There are times when we are in recovery mode. As I am now. I am tapering off a medication which is flaring my vestibular symptoms. This is severely decreasing my ability to function. At the moment. So I am surviving.

That is fine. It is necessary.

What I question is whether we think we can thrive with chronic illness or chronic pain? Or do we self limit ourselves? Do we defeat ourselves before we do anything due to past experiences, past beliefs, others opinions about us that have damaged out self worth, our thoughts that we have no value or are a failure… and so on and so forth such that we do not try to nudge our limits. Do not see ourselves thriving within our limits. Or achieving any level of Life Satisfaction.

I really wonder about this because I encounter so much resistance to the idea of thriving with chronic illness, chronic pain and disability. Like we are defiant that it is Impossible we could ever thrive because everything will always suck all the time forever no matter what… so why try?

Partly I think it has to due with resilience. I say that because it wasn’t so many years ago I had very little resilience. Any setback and I just crashed and burned. I just didn’t bounce back very well at all. Setbacks really, well, set me Back. And back and back. And to the point often that I was overwhelmed. I had no hope. No real goals. No real sense of accomplishment. I was in survival mode All the Time. I existed there and that is not sustainable. It wasn’t sustainable. I burned out. I was suicidal. I was severely depressed. I had no self-worth. My sense of self was very damaged from my own thoughts and the opinions of others. And it took a very long time to recover from all of that. I am still working on some of that, to be honest. My self-worth needs some work. Valuing what I can do still needs some work.

Anyway, clearly I was not an example of thriving with chronic illness and chronic pain. Because my pain was completely unmanaged, which led to severe depression… and then it just went downhill from there. I spent about a decade in survival mode. I almost didn’t make it out alive. I can tell you how dangerous it is. How brutal. How difficult to get out of. And if this is you, right now, then read Survival mode is not meant to be lived in. (Being a pandemic, this will impact access we have to resources and treatment, however)

I am not an example of Thriving right now. However, I aim for it. I strive for it. I want to achieve more well-being and greater life satisfaction in this life.

Chronic illness: Thriving and surviving

Things to consider posts

Our Chronic Pain Story: Plot
Our chronic Pain Story: Theme
Our chronic Pain Story: Author
Two common limiting beliefs

Things to consider for Life satisfaction:

  • satisfied with who we are as a person? (self-esteem)
  • do we have a good sense of self-identity and value who we are?
  • do we feel like we contribute to society, or our family, or our personal lives in a way we value? (productive in a way that we value)
  • do we feel like we contribute a positive experience to those around us- family, friends, co-workers? (positive social relationships)
  • do we fear the future? Or look forward to it? Prepared for it? (sense of control)
  • How is our overall mental, physical, and emotional well-being?
  • How is our quality of life?
  • Do you feel there is meaning or purpose to your life?

Some of those factors are harder than others to achieve. Quality of life for example fluctuates with chronic illness… erratically. But there are factors we have control over.

One thing about life satisfaction I always work on is meaning and purpose in life. Is there something you are passionate about? Is there something that drives you?

For me I get purpose through my blog, my fiction writing and my art. I value these things. They drive me. Give me purpose. What is it that you want? What is it your passionate about? What goals do you have?

Another vital one is mental, physical and emotional well-being

Obviously, we have problems in this area. But striving to make improvements of any sort goes a long way. We all know doctors only help so much. Often it is the little things that help ourselves mentally and emotionally that help us cope that improve our well-being, our capacity to cope, and our quality of life beyond what medications can accomplish. Because no matter the medication it cannot solve the problem. It just helps a bit. Well, some medications help a whole lot while others very little. It just depends. But often we fill the gaps with loads of coping strategies.

One that is underestimated is our sense of self, our self-worth and self-esteem

Our sense of self, or self-identity can be lost along the way. Our self worth can tank. And often this leads to a sense that we can’t do anything. That we have no future. That we can’t accomplish anything. That we never will accomplish anything. That we are useless. And with this we place such limits on ourselves we never get beyond that. We no ourselves out of a lot of possibilities. We never attempt things we might otherwise try. We never nudge our limits which is how we progress… testing our limits. It is a tricky problem though because it is a whole lot of negative self talk we have to work through to find that sense of self underneath, the sense of value again.

Striving

I am pretty damn sure there are some shining examples of people with chronic illness that thrive. Likely some famous person with resources and money. Whatnot. Maybe outliers who are like inspiration for us all… like, hey, why aren’t you like that person with a severe condition that overcame their ‘challenges’ and did such and such? Well. Yay for them.

Clearly, I am not an example of thriving with chronic illness. I am currently laid out with these vestibular symptoms. I do not need to be told to self-isolate due to the pandemic because I am really, really having mobility ‘issues’. Nevertheless, I mentally and emotionally thrive a whole lot better than I used to… and every tiny bit of progress there has helped me immensely. And I continue to progress in those because I believe working on those helps me cope and builds more resiliency.

I just want to not just survive. And usually that is the case, aside from setbacks. However, I did develop the resilience to get through them a lot better than I used to. For that I am extremely thankful. *pats brain-good job, brain*

I want to continue to Strive.

I think it is important for my well-being that I continue to strive for Things. Better well-being. More Life Satisfaction. Goals and desires and dreams (like writing more books, and working on my blog, and becoming a better artist). Better physical well-being is included in this. I understand my limitations but I know certain things may help me like exercise and lifestyle changes- when I am able.

I understand I do not have unlimited possibilities. And I can’t have grandiose ambitions. I know that right Now, I am pretty limited and I have to have teeny tiny goals. I know right now I have to rest more than anything else. But that is Now. I anticipate I will get a proper diagnosis for the vertigo sooner or later and with that will come treatment, lifestyle changes, and likely vestibular rehabilitation of some sort. And all this will slowly improve my quality of life giving me back some actual usable hours in the day. And even then, I am quite aware I am limited in my goals and ambitions. I am quite aware I can’t work right now. Maybe never. Maybe not.

I just want to keep striving for More. And that is what I want for everyone. A bit More. Anyway you can get it. Any bit of life satisfaction you can squeeze out of existence I want that for you. I know that we can have immense setbacks. I am in one. And I know we can have times where we are stuck in survival mode and when we are that is when we really, really need to work on getting out of it- it is dangerous. And when we are stuck in survival mode that is when we need the most help from medical professionals because often it is unmanaged symptoms, pain, mental illness all together that is tangled together and so impossible for us to cope with without proper treatment. I also know chronic illnesses compound and we can just get worse- such as when this vertigo jumped on top of my chronic pain. Not cool. My quality of life and ability to function went way down. That does take a massive adjustment period. And it means more limitations and less usable hours in the day. That takes a lot to cope with. I certainly wasn’t Fond of it.

Demand More

But I have a hell of a lot of fight in me, man. And I will fight for some semblance of a life that I can be content with. I am stubborn that way. Which is why I am so frustrated right now that I can’t seem to Do anything aside from lay on the couch all day. And it takes such effort to just cross the room. But it won’t be that way forever. And I demand More from life. More usable hours. More well-being. More quality of life. Just MORE.

We are going to have bad days. Years even. We are going to have setbacks. All the more important we focus on factors of life satisfaction and things that help us cope. We are so much more than our chronic illness. We can’t let it own who we are. Striving for More in this life, within our limitations, of course, helps us with a sense of productivity, value, self-identity, self-worth and so much more than that. Maybe starting with working on our resiliency. It is funny, but in this society life satisfaction isn’t really Valued. Work identity IS. What do you DO? People ask all the time. Like that is all people ARE. But the factors in life satisfaction are what make us happy ABOUT our lives. They are the factors that make our lives whole. Social life, meaning, purpose, well-being, value who we are, self esteem, quality of life… We tend to value well-being more because we know it is extremely important. But perhaps we don’t consider the other ones as important. However, considering something like socializing (aside from Now, of course, pandemic wise) can be a vital factor in improving our quality of life even if we just socialize for short periods of time once a month or so.

I am not saying your not striving. You likely are. If you are not, then look at the list of life satisfaction factors and contemplate small goals in those categories that might improve your life satisfaction. What things you might try that you are passionate about. What goals you might what to achieve for yourself. What parts of your well-being you could improve and how. What you value about yourself. What you value about what you can do.

And if you are striving, still look at that list and see if there is a gap there. An area of your life where you may have a lack. Like maybe you are working hard of your well-being and quality of life, as much as you can, striving for it anyway- but you are a complete hermit and don’t socialize ever (aside from the pandemic because none of us are socializing ever right now) – and maybe adding that in would give you a good mood boost. Or maybe you are Not satisfied with who you are as a person… and your self-worth just isn’t where it should be- that is something you can slowly work on improving. I am still working on this one. It takes time.

Recommendation: A good book for building resiliency is: Resilience By Linda Graham

Thriving

I am not sure I will ever be thriving. But I have acceptance. I have resiliency. My mental and emotional health have improved a great deal. My self-worth had improved a great deal. I value what I can do and do not ficus on what I cannot. I know what drives me. I know what I am passionate about. These have all been Big Steps.

