What is going on?

shockWhat a difference a day can make. It is 11.27am and I’m typing this post after doing 30 minutes of yoga in the sun. I’m feeling calm and balanced and strong and awake. Yesterday at 11.27am? Well that’s a different story…

audiobox2I spent yesterday morning bawling. Not crying or weeping or sobbing but bawling. Huge sobs wracking my body, snot and tears sliming my face. And I just couldn’t stop. What triggered this episode of excess emotion? Well, I watched a very sad episode of the TV show, Nashville (those who watch this show will know why I was crying!). I often cry at TV, I’m an emotional person, but what started as a few stray tears escaping my eyes and a bit of snuffling quickly escalated. I ended up on the floor of the shower bawling. Why?

Well, there’s a few reasons why and one of them is that sometimes I think sensitive people like me are just due for a good cry every now and then, and that’s ok; it often makes me feel better. But there was something more to this emotive episode… something I’ve been pretending doesn’t matter that clearly does; July 2017 marks four years of chronic fatigue syndrome. Four fucking years! This “anniversary”, for want of a better term, has been coming for many months. I’ve studiously avoided saying “I’ve been sick for four years”, it’s been three years, only three years ok! (Only? Huh) I was accepting of three years, I’d worked through the crappyness that this was my life for now and was focussed on the progress I was making, celebrating my steps back into life. But yesterday? I could see no progress, no hope, no help. I even went down that scary rabbit hole of “why did this happen to me/what did I do to deserve this?”. And that’s not a nice place to visit… Facebook kindly showed what I was doing four years ago (on a work trip to Germany) which made me feel even worse, and while I know not to take anything I see on Facebook seriously this hit hard, it was as if even social media was saying, hey look at this life you used to have and look at what you have now. Fun huh?

If someone had told me that I would be sick for four years I would have gone into the deepest depression and probably left the world. No one should have to do this; no one should have to experience their life being ripped away from them, their plans being thrown to the wind, their relationships being distanced by the shroud of illness; and all the time the medical community offering little to no help. I became other. I became different. I no longer felt like me. Gone was my bubbly personality, gone were the cheeky comments and laughter, my mind was so slow I couldn’t be witty, I could barely remember if I’d used shampoo. I would ask aloud, why do other friends get to have babies and get married and go overseas and progress in careers and I am stuck in this limbo; this unknown universe that no one can tell me when I will be allowed to exit?

Anyone who has ever injured themselves knows the frustrations of rehabilitation. Be it a rolled ankle, broken leg, tendonitis or shin splints you have the slow process of building back up strength and flexibility, doing enough to progress but not so much that you go backwards and resting when you need to. I feel like I’ve been rehabilitating my whole life lately. I’ve literally been building back up the muscle mass I lost from all that time sick in bed but also applying the same principle of progressive overload to my life. Just like I introduced yoga and walking back into my life I’ve progressively overloaded how much socialising I do, how far I drive, how long I can play with my 2yo niece. I’ve been reading longer and longer in bed at night, I’ve been staying up later, I’ve been going to 30ths and even went to a concert the other day without it killing me. These all help build my confidence, to give me hope, but the thing is, I’m still just as vulnerable as I was four years ago at the start of this, I’m still flying blind, trusting that I’m doing the right things but not knowing and desperately hoping this isn’t my life forever… So when I do lose all my energy and need to spend a few afternoons in bed my healthy mindset disappears as well; I lose my positivity, I lose my drive, I lose any measure of confidence in my body that I had. At the first sign of the full body aches and pains returning I feel my soul shrink in, as the pressure in my head builds so does my despair, as the effort of getting out of bed utterly overwhelms me I wonder if I’ll ever make it through this.

What is so confusing about all this is the fact that 80% of the time I feel pretty good. 80% of the time I am functioning pretty well, and have even achieved some huge wins the last six months that I haven’t blogged about on here. Why haven’t I blogged? Because these wins came with a dip in energy/ability/mindset on the other side and those dips hurt and confused me…

A few months ago I had my 30th birthday party. For months I’d been making decorations for the 1920s theme, had made the ultimate playlist, booked caterers, planned my cake, turned the old cellar into a speakeasy and enjoyed having a project, having something to look forward to.

