Nikki describes her experience with multiple chronic conditions in the questions below in our chronic voices series. Follow Nikki at @brianlessblogger on Instagram or on her website at brainlessblogger.net.
What chronic condition(s) do you live with?
Fibromyalgia, chronic migraine, depression, chronic vertigo
More than 10 years
Most of them are invisible disabilities and as such often are not seen as serious as they can be. Over time I have adapted to hide them better to function in society. That just makes it so much more invisible. People never see behind closed doors on the severe days and judge you on your best days. This is very common with fibromyalgia.
With chronic migraines a lot of people can understand a migraine. It is that they can happen so frequently that is beyond comprehension. It is suggested it must be something I am doing or not doing that must be to blame.
I wish I knew the entire impact it would actually have. If I had known, I would not have held onto some aspects of denial for so long. I definitely wouldn’t have tried to contort my life and push through the pain like I did. I would have instead worked on a better balance and overall well-being and less on trying to fit into a life that wasn’t for me.
When it comes to chronic pain in general, my advice is that pain affects everything. Mental, physical and emotional well-being. All aspects of your life. As such when we are looking to cope and adapt to it. We also have to focus on our entire well-being and life satisfaction.
What’s the funniest, craziest, most ridiculous thing a doctor has ever said to you?
I think the craziest thing was a group of doctors and specialists speculating about the spontaneous nerve damage in my right hand without doing any tests.
Doc: It must be a persistent migraine aura.
Me: Yeah, that is definitely not it, for many reasons.
Specialist 1: You had a stroke in your sleep and that caused the nerve damage.
In theory, migraine disease increases the risk of stroke but if this were the case, one would think some sort of evidence would be required. And maybe I would have had some other symptoms. Any other symptoms.
Specialist 2: All your chronic migraine attacks continuously caused nerve damage in your hand.
Me:Not unless they want to do a case study on me.
Specialist 3: Yeah, no, it wasn’t any of those things. None of those make sense. You do have peripheral neuropathy but it is idiopathic at this point. You have had it so long now it is hard to say what caused it or if it is comorbid with your existing conditions.
Me: Yeah. That sums it up there.
The main thing that has given me inspiration is actually my own resilience. I can’t say resiliency was something I had much of when I was younger. However, I had to develop it. And knowing that I could and did endure the hardest parts of my journey, seeing others do the same, gives me some strength to live through the unpredictability that is chronic illness. Seeing that resiliency grow within me has made me understand that coping has so many factors to it that help me adapt and grow.
Tell us a funny story about an encounter, an episode, a flare up, or a moment where nothing went to plan…but the story is one good one to tell!
I have a migraine story that is funny but wasn’t so funny at the time. Still, I laugh about it to this very day.
I have chronic migraine and somewhere along the line I also started getting episodic bouts of vertigo and dizziness. I had to go to Toronto for a work training thing. So I was travelling by myself. I went there on a red-eye flight. I got there and I was slow to get off the plane because I was just nailed with a migraine from the flight and the lack of sleep. People had scattered as soon as they got off the plane so no one was around. Not a big deal … normally.
This was not normal though. I had an Epic Migraine. I was confused, dizzy, spinny, disorientated and in loads of pain. I just wanted to get out of there and to my hotel. My brain tells me ‘look for the exit sign and let’s get out of here’. So off I wobble to find the exit. I find some exit signs but they lead nowhere. Not exiting the building anyway.
I wander around for a very long time and I can’t get out of what is rapidly becoming a maze. One end to the other I wander aimlessly. I can’t seem to get out of this airport. I ask the few staff I find how to get out and they give me directions. Those directions Poof out of my brain so fast I can’t even remember what they said as they said it. Yet, I go off, determined, in the direction they pointed. Still not finding this elusive EXIT.
Eventually, I call my boyfriend. I say, ‘I can’t get out of this place. I am lost in an airport. I hate airports.’ And basically try to get him to help me from miles and miles away. He calms me down a bit but not much he can do. So I get off the phone. I look around. And what do I see? A Stairs sign. As in, I am on the second floor and the actual exit is on the first floor so I should have been looking for the stairs or escalator but, no, I was looking for an exit.
