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Chronic Voice prompts for February

A Chronic Voice’s prompts for February:

  • Adjusting
  • Hoping
  • Surviving
  • Befriending
  • Awakening

The idea is to pick 3 or more and link-up with other bloggers.

A Chronic Voice prompts chronic illness

Adjusting

I am really trying to adjust to the additional vestibular symptoms over top the fibromyalgia and migraines. And sometimes I feel like I am adjusting to this new level of limitations and existing. And other time I am just so fatigued from it all I can’t get off the couch to manage anything at all. I don’t know. It is hard to adjust to this. I am a bit angry about it because it is so frustrating. And I am off a lot of medication, so more pain, less sleep. Doesn’t help me adjust because I Also have to adjust to That. Makes me cranky. Makes me cranky because I have enough on my plate with pain and dizziness and vertigo as it is without taking out meds that helped the pain and sleep aspects. So a lot of adjusting. What is the most difficult is the level of fatigue being caused by all these illnesses smooshed together. It is a level of fatigue that is too immense to handle sometimes. And I don’t know why it is so thick except that fatigue is a major component of vestibular issues… and I already have it from fibro and migraines. It is like dragging my body through the day. And, like I said, sometimes that means a lot of just resting. And I feel like I accomplish nothing at all, because I don’t, but I understand that sometimes resting is all I can do.

Hoping

I am hoping for the vestibular rehabilitation to help with this vertigo aspect of my existence at the moment. And I have been hoping for a bit but I still do not have an appointment time. Hope for being able to work in the near future, isn’t something I have. I just need to recover from all this before I get back to my ‘norm’ existence of pain. And that is hard enough to deal with, frankly.

Surviving

I am surviving and I recognize I am doing better at surviving with my depression treated with medication. Without that, I know not surviving would occur to me. So I am all for surviving, as a baseline of existence, until I can do more than just surviving. But I have gone to a psychologist for some time in the past and I know a) not to isolate myself b) to find things to fill the void and c) to value what I can do over what I cannot, then I help myself accept this life as it currently is. I feel like I am just surviving really. Getting through. And maybe that is sufficient in the short-term.

Befriending

You know due to illness I have a lot of self-worth issues and lower self-esteem. I have been trying to befriend the person I am with illness. To value what I can do and find worth in it. To not constantly think about what I cannot do. I want to take care of myself in ways that are meaningful to my coping. I think when I worked with unmanaged pain and was suicidal as a result of it… I think I hated myself a lot. And that isn’t a way to live. I had to accept my limitations and love that person. Because just pushing through in survival mode for a Long time killed me, before I even tried to kill me. It destroyed my sense of self in so many ways. And I think that is wrong that was inflicted upon me when I couldn’t survive like that. And I am still a bit angry about it. So now I am trying to just find a place in the world I can exist without self-destructing. And that means living within my limitations and valuing what I can do. Finding my self-worth again. And hope I never find myself living in survival mode again. As it is, everything takes immense effort and has a high cost, but I am enduring.

Awakening

I am awakening to how to live well with chronic illness. This lower functionality I have right now is extremely difficult and I am proud I have the resiliency, now, to persevere through it. And resiliency is something I find extremely beneficial to develop when we have these sort of hardships and unpredictability in our lives. As is some self-compassion with what we cannot do or when we need to rest a lot. Just knowing we are doing the best we can, at the moment. Building myself up is a lot harder than the crash I took. And building myself up is step by step, inch by inch, but worth the journey. Because I do not want to punish myself for being ill. It isn’t my fault. And I shouldn’t deep inside blame myself and think I am a failure because I happened to have gotten chronically ill. It isn’t right to do that to myself. So I want to co-exist with chronic illness in a way that doesn’t hurt who I am as a person and my sense of self and self-worth.

I want things to get better. I am very tired at the moment. The fatigue saps a lot from me. But I want to exist with a better acceptance for the way things are, now, and know maybe it will not always be this way. But no matter what I will persevere because I have the resilience to do so. You have to value yourself even with chronic illness. Yeah, we do not have the potential we would have without illness, and that hurts. And we cannot have the ambitions we want to, and that hurts. But it isn’t our fault. And it isn’t a character flaw. It is what it is. And we must find a way to accept who we are now, not were or could be.

See other link-ups with A Chronic Voice

CHRONIC VOICE PROMPTS: DEDICATING ESTABLISHING, STRENGTHENING, ALLOWING

CHRONIC VOICE PROMPTS: DE-STRESSING, RESTING, AND FINALIZING

CHRONIC VOICE PROMPTS: MEETING, TWEAKING, WORKING
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20 comments

  1. I think that not punishing ourselves is one of the hardest things. And, not feeling guilty for what we can no longer accomplish. You’re definitely not alone Nikki!

    Liked by 2 people

  2. I don’t know if you know but I have chronic pain, migraines, and Meniere’s which is a vestibular disease. I have vertigo often and bilateral hypo-vestibular function. I get it. VRT can help. It really helped me, I was using a walker all the time, now I use it sometimes but not always. Often less than more.
    I’m also bipolar and trying to get my meds straight right now. I understand the wanting to exist but without the meds I don’t know if I would. Scares the crap out of me.
    Nikki, if you ever want to talk, I’m here for you.
    xo Wendy

    Liked by 1 person

    1. I am going to do VRT as soon as I get into the clinic in the city that does it. I am quite eager to try it, since I have no idea what else could help. Just still waiting, which is difficult like this. I think they don’t think I have meniere’s because my symptoms are constant, although the vertigo isn’t (dizziness and disequilibrium and extreme brain fog are constant), but I also have no hearing loss. Granted it has only been a year so it still could be. No matter what it is, I do hope that VRT will help… even a little.

      Liked by 1 person

      1. How soon did the hearing loss start? These symptoms have been here for a little over a year and my hearing test was at about 9 months in. I wonder sometimes if it is that and the hearing loss, which I assume would be left sided, since that is what flunked the VNG test… might not be there yet? I get ringing on that side. Muffled hearing. A feeling of pressure and fullness. But aced the hearing test.

        Liked by 1 person

      2. All of your symptoms sound like it except the hearing loss. Every time you have a vertigo attack your hearing changes. Some comes back, some doesn’t. I had it in one ear for years, but my symptoms then were sporadic, when it went to both ears it went crazy and I lost my hearing very fast.
        The vestibular system has a lot of unknowns.
        I wouldnt wish this on anyone.
        I hate you are having these symptoms.

        Liked by 1 person

      3. I’ve been thinking about you and do you know that mainly the first treatment for Meniere’s is simply a low sodium diet and a diuretic. I assume your diet is pretty good, but you might want to watch how much sodium you consume. I do about 1500mg a day. I used to try to get about 1000mg but the Duke doctor said that was a bit low.
        I thought it couldn’t hurt to try. I know some people do well with just that. I’m not one, but feel it doesnt hurt so maybe it’s doing something. Eh. Who knows.
        You are really on my mind.
        xoxo wendy

        Liked by 2 people

  3. What a raw and beautifully written reflection. So much surviving, so much resilience, and that glimmer of hope. It must be quite hellish now I’m sure; know that I and many other spoonies out there are rooting for you, and understand what you’re going through. Sending good thoughts and love!

    Liked by 2 people

  4. A beautifully raw and honest post Nikki. Know that you are not alone and everyone is thinking of you and rooting that the therapy will be successful for you so you can see and feel improvement. I can appreciate how hellish the dizziness and other symptoms must be for you. Wishing you all the best. Rhiann x

    Liked by 1 person

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