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?