30th

the family 🙂

I had a brilliant night, best party I’ve ever had, but on the other side of my party I felt down, and despondent and took a while to realise that I was coming down off the high that was my party and had nothing new to look forward to in this unpredictable late stage of recovery. I’d had this goal and had been working towards it for so long that without it I went, oh, what’s going on here, what is the point of everything? I fell down into a despairing place I hadn’t been in for years, a place that reminded me of when I had depression in 2011; a scary place to revisit.

I went skiing again this last month and was so thrilled with my body’s strength at the time, but on the other side? Not such a pretty headspace. This was also complicated by the fact that I had a car crash on the way home from the snow when some phone-checking moron ran a red light and hit me. The shock from the accident was delayed for me and it was about a week after the crash that I started to feel teary and emotional and my body felt incredibly weak. Picking up a spoon to transfer soup to my mouth was actually exhausting. I spent days in bed again, was too tired to shower, lost my appetite, had all over pain (part CFS, part car accident), felt brain foggy and just all around crappy. Was this as bad as I used to feel that first 18 months of this illness? No it wasn’t, but mentally it was harder. To go from feeling so good that you’re skiing down a mountain, whooping for joy, racing your friend and laughing when you fall over to being bed bound again and wallowing in despair is too much for me to handle. When I felt consistently shit I could deal with it, but this up then down then up then down has me reeling.

ski

all smiles on the mountain

I feel like CFS is taunting me, telling me what I can do and then wham, I’m flat on my back, the CFS monster leaning over me with a sneer, saying, don’t be ridiculous you’re not well enough for that. I can feel its pointing finger, hear its maniacal cackle, glimpse it hiding in my peripheral vision, ready to jump out at any moment.

This makes me scared to live. I’m scared to do new things in fear of going backwards. I want so much to have a full life again and be excited and alive but I am so scared of going backwards, I’m so scared of having to go through all this again, I don’t think I could! So each time I have a slight setback it’s like I’m starting all over again, even though I know that I’m not; logically I know that I will bounce back again soon, but in those fatigue-ruled moments I feel stagnant and stuck and like there’s no end in sight.

I went to a concert with a friend the other day to see Clare Bowen (from the TV show Nashville) and had such a fun night. I drove up to Melbourne, went out for dinner, discussed all things life with my friend then really enjoyed the concert. No fatigue, no pain, no brain fog; I’d left my three biggest symptoms behind. I drove home feeling elated, thrilled that my body had coped so well. The next morning my body felt fine, my energy was up and I walked the dog around the park with ease. But my mindset by that night? It was out the window. Because while the night had been so fun it had also showed me how little was in my life right now. And that hurt. That was unfair. That was hard to deal with.

So it’s an emotional as well as physical roller coaster I’m on at the moment, the highs feeling amazing, and the lows gut wrenching. I feel quite ungrateful too, like I should be more appreciative of where I am, that so many people with CFS would love to be feeling as well as I have been; I know me two years would have given anything to be at this stage of recovery. This is hard to get my head around, because I’m doing so much better, I’m doing so much more, I’m getting a taste of life again, but with that comes hope, comes planning for a future, comes the unknown. And all that gets thrown sideways when my body lurches out of its recovery lane to ride back to symptom town.

gratitude

I have been struggling with this idea lately, feeling ungrateful and frustrated.

I think I’ve cried more in the last six months than I have in the rest of this illness. I’m given a glimpse of life again, only to then have it taken away; and I don’t know how to cope with that. I resigned myself to not experiencing life for all these years, to not having independence or dreams or adventures, now I’m being told maybe can I have them, but don’t get too attached just yet. Don’t give me a puppy, let me name it and fall in love with it, then take it back; that’s cruel. But I know that very few people have complete spontaneous recoveries from CFS, that for most people it is a game of snakes and ladders, the sting of the snake hurting all the way down. Two steps forward, one step back, etc etc. I know this, I do, but boy would I love to wake up tomorrow and immediately reclaim my life.

