I can be so hard on myself, as though I lack stamina or backbone…but when I look back at the past few weeks, they’ve been so full-on, physically and emotionally. Winding back, we spent a week away from home in support of my in-laws, one of whom was in hospital and needing respite care to be set up when they came out. On the very heels of that, we were summoned to a family birthday reunion almost 200 miles away, which I duly showed-up at, giving it my all, in spite of the various health challenges that make travel, socialising and eating-out so very difficult. Then, after just three days back at home, my closest friend died and, although it was expected, of course it completely walloped me. In the run-up to this, we had had so many health blows in our close circle and “lost” our beloved dog just a few weeks ago, leaving a gaping hole in our home and our hearts.
In typical form, I tried to keep myself extra busy for the week as I processed so much grief and all the myriad feelings and expansions that come out of the transition of a loved-one. Then, at the weekend, though I was still struggling with it all and it was beginning to take its physical toll as much increased fibromyalgia and PoTs symptoms, we went to an artists’ open studio as planned, to support one of the artists I’ve been purchasing pieces off for some time but had never met, which was lovely but involved a lot of time on my feet and talking as well as travel. And then, I picked up that one final piece of straw and tried to balance it on the camel’s back…
It was only a very small straw…coffee with a friend that really wanted to meet-up with me and who has been trying to persuade me for a while…but it was the one that seemed to trigger the wholesale collapse of my energy structure. For the past day or so, as the meet-up approached and as I struggled to manage her expectations as I didn’t seem to be quite getting through about how much time I could offer, I have been feeling utterly wiped out and overwhelmed, with my nervous system in tatters. So, after much too-ing and fro-ing (over-thinker extraordinaire, that’s me!) I cancelled the friend…and then felt soooo guilty. So then I still didn’t relax as I braced myself for the disappointed response, long time coming, even though I had thoroughly explained the reason why, and when it came through I duly felt such a heel for letting her down.
Thankfully, this morning, something more conscious, expanded and balanced clicked in as I realised I could now take more time in bed because I wouldn’t be losing the best part of a day this week to the friend (memo: that’s what social meet-ups do to someone with CFS and environmental sensitivities; we are wiped for a whole day!) nor was I risking a wholesale collapse a few days before my life gets really busy and demanding again at the end of this week. Now, I have a few precious days just to be me. I should add, I don’t blame the friend at all; it was, after all, me who tried to bite off more than I could chew when I agreed to meet her on her rare week off. I had overstretched, as is typical of me…the story of my life (I have a long-running theory that a great many people with CFS/ME are over-stretchers with a trait of people pleasing and putting others first…and a lifelong aversion to using the word “no”).
Once I realised this, I felt instantly calmer and, though my body still feels more fragile than it has for a long time, with that tangible “jitter” running through my over-sensitised nerves, something which always means I’m at that most precarious “pre burn-out” point, I’m systemically relieved that I stopped and listened to my body, at the eleventh hour before that ultimate crash took place.
For once, I have reached out and calmly claimed what was always mine for the taking…but which, for most of my life, I have been so hesitant to believe has my name on it. Space. Time. Rest. Pull-back. Boundaries.
Even now, I’m still getting the odd twinge of guilt jetting its unpleasantness through me, triggering off a stream of worries about the friend, letting her down, hurting her feelings. When I allow them, my thoughts turn automatically to how I have made my friend disappointed and sad as though I now need to put that right again, for my own peace and sanity. But then I wouldn’t feel half so bad if she had kept the note of pathos out of her response, alongside the stark absence of any real empathy as to why I had felt it was necessary to cancel (its one of the hardest things about “invisible illnesses”, to feel people don’t really grasp the true nature or extent of your struggle doing ordinary things). Its quite telling when a person still seems to think you are letting them down for something trivial, as though you just have a cold, are “a bit tired” or can’t be bothered, after years of knowing each other. If platitudes such as “get well soon” are all you get back and if you feel that you have to keep repeating the list of things you struggle to do or even find yourself having to over-explain your excuses for crying off (with so much detail it makes you cringe and feel like a complete victim of circumstance) then you start to question the equal footing of the friendship. Are you being seen and heard, as you are? Your values regarding what you are prepared to put up with become very important to you.
By contrast, a really compassionate person might even say to you “are you sure you’re well enough to do this today? Perhaps we should reschedule” because they can tell you are run down. They will reassure you “don’t worry, we’ll do it again when its warmer weather and you are feeling better; you get to choose where we eat if you want to, or if you would rather bring some food from home”. I have someone just like that in my life and she means the absolute world to me because she never allows me to feel I should apologise for my physical shortcomings; quite the contrary. Since my friend died, she has checked in on me often and there is never any pressure to give what I don’t have.