And so I escaped the airport labyrinth intact. I was in there for a good hour and a half too. And this is why I do not travel alone now.
I find it fundamental to maintain a certain routine in my life and set small productivity goals. My concept of productivity has altered a great deal since becoming disabled but keeping myself occupied while pacing is vital.
Certain things I always do are get up and get dressed. Being dressed and out of the PJs mentally puts me in a productive mood. I set myself a goal of at least 10 minutes of some sort of housework. It can be more but even on a bad day, 10 minutes usually is feasible. This makes me feel like I have accomplished something useful. I then have a more flexible timeline for other productive things; fiction writing, blogging, non-fiction writing, reading, art… the things that make me feel good doing them. I may be able to only do 1 of them. It may be a real rest sort of day. Or I may be able to do 2-3. It depends. But I aim to do at least 1. Then there are the general maintenance and self-care things to do as well.
So I always have a routine of the things I want to do in the day that make me feel good about my day. There are bad days where none of that happens. We have them. I don’t feel guilty about that. Those are self-care and recovery days.
My daily will to do these things comes from knowing what happens when I have no routine and when I am not in any sense productive (what I feel is productive to my level of functionality). I feel stagnant. Overly tired. Mentally and emotionally I slump. Eventually, this slump leads to more of a depressive feeling. And I have developed the routine I have because I know it helps me manage my depression. It helps with my overall well-being but specifically, it helps balance my mood. For me, personally, I have a mental and emotional need to maintain a certain routine. A very flexible routine, of course. But, nevertheless, necessary for me to have the motivation to get up in the morning. A purpose in my life. A sense of accomplishment. All things my brain seems to find necessary.
I have tried 1 billion million trillion things. Okay, maybe not That many but it is close. And some have not helped at all but some really groove with my brain.
Cognitive Behavioural Therapy worked great for me in regards to treating and managing the tangled mess of chronic pain and depression. I just needed someone to help me wrap my head around the way I was thinking wasn’t working for me. And how to adjust that.
Meditation and relaxation breathing are awesome for me. In the beginning, not much. Seemed like I was saturating in Pain-ness. And just focusing on all the pain intently. And that isn’t cool. But then I began to find meditations that worked for me and my pain. And definitely, relaxation breathing helps calm me down.
Exercise, as in quite mild exercise, also helps me but it is very tricky these days with the vertigo. I’m still trying to find ways to work it back in there. It doesn’t help really manage the pain. It helps my muscles not weaken, it helps a bit with mental and physical fatigue and that makes it useful to me.
I suppose therapy was the one that surprised me it worked at all. I have had some bad therapists in the past. One said I was ‘too smart to argue with’ and I wonder why she was trying to argue with someone with depression. That made no sense. That will get you nowhere fast. One was entirely too condescending. Others were just mediocre but they couldn’t get past my wonderfully constructed facade I have built for the last two decades to hide pain and depression. My awesome humour and the way I can just pretty much discuss things on an intellectual level without ever going deeper. That is until I met my match. My psychologist at the pain clinic also had a great sense of humour but never let me just slide with a joke. And was fine letting me intellectually discuss things but never let me skim the surface of anything. So he was pretty awesome at reflecting back at me what was really going on. And that was massively beneficial to me because it really got me thinking.
The first diagnosis I had, other than joint hypermobility syndrome when I was younger, was fibromyalgia when I was 20. I long suspected it and so it was not much of a surprise. And mostly by then, I was doing some things to cope quite well, in regards to university life anyway.
However, back in the day… Way Back in the Day, there was a massive lack of information, there was no real medication for fibromyalgia specifically, there was no specific treatment and so off you go. Just deal. I did try to go off and just deal. However, chronic migraine disease jumped on board and my pain was getting a bit high for me to cope with and live the life I wanted to live.
