A Chronic Voice: Prompts for September

A Chronic Voice Blogger Writing Prompts for September

  • Finding
  • Researching
  • Dating
  • Reusing
  • Recounting

A Chronic Voice: Prompts for September

Finding

I am finding a lot of things lately. I am finding my voice as a patient and a person. You may find me writing a lot about stigma and not putting up with it and that is because I learned the hard way that we get trampled over if we do not fight for our rights. I learned that over and over. Until I gained some self-worth back, formed my self-identity again, and realized fundamentally that I do have to fight for myself in a system that often doesn’t have our best interests in mind. I find myself less inclined to give up and more feeding my anger about how we are treated. And I don’t mind that one bit.

I have also found recently with having less medications (for my vertigo) to last to my next doctor’s appointment that my vertigo has not improved at all over the last two years. Not like I hoped it had. It is just as bad without my medication. Just as bad. Which means work is out of the question. Driving is out of the question. And I am not sure what is wrong but it is… enduring. I am not sure how long this medication will continue to work or how long I will be allowed to even take it but without it… it is bad. Today is one pill less than usual and I still have to rest all day. But 1 pill and it is nearly as bad a 0. Severe falling sensations, spinning, disequilibrium, and vertigo. It is so nasty I cannot function at all. And it hurts to rest that much. Fibro doesn’t like that much rest. Three pills and I am more functional. Enough that I can at least do some things and a cane helps to walk. A cane doesn’t help much when it feels like the ground is literally not even there. So it has been disappointing to learn there has been not even a little improvement at all.

Researching

I have been trying to catch up research posts which has been tricky with the vertigo. Brainpower is at a low. All-time low at the moment. So I have done a few but not satisfied with the quality of them. Nevertheless, there has been a lot of research in the fibromyalgia realm lately that has been rather fascinating and could lead to better treatment or more interesting research. I have to catch up on some. But I have mentioned two that intrigue me:

Fibromyalgia small fiber neuropathy

Fibromyalgia and inflammation in the brain

And I have my own research project for a post I want to dig into when I have more energy… may take some time to get that one done.

Dating

I have not been dating in Quite some time. And I never did have to do that ‘when to tell the person you are ill thing’ either. Because the person I was dating I was pretty honest I had an undiagnosed illness and pretty soon thereafter I was diagnosed with fibromyalgia. I can say, he had to make some compromises early on. I mean, I was about 20 and he was 23. I was in University at the time. All fun and games outside of study for most people. Go out and party and such. Not for me. I would go out, yes. Every two weeks. Any other time I would have fun, at home. We would play cards and watch movies. And sometimes if I went out other times it was to play trivia at a pub, not to party and dance and binge drink. I had learned I couldn’t keep up with those my age and it wasn’t healthy mentally or physically to try. So I didn’t. I paced so I could study and attend classes which was hard enough with a chronic illness. I couldn’t work while in University either. And he certainly knew how my summer jobs, all BAD for fibromyalgia impacted me. So he had a crash course in chronic illness long before things got worse. And you know, we had a blast. A lot of really good times. So not an issue.

And I did write about relationships and fibromyalgia

Recounting

I have been looking back at the most difficult work years I had with a hostile boss facing stigma and discrimination… where that and the stress of that made me sicker and sicker with new eyes. It used to be such a painful memory I refused to even look back on it. I think since it led to a suicide attempt I was actually traumatized by the whole thing. And, yeah, my self-worth was shredded. I have been looking at it as a development of who I am now. As a very hard lesson, I learned that has made me who I am now.  Now, I wouldn’t recommend that path to anyone but many of us have dealt with it. We have faced stigma and discrimination and felt that destruction of who we are and our self-worth… just wither inside. It takes years and years to repair. But when it does it is something new that comes out the other side and the new something will never tolerate such things again. And that new person knows we are not to Blame for our chronic illness. And we should never feel that blame or sense of failure, even though we do. But in time we don’t anymore and it frees us to fight for our rights and the rights of others.

For example, Chronic illness- be careful what you tolerate they will use it against you

See other A Chronic Voice prompt posts

August

July

June
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8 comments

  1. Great exploration of the prompts, Nikki. There seems to be more exposure around Fibro and increasingly interesting research, I agree. The ‘recounting’ one is tricky because sometimes it can be cathartic to work through and deal with our past experiences, other times it can be emotionally quite damaging; I’m sorry you had such an awful boss, but you’ve made a really good point about not feeling these things are out fault, and not blaming ourselves for chronic illness. I think blame and guilt seeps in everywhere it can for a lot of us, they’re sneaky, pervasive things.
    Caz xx

    Liked by 1 person

    1. yes and the guilt and blame haunted me for a long time. But not anymore. I think I just got tired of that. It is self-stigma and I don’t tolerate it in others pushed on me so why do I tolerate it in myself?

      Liked by 1 person

  2. Thanks for joining us again, Nikki. There does seem to be quite a number of research on fibro coming up, perhaps due to more awareness on it in the media in general as well. Interesting to read about dating from your perspective; everyone only gets to live one life so it’s fascinating in that way! Sorry to hear about the continuous vertigo issues…they should horrendous to deal with, maybe even more so than the pain at times. Hope you start finding relief soon 😦 Sending hugs xxx

    Liked by 1 person

  3. I’m glad there is more research being done into fibro, it really does help. Look at cancer, what did we really know about it years ago, how many people died never knowing they had cancer. It hasn’t become more popular, it’s just been researched more which has led to more diagnosis and more treatments. People forget that other conditions need research too, and I’ve even been put down for trying to raise awareness of my rare condition. In fact my self esteem took it’s hugest bump ever just because I had an article printed in a magazine. So many people gave me a hard time over it. Sorry, I’m rambling…
    I’m also sorry that you’ve had to endure your illness from a young age. I know now that I had symptoms of my condition for many years but it wasn’t so bad and I still managed to enjoy my younger years. At the age of 50 my illness got so bad it left me paralysed and now 3 1/2 years later I still can’t walk. It’s so sad to hear from young people who are suffering and being failed by doctors, or not having a cure or even a relief of symptoms.
    Keep fighting and using your voice and hopefully, one day, maybe soon, you’ll find answers and relief.

    Liked by 1 person

    1. It was difficult being young and sick for sure. Like you have spent your whole life that way. Losing days and days to pain, but it does become just a way of being that you cope with.

      Like

  4. Yet again I have really enjoyed reading your perspectives on the month’s prompts, Nikki. It is so commendable that you are taking the initiative in doing your own research into fibromyalgia. I don’t think it’s something that many of us do, although I do sometimes when symptoms allow! I think sometimes it can be daunting and intimidating with confusing medical terminology. I really do hope that you find some information and new therapies that will help you and improve your quality of life. Take care and hope the rest of September is kind to you x

    Like

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