In other relationships, its as though your health has nothing to do with them, or is a mere nuiscance, even though it inpacts every single detail of your life and you’re not exactly doing it to be awkward. A problem I hear a lot in chronic health circles is that we often politely bow out and allow it to be alright that some people we know well really don’t take our condition very seriously or make the effort to ask or learn more about it. I always take the trouble to research a bit about any health issues my friends have and to ask after them. If they confide in me, I don’t just say “oh dear, hope you get better soon” but make the effort to ensure they are fully seen and heard and I find it hard to believe that isn’t normal behaviour, if you care about someone.
Not least because health conditions can be a terribly lonely thing to live with; they can make you feel invisible or maginalised, or as though the very thing that is front and centre of your life is a social taboo to bring up. Plus its incredibly difficult to make small talk when you struggle to be there at all (and talking is one of the most fatiguing activities there is, ask anyone with CFS) so to be required to talk about everything but this one thing that so impacts your life and which you could really use a listening ear for is gruelling, if that’s the way the relationship plays out (certainly how some of my social situations have played out this last month or so, with a giant elephant sat in the room). Its far from the only thing I want to talk about but I don’t want to skirt around it either. To not be seen fully “as you are” is exhausting and deminishing in itself and we all need a break from that. I am not my illness…I play witness to it, feeling what I feel without judgement or vitimhood…but to deny it grates against my very soul.
So whilst you might put up with all this a lot of the time or for a run of a few days or weeks at certain times of year (though I suggest you focus on creating a life in which it becomes increasingly rare), if you’ve reached the point where you have completely run out of reserves then this is not the kind of social “gig” you probably want to agree to right now. You have to take a firm decision on behalf of yourself, to preserve what is left of your energy, and to do what is right for you.
Now I’ve claimed for myself that “stop” point, I realise how much I just needed a clear window to process my own emotions, not least about my friend but also about an intensive few weeks dealing with family stuff (far from over) and the emotional boat-rocker that it always is to see people you grew up with for the first time in ages, along with having to deal with all the inevitable foibles of their opinions, expectations and omissions (nine tenths of my family show no interest in my health issues, at all, and its been a steep learning curve not letting that hurt so much; but we don’t choose our families). Just one of these things would have been quite enough to floor me in a typical year (thank you to the Gupta Program for helping me to pace, listen to my own needs and advocate for myself this time around) and yet it feels like I’ve been on some sort of slalom, facing bump after sharp turn after spin in the air.
On top of all this, as I’ve written about in other posts, I’ve also been tackling some DIY around my house so, really, what I’ve accomplished is nothing short of incredible this autumn. Yet perhaps the MOST important thing I’ve accomplished is the backbone to stand up for myself…and know when to use that complete sentence, “no”, as appropriate. I’m still smarting from the aftershock but its a step in the right direction.
What I more-clearly-than-ever witness about myself is this lifelong tendency to check in with all the people around me…are they OK, do they need anything, what could I be doing to help them or make them happy or more comfortable…even how have I made them unhappy or uncomfortable (and what part of myself do I need to sacrifice to rectify this!!)…before I take care of my own needs or allow myself to feel OK.
I had only just concluded this about myself this morning, as I sat down with a steaming bowl of porridge, when I noticed a robin my my garden seeking in vain for some food in one of my numerous bird feeders…and, on an automatic pilot, began to eject myself out of my seat to fetch some more seed when another directive came in from the side “What do you think you’re doing? Eat your breakfast while it’s still hot!” I’m always jumping up for the birds, just as I used to jump up or stop what I was doing for our dog, and the same way I leapt to it when my daughter needed something (still do…), before that a previous husband had me on constant standby for his needs (thankfully, this one is far more self-sufficient and more than pulls his weight) and here it was, demonstrated oh-so clearly. I hardly knew I was doing it…until I caught myself in the act!
When I’m not worrying about people in my immediate circle, I’m tending to the needs of all the wildlife in our garden, worrying about animals at rescue centres, in abject woe for the ecosystem, for people I’ve never met, for the entire planet, or I’m sending the kind of encouragement I would love to receive to other artists and writers on social media, overthinking all the various problems and health issues of my family, friends and my husband’s work colleagues, and always with the niggle going off in me that I could/should be doing more and that I don’t contribute enough. I push myself out into the world via blogs and social media, against the grain of my introversion, because I hope to inspire and encourage people and when emails come through from people who read my posts, or in fact anyone, I drop everything to reply as promptly and helpfully as I can. Its like I can’t find any peace until everything else is sorted and I’ve done all I can to make things better. “Isn’t this normal?” I once said to my husband, “Don’t other people worry about the impact of their actions on everyone else or feel they should be doing more?” “Most people just don’t operate that way“, he told me!
Although I’ve always said that I’m really not that maternal, my husband constantly labels me “an earth mother” and says that I just can’t help it. I think of it as more to do with my INFJ trait…that extroverted feeler trait that scans the room to see how everyone else is doing and which seldom knows how to find any peace until all their needs have been taken care of first (so if you have extroverted feeling in your stack, consider this a root cause to your over-extension…reading up on this can help you to play witness to it, then dial it down). Operating like this is one hell of a tall order and, the thing is, it’s rare that we ever can take on another person’s problems “for them” (nor should we!), though we can be there in support, and support doesn’t have to mean sacrifice. So, if you have this inbuilt trait, it can leave you feeling depleted, never off-duty and a little bit rubbish or useless all the time, as though all you have ever done is let people down and disappoint all your life, in spite of the fact that you probably spend more time worrying about others than most…and, when you can, you so often jump to their aid at the expense of yourself, forgetting to check whether you even have any surplus resources to offer. As the saying goes, we need to apply our own oxygen mask first, to be of use to anyone else.
When you have chronic illness, your ability to help-out in practical ways, necessarily, goes down the pan, to a very large extent, because your resources are so compromised, so its all too easy (and common) to look back across the years and see only what looks like a horror show of all the times you had to say “no” to people, or duck out at the last minute, even avoid the kind of people who, sensing you would give the coat off your back, tend to bleed you dry…and so you come to the conclusion that you must be a “crap friend”. Given its already so hard to make and nurture friendships with chronic illness, this can lead to extremely low self-esteem when it comes to relationships. So often, the reverse is true…you have a heart of gold…but the one person you always needed to be a far better friend to was always yourself, and this is the core lesson!
Be mindful, chronic issues will weed out friendships that may not be destined to last the course from those that are true and may grow even stronger, regardless of your health. Those that stay the distance and which you can easily imagine may be with you all your life are those where you are accepted and seen “just as you are”; so, you don’t have to play the victim to your condition when you say no to something (a sign you are doing this is feeling you have to make the long, rambling excuse to explain why you are unable to come along) but can pretty much say “I’m just having one of those days/weeks/phases so I can’t today” and they will instantly understand. They will do this, partly, because they will have paid attention to your journey through illness, may even have done some research for themselves to see what it entails because they care so much about you they will really want to try and understand, and so you won’t have to keep on repeating yourself. They won’t come out with phrases such as “get well soon” which makes it sound like you have a minor sniffle or feel a bit tired, but they won’t force you to overthink your condition or make a mountain our of a molehill about changing your plans because they know the last thing you need it to make a big deal about a flare-up.
They also do it because they meet you on the playing field of empathy and I think it gets increasingly difficult to deal with people who seem to lack this trait when you have been coping with health issues for a very long time; you simply reach the point where you give less out to them because you receive so little back, even when these are family members, which can be so hard to do but perhaps an important stage of maturing your relationships across the board. When you have a short supply of stamina, you learn to prioritise and its not the volume of relationships but the quality that matters.
The best kind of friends will also respect you…even cheer you on…when they see you paying attention to your needs and taking time out for you because they will know how hard you tend to push yourself (over the odds) or beat yourself up, and how much you overthink things and hate to let people down, so they already know that you aren’t taking your decision lightly. They will also value you for modelling a degree of self-care that they would like to feel at liberty to offer to themselves, if circumstances were reversed, and you both know that would go without saying in the give-and-take of friendship. With such a person, there is no time limit, ration or other condition to be fulfilled “small-printed” beneath your need to take this time out for yourself; because the health issues you are dealing with are an unknown quantity, and they are doing their best to learn what that looks like for you, just as you are trying your best to live with it.
It really helps if these friends or family members are open to written communication; this has been the real benchmark of the best relationships that have survived the chronic years, for me, because it means we can have deep conversations without relying on a physical meet-up, something which has been worth its weight in gold in my life whilst enabling some friendships to break new ground of depth and sincerity.
I’m so fortunate to have a couple of people like this in my life, one being my sister with whom I have only grown closer by far over all the years that have made it harder than ever to meet up. Sadly, those relationships that rely utterly on “doing things” together have taken a very hard knock. Perhaps this has all been a lesson in how I used to conduct relationships versus how I would like those relationships to evolve, with my own relationship to self sat in prime position at its very core. Without first forging that relationship with ourselves on the most healthy terms, all of those others are likely to flounder sooner or later and this is the territory I am currently exploring the foot-hills of; today being the conquest of at least one small put perfectly formed hill with a better view.
Social Exhaustion: An ME/CFS and Fibromyalgia Dilemma – Health Rising
5 Mistaken Assumptions About the Chronically Ill – Psychology Today
15 Common Misconceptions About Chronic Illness – The Mighty