I don’t even know where to begin with this blog post. Life has been as busy and hectic as ever. I feel like my feet haven’t touched the floor, it’s literally been one thing after the other. But for the majority of it, my MS has played on the back burner.
I started writing this post on a flight home from Dublin a couple of weeks ago, tried to finish it on a flight to Naples for my friends wedding last week but failed miserably & fell asleep, so then tried a final attempt on the return flight, and yup you guessed it, failed and fell asleep again..so I am determined on this train to London I’ll finish it!!
So in between feeling like I live on planes, Ive feel like I’ve been living and breathing my job…my grass is starting to resemble a mini amazon and my fridge consists of cherry tomatoes and Corona. So you’re getting the picture of how much time I’ve actually had, to do them normal functioning things adults are meant to do.
I turned 33 as well. Thirty bloody three. How the heck did that happen?!? Nah I’m ok about it, I’ve got my shit sort of together and I’m sorta happy so I won’t be having a early thirties mid life crisis just yet.
So couple of weeks ago I was down south and then over to Dublin for a few days, business and a bit of pleasure. I wasn’t feeling too hot on my final day, which was a combination of trying to counteract MS fatigue with copious Expresso Martinis (do not try this at home) so I was sat there on a Ryan air flight, and even the colours were offending me, never mind the fact I was stuck on a middle seat…then the lady next to me doing the cross word tapped me quite abruptly on the knee and asked me to turn the volume down on my headphones, normally I’d make an effort to be polite, but she looked at me like I was sat next to her with an 80s ghetto blaster on my shoulder. I just looked at her, didn’t say a word, turned it down (slightly) and closed my eyes. Then we have the guy to my right…as I nearly collapsed trying to lift my case into the over head locker he just stood next to me, watching. So when I fell and nearly took his left eye out with the handle, I wasn’t as apologetic as I normally would have been. He also ordered 2 large whiskeys which was turning my stomach, had a suit bag hanging off my seat and was seriously close to encroaching my personal arm rest space. So yeah in summary I was sat between two people who 100% thought I was an absolute bitch, and at the time I didn’t give a flying f**k.
As a normally sane (sort of) and polite (99% of the time) upstanding member of society, my only defence is this is what fatigue does to you. It’s not tiredness. It’s literally an effort to blink. Every step for them last few hours in Dublin was like dragging a dead donkey in an Asda trolley filled with bricks, bloody lots of them. So when I curled up on a couch in the middle of hotel lobby after checking out, and lay there for 2 hours not really able to move, I genuinely didn’t care what people thought. But, as everyone around me knows, I am my own worst enemy. I’d be lying if I sat here telling you all that I don’t try and fight any MS symptom I get, and not always in a good way. I just can’t accept defeat very well, so struggle so much admitting it’s winning (getting to me!) I will very very rarely tell people if I’m not feeling too good, I just take myself off into my little world and hope it doesn’t last too long or give my MS nurse a call to check if I need to go into hosp. It works for me, but I do sometimes think people can forget what I’m dealing with and that sometimes they can accidentally expect a bit much from me, probably my own fault for not harping on about it all the time isn’t it…but it can get a bit frustrating. I sort of feel guilty for reminding people…maybe it’s more that I hate admitting it myself… ok I’m getting deep here, I’ll move on.
So all of this stubbornness / embarrassment / ignorance in turn means I carry on….carry on doing everything at 100mph, carry on working stupid hours and agreeing to everything I can possibly do to make my work better and finally travelling here there and everywhere making memories & having fun, lots of it. Am I going to change? I’d like to say I’ll chill more and start being honest with people when it’s effecting me, but I probably won’t and my inner FOMO (fear of missing out) will probably win….and I justify this by remembering what the neurologist said to me back in June about my 90% chance of developing into progressive MS (the nastier one) by the time I’m 40, and all rational thoughts disappear and I start planning my next adventure. I know this isn’t the “correct” “textbook” approach to dealing with an illness like mine, but this is my way. I think it’s a very personal journey and you should always do what feels right and works for you…I will listen to my body I promise (if it shouts loud enough!).
So back to this turning 33 markarkey, here’s a few things I’ve learnt…
– No matter how shit it gets, life goes on. Pretty obvious I can hear you thinking, but I genuinely feel like I’ve gained an extra layer of armour. The serious stuff I don’t let drag me down. Please note the reference to “serious stuff”, I’ll come back to that one in a bit!
– If you want something, go and get it. When I come out of hospital and couldn’t really see or walk, I had this plan in my mind that I was going to go and buy a house, get back to work 5 months early and have my life back on track by Christmas of 2016. If I told anyone this they would have looked at me with one of those “ah yeah I’m sure you will” looks and probably didn’t believe I could make it happen. But I did. This is what I try and tell people when I speak to them after their diagnosis. Don’t stop going after what you want, use the dX as a catalyst to make you work even harder to get it.
– Eye patches have never been and never will be sexy.
– Neither will crutches, however much you try and pimp them up.
-I’ve had a rude awakening about what a friend actually means. When the chips are down, it’s true what they say, you see people for who they really are and what you mean to them. It’s a relief in some sense because I no longer go out of my way for people who don’t do the same for me. It’s so simple but I have always annoyingly been a people pleaser, well was. And actions speak way louder than words. I’ve got loads of friends but this past year has helped me determine who are more in the acquaintance bracket now…
– Even though I have this incurable debilitating brain disease (they really need to come up with a less depressing description dont they) I still get stressed about the stupid little things. The boys who don’t text back, the outfit I can’t find, the silly little arguments over nothing…and despite people telling you that you shouldn’t get stressed, i 100% guarantee that suddenly getting an MS diagnosis does not make you immune to this shit.
– I started off a year ago being scared to tell a guy I had MS. With one guy I dated over Xmas it took me a couple of months…the most recent guy, 2 days. So I’ve learnt now that it’s no big deal. I didn’t tell the Xmas guy cos he was a bit weird looking back, he would cry and have all these emotional breakdowns (yes I ignored the red flags) and if I even ventured past discussing what I’d had for my tea, he would clam up as tight as a lid on a jar of pickles. Then the most recent guy, it felt really natural and he was cool about it all, he totally helped me get over the fear of being honest about my MS without even realising, it just wasn’t an issue and we had a ball, it was like singing karaoke for the first time…really wasn’t as scary as I thought…
– And finally, I have eventually realised I am one of those people that can travel with just hand luggage…it’s taken a long time and resulted in Natalie (my bff guest blogger) and myself actually coming close to blows…You see when she told me I only had hand luggage I nearly had a breakdown…what? I can’t take an extra 8 bikinis and 4 curling wands for different curl thickness (anyone get me on this one?) but she actually came to my house, made me plan my outfits, limited my electrical appliance allowance and I’m proud to say I no longer have mild panic attacks at the thought of not packing every pair of shoes I own or taking 12 spare outfits “just incase”. I’d say this one is the biggest deal for me yet… 🙂
Thanks for reading as always and for all the emails.
We had our first meeting last week about the Young Persons Network that I’ll be setting up with the MS society very soon…who would have thought eh that this time last year when I couldn’t even say “I have multiple sclerosis” out loud, that now I’d be writing about it on a blog and actually arranging to meet loads of people to talk about it. Well anyway I’ll be posting more info very soon, watch this space!