I watched a video the other day that talked about getting comfortable with the uncomfortable in life. This can relate to so many areas from dating to sport to going to the doctor but it resonated with me and my recovery from chronic fatigue syndrome.
Why? Because I’ve had to be extremely uncomfortable dealing with the anxiety, awkwardness, unknown qualities and sense of altered self with this illness, what’s helped me is not fighting against that, but explaining what I need to, being honest and at times very vulnerable.One of the hardest things to do in public with this invisible illness is to stand up and say, “I’m too tired I need to go and rest”. Even after two and half years I still find this hard, especially if I’m enjoying myself and don’t want to leave; I don’t want to be the sick girl! It might not sound like much to you, and most people are wonderfully accepting of any declaration I make like this, but I feel embarrassed and awkward and incredibly vulnerable when I do it. This is something I’ve got much better at, and feel less awkward doing it, but the first few times I may as well have been naked in front of the classroom. You’re interrupting a conversation to say, “hey, this sitting here and talking business is just too much for me, I know I look fine, but I’ve just sweated through my top and my head is pounding and I might fall asleep into this plate of soup so I need to go and lie down like a cranky toddler”. You’re admitting that you’re feeling weak and distinctly uncomfortable and sorry for yourself and that unlike the other 28-year-olds in the room you’re not capable of this much social interaction. I used to feel like I had to yawn or sway or wince in pain to convince everyone that despite looking absolutely fine I was actually the opposite and needed to move to a room where I could lie down in foetal position. But do you know what? As distinctly uncomfortable as this made me, nine times out of ten people accepted and understood and led me to a horizontal surface upon which to nap. And the earlier I made this declaration the less payback I had the next day, that’s definitely a worthwhile outcome. Of course some people are going to be dicks about the issue and make you feel about as small as a flea, but in that instance you know that they’re either ignorant or self-absorbed or that they are in fact quite lousy human beings and not really worth your limited energy reserves. That, or they’re psychopaths incapable of empathy – run!
In addition to people understanding what’s going on you can let yourself relax and not have your perfect front in place. This happened when I had depression back in 2011. I was brave enough to discuss my depression with some close friends and I’ve never been quite so uncomfortable in my life, but do you know what? I felt so much better once they knew. I could pull aside the perfect mask I had in place and no longer pretend, and in one instance a friend told me about her own awful experience and I didn’t feel like a freak or failure anymore, instead I felt normal. After telling my friends and family I could be honest with them and not have to make up excuses. When I really didn’t feel like I could meet them for dinner they understood that I wasn’t flaking or being a shit friend but I was actually drowning in a whirlpool of bad thoughts and couldn’t leave the house that day. If I hadn’t let myself feel exposed and vulnerable I would never have received the support and understanding that I needed. Not to mention the first time I sat in a psychologist’s waiting room… another instance of sweating through my clothes.
I had the same response with my anxiety issues. Before I admitted how bad it was I literally used to run around in circles in the park trying to avoid feeling anything, but once I admitted how awful I felt and talked to friends about it (and a psychologist – best money I ever spent) I found solidarity and understanding. The first time I wrote about anxiety on this blog I had three different people take me aside and say that they struggled too and hadn’t known that I did, and we had incredible conversations. Before pressing publish on that post I did pause for a second and wonder if I was being too open and had some crippling self-doubt; those brilliant conversations proved it was the right call.
The idea of dealing with the uncomfortable resonates with me in so many ways. Just the other day I was doing my walk for my graded exercise therapy and was increasing it by just 100m. Despite doing my walk almost every day for the past few months I was scared it would be too much and then I’d crash that afternoon. I did do my walk, and the first half of the walk I was scared and worried, but by the time I turned around to walk the second half I felt great and was enjoying myself. I had my dog with me, it was a beautiful day and I was thrilled to see that my body could handle a 1.1km walk after such gradual progression. If I hadn’t put up with that uncomfortable feeling from lacing my shoes to half way through the walk I wouldn’t have enjoyed it or been able to progress in my exercise. 1.2km here we come!
The other great thing about showing someone the truth of what’s happening and what you’re feeling is that some people really want to help but if your “I’m ok” mask is stuck too well in place they’re not going to know to offer! My dad finds my illness very hard because he can’t fix it for me; he gives advice and solves problems for a living but with his own daughter’s illness there’s not much he can do. So when I got out of bed at 12pm the other day, somehow made it to the kitchen and was faced with the mammoth task of making a sandwich when I felt like I was half dead I asked him to help me. He was only too happy to make me lunch while I sat on the floor and watched; this was something tangible and achievable that he could do to help. It isn’t easy to ask for help, but often it’s not hard for the helper to do something, they just need some prompting on where to start.
Being honest and explaining my limitations means a friend can drive me to a birthday lunch instead of me wasting my energy in the car driving myself (thanks Annie). Explaining my limitations means a spare bed is made up for me when book club is two hours away and I might need a sleep (thanks Goose!). Having one honest and uncomfortable conversation means that you can leave the table later without having to explain why, when you’re that fatigued that talking is a struggle this is definitely a bonus. And then every now and then there are great results such as when I announced to my friends, Terri and Mat that I needed to go and lie down and they said, oh that sounds nice, I could do with a nap too, and we all went and lay down!
The scariest instance of forcing myself in to the uncomfortable is when I up my energy output and increase my chronic fatigue baseline. I feel all safe and secure there, I know what I can and cannot do without flaring up my symptoms and I like that; I don’t want to change. But I do want to progress and eventually fully recover, and staying in my comfort zone isn’t going to help that. I have been talking about going to do some work for my Dad’s accounting company for months now but just can’t seem to get there. I know it will all be ok as I know everyone there, they’re all aware of my illness and my Dad will look after me, but still I can’t go. There’s a huge anxiety around it for me. Talking to Toby from the CFS Health Centre the other day he said I was waiting for the perfect day to start, so that I could go and have the guarantee of no payback; I was essentially waiting until I was 100% better. Once we talked about this it made sense; because of my health I have not worked for two-and-a-half years so it is going to be a big step. It’s a huge step for me, and I’m going to feel uncomfortable doing it. I’ll only be doing reception duties and some clerical work that I know I can handle, but I have to actually step out of my carefully curated comfort zone (that I 100% needed to be able to recover to this point) and challenge myself gently so that I progress to the next stage of recovery. One day I want to be able to work full-time again and support myself so it has to start somewhere; I need to take that scary step and know that it’s totally ok if I feel fatigued afterwards, or feel nervous walking in the door; to not expect perfection. I need to accept that I did need to protect my body and let it heal and stop pushing myself, but now that I’ve reached this level of health in my recovery I might need to let go of the reins ever so slightly and allow my body to progress. And if I crash after a few hours at work I know that it’s only going to last a day or two, because I’ve laid strong health foundations over the past 30 months and I can’t fall back to where this all started.
Of course there are also times when you don’t want to be uncomfortable, that it’s actually your intuition saying run the hell away from this situation. But that’s a different feeling, that’s self-preservation, and panic. What I’m talking about is having the courage to show that you’re actually not ok, that you might need help and perhaps show some vulnerability. What I’m talking about is realising how far you’ve come and that maybe you don’t need to keep your security blanket wrapped quite so tightly around you; that despite the fear you might have progressed further than you knew!
Love this! So refreshing to read and know that I am not some in feeling like this! I have been getting emails from Toby for awhile, but since I live in Canada, I haven’t taken the next step and am trying to find similar help locally (so far not going great😒). Thanks for this great post!
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Thanks so much Amelie! I can’t recommend CFS health enough, they’re helping me get my like back! They have an online program that lots of internationals are in and you can get coaching on top of that. Good luck, I hope your health starts to improve soon x
Will always be a proud nap supporter! xx
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Aw amazing post! So crazy how similar we are! We both went to America in ’09 we both had bad emotional experiences in ’11 and i got cfs the same year as you!! Haha crazy! I feel you on all you’re saying about where you are in your mind frame in your health right now. So glad you have this blog ☺️✨💖✨💖
Aw thanks so much Jodi! Wow crazy similar… What’s in that America water?
Hi Suzie, wow I love this post and your blog for that matter! It’s crazy how you mention heading back to work and your feelings surrounding it. I went back to work over a year ago after being off for 18 months with ME/CFS. My work were kind enough to let me ease back into things, starting off with only a couple hours one day a week just to get back into it and get a feel of things again. I have to admit though I was a terrified about going back, but I did it and am slowly getting there increasing my hours gradually. I am glad I pushed myself, I find it’s that fear of going backwards or having a setback that scares me. You will get back to work, sounds like you have a great opportunity at hand. Good luck, I hope your able to get back into work soon.
Wow thanks so much for your comment Lennae, you’re so right about the fear of going backwards, it’s overwhelming at times! Very glad to hear you’re easing back in to work xx
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Thanks Susie, honestly some days are harder than others, but I guess that this illness for you! Lennae xxx
I don’t mean to outpoint you – but once you’ve collapsed at the checkout of a supermarket (Because you only needed a couple of things), struggling to breathe because you’ve run out of energy, and have to be carted away in a wheelchair they’ve borrowed from the doctor’s clinic in the same centre, nothing could ever be worse. Oh I forgot, and then to have the doctor (who doesn’t know you from a bar of soap) tell your husband he needs to get me to see a psychiatrist, because it’s only a panic attack. So what if you have to tell people you’re too tired to engage with them anymore,, so what if you have to go home after only being at a new job for an hour/s, etc. Give it a go! Whaat’s worse is when you don’t even try, and start giving up on life.
I really understand where you are coming from and all your concerns 😦 I hope working has been good for you xxx
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Thanks susie, it’s been hard but good as well, my brain just doesn’t work like it used to… One day it will again 🙂