“She had learned the lesson of renunciation and was as familiar with the wreck of each day’s wishes as with the diurnal setting of the sun.”
~ Thomas Hardy, The Mayor of Casterbridge“Success is when everything that goes wrong, fits in your plan.”
~ Gary Rudz
When I was diagnosed, finally, with Lyme disease, back in January 2013, we did a lot of shuffling of plans. A much-looked-forward-to holiday was called off. I cancelled workshops and retreats. My clever PA began adding a footnote to each appointment she made for me, letting people know that I was being treated for Lyme and that I may need to reschedule their session at short notice, depending upon my health on the day.
I’ve had to do a lot of that anyway, in my adult life. Cancel things. Say no. Pull out at the last minute. Always because of unreliable health. Too often that has made me the unreliable friend, family member, or neighbour. The only area I have managed to be mostly reliable has been work. But doing that has meant creating a business where I can work from home, part-time, and where everything else suffers so that I can get that work done.
Sure I’ve gone ahead sometimes and done the thing, but too often afterwards I’ve paid the price. An afternoon of socialising might mean three days of crippling exhaustion. A few hours of gardening could leave me flat out for the rest of the week.
“Gee Nicole,” a friend said once, frustrated at my lack of energy, “we all get tired.” Yes, we do. But Lyme tired is something else. Lyme tired is truly chronic fatigue. Lyme tired is neurological fatigue, as well as physical. It’s the kind of tired where after just a few hours work I am in bed by seven and asleep by ten past. And that’s on a good day. 🙂 Lyme tired is the kind of tired where I can struggle with basic daily living – like showering and dressing, holding a conversation, preparing a meal or attending to the simplest kinds of housework. The kind of tired where my arm stops working, or my eye starts twitching, or my brain goes on strike.
My exhaustion is an ocean, under the influence of some great unseen force. Sometimes it recedes, leaving a gleaming bright shore of possibility. I get stretches where I can do so much more, and I settle in to that as my new normal. But then the tide comes back, and I find myself with a smaller and smaller window of available time where my brain works, or my body works and I can get things done.
To be honest, I’d hoped that this far into my Lyme treatment, an aggressive protocol of drugs and herbs, that I would have been back to much more glorious planning again by now. That I would be saying ‘yes’ more often, and ‘no’ much less.
But as I’ve travelled this road I’ve come to realise that there’s still so far to go. I might be in this hazy half-life place for a while yet.
So, I’ve gotten smarter.
Now I make plans EXPECTING to be tired. I create my business around what I can do on a bad day, or an average week, rather than what I might be able to do if I had a sudden upsurge in energy or was miraculously well again. I plan socialising around my best times (mornings), or for early nights.
I am planning my whole future around having a flat battery.
It’s not pessimistic. I fully intend to get back to well. Or as well as it is possible to be, for me. But oh how it takes the pressure off, knowing that I am catering for low energy, or sudden patches of incapacity.
Anyway, my heart is on the way to being completely normal, and I have my brain back. There is no longer an imminent threat of dying. I can write and think and dream again. And I’ve always been able to do psychic work – no matter how ill I’ve been. That’s a gift that comes through me, and it’s never influenced by my health. In fact, it has often been the thing which has energised me and kept me going during my darker days. So, planning is possible. As long as my plans make space for down-time, disaster and the unexpected.
I even changed my whole business model, so that I can run an ever-expanding enterprise from bed, on a few average health days a week. Imagine how much lovely free time that will give me as I move back towards well. Imagine how much writing I will be able to get done. How much living. That’s exciting for me!
Maybe you don’t have lyme, or some other kind of incapacitating situation in your life, but I can guarantee you that making plans based on reduced energy and reduced input isn’t a bad thing. Instead it’s a plan for life that makes room for life. It’s about designing a life where there is space for you to grow, to heal, to love, to change your mind, to move in new directions, to spend the afternoon napping, or with your lover, or catching a series of perfect waves.
I’m all for planning. Planning moves us purposefully in a direction of our choosing. It enables us to be effective with the use of our time and resources. It helps us to actively design our lives.
But I am also for living honestly, and being realistic about what’s on our plates. I am also for being kind to ourselves. I am all for making room to breathe rather than heaping responsibility, duty and endless tasks upon us.
What kind of plans have you made in your life?
Have you crammed so much in that there is no room for downtime, rest or fun?
Lyme has proved to be a wise teacher for me. I hope that by sharing my story, it also helps you to be kinder to yourself, to be more trusting of the process of life, to focus on your most important priorities and still leave space.
All sorts of miracles and wonderments can happen when we leave enough space for them. It’s not up to us to have to fill in all the blanks. Where would be the magic in that?
Much love to you, Nicole xx
Why of course, I’d have no idea of that which you speak. Especially this p-a-c-i-n-g of which you speak *ducks*. Working on it and listening to the universe and er, certain others. Funny how we can be so forgiving and accommodating for others and yet it’s hard to learn it for ourselves. Learning to embrace the unreliable instead of making self sicker is learning curve ( 😛 yes, I may be a tad slow on this curve). I’m glad for you that you are finding your way and accommodating your-self. xo
I look back over the last twenty years ,and I also see how much I have missed of life, and so has my poor husband ,but through it all, he has stuck with me …believe me he deserves a medal . I am about to have a huge change in my life , we both are , and I ‘m going to grab it tightly and never let it go . I wish you all the luck in the world with your problems, through it all ,you have helped me so much .
Cherryx
Thank you for sharing this very personal experience.
What I know about lyme disease is zilch so I found this interesting and informative I am so glad I do not have this disease
Hi Nicole – I think having CFS is like being a fly trapped behind a pane of glass – buzzing and buzzing to get into the outside world – only to realize that your energy drops like a lead sinker and that you were over zealous to even try / but you do the same thing again a few days later.
Like you I am learning more about my limits and how to take gentle forays into the world, that I can manage and enjoy. It is better than being that silly fly that just goes at the world thinking it can do it this time / that I should be able to do it this time.
When I am able to listen to myself and give myself permission to drop unnecessary balls a kind of peace comes into me and I enjoy all the small things.
I am wishing you lovely cups of tea and gentle forays into the world when you feel like it.
Love Susan
Very interesting. I do understand a lot of what you mean, I am in the same boat, health wise, although not as hard as you have it. I do know what you mean about being that “unreliable” person, I know it ALL too well. At the moment I am pretty much unable to work in a position because of my unexpected days, so I have to remain a casual. It’s even put a huