A Chronic Voice July Link Up Prompts

Prompts

  • Bothering
  • Demanding
  • Nourishing
  • Telecommuting
  • Tolerating

Well, we are already in July. Halfway through this hell-fest of 2020. It has been raining here for weeks which means migraine attacks and fibro flares… but also our flower garden is blooming wonderfully. I am amazed it is halfway through the year. It seems like the year that never happened. Where we all self-isolated. And no one got out and about or did much outside in the world. Very weird and surreal. I missed my very necessary, if rare, bits of socialization. It is good for my mood and well-being. Self-isolating very bad for my mood because depression thrives in self-isolation. So I have been moody. Up and Down. Up and DOWN. Erratic moods. Not cool.

But we are slowly opening the province up… but does it matter? COVID19 is far from gone and I am still high risk so I still have to be three times as careful as everyone else… who seem not to be careful at all (And also think seniors and disabled people are disposable because they believe we are the Only targets of COVID-19, which is false, and really makes me sad they would think I am disposable like that. Or that my parents are. Or some of my high risk friends. How selfish and cruel. But that is another topic altogether). I have to get used to limited outdoor time, being careful, wearing my mask, not socializing in certain areas… it is different. Very different. Strange times. Very strange times.

A Chronic Voice: July Prompts

Bothering

I think what is bothering me the most right now is my lack of a diagnosis for my vertigo. It is clear I have it. Yeah. But it is undiagnosable apparently due to my other health conditions that ‘could be causing it’ such that they do not know what it could be. Awesome. So other than taking Clonazepam to suppress it I have no idea what to do about it. No potential treatment. No idea what to do or Not to do. And I am pissed about it. The left ear that it is in is getting worse. More lost hearing, more intense ringing with more external vertigo attacks. But, oh, well. It is all good. Doesn’t matter, eh? Those attacks only mess me up all day after them. No biggie. And I am only constantly dizzy all of the time. No biggie. It is a severe problem for my functionality and I would like answers. Actionable answers. So I may need a second opinion.

Demanding

I find life very demanding right now. Functionality is so exhausting but I still want some semblance of a life. So I try to have some sort of life but in doing so the toll is massive. I know people want to see me, socialize with me, and so forth but I have so little energy to go around and only for extremely short durations. That is hard to get around. Pandemic or not, I am pretty housebound with very limited energy. I have low motivation with this much pain and dizziness to do much of anything right now. I do try. But it depends on what it is and the price I will have to pay for it.

Fact is, it is summer. We can socialize now here within cohorts of people- not large groups- but specific people. I want to do Things. I am just not very well right now. Not well at all. I can’t even seem to muster up the energy to do basic house work most days. Most every day. I do a little once a week if that. It is becoming a real struggle.

Nourishing

I am trying to nourish my spirit as best I can. With limited energy, I want to use some of that on things that I am passionate about and fuel my soul and boost my mood. Every day I want to do at least one of: blogging, writing, drawing, or reading. Even if it is just One of those. Even if it is a short time. It is just good for my well-being. Some days I can’t manage anything at all and there are more of those than I would like. But I need these recovery days. Because some days the fatigue from the pain and vertigo is just too much for me. I understand that is necessary. But on other days, even though I am so very tired I try doing just one small thing for myself to make me feel good. I think it is Necessary for my overall well-being. For my spirit. For my mood.

Telecommuting

I have had a few zoom chats before. But mostly phone appointments with my doctor. And I like it. I do not have to get a lift there and back. I do not have to be in a moving vehicle which my vertigo does not like. It is short and to the point. I general do not need to be there for many things like refills. I hope this way of doing things sticks around. Because when I go to the doctor’s office there is a 88% chance I will catch a cold or flu… Always happens. I have a weakened immune system. And I catch every damn thing from being in the general vicinity of someone who is sick. So if I can avoid that for the simple things? Awesome.

Tolerating

I am tolerating a boatload of pain. With spring comes a lot of migraine attacks and fibromyalgia flares. A lot of foot and wrist pain as well which I am beginning to suspect is arthritis. And my opiate (Slow release tramadol) is doing nothing to help with it. I have been trying to take walks every day in the morning (when the dizziness is lowest and heat of the day has not kicked in) to help with the fibromyalgia pain because it is getting worse due to the excessive rest I need from the vestibular symptoms. But a 10-15 minute walk is exhausting and excessively painful. And it has been since I started… I have not been able to get past this due to the pain. This is substantially worse than when I first went to the pain clinic and started an exercise routine, which, yes, was very, very slow but not Like This slow or This painful and unable to make any progress. So pain is definitely worse now.

