'Nobody realises that some people expend tremendous energy merely to be normal' Albert Camus
I know the French philosopher, writer and journalist Albert Camus didn’t mean to describe the physical effect that MS has on us when he said the above; he was probably referring to a state of being, or a philosophical approach to life. But the quote describes very accurately the extra energy we need to expend when we have MS, before we even begin to appear ‘normal’ to others. Many times this effort fails, and our shortcomings are painfully obvious to normal people. Other days we are able to hide behind a veneer of normality but privately hit rock-bottom later on, away from the outside world. At times I coast between the two extremes; ultimately my level of fatigue makes most of the decisions in my life these days, and it is for me, without a doubt, the very worst symptom of MS.
All spontaneity leaves your life when you live with fatigue. You know you have to do a grocery shop today. Immediately you will need to factor in a short lie-down to recover afterwards. This eats in to your afternoon time. You won’t be able to run through the work you’d planned. Dinner will have to be shortened and simplified. You have processed food and beans. It costs more and is less nutritious. You are ill-prepared for work tomorrow. Housework is not done, you’ve got cranky, you feel bad and you have let people down.
Fatigue has a habit of altering the geography of my mental-maps; a journey to the end of the road seems exhausting one day, filled with potential pain and tiredness. Then on another day I start on the same journey and can go further than my destination without even noticing, to my delight. One day to go into town seems way beyond me but on another day I have a walk and don’t feel like ‘death warmed-up’ after it. On really bad days, my fatigue can so great that I feel like begging those in charge of any public-place for permission to lie down on the hard floor for 10 minutes, and sleep in front of all the passers-by. And I would too! On days like that, even getting dressed feels like a big effort. When I’m in work, on my 1 or 2 day-a-week schedule, some lunchtimes I lie on the floor of my old office with a blanket covering me, and set my alarm on my mobile. It can make difference between spending the afternoon in a horrible slush of cognitive-dysfunction and pain, or an afternoon of productivity and less pain. It’s also given one or two people a huge fright when they have walked in on my nap and thought that someone has collapsed! I’ve learned to put a sign saying ‘Helen Resting’ on the door these days.
I thought long and hard before embarking on this blog-journey and I wanted it to help others feel less alone, to perhaps raise issues for them that they could think about, to their benefit, or to help another person see alternative way of tackling a problem. I decided I had to be honest, but it is a very difficult thing to share with you that fatigue has limited the size of my family. With one son, I can manage (just), but it hurts so much not to have given him a sibling. My fatigue is so great that I could not have coped with two children. Only those who have a problem with fatigue will understand this properly. Normal people have said things like ‘oh, you’ll manage, you’ll be grand’ or ‘oh you don’t want to get to 45 and regret it’. You don’t have any kind of crystal-ball with MS but it’s not called progressive for nothing, and I know I will always regret that I wasn’t able to take a chance on a second child. I barely got through being a Mum to a new-born, age 36, and now, at 41, I feel that ship has sailed. Every time my son asks me ‘Mammy, will you play with me’? or when I see the closeness between siblings, I feel a knife turn inside me, for him. I have to console myself that I have done my best by him, that he has a great network of cousins close-by, and that maybe a second child would have cost me my mobility. I hate the effect fatigue has on my wonderful little son. I know that sometimes he resents me having a rest, although we snuggle down together on the sofa and he gets to watch a DVD, but he’d much prefer a Mammy that did more with him. Our time together is good though, apart from my naps. Perhaps I expect too much from myself? Sometimes I think ‘well, I did make a pizza with him, play hockey down the hall, a game of snakes and ladders, and do the homework with him. One DVD isn’t going to harm him for life after ALL that quality time’.
Fatigue eventually forced me to resign from my good job. I doggedly hung on to full-time work after my MS diagnosis, and watched my social-life, personal time, everything shrink and shrink until all I could do was work, eat and sleep and even then it got too much for me. I got to 10 years post-diagnosis and I resigned, not seeing a solution to accommodating my need for a 2-day week. Ironically, now I am working in my same role but on a 1/2-day basis a week. I take some research work home to complete it. This suits me well because I still get a chance for naps and rests, and the two working-days are not consecutive. It is so fantastic to be back in the workforce and engage my mind in work, librarianship and research.
Fatigue steals in and changes friendships and relationships; they need shared time, fun, chats, and meetings to flourish properly. Some people can never adjust to shorter meetings, no spontaneity, adjusted time-frames, and different venues. No more long boozy dinners out or 3-hour walks in the countryside. When I’m invited to a big family event I am always so thrilled, so happy to see people, but worry about how long the ‘fallout’ will effect me afterwards. A wedding would necessitate my husband taking a day off afterwards to help me out at home, me sleeping a lot the next day, and me feeling below par for up to a week afterwards. People sometimes hear ‘I need to rest’ as an excuse, and gradually drop me over time. I adore the friends who have stuck with me. The amazing ones who have quietly said at get-togethers ‘You can use my bedroom for a nap later if you want’, or who have said kindly ‘Would you be up to that’?, ‘Tell me if I’m walking too fast’? or ‘How are you this week’ and really meant it. Those friends are so, so precious.
I’m probably one of the few people in Ireland who looks at the weather with dread as it approaches 18C+, because I know my fatigue is going to get worse the higher that the temperature climbs. This year I got myself a car with air-conditioning (woo hoo!), and I am hopeful this may have a positive difference on coping through the summer heat. Two things stood out for me when I was on the annual family-day for people with MS this year; the first was that I was deeply envious of the man who brought a lightweight portable-bed with him, they other was that I was the first to leave before the allotted time was up, because I had run out of energy and needed to have a nap in the car on the way home while my husband drove.
I try to keep exercising when I can, for if you can brave it through the initial increase in fatigue and pain, I’ve discovered after 3 weeks you get a reduction in your fatigue. In the winter months, I seem to act like a large magnet to bad chest infections, and they can take a month to clear. Then, I am back to the beginning in trying to get my fitness up. It’s very annoying.
I was really hoping that Symmetrel or Modafinil would work to alleviate the fatigue, but they did not. They gave me insomnia or dizziness, but no decrease in the lumpen form I become without naps. This is unusual though and shouldn’t put you off trying the meds. It’s just a few of us have a bad, or no reaction to them. Hopefully they will work for you. I drink a large amount of coffee and diet coke, and it does have its uses! I take supplements like green tea extract and am hoping to get some N-acetyl-L-Carnitine and Alpha Lipoic Acid to see will they help. They are nutritional products that have been tested at high doses, and there’s an article on PubMed that proved they can work. Maybe they will provide a breakthrough for me.
Normal people say ‘oh I’m exhausted this week’ but it’s not the same as this MS fatigue; it’s like the precursor to influenza, or the fatigue you feel in early pregnancy; a tiredness that you cannot brazen through; it can make you put the coffee-pot in the fridge, the milk in the oven, and forget what day it is. It peels your skin off and makes you feel raw, it turns up the volume of tinny noises and they go through your brain in jabs of pain. I lose patience with myself and others. I forget why it is I’ve just gone upstairs, mix up people’s names; forget major events and even what I’d arranged to do that day. I feel stupid. In December I made a special arrangement to visit a friend to bring over Christmas presents, and then turned up on her doorstep without them. Sometimes people also say ‘sure I did that last week’ but I am privately thinking, yes, but not a few times every day! Happily, after a nap, my brain usually fires more smoothly, the pain lessens and everything is a bit less of an effort. I deeply resent my naps for the time they steal from my life, the things I could be doing if I wasn’t having to rest, but on one level I love them too when I feel a bit recharged after a lie-down.
It all sounds very depressing but that’s one thing I’m definitely not. I am so grateful (incredulous really) about how well I’m doing mobility-wise into my 16th+ year with MS. I know what this MS can do, when it feels like it. Despite crushing, smashing fatigue, I am still lucky enough to manage walks some days; occasionally do weights, cook a nice dinner, get a bit of ironing done, or walk my son to school. Each day like this is like a gift. I expend a huge amount of energy just trying to appear normal (thanks Camus). Not for appearance’s sake, but because feeling somewhat part of the human race, somewhat useful to others, somewhat normal, is an essential component of my mental health. The days I manage to achieve something, I feel such joy. Even it means that later I will crash and have to take an hours’ nap in the afternoon, the sense of achievement is worth every bit of the exhaustion. I can awake with a clearer, functioning mind, and so much less physical pain AND a sense of achievement.
Before MS I had a driven personality that wanted to do all things excellently. MS has made me lower these standards, and sometimes any effort is the best you’re going to get out of me! But the real-me seethes with frustration at this situation. I still want to achieve excellence, exactness, thoroughness and exhaustiveness in things that I write, study, or do. I hate having to see less than 100% efforts in what I create. None of this ‘sure it’s grand’ for me. But MS-fatigue has other plans and sometimes plans don’t even start because of it, much less achieve excellence! Can you ever be ok with this if you share my personality-type?
So, DAMN you fatigue! I will fight you at every chance I get. I will still try to achieve things despite your constant presence. Sometimes I get away with a few days without naps and it feels great. Then very, very occasionally, maybe once every six months I will get a ‘magic day’ where I feel normal. Just for 24 hours. The feeling of euphoria that comes with this is so great that I have no doubt that if a cure were to be found, I would be off running up mountains and jumping out of airplanes for skydives at any chance I got. For those 24 hours I do more than one big thing in the day and don’t get exhausted. I feel invincible. I cram so much into that day that I inevitably crash for the following few days but by God it’s worth it. I can dine out in my head on the ‘magic day’ for weeks afterwards. Here’s too many random ‘magic days’ for you and me ahead. In the meantime, be good to yourself, allow yourself rest and let yourself know that you are taking good care of your health. And if you do try them I hope the anti-fatigue meds work well for you.
Blog originally published in 2014