Hello darkness my old friend…

13th February 2013 frames the before and after of my life. It’s impossible to get through grief that hasn’t happened yet as MS is a constant moving target. So with that, almost 7 years diagnosed and numerous ‘minor’ relapses (I say minor in that I can still function with my life for the best part with a few adjustments and taking a step back for a week or so to recover (to a extent)), Rebif injections, Tysabri infusions, 2 rounds of Lemtrada, more steroid orals and injections in my bum I care to count, physio, leg and bladder botox, and many reluctant trips to the docs and A&E for one reason or another. That has pretty much been the case for the past 7 years… go about my business, take my drugs, style out my many trips/falls, deal with a relapse/flare as and when they come knocking – you know just to remind me that I have a few annoying housemates (had many in a human form in my early twenties, that’s for sure!) Although, like in November 2012, in October 2019 the beast of housemates moved in, and here’s the baggage it bought along.

As far as relapses are concerned this one has, prepare for the list (not alphabetically tho, I don’t have that much time on my hands); knocked me out of work yet again (thankfully I am registered with the bank staff at Northampton General Hospital, so I can work around the constant life unpredictabilities as and when health allows), having to move into my mothers for a bit as I was unable to bathe myself, cook, get myself from room to room with ease, use my straighteners and fill in my eyebrows (a very important necessity I need to continue doing), make a cuppa, not to mention the complete and utter ‘cog fog’ and confusion…the list goes on. You know, just your general day to day life tasks we don’t give a second thought about doing. I have gone from walking unaided (to a point), to using my walking stick, then onto using a walking rollator on a daily basis, and up until recently a mobility scooter (this will have its own post, so bare with on the adventures with this).

Unfortunately some relapses are permanent, some you completely recover from, some leave lasting damage, then you have relapses that last a week or so, even months. I am still recovering from experiencing the odd random moments of blindness in my left eye and the double vision effects I was left with from my bout of optic neuritis 7 years ago (to name one of my many continuing symptoms). I say recover, because, whether this is pure denial or not, I like to continue to hope that I will one day list that as a symptom I have experienced in the past (much like pins and needles, numbness, and the MS hug for example). Now I am almost 3 months into this relapse and things can still turn around, and to be honest this has been my mind set for the last 7 years with each and every obstacle that my body has presented me with, despite the progressive nature of the disease. I am by no means a happy tigger on speed loving life 24/7, no one is or can be, and my God I do have my moments of anger/frustration/tears (lost count the amount of times that I have thrown my walking stick down in frustration). It is the uncertainty of the disease where it does dictate what you can/can’t do that day, week, year (I can’t be the only once who sang the Friends theme tune then).

I may be [at least] 7 years down the line with my MS but after coming full circle with this recent relapse, I’ve been able to finally see that being strong isn’t about taking (or not taking) medication, pushing myself to work, saying yes to things that I know will impact me down the line eventually, or trying to keep up with the ‘assumed’ life of a 31 year old. First and foremost, It’s about taking care of myself physically and mentally. I thought that if I just tried as hard as I could and pushed through, I’d be fine — or even get better.

2019 has been one hell of an eye opener and realisation. A much needed one. However, I do feel that it was needed to enable me to get all of the pent up frustrations of what I have always seen as restrictions holding me back out of my system once and for all.

Still working it all out.





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