The greatest challenge for me then and even later has always been this resistance, this denial, this stubbornness to let my chronic illness interfere with my ambitions and desires. And so I don’t let it. And then it pushes Back way worse. Then the emotional toll of that hits me extremely hard. I resented every single compromise I had to make for my health. And then I would just think ‘Well, maybe Now I can try doing this thing I want’… and start all over again.
It took me so long to realize I needed to adjust my desires, ambitions and goals to be realistic to the life I actually have.
With chronic vertigo, I need a whole lot of rest during the day. And at least 1 nap and sometimes more. It is what I call Extreme Pacing. It has taken me a bit to learn how to adapt to this lower level of functionality. So essentially, imagine a day with any activity be it physical or mental requires a period of rest/or nap.
I usually get up somewhere between 6-8 am. I do some basic social media work and blogging at this time. This is peak functioning time before my dizziness gets worse.
I have a rest. Then I have a bath with Epsom salts. On a good day, I exercise before this. I get dressed. And I am ready for my day.
My day consists of a small amount of housework of my choice. A hobby activity of my choice. Some sort of writing of my choice. And then anything I can do while I have to rest. When I am resting there isn’t much I can do because it is to ‘simmer down’ the vestibular symptoms. So no reading and such. More like listening to podcasts. Or watching Netflix. Or a nap. Some days are fewer things. Depending on pain level, migraine intensity, vertigo level. Some days I can’t function at all. But generally, that is it. There is no consistency on when I do things or for how long. That all depends on symptom intensity. I just listen to what my body says these days.
In the days, prior to the pandemic, I would socialize at least twice a month with friends or family as that is important for mental and emotional wellbeing. Once a month was a game night with friends, for example. We still do these at home, by the way, just not with friends. So I should add, I like to do something with my boyfriend, even if that is just chilling watching TV. Or having him kick my butt at Scrabble because I always get every vowel there is.
In the summer, I do like to take walks in the early morning as well before my balance gets wonky.
I am pretty laid out the closer to nighttime it gets. This is when the vestibular symptoms get pretty wonky. So not doing much at this time of day. Just relaxing. Sometimes I draw because that is one thing I found I can do while resting. And I am in bed all the time at 11 pm.
I have learned so many things about myself that maybe I never would have. I have tuned into my creative side and I know I never would have done that. I enjoy the simple pleasures of life without feeling guilty that I am not being productive or have a perfectly clean house or doing what I think I should be doing. I really don’t care about social expectations. I take joy in my passions for the sake that they give me joy.
I have learned my worth and value outside of traditional work. I have discovered a self-identity that isn’t attached to work-life. I see the value in a slower-paced life. I see the value in seeing myself as an embodied being and focusing on my entire well-being.
I have achieved things with my chronic illnesses that I am proud of. I am not sure which I am most proud of. I achieved my Master of Arts. I have written several fiction books, under a pen name, and one non-fiction humour book. I have my chronic illness blog going on for at least a decade now. All these have made me happy and satisfied in different ways.
Fatigue, brain fog and other annoying symptoms make it hard to get things accomplished day to day. Do you have any favorite life hacks you can share with us that you use?
The most important thing I have learned with brain fog and fatigue to accomplish anything is never multi-task. It isn’t good for anyone but especially not for us.
I take a lot of mental breaks between tasks. If I lose focus completely I will entirely switch types of tasks. It gets your brain switched up on what it is doing and can rev it back up.
Sometimes when I am working on something and just lose focus entirely I do a walkabout. Get up, walk around, stretch, have a wee snack and that can help me regain my focus.
I have already mentioned a wee bit of exercise does help with my mental clarity and some fatigue as well.
Also pacing activities is vital, utilizing rest when you need it is fundamental. And never underestimate the value of a quick power nap. I do adore a nice nap.
Do you have a slogan, one liner, or a motivational message that you want to leave readers with?
“I have often said that many people will never understand your chronic illness, and that is okay, you don’t have to validate your illness to anyone you just have to live your life.”