So I asked my doctor to take me off my tramadol. To which she was more than happy to do. Excited, I dare say. And not put me on another because every other one has a high rebound potential for migraine disease- and I do Not need that issue. So instead to put me on flexeril a muscle relaxant which I heard helped with fibromyalgia pain and may help me with my walks so I can breach this max 15 minutes. I know it only modestly is said to help with FM but tramadol was not helping At All so I thought since one does not rebound on muscle relaxants it seemed like a fine option. Also it is something used for migraine treatment as well. So far, it seems to help somewhat and for that reason I will continue trying it to see if it is beneficial in helping me to walk further and exercise in a way that may actually be effective. Nevertheless, it does not help the severe foot and wrist pain when that flares on like rainy days. But can’t get everything you want. I have an NSAID cream to help a wee bit for that since I can take NSAIDs internally.

Anyway, I have been tolerating a lot of pain. Daily severe migraines. Fibromyalgia flares. This severe foot and wrist pain. And tolerating worsening vestibular symptoms as well. It has been a rough spring so far, let’s just say that. But to be fair, this whole damn year has sucked balls personally and for us all. Just a crapfest really.

It is also the season of my discontent. I struggled with my depression the first half of the year and realized it was my SAD medication making me more moody. So I stopped taking it and now I seem to have stabilized again somewhat. But I am struggling with boredom. I just can’t DO much physically anymore and TV is very boring to me. Trying to find things I am capable of to do when I am dizzy as all hell after the morning onward is a tricky pickle. I have found some things but I am only capable of them Some of the time for Short time frames. It is insanely frustrating. I need mental stimulation basically all the time. That is the sort of person I am. But my brain is a puddle of dizzy moosh that can’t focus, think or function now. Aside from early in the morning and for very light activities that do not actually require much brain power. So… bored as all hell.

With chronic pain I have concentration problems and memory issues… and there are ‘issues’… but I can do things precisely because they distract from the pain (as long as the pain isn’t insane levels). With vestibular symptoms you can’t distract from it… it distracts you from anything you attempt to try to do. And sometimes you can’t do anything but lay there like a lump. I suppose that is why I picked up drawing. I can do that dizzy, within limits, because it doesn’t require thought, just artistic flow. And I do not have to be sitting up to do it either.

Anyway, getting a bit frustrated.

See more A chronic voice Prompt posts

June
May
April

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11 thoughts on “A Chronic Voice: July Prompts

  1. Sorry you are having so many difficulties, Nikki.
    In my own case, I got rid of TV, but found You Tube talks/videos, listened to (not watched) at low volume, while lying down, sometimes distract from my symptoms.
    And with less effort than reading.
    I’ve learnt a lot from them, about health topics, for example.

    Liked by 2 people

  2. Hey Nikki – sorry you’re dealing with so much pain! This year’s been rough and sounds like it’s been especially rough for you. I’m all in favor of walks in nature, they can be wonderful, and I’m so sorry that your pain(and vertigo) are messing with this. I hope you’re able to get a second opinion, as it sounds like you need it!
    When my migraines were more intense, I listened to audio books and, as Ken suggested, youtube info sessions. I think things like that may help distract from dizziness since you’re not LOOKING at them, but they are giving your brain something to process. None of this is easy, and I hope you’re able to get some relief soon!

    Liked by 1 person

    1. Thank you! ❤ Don't get me I'm coping well it is just difficult to not be able to do the things I would normally do. Lower functionality is hard to adjust to. I have less 'space' in day.

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  3. Man, I’m so sorry you are having such a hard time right now. I can’t believe that they won’t formally diagnose the vertigo illness. Obviously, most with Fibromyalgia have comorbid issues, doesn’t make them any less, and if it helps you get insurance funding or whatever due to the diagnosis (especially since the vertigo is impacting your daily functioning at such a high degree).

    I hesitate to mention this because I hate the influx of “recommendations” I’ve received since my diagnosis. However, I have gotten benefit from some. One is Low Dose Naltrexone (see fedupwithfatigue.com & melissavsfibromyalgia.com). In the FB group I belong to (https://www.facebook.com/groups/108424385861883/), there are people who take LDN for migraines. I take it for FMS.

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  4. I’m in the same boat of reopening not really affecting me because I’m high risk. I’m thankful for these link ups as a way to connect while we’re still social distancing, and too dang tired for socializing.
    I hope you’re able to get a second opinion on the vertigo and see a benefit from the muscle relaxer. I love the suggestions from the other comments about trying YouTube when TV is boring—I’m on a fashion history and costuming kick which I’m enjoying.
    I hope the rest of July treats you well Nikki!

    Liked by 1 person

  5. I am so sorry to hear of your continued struggles dealing with such severe and relentless vertigo attacks, I know from experience the impact it has on every aspect of your life. It must be even more difficult not having a diagnosis and therefore an appropriate treatment plan. And I am sure many of us can relate to your experience of tolerating pain, It’s hard that often it is the only thing we can do when medication and other treatments offer little relief. I really hope things improve for you soon. Take extra care of yourself for the remainder of the month and I hope the next month will be kinder.

    Liked by 2 people

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