Brain fog and fatigue are two common symptoms of MS and I live with both daily. Since my last BIG relapse 18 months ago they have invaded my life, squashed my dreams and completely turned my plans upside down.
Yet others don’t see the daily struggles I face. I look healthy and ‘normal’ and independent, however I’m none of these things, not anymore. In fact, if you were going to judge me, without understanding my condition, you may instead think that I’m lazy, depressed or unmotivated. This can make MS so hard to live with as never have I felt so isolated. Isolated through symptoms which will forever remain invisible and misunderstood by others.
Also, the levels of brain fog and fatigue I face every day can vary, although I am never without them. Some days they leave me barely able to function. I never know one day to the next when this will hit.
Why I’m sharing my MS hurdles
I’m not writing this article to complain about my lot in life and gain sympathy but equally I have no desire to gloss over the realities of my condition and pretend I’m constantly winning at life either. My aim is support anyone living with a chronic illness, to let you know you aren’t facing your struggles alone. I am completely open and honest about what MS looks like for me (although please remember it’s different for everyone).
Raising awareness for our realities, our difficulties and differences can only be a good thing so I set out to do this whenever I can.
So here are two of the main MS symptoms I struggle with daily and the impact this has on my life;
Makes waking up every day feel like my brain is taking on someone else’s hangover.
Muddles my words and my thoughts until they are a jumbled mess of knotted and tangled threads. Meaning I often look and behave slightly confused and probably sound drunk (the fact I slur my words too doesn’t help much here either)!
Leaves me searching for that word, thought or memory which is eternally just out of reach. It is why I enter a room with the best of intentions only to realise I’ve no idea what they were.
Makes me feel like an outsider in my own brain looking in.
Feels like my brain is packed full with heavy cotton wool which I desperately want to scrape out.
Makes people treat me like I’m an idiot.
Feels amazing when it eases a little but then upsets and frustrates me when it descends again.
On my worst days, leaves me barely able to function and I just want to crawl away and hide and not think about anything.
Makes me angry at myself and others. Sensory overwhelm is frequent and adds to my anger too.
Makes the simplest task seem like the hardest thing in the world.
Feels like a herd of elephants pulling me back into my chair to prevent me from standing.
Means I can’t enjoy the moment as I’m thinking about how tired I am and how much I need to rest.
Makes me worry constantly about the impact a task or activity will have on my fatigue, as the effects of overdoing it can last for days.
Means I feel guilty about all of the things I should be doing but can’t.
Means I feel sad about all of the things I want to be doing but can’t.
Shuts me down completely at around 2pm every day and all I can do is rest. This can’t be negotiated with so I have to plan my day around this, every day without fail.
Means no late nights, going for a night out etc (although since having my son that was something I’d stopped doing anyway)!
On my worst days, leaves me barely able to get out of bed and leaves any task feeling impossible e.g. picking up a glass of water (which is right next to me) and taking a drink feels like the most difficult thing in the world.
Can make standing for too long difficult and I’m always on the lookout for a (comfortable) chair.
So you see, for me, brain fog and fatigue are a lot more invasive than getting a bit confused every now and then and needing to rest a bit more than usual. They both completely control my life. This was really hard to accept at first as my instinct was to fight my symptoms and not let them hold me back. This was the worst approach I could have taken though as there’s no ‘powering through’ with MS as ultimately it just makes me feel even worse! Both symptoms are frustrating and hard to manage every day, especially as the severity of them can vary so much.
Accepting brain fog and fatigue and adapting my life
I will never be rid of my MS brain fog and fatigue, although my Tysabri treatment is helping to ease my brain fog a little now. The reality is that I can’t fight them but I can accept these symptoms and adapt my life around them as much as possible to help make life easier. I attended a fatigue management course over 6 weeks last summer which really helped me to stop beating myself up over my limitations and supported me in finding ways to manage my energy more effectively. If you ever have the opportunity to attend one of these courses I highly recommend that you do!
It has certainly become easier over time, just because I understand my illness a bit better and I can recognise the warning signs of when I’m doing too much. I think my close family and friends also understand my limitations more now which also makes getting together in social situations more manageable.
When I first had to deal with the brain fog and fatigue I experienced following my relapse I found it difficult to feel positive at first but it was a huge life change I had to come to terms with and this takes time. In some ways it was a relief to receive my diagnosis as I’d suffered with brain fog and fatigue for years and just put it down to having some unusual quirks and being quite lazy!
I’m in no way happy that I have to live with brain fog and fatigue every day but I am generally a positive person and I appreciate everything that I do have in life, more now than I ever did, I live a generally happy life in spite of my illness and in some ways even because of the way it’s improved my overall attitude to life. It’s made me relax a bit more and enjoy the moment, to be grateful and to make the most of my all-too-precious time.
I really hope this article has helped you if you suffer with brain fog and fatigue, if in no other way than to make you feel a little less alone.
Do you suffer from brain fog or fatigue? If so, how do you find it impacts on your life?
8 thoughts on “My MS hurdles- Part 5: Living with brain fog and fatigue”
Thank you for posting,sometimes I feel so isolated because no one will ever know or be able to relate to how I feel.The fatigue drags me down and makes me feel old before my time.
I struggle with brain fog and fatigue, and find that more than anything I’m probably my own worst enemy because I get so frustrated, wanting to push and do things that I simply can’t seem to manage. I have fibromyalgia and other issues rather than MS, but I could really identify with a lot you’ve said here. Your positive approach and appreciation is so encouraging, I need to remember to hold on to a little of that myself when times get tough. Could you maybe tell us a little more about the fatigue management course at some point? I’m quite curious! I think that taking things bit by bit, working around your limitations and making the most of what you have and what you can do, without getting frustrated with yourself, is so important. Great post! ♥
I think anyone would get frustrated with all the difficulties we face so don’t beat yourself up about that, it’s just about trying to make the best of a bad situation! I was told about the fatigue management course by my MS psychologist and it was specific to MS but the strategies covered could be applied to loads of other chronic illnesses too. I’m pretty certain I could manage a future post on ways to manage fatigue where I’ll include everything I’ve learnt! x
I have had issues with brain fog and fatigue. I am usually intelligent and well spoken person… when I lose a common word it’s quite distressing. I also had an instance where I completely lost the name of an acquaintance I had met numerous times. Not only was it embarrassing but it made me anxious that she then felt I didn’t care enough to remember her name! If you don’t mind my asking…what type of MS do you have, and how long has it been since your diagnosis?
It can be way more distressing than most people realise! I used to be a teacher and felt so bad when I forgot a student’s name. Of course I don’t mind! I have Relapsing MS and I was was diagnosed just over 18 months ago following a massive relapse. How about yourself?
I can relate with this post so much. Brain fog and fatigue are the worst! Thanks for sharing your story.
Super post. I have found kindred spirits on the face book MS communities so I’m sure your new group will be incredibly helpful to young people with MS. Sadly I’m an oldie so won’t be able to join but best of luck with it. x
Thank you Sarah! I really hope our group is helpful to anyone young with MS and yes there are some really great Facebook communities I’m already in too!