Grief and M.E.

I’m writing this article from my bed. I’m lying down flat, unable to sit up without overwhelming dizziness. It’s sunny outside, my daughter and hubby are running around enjoying the fresh air. I so desperately wish I could join them. I hate missing time with my family. But unfortunately, that’s not going to happen today. 

I had a near-fainting episode yesterday. I was immediately sweaty all over, pale, clammy, nauseous and my vision had gone cloudy. All I had strength to do was collapse back into bed. A day of sleep and rest in bed later, my headache had not passed, and my vision had not returned to normal. A call to 111 established that I needed to get to A&E to get checked out. 

I was lucky enough to be seen pretty quickly, bloods taken, cannula in. Blood pressure checked. Chest listened to. Everything was seemingly normal. I had experienced “pre-syncope” in medical terms, but the doctor couldn’t find anything life-threatening that could have caused it. With a coronavirus pandemic going on, I was keen not to have to stay in hospital any longer than I had to. A true gem, the doctor understood my M.E, something which doesn’t always happen, and agreed that it could just be part of that. But he didn’t fob me off. He advised further investigation through a cardiologist. So, after 3 hours I was back in a taxi heading home, and very relieved to get back to my own bed. 

But what has this got to do with grief? Well, everything. I have days where I feel I’ve come to terms with life with M.E., but many, many others where I really haven’t. And today is one of those days. 

I’ve come to terms with needing to use a wheelchair. I’ve come to terms with the need to take things a bit easier, with my body’s lack of ability to produce energy at a cellular level. I’ve come to terms with needing help with the basics, particularly in help with bringing up our daughter. 

But what I haven’t yet come to terms with is the loss of health certainty. You can go through a series of days where it feels like things are that bit more under control. You can (perhaps naively) think that maybe, just maybe, things might be getting better. Suddenly able to cook something new. Maybe a walk that’s a bit longer than before. You celebrate, revelling in this new feeling. 

But boom. PEM (post-exertional malaise) is there, waiting furiously in the wings. It’s the hallmark of life with M.E. but it doesn’t get easier as the months pass. In some ways it gets worse. It lays in waiting, ready to pounce as soon as you’ve had a bit of fun. And with the PEM comes one of the many aspects of the condition: orthostatic intolerance, digestive problems, light and heat sensitivity. Take your pick, they’re all there ready to remind you they’re there.  

And grief is the overwhelming feeling through all this. Grieving for a life pre-all this. Grieving for the life you thought you’d be living. Grief for what you see happening in the world around you, peers living the way you saw yourself living.  

Life with M.E. is not smooth sailing. It has its wonderful days, but it also has its most dreadful days. If you follow me on social media, you’ll know that there’s posts of mine that are celebratory or simply full of joy, taking the appreciation in the simple tasks completed. But you’ll also see the rubbish. The moments where it comes crashing down, yet another symptom leaving me lying flat, only able to sleep. 

I don’t know how long the grief will last, maybe always, as I mourn the life I had before. But for now, it’s onwards and upwards metaphorically. I simply have to find an inner strength from somewhere. I don’t know where from, but somewhere. I owe it to hubby and daughter to do this. And eventually this period will pass, and normal M.E. life will resume but until then, the bed, Netflix and scrolling social media it is! 

Until next time,

Soph x

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2 thoughts on “Grief and M.E.

  1. Oh Soph, what an awful experience. And you’re right, it’s not a great time to need to go to hospital for something like this either! While it’s hopefully reassuring-ish that it shouldn’t be anything new and life-threatening, I hate when things like this happen because you don’t know what it was or what caused it. It’s very unsettling. I hope you can rest, distract yourself a bit, and go easy on yourself for as long as it takes; I’ve been in those dark places of grief before and it’s tough. It’s hard to get out of the cycle too once you’re in it of thinking of the days gone by, the person you used to be, then the things you can’t do now that you used to, etc. It’s also your body’s way of telling you that you need a break, mentally and physically, before you can get back up fighting again. Sendings hugs and lots of love your way.
    Caz xx

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