Healing is not linear. You may have heard that before or seen one of the many images online highlighting it’s message but if you haven’t, it’s simply pointing out that like many things in life healing is not straight forward or easy. There’s often both ups and downs, steps forward and steps back and of course healing isn’t even guaranteed so it can be a pretty scary and emotional process to experience.
For me, I first heard this phrase when I started following those within the online ME community and it’s 100% true. I developed ME (Myalgic Encephalomyelitis) in my late twenties and although I was much better for many years I had a bad flare up in 2017 which I am still recovering from now. I know that I’m very lucky because even at my worst point my ME was never as bad as it is for many others. I haven’t stopped work this time round although I have had to go part-time and adjust my hours. I’ve needed lots of support from those around me but generally speaking I have been able to cope and carry on with my life, albeit a much more limited version of it. I’m also lucky because many others with ME do not even get an opportunity to recover and for some they continue to decline to devastating ends.
So yes, I was incredibly grateful that my baseline for recovery was as strong as it was and that I had already learnt many lessons from my first experience of ME that would help me through the long, slow process of recovery. I knew ME did payback well and I knew it would not happen overnight but even still I had forgotten how tough dealing with the ups and downs can be.
Unlike other things in life, it’s not a case of powering through or pushing yourself to get better. That can often make things much, much worse and that in itself can make the road to recovery a scary one to navigate. What if you judge your abilities and strength wrongly? What if you get worse again, what if you undo any progress you’ve made? It can be scary to try to do more not just because you might fail but because the physical payback can be pretty serious and the emotional impact of taking those two (or more!) steps backwards can have a long lasting effect even when physically you’ve started to move forward again.
Recently I’ve been feeling strong enough to add new things back in to my life but it hasn’t been as simple as it might sound. For example a couple of months ago I started making myself a decent breakfast at home, making up packed lunches every day and actually making dinner rather than just chucking something in the mircowave. A good step forward but I noticed fairly quickly that the time and energy I spent on that meant I didn’t have enough left over to keep on top of the other things I did. Little things like my dishes and tidying up started to slip and when my mum visited she once again had to help me keep on top of things. This was something she did regularly when I was much worse and I hated that I was back there again, relying on my mum to help with such basic tasks (not that she minded of course). It’s been a couple of months now and I’ve slowly gotten back on top of things and now breakfast and lunch making is part of my day without anything else slipping. (okay, full disclosure, I have a big pile of dishes right now but I’ll get to those as soon as I finish this, I promise!).
The last two weekends have also seen a big step forward (followed by a few mini steps back). I’ve been far more active than I have been at weekends in a long time. For ages, weekends were nothing more than a time to recover from working Thursday and Friday and resting up to cope with Monday and Tuesday but here I was, at the cinema, enjoying The Edinburgh Food Festival, enjoying a walk along Portobello Prom and making it to a family celebration. Can you believe it!! I couldn’t!!
Leading up to the first busy Saturday I was anxious. What if I couldn’t cope? What if I took unwell out of the house? What if I undid the progress I’d made? I also started to feel guilty about wanting fun. Was I being stupid to risk my health for this? Of course I knew the right answers and I’ve worked hard at making sure I don’t guilt trip myself when I get things wrong and my health suffers. I know I’m doing my best and won’t always get things right but I have to give myself a break and accept that things are not going to run smoothly all the time.
Payback often doesn’t hit for two or three days so I shouldn’t have been surprised by the fact I still felt great on the Sunday morning but I did. In fact I felt ecstatic! The sensible part of my brain was telling me to take it easy, not get carried away and remember that payback would still come but the rest of me was telling that part of my brain to shut right up. I had made it to the cinema in town on a busy Saturday afternoon, I’d walked far more than I had done in ages and I’d even been in the pub at midnight!! Woohoo!! I was like Cinderella and I hadn’t even lost my shoe! ME could take a running jump. There was no stopping me now. Surely payback wouldn’t come when I felt this strong.
But of course, it did.
I felt sluggish for most of the week, I slept most of Wednesday and it took until Friday evening before I felt like I’d gotten over it. Just in time for busy weekend number two. I still did well, although I did need an afternoon nap on the Saturday and the payback arrived sooner this time on Sunday evening. My spirits were still up however so overall I was doing fine.
I’ve been late to work each day this week, with mornings once again becoming tough for me and as I sit and write this my leg pain is back as is my brain fog. I also didn’t get up till near 11 today, something I don’t like to do unless I really need it.
But I hold on to the fact that despite being late I did in fact make it in to work and I know that I’ll be back at my desk tomorrow morning (hopefully on time and with a full packed lunch box!). This might be a step back from two weeks ago but it’s still a huge step forward from a year ago. And that’s the trick right there. I need to keep looking at the bigger picture.
I have tried to share my ups and downs here and on social media for a number of reasons, one of which is that it helps me to see my progress and not to get overwhelmed by days like today. In fact just recently Facebook memories reminded me that in 2017 I shared a post about me crying in to my soup at work because I was so exhausted and the pain was so bad. I’d actually forgotten about that day and the reminder of it was actually quite shocking. I’m nowhere near that bad anymore and my tiredness and pain today are nowhere near bringing me to tears.
I need to remember that despite the continued ups and downs overall I am moving in the right direction. Progress is incremental and ssslllooooowwww but it is there. I can do things now without thinking that I would never have managed just a year a go. I need a lot less help from others (although I know it’s still there whenever I do need it) and whilst payback is still very much something I need to be aware of it now takes a lot more for it to kick in and when it does the impact is not as devastating as it once was and it doesn’t last as long.
I’m stronger now and whilst I know I still have a long journey ahead of me and I don’t know what else I’ll face I’m sure that if I keep doing what I’m doing, ask for help when I need it, add in new things when I feel strong enough, listen to the sensible part of my brain once in a while and keep being open about how I’m feeling I will get there and hopefully one day, the pain and fatigue I feel today will also be nothing more than just a Facebook memory.