Can you imagine waking up every day with a jolt?
Being an autoimmune disease patient, you can’t help it. Each morning, before getting out of bed, I have to make sure my whole body is still functioning and in sync with my brain.
It’s scary, unnerving and it pushes you to the edge.
Adapting to the medication protocol, the insane checkup routine and the very lengthy list of the dos and don’ts that come with a lifetime diagnosis are a given, but not once did someone prepare me for the chronic pains I feel on a daily basis.
The first time I had a headache post my diagnosis, it lasted for ten days so I was truly shaken up and my conversation with my physician went as follows:
“Doctor, I’ve had this maddening headache for 10 days and I tried everything. I’m sleep deprived and no amount of paracetamol seems to be doing the trick. Is this an attack? -Mai, this is Multiple Sclerosis (MS). Every day you’re going to feel something new. And I can’t help you unless your sight, speech or general mobility is affected. Please, keep monitoring yourself and have a great day!”
Oh-kay. I guess it’s me, myself and I, then.
The next day, I woke up feeling loads better. The headache finally lifted and it no longer felt like I was hit by a mack truck.
Weird, don’t you think?
Welcome to my MS journey.
With MS, it feels like you’re on a rollercoaster ride. And you’re oblivious to when you’re going to get off of it.
Unfortunately, things never got easier during the COVID-19 lockdown as I turned from being the most carefree person in the world to being super paranoid. Two minutes couldn’t pass by unless I had frantically sprayed my hands with alcohol to the extent that now, I suffer from eczema.
Three months post my diagnosis, I was very much jobless with shattered dreams, a ruined honeymoon and a startling diagnosis. The thoughts that rushed through my mind were dragging. I struggled to snap out of this crushing mindset. In all honesty, looking back on that traumatic event, I needed time to grieve. Not a lot of people understand this, but healing from a certain trauma isn’t linear nor a piece of cake. I, for one, needed to mourn my old self that was lost to MS.
Right now, I’d be such a lousy liar if I told you I’ve my life figured out because I simply don’t. But I’m in pursuit of serenity. Along the way, I found people whom I could relate to. And because a diagnosis usually isolates you, it’s always uplifting to reactivate your sense of belonging. However, always fight the temptation of comparing yourself with other patients. It’s not healthy and it only causes you to feel beat since each one’s journey is different and the variables are just endless.
365 days later, let me tell you what most physicians won’t:
- Your mental health is your number one priority and lifebuoy while battling MS so do your best to stay away from bottling up your emotions because there’s no good coming out of this.
- Take it easy. I know it’s easier said than done but trust me, slowing down your pace when you’re beat and not blaming yourself for the things you could no longer do or be part of is a game changer.
- Accept the diagnosis. And I can never iterate this enough. Once you’re at peace with your diagnosis, you start seeing life from a different perspective.
- Research integrative nutrition and talk to nutrition experts along with personal training coaches about the best customized approaches regarding your condition. These two are vital players in the MS mental game.
The complexity of an autoimmune disease lies in the fact of it being both chronic and totally unexpected so your mind will always trick you into considering the worst-case scenario which is exhausting. But there’s always something you can do…
- First off, constantly train yourself to count your blessings day in and day out.
- Also, being vocal about your illness will help others understand you better and will save many relationships from being flushed down the toilet.
- Last but not least, whenever you’re strained physically or/and mentally, try out the five-second rule, this approach will hopefully calm down the storm raging inside and will help you process your new reality one day at a time.
- Finally, be patient and compassionate towards yourself. It’s a strenuous cycle which you didn’t sign up for it but you’re doing your very best and for this, you should be oozing with pride.
Stay safe, fellow warriors.
Ciao! Until next time. wink wink