Throughout this tumultuous time I haven’t understood my feelings, let alone been able to express them on this blog – hence my absence since January. And I’m not sure how well I’ve written about this stage here, but I thought an attempt was better than nothing, because if I’m experiencing this confusing stage of recovery from CFS, there’s got to be other people experiencing it too, or people around the corner from it, and maybe we can help each other make sense of this confusing-as-hell illness… and for the non-CFS folk, maybe this will just explain how I’ve been feeling, why I’ve been difficult to live with, why sometimes I have to disappear and I sometimes I can make it to your birthday party; all in all I’m a bit confused by it too, but I have to cling on to the hope that there is a ladder around the corner to take me back up the board, that all this is just the process to getting back a full life.

(top photo by the ever talented Jean)

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9 thoughts on “What is going on?

  1. I marked the 4 years in March! I totally understand your thoughts 😦 dipping in and out is hard if not harder, than not dipping in at all, and 2 years ago, I never thought I’d be saying that lol 🙈 You’re not alone ❤️ Thanks for posting xxx

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  2. Thanks for the read and sharing your story. My son is 15 and has just marked 2 years of this chronic illness. A couple of weeks ago we came to the realisation that completing year 10 was not going to happen, which was really sad , but it also meant that he is now exempt from school until next year and it seems to have cleared his headspace. I think for so long he was trying so hard to feel well to get back to school and it just wasn’t happening. Now we feel that he can solely concentrate on himself and work on his progress without anything else to worry about. It has been an absolute roller coaster and as a parent I felt like I had lost my boy for a bit. I missed his fun personality and his energy. Over the past 6 months he has started to return and now we make sure that any little progression we celebrate. At the moment he is aiming to get out of bed a little earlier. This may be 11am instead of 2pm etc…!!! He is also going to his physio at least once a week to loosen him up. His goal is to get more strength and hopefully get back on the basketball court. He was trying out for state basketball when he got a virus and then chronic fatigue 2 years ago.

    Liked by 1 person

    • Hi tarcey, thank you for the comment and I feel for you and your son! I honestly can’t say enough good things about cfs health and the founder toby was 15 and obsessed with basketball when he got sick so he’d totally relate. His YouTube videos are free and might be good for your son to see someone who was so sick but is now so active and healthy 🙂

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  3. Hey Suzie, I really want to thank you (and Hazel whose post linked me to your blog) for posting this. I have never heard/read anyone describe this particular confusing late stage of recovery before, which I guess in a way had led me to believe that no-one else was experiencing what I was experiencing. One of the things I find hardest is when I get to a tantalising point of thinking ‘I think I have recovered, I don’t really feel like I have ME any more… more like just the odd remnant’ and then as you say, I suddenly find myself having lurched back into symptom town and my poor little mind goes supersonic trying to figure out what is happening. ‘I thought I was better, am I better? Have I recovered? Am I just shattered because of what I’ve been up to, would anyone else be feeling like this? Am I just a normal healthy person who’s experiencing some unwellness but the memory of the severe ME is causing me to freak out?’
    It’s all very confusing but, like you, I find journaling helps, as well as EFT tapping and meditation to release whatever emotions are trying to find an outlet…
    I re-read your post today, having read it some weeks back, because today I am really disappointed at not feeling up to doing several things this week which I had been really looking forward to and realising I just don’t know how to deal with myself – do I deal with myself as a well person who feels a bit crap but can probably carry on, or as a recovering person who really does need to take a break to stay healthy…

    So, thank you again, I am gutted that you were ever in this situation but I am grateful that you found the words and wanted to share them. 🙂 Big love xxx

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    • Oh wow thank you so much for this comment, yeah we are so not alone in this confusing stage, I had some very mild symptoms today after a huge week and was so disappointed but caught myself and was like, hey, remember what this used to be like. Sending you all the best and thank you so much xx

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  4. Pingback: exiting the comfort zone | a snoozie life

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