawing again. Used to when I was a kid and decided it was a good hobby to pursue since I can’t work anymore.

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  3. I hate hearing how much pain you are in right now, but I understand. Those downturns are awful. I hope you don’t mind, I am saying a prayer for you to get better soon. I tried Aimovig and it was really helping before I became allergic to it.

    Liked by 1 person

  4. I feel your frustration. Resting is fine now and then or after doing something that was more intense than your body is used to, but not when it becomes a daily thing just to effing survive…… I am in the same boat. Not symptom-wise, but by having to spend 98% of my day reclined or lying down because of pain. And it sucks! But what else can we do…. so we continue on… waiting and resting…. and hopefully one day we will figure out our new normal. Cheers to better days!

    Liked by 1 person

    1. I’m sorry you are in the same situation. It sucks balls. I hate it so much. But we never know when thing will improve just a wee bit so that we are not stuck resting all the time

      Liked by 1 person

  5. I am so sorry to hear of your pain, Nikki. Being undiagnosed is such a big ugly bitch. I really really hope you get some answers soon. In the meantime, hang in there and sending love x

    Liked by 1 person

  6. I’m sorry to hear this is what you are going through now. I understand it. Hope you will get some answers soon and that your drawing will bring you joy and creative fulfillment in this time. By the way there is a Facebook group that is specifically for people with chronic illness sharing their creative endeavors. I think it’s called Crafters with Chronic Illness. You might enjoy sharing some of your sketches there! Take care and stay strong.

    Liked by 1 person

  7. I’m so sorry to hear about the dizziness. I have Vertigo and was helped tremendously by a great Physical Therapist who specializes in vestibular rehab. Now, when I get vertigo, I can do the exercises she taught me and it clears up in a day or two. I hope you can find someone who can help you, because it is such a horrible problem.

    Liked by 1 person

  8. Hi, again Nikki,
    Well done on the sketch, it’s fantastic! I often wish that I could draw and be more artistic, but alas, I am absolutely useless! I am glad that you have a creative outlet to help distract you from such debilitating symptoms that you are experiencing at this time. And I am so sorry to hear that the symptoms continue to cause suffering, I hope you will soon find some answers and something that will help ease the burden that it has caused.

    Stay strong!

    Liked by 1 person

  9. Wow you are really being put through the ringer. I remember getting vestibular migraines and having to lie down constantly from the dizziness until I found a physio who had exercises for it. I do hope you get some answers soon and your migraine injection kicks in with good results. It’s no fun living sideways but your sketching is a great way to keep you going fully nuts. take care x

    Like

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