We’ve all been there at some point, go about our daily life in whatever it consists of (work, parenting, volunteering, caring for someone/yourself, leisure activities, socialising…), but if you’re not careful too much of one, or many things, can eventually get on top of you and then BAM out of nowhere the burnout happens. Your body and mind is just like ‘nah mate, too much, i’m out’. I say out of nowhere, upon reflection it really isn’t, we just ignore those vital warning signs whilst we get caught up in the madness that life brings.
I will be the first to admit that I will keep going until exhaustion, before and post diagnosis – I’ve always done it. I find it really hard to listen to the warning signs my body gives me, and why? Your guess is as good as mine. What I do know is that whilst I’d keep going until exhaustion long before my MS diagnosis, I believe that this was me experiencing the exhaustion from my impending MS life that was making itself known on the horizon. This is all I’ve known in effect, I’d fall asleep and completely KO at my desk at work a few years before my diagnosis for example. The complete and utter exhaustion that I would experience was always put down to work, late nights (would clock off from work at 5pm Friday and I’d be a missing person case for the weekend as far as my parents were concerned), and the general antics of an 18-24 year old (whatever that is considered to be). It was absolutely fine though, because that’s what my friends /colleagues were doing too so we all felt this ‘exhaustion’, right? WRONG. Then couple this with commuting to London, Birmingham, and Manchester on an ad-hoc basis for my job at the time when I am based in Northampton – wall HIT. Yes, anyone would feel it but the vertigo, weak legs, cognition fog, and overwhelming exhaustion that you just cannot navigate through (it’s like trying to walk through cement with bricks strapped to your arms and legs) was NOT what everyone was feeling, too. To be honest, it has taken me a good few years post diagnosis for me to FINALLY link all of this up, how I managed to hold down jobs, and do them well during this time is beyond me.
In February 2019 I decided to go back to work full time, yes back in recruitment and audit, yes back to what I knew, no not in Science (what I had been studying for best part of 3 years LOL) and yes sat down at a desk all day. I honestly felt capable going back into this environment with everything that I had adapted to and had learnt about myself and health over the previous 5 years. I won’t say that I don’t know why, because I know full well why I chose to do this, and that was to experience ‘normality’ and to have a sense of purpose of a life that I once knew before my health changed the path. Normality of wearing office clothes, looking smart, being part of the hustle and bustle of a working week in the office once again, constant phone calls, emails, having a stationary pot at my desk, fat food Fridays, that Friday feeling, that Monday feeling… Unfortunately I soon learned the hard way that feeling good doesn’t mean that the disease isn’t active, it is still chipping away at you in the background no matter how ‘well’ you feel and look on the outside. The only difference this time was that I knew the warning signs of an exasperation creeping up on me, so when these started to prop up, immediate action was taken. Again, I felt equipped this time around and that I was making all of the right choices. I reduced to part time hours but unfortunately the ‘damage’ was already done and any semblance of a balanced MS life that I had built up over the years went out of the window, and then the inevitable relapse happened in October. Exactly what happened 7 years before, to the month. The difference was that this burnout wasn’t due to chronic job stressors (the main catalyst in previous years) , but to chronic illness stressors on my body, and the resources I went into working with had depleted.
6 months post relapse, and I/we have a completely different health issue that needs addressing. On the 17th March I returned home and a cough, fever, nausea, headaches, lost of appetite, and weakness (more so than usual, that is!) crept up on me rather suddenly, and that’s when my lockdown began. This was definitely something that couldn’t be thrown into the MS bucket and ignored. Just as I had started integrating back into society, if you will, becoming independent physically and mentally again, rebuilding a new life (for what seems to be the umpteen time – but I have accepted that part as and when health dictates my path over the years) and picking pieces of my life back up where I left it in October (working full time in recruitment aside) – BAM, back to square 1. Except I didn’t, well DON’T have a choice but to STAY IN, REST, RECOUP, and literally DO NOTHING whilst riding this out with the rest of the world.
I was scheduled to have treatment at the start of April, which especially after my relapse was needed, but that has had to go on hold for the foreseeable as it is too dangerous compromising my immune system further during the current Covid-19 crisis. Whilst this social distancing and lockdown palaver is very frustrating and tiresome for the world over, and only speaking for myself; it is giving me time to not only rest (which my God I am feeling the benefits of tremendously for the first time) but to fully decide what treatment to go for as I was still undecided. A third round of Lemtrada or Ocrevus, the latter wasn’t available when I started my Lemtrada journey so that in itself just shows how new treatments are becoming rapidly available. Always one to find a light (no matter how bright or dim) on the majority of situations, I have managed to find one during all of this madness and quite possibly the most positive and needed one of them all. REALISATION. I have burnt myself out for the very last time, I cannot and will not do it anymore. I don’t know what on earth I am trying to ‘prove’ by doing so (still figuring that one out). What I will say is that I needed to experience working back in an environment and leading a life I once had prior to me receiving a diagnosis and treatments (now on my 4th). I felt like that I owed it to myself, my mind and self assurance to confirm that I simply gave it my best shot before finally closing that door on my life.
I don’t think of it as a loss of an old life anymore, but the start of a new one that unbeknown to me, started 7 years ago.