Celebrate Big Steps. Progress is Progress. It is all about Growth. We continue to Grow. As long as we continue to grow, adapt and progress… we will be all good.

Even with lower functionality I still made progress in other ways. And I adapted to that level of functionality.

We may not Thrive with a Capital T. But maybe we do in small ways we progress that help us adjust and adapt and change.

Conclusion

Go forth and strive. Maybe not climb mountains… but maybe small hills? Find those achievable goals you want. Fine those passions to pursue. Value who you are now. Discover your worth. Just find ways to grow. And get that MORE you deserve.

We deserve to thrive. Maybe we never will. But certainly we can strive for better. And we sure as hell deserve more than survival mode- I believe doctors and medical professionals really should remember this one- that we deserve a basic quality of life. Because getting out of survival mode Means Basic Actual Treatment. Which means medical professionals have to actually manage our pain. I know, how bold of me to suggest that. Only then can we get to a level where we can get out of that horrific pit and actually find some just relief from that raw desperation. Then we can strive for more… after that. There is no striving for anything when you are just getting through existence inch by grueling inch.

Buy Me a Coffee at ko-fi.com

How to support my blog!

13 thoughts on “Chronic illness: Thriving and surviving

  1. Very interesting as usual Nikki. I am where you were years ago,hopeless,suicidal,depressed but most of all in a lot of pain. I;m housebound because my legs hurt so much I can’t make it outside. All this happened within a month. I hope and pray that the pain will go down so I can stop crying and just enjoy the simple things in life,walk a bit more, be ina better mood,cook. Just simple things. I keep chasing doctors but it’s so hard to reach them with the covid crisis. It’s dire. Well done to you for being resilient.

    Liked by 1 person

    1. When we are in unmanaged pain it is a situation, I think, that leads to exactly that state of mind. It isn’t fair to you and it wasn’t fair to me to have to endure that. And with the pandemic we are all left waiting for treatments that leaves many of us in really difficult situations. I’m just getting by right now until I get to the vestibular clinic and just can’t function much till then. Unfortunately same goes for the pain clinic. I think too many if us in pain are sort of being left behind and it is dangerous situation for pain that isn’t managed. Lately I’ve been using edibles for pain really since it is legal here. Like I said survival mode isn’t meant to be lived in. It is necessary sometimes… like when we can’t get help due to the pandemic. But it is a fragile and dangerous state… so take care of yourself. In any way you can. And if you need to talk about anything I am always here.

      Like

  2. Thank you Nikki. I feel like I’m not alone when I read your blog. Although chained to a bedwhen I read your story it gives me hope that things will get better some day. I’ve become your biggest fan. I look forward to reading your posts. Thanks for helping me.

    Liked by 1 person

  3. Yeah I hear you. Chronic illness over many years but it was the chronic pain that just really caught me out. I thought I was taking it like a warrior with a stoic upper lip then boom…it was like a cloud of hazy yellow pain that I sought to peer through. It went on and on and on…….still cant remember a couple of years.

    Liked by 1 person

      1. We know we are not alone but it is a solitary journey. I remember one bout when I was at uni. I had a constant cluster migraine and used to cover the windows and listen to TV repeats cause I couldnt bear to look at any light. It was my first chronic pain episode. Why does it always seem to last a couple of years. Glad we have meds.

        Liked by 1 person

      2. It is unfortunately fragile that quality of life is dependant on medication because it can be dramatically changed on the whim of a doctor. As I know with my vertigo meds being recently changed abruptly and now being laid out due to it. There is a certain fear I have about that with chronic pain because I do not trust my capacity to cope with that level of pain long-term without pain management. Maybe now I could. But I doubt it. That is one dark place I never want to be in again.

        Liked by 1 person

  4. Hi Nikki: I suffered chronic back pain for five years. And 2020 is the year I finally found a great pain management doctor (long story), and received right treatment, and now my pain is well managed without any pills or injections. A good doctor makes all the difference, and I am truly thankful. Hope you find a good doctor as well.

    Liked by 1 person

    1. A good doctor and proper pain management does make all the difference. I know it did for my pain management. Sort of stuck on this vertigo issue at the moment but I am sure it will get figured out sooner or later.

      Like

  5. Self worth and self identity take a real bashing when we are struggling with chronic illness don’t they? I have worked with a therapist recently to understand why I beat myself up inside so much, and it has been so revealing. I have struggled to find my identity post-chronic illness, but I’m learning very slowly to place value in who I am rather than just in what I do. It really doesn’t come naturally to me, but it is helping me to get to a point where hopefully I will strive rather than survive. Thank you as always for sharing your insights with us.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.