A long while back I published About a Bear and talked a little about why I do what I do, and the disability I live with. This sort of personal article is not my usual style, but I have come to realise that I want to change that.
So in amongst my usual coffee ramblings I am going to drop in the occasional article about my life, my experiences with Functional Neurological Disorder (FND from here on in) and my health in general. I am choosing to do so partly for personal catharsis and partly in the hope that a little look into my world might serve some purpose, or offered some comfort or hope for others facing life changing illness.
To Be Abundantly Clear: The following information is my personal perspective, and examples of my methods of coping with issues that arise in my day to day life. It’s not a road map for others, nor a medically tested ideal. If you read this and either have FND, a similar condition, or know someone who does and the information is useful to you, that’s amazing. But mostly the intent of this piece is to raise awareness of the reality of living with complex medical issues and to show how you can, with help and understanding, adapt and make the best you can of your life.
I am going to keep it very simple and take you through a day in the life of your humble scribe. In particular this will let me address a question I get asked a lot:
“How do you manage to function day to day?”-A regular question from people, when my illness is explained.
My FND in a Nutshell
For those who don’t know FND is the primary reason for the existence of Bear Essentials, the long term disability that prevents me from working in a conventional manner, and the reason I am moved to share my knowledge and views in the way I do. If you want to know more about this click here, but for the sake of brevity I’ll summarise in saying that my particular “flavour” of FND causes me to experience multiple episodes of full body paralysis every day, usually totalling between 5 and 8 hours of paralysis.
So as I mentioned earlier I am going to address this question by looking at a day in the life of a Bear. It probably serves us best to run from midnight to midnight so let’s take a look at my mornings.
Usually sometime about 02:00-03:00 I will wake up to find that I cannot move either my right hand or foot. This is the universal warning that I am about to be paralysed for a while. Now I am going to stop myself from brushing over this, in fact I am going to openly admit that the first time I wrote this, I mostly just made the statement and moved on. A few paragraphs down I suddenly realised I had made a significant error in doing so.
You see after about 5 years of living with my condition my instinct is to be rather matter of fact about it, it has become just a part of life, I have learned to manage the emotional and physical responses that I experience. But despite the apparent calm, they are still there. It really doesn’t matter how many times you are paralysed, how much you have come to know that you will move again, that you are well looked after and so safe, it’s still bloody terrifying. I have just learned to manage the fear.
Let me put it this way, try it yourself. Bear with me, set an alarm on your clock or phone for about 30-40 minutes, lie down, close your eyes and commit to the following statement “Until the alarm goes off I will not move, no matter what”.
Now it’s important to take this seriously, if you have an itch, you can’t scratch. If someone talks to you, you can respond but you can’t open your eyes or move. If your phone rings, you can’t answer it. If you need a pee, you need to call for help. If your pet crawls all over you, no moving. Try it on for size for that half hour or so, pretty restrictive right?
Now of course if there is an emergency you can, and should, just stop, if your home caught fire you would leave. But imagine for a moment that this isn’t the case. Imagine that you are totally helpless, entirely dependent on others. Now imagine instead of half an hour, we are looking at 2-3 hours. That’s my early morning, every day.
The Real Morning
Once this early morning episode passes over I am able to stretch out and try and get some sleep. I have to say in this respect I am pretty blessed, my wife often reminds me that I can fall asleep pretty much at will, my head hits the pillow and off I go. I am eternally grateful for this, I really am.
A few hours later, often sometime around 07:00 I wake up in exactly the same position, and off we go again. Of late this second morning episode has been blissfully short, lasting around an hour or so. After one more experience of total helplessness I generally grab a half hour or so of rest, sleep if I am lucky, lying in bed with the comforting presence of my wife.
Once it’s time to actually get up my first priority is a hot shower, or if needed a bath. After a couple of episodes overnight I am pretty sore and stiff, it’s hard to properly describe this, as you’d think lying still would be pretty easy on the body. But if you tried my little experiment above, you may know differently.
When you haven’t moved at all for a prolonged period, muscles ache and joints are stiff, so hot water is a blessing. Thanks to my rather special digestive system (details really not needed folks, trust me) using the bathroom and showering long enough to feel refreshed can take a while. Generally about 40-60 minutes later I can emerge into the world.
On the Reality of Disturbed Sleep
If you have ever had a disturbed night you will know that no matter how much you may get back off to sleep, you really notice that you haven’t been able to just sleep through. If you have had the pleasure of experiencing several in a row (parents I am looking at you here) then you will also know that this is not a fun concept, it’s like the tiredness has compound interest, applied daily.
Now imagine that pattern repeats, every single night, for weeks, months or years. Suffice to say I am sometimes a little hazy in the mornings. On the other hand, it’s worth pointing out just how adaptable the human body is, with time the impact has lessened as my body gets used to it, it’s amazing really.
Breakfast time, something small and easy as a rule, I have never been one for big breakfasts. Just enough to set me up for the day, mostly some gluten free toast and OJ and I am ready to face the world. Funny side note, I ironically don’t have a morning coffee. Despite all the above issues I actually can still come around pretty well in the morning, it’s a talent I developed over the years. Yes, I am one of those annoying morning people.
The Day Ahead
So what do I do with my day? Well firstly I will say that to do anything really functional in my day I have a huge amount of support in place, I have my amazing wife and partner in Bear Essentials, Emily, and I have a Personal Assistant called Heather, without them I would be pretty much trapped at home.
Most days I will usually spend my mornings “working” in some form, I use the quotation marks with great care as I don’t really get paid for what I do, the very nature and randomness of my illness makes it pretty much impossible for even the best intentioned employer to actually enable me to work.
My work consists of writing the articles you read here, and all the background work that goes into doing so. In addition to this I provide consultancy for coffee companies and professionals, and Bear Essentials is available for training and brewing courses for both amateurs and professionals. Now isn’t the time for detail (we have a website for that) but it keeps me busy.
Mostly I will work from a coffee shop or venue that I know well, or from my home office, an adaptation that was enforced by Covid 19. I have never been a huge fan of working from home, the story of learning how might be an article on its own later. So from about 09.30-13.00 I am as we call it “in the office”.
Lunchtime and Learning the Value of Stopping
Around 13.00 I will aim to have some lunch and make myself comfortable in bed. Why? Well there is a mild blessing in the fact that my condition does tend to settle into patterns, while the episodes vary in timing most of the time they happen during similar chunks of the day.
As of writing this I tend to have an episode sometime between 13.30 and 15.00 which can last from an hour and a half to really anything. Experience has taught me that despite a desire to embrace the freedom that I am given by the support network that I have around me it is a poor idea to have an episode wherever I happen to be, unless I actually have to.
Instead by being at home I can ensure that I am as comfortable as I can be and minimise the consequences. As a side note on this one, if you are ever around me and notice that I can be a little particular about timing my meals, the reason lies in the same experiences, after one too many missed meals due to being caught in an episode I have developed the habit of making damn sure I eat regularly.
Body Reactions and Fueling a Bear
After I come around from (usually) my third episode of the day I tend to be hungry, bordering on “hangry” in fact. There is a lot of debate as to why this is the case, indeed for while it was an odd fact that despite being stuck in one place multiple times a day and immobile I was losing weight while eating well.
Turns out that for whatever reason my body burns a lot of calories during episodes, everyday is a school day when you have a couple of rare illnesses. Still, the fact is that as a rule I will try to eat within about 2 hours of an afternoon episode whenever possible, because frankly I feel better for it. After that it’s washing up, and all the usual evening chores that life brings, just like anyone else.
So by about 17:00, I have had at least three episodes and moulded my day around them. As a rule I am pretty tired by this point. Ok so once more I stop myself here, I have left the last sentence deliberately as I wrote it, you see I have done it again, by this point I am not “pretty tired” on many days I am entirely exhausted both physically and perhaps more importantly mentally.
However I have learned that one very important move in dealing with this, despite seeming counterintuitive, is that I benefit from getting out for a walk each evening. The fresh air and some exercise will tend to hugely improve my aches and pains, as well as my mental state.
Once I am back home I will usually either hole up in the den (our home’s “man cave” or rec room) and just chill out, play video games or something similar, or catch up with friends to play a tabletop game, or perhaps watch a movie with Em. This habit has also been an important lesson to learn, early on in my journey I might have been inclined to feel that feeling a little better I “should” do some more. Long experience however, along with excellent counselling and therapy, has taught me that I need to make some time for actually doing casual and fun stuff.
Reaching the Limit
By around 20:00-22:00 I am pretty much done with the day, the combination of mental fatigue and the growing aches of my episodes take a toll. So most days this is the time when I run a hot bath and soak for a while. Interestingly this is also a time when I will, if I feel refreshed enough, check emails and do some minor work stuff, perhaps even write some notes for future articles.
After a bath, my wife and I will curl up in bed with some TV and relax, this is our version of what may be your evening on the sofa with a loved one, the time we can just be together, we just happen to be more comfortable doing so in bed. Sometime around 23:00-00:00 sleep will call and it’s goodnight Bear.
The Ground-Bear Day Effect
Now if you really want a perspective on my life, scroll on back to Early Morning and read it all again. Why? Because my illness is such that a day that doesn’t conform to this pattern, or something exceptionally close to it, is the proverbial “blue moon”. On the rare occasions that I have a different day it’s more often than not because I have more or longer episodes.
I’m just going to let that paragraph hang. No need for more words or explanation, I hope.
The Health and Mental Health Bit
You might well have read through the day above and wondered about the impact of my condition on general health, perhaps you’ve noted the number of considered adaptations made throughout the day, and the health or mental health reasons for them.
The reality of a long term condition which so grossly impacts my physical ability is that I have to be deeply aware of my physical health. It’s important that I set attainable and sustainable goals to maintain myself. One of these is that I will set a step goal for my days.
Now excellent science will tell us that 10,000 steps a day is the general level at which a person can be considered to move from sedentary to active. This number is currently not a sustainable goal for me, while I do occasionally hit it, my non negotiable target is a much lower 7,500 steps. I have my wife to thank for both educating me in the value of this, and for helping me find the target that suits me. I would encourage everyone to try to do the same.
The same logic that moves me to be aware of my minimum needs for physical health, is applicable to my mental health, this was a harder lesson for me to learn, and required a lot of professional help. I actually wrote a piece on mental health & self care which you can read for more information. But the upshot is that I do make space to address my need to relax and to look after my mental health.
Fuck me that’s a Lot! or The Power of Forming Habits
All this may seem a lot of consideration, and you would be forgiven for thinking a life with that much constant management is pretty rough. In fact I had a similar and perhaps much more aggressive response or three, while learning to change my lifestyle. But the reality is that I actually don’t really notice the compromises as much as I once did.
Some great support and plenty of patience has taught me that I can make many, if not most of those adjustments to my day to day life into habits. Now habit is a powerful concept. As humans we are naturally inclined to fall into and to maintain habits, this can be problematic, but also very useful. The short version is that in making things part of my daily routine, I have been able to accept them as habits, and this makes it feel a lot less of a burden. At least for me.
So I am going to once more emphasise that this article is about my personal mechanisms for dealing with my illness and my daily life. I hope that it can help to provide some perspective for anyone having to adapt to a change in their perceived level of “ability”, but the honest truth is that every experience is different and your mileage may vary.
For now, take care, and be well.
About Bear Essentials Coffee
Thanks, – Bear