This week, I would like to introduce you to Nikki Albert who runs the brainlessblogger blog. Nikki manages chronic migraines, fibromyalgia and major depressive disorder. Here’s her frank and insightful account of her story.
On a regular basis, Nikki deals with chronic pain, sleep dysfunction, fatigue, persistent migraine auras, nausea, persistent vestibular symptoms, photosensitivity, sensitivity to sounds and scents, and brain fog. She also has major depressive disorder that has been a more recent addition.
Her migraines appeared suddenly around the age of 20. The impact wasn’t severe at that time since they were episodic and well treated with triptans. It wasn’t until a few years later that they became chronic. Her fibromyalgia, by comparison, was slower onset.
Nikki suffers with hypermobility syndrome which gave her fatigue, insomnia, and pain as a child. She believes that is what triggers the fibromyalgia. Since being diagnosed in her 20s, she has learned the hard way about pacing and moderation. For example, learning which jobs she couldn’t do, through trial and error. Then, after unsuccessfully trying to sustain full-time work for years, she was hit with depression. She denied it for some time. It was a brutal and dark time, significantly impacting her ability to cope with pain.
Managing work with pain
Now that her migraines are chronic and the fibromyalgia is more severe, she cannot work full-time. She has tried but found it exceeds her pain limits. Her Major Depressive Disorder arose from just too much pain for too long in the attempt to cope with that which could not be coped with. She is being treated for that mental illness, which has helped her cope with the pain. She now works part-time but currently has problems with vestibular migraines; vertigo, dizzy spells, and disequilibrium. And it seems no matter what she tries to do for a compromise, her body rejects many of those ideas in a hard way.
Despite this, Nikki says she is able to cope through relying on self-care. She engages in regular meditation to manage stress. She paces her activities and moderates all things. She engages in hobbies like reading, blogging, and creative writing. She also has to be vigilant about her mood regulation because of the depression. So she has a gratitude journal and a mood journal. She also relies on a good action plan for high pain days. Overall, she manages her day so she can engage in the world and tries not to become too much of a hermit as she is inclined to do when in pain. She recognizes that socializing helps with mood regulation and her well-being.
I asked Nikki what she has done to get herself to a better place. She says “I must admit when I was working full-time, I was in survival mode and that isn’t a place to live in. And with the depression and lack of pain management, I wasn’t coping well at all. I had to change more than a few things to get out of that”.
She had to find a new primary doctor who was interested in pain management, as she was in too much pain to function. This doctor referred her to a pain clinic which she found enormously helpful. Pain medication, botox and mindful meditation have all helped with her pain management.
She treats her depression by seeing psychologists and taking medication. She has found therapy very important. Her self-worth had tanked over the years from trying to work and failing. She found herself feeling like she was a failure and worthless. She also needed medication to manage suicidal thoughts and to develop new ways to cope with pain.
She ended up compromising on her work and went part-time, acknowledging that she simply could not have that career she wanted.
Through all of this, she has now developed a certain level of acceptance. Living her life with pain. Socializing more. Doing things for a more fulfilling life within pain limitations and coping.
Learning to focus on yourself first
I asked Nikki in what way her illness has been a good thing. She says “In the long run, and I mean the long run (because I am a slow learner), I have learned that my self-worth is something quite beyond what I do for a living. That there is more to life than that. I have learned a slower pace of life is actually far healthier in the long run. That our well-being is important. More than society seems to think it is. But, damn it, it is important!”
In terms of advice for others, Nikki has some great insights. The worst lesson she learned from living with chronic illness was that if you push through it to have the life society deems you should, you pay the price. A vital learning. And that price can be substantial. You have to learn to compromise for your health. You have to understand that your well-being means something. You mean something.You have to understand your well-being means something. YOU mean something. Click To Tweet
You need to analyze your situation closely. If, like Nikki, it is about pain management and capacity to work then you know those factors have to change. It needs to lead to work compromises; flex work, work from home or decreased hours. And when it comes to pain management it could mean changing doctors to going to a pain clinic to seeing a pain psychologist. But when you know things have to change you need to pursue that change or you could find yourself stuck exceeding your limits constantly. When you are in survival mode, no progress is ever made. It is too insanely painful. It can be just too much. Sometimes, it needs dramatic change and you owe it to yourself to do it.
Your well-being matters. If that means taking a serious look at some of the contributing factors in your life then do it. Investing in a pain psychologist who specializes in chronically ill patients is a massive benefit in helping with coping strategies. It isn’t all mindful meditation. It is also some serious mood management.Your well being matters. It isn't all mindful meditation. It's serious mood management as well. Click To Tweet
Managing an uncertain future
As for the future, Nikki is uncertain what it holds. She is at an impasse with working right now. She’s not certain what will happen there or how she will sustain herself in the future. The one thing she knows about chronic illness is that financial instability is certain. And she has yet to solve the dilemma that is working with pain. She only knows her hard limits. The future will determine if she cannot work at all or if there is something out there for her. Yet, with this uncertainty, she is coping well. Her depression is well managed. She is no longer in survival mode (which is a desperate place to exist in). She believes she will sustain this coping into the future, whatever that may hold.
Nikki still has goals and dreams. One of which is to expand her work with her blog. Another is with her creative writing pursuits.
We all have to have dreams.
Thanks so much for sharing your story, Nikki. I can tell you are emerging from a difficult time with acceptance and a renewed sense of self. I wish you all the best as you continue to explore what the future holds. To find out more about Nikki, please find below her social media links: