I’m writing this in a state of exhaustion due to an extreme bout of insomnia that I’m attributing to my last steroid treatment almost a month ago so this is either going to be an inspiring article or an unintelligible mess.. let’s find out 😂
This is the advice I would give to myself after my diagnosis in July 2016 if I could somehow time travel or whatever, by telling myself what I did wrong. It’s also the advice that I would give to all the newly diagnosed who are lost and need something to guide them into this new territory. Not all of these experiences will apply to every patient, but at the same time I feel like they can apply to a plethora of conditions and diseases- not just MS.
So let’s get started, strap in and enjoy the shit show!
Ignoring the reality
When I was sitting in front of the computer screen that was showing images of my brain lit up like a Christmas tree I cried. I don’t know exactly why I cried because my knowledge of MS was incredibly limited but just hearing the words “multiple sclerosis” shook me to my core. I didn’t understand it but I remember charity events in school so I knew it was serious whatever it was. I cried for about a minute.. that’s all. When I finished I announced that that was the only time I would cry and whew boy was I wrong! But I left that day planning out my next job and wondering when I could go out with my friends next.
This went on for months, me living my life care free and leaving MS in the back of my mind. I often wonder if maybe I had taken it more seriously would I have been even slightly more prepared and primed for what was to come. Mistake Number one.
Not educating myself
I knew the basics. The bare minimum as it was. It’s a learning curve type situation most of the time but I was very firm in the stance of not googling symptoms (because we all know how that ends) so I just endured with high hopes. I only regret that I didn’t get more involved in support groups or had more interaction with my hospital team because I ultimately payed the price.
This eventually resulted in me having my first relapse- completely unbeknownst to me. Even when I had reached the point of having to do my Christmas shopping in a wheelchair I STILL had no idea that I was in the midst of a relapse. You might be saying to yourself “how on earth could you not have known?!”, easy… because I genuinely did not know what a relapse was. It’s because of this particular relapse that I now can’t walk properly and have completely lost the use of my right hand. Knowledge truly is power.
Pushing the boundaries
I’ve always heard health gurus and the sort go on and on about “listening to your body” etc etc and I never ever did! In hindsight I should have known I had SOMETHING wrong with myself but I didn’t listen to what my body was trying to tell me, and even after the diagnosis that didn’t change. I was doing THE MOST! High intensity exercise classes, shopping trips, insane nights out and every form of over exertion you can think of!
I’m not saying that I shouldn’t have done those things, but maybe in moderation. The strain I was putting on my already stressed body was killing me! The best advice I can give anybody in my position is to take your time! There will be more opportunities to enjoy life, you need to allow yourself the time to relax and chill! This is where hygge plays a major part in my life. Enjoy relaxation and comfort when you can, your body and mind deserve it!
Opening up to the wrong people
When something like this happens you want to talk about it. You need to talk about it or you’ll bottle it up and lose your mind! And trust me, other people will want to talk to you about it too- you just have to identify those who are there for support, and those who are there for personal gain and utter intrusion.
Not to sound self involved or anything but you need people to help you through this stressful time by contributing to the discussion and maybe even thinking about things that you yourself maybe overlooked. Beware of those who just listen and shrug- they are the ones that will use your situation as coffee topics with others. I was far too open with my situation with those I thought were there for me but they all showed their true intentions in the end. I now have a very small circle of friends and family that I know only have my best interest at heart and I cherish them. I have no time for those who are purely nosey.
Allowing others to downplay my illness
I knew from the outset that I was being muted by others. They would almost gaslight me to a point where I didn’t even believe in myself and doubted what I knew I could feel. Being diagnosed at the age of 25 was absolutely not unheard of, in fact the general age of dx is 20 – 40, but there seemed to be some assumption that because I was diagnosed so early in life that I would have many years before it would become a SERIOUS issue. I allowed this assumption to be placed on me and in doing so I was almost afraid to tell anybody how sick I really was.
I allowed myself to be mistreated over and over again by my medical team because they were telling me how I was supposed to be feeling instead of listening to what I was trying to tell them. I would write out bullet pointed lists of new symptoms and issues to be brought up but would end up too afraid to bring it up in meetings. It is not ok to be repressed by medical professionals or by anyone when you are seeking help. It’s very upsetting to feel like you’re telling lies when you’re not because of other people. You have a voice, use it!
Not asking for help
Working in the security industry gives you a heightened sense of your strength and power. I was the girl that did everything by herself and never needed help and I was desperate to cling on to that attribute. That’s what made me too proud almost to ask for help.
It’s ok to need help, there’s no shame in it! The hardest part is asking for it and the second you do life gets easier. It took me a long time but I identified the things I needed help with and now life ticks by hassle free! It’s nice not having anxiety about tying your laces anymore, trust me!
Before dx (diagnosis) I was never home. I was working and out of the house upwards of 16 hours a day including travel, when I wasn’t working I was partying or traveling across the country and abroad and being home was completely alien to me. Nowadays the thought of leaving my cosy safe home fills me with apprehension and dread.
As you can imagine going from one extreme to the other was not easy to deal with, so Instead of reaching out and explaining to my friends that I would sometimes not be feeling up to certain events or couldn’t do quite as much as I used to- I shut them out and completely isolated myself. This wasn’t something I seen happening but even if I had, I probably wouldn’t have been able to stop it. And I’m not sure I would have anyway as it was a great way of showing me who my real friends were sequentially. Maybe I should have surrounded myself with loved ones but I interpreted my illness as a burden on others so isolated myself so as to spare others the bother. I’m still working on that, but I’m still there.
All of these ordeals are learning curves. If I had not experienced these things then I would not know what I know now. I wouldn’t necessarily take them back but I wish I had a little heads up. That’s mainly why I’m writing about my MS in the way I am, I want to be a source of guidance for those who are about to embark on this journey and to let them know they are not alone. Everybody’s journey is different when it comes to this disease but these experiences I feel are a constant.
So let me know, is there any advice you would give yourself at the beginning? How have you grown with your situation, I’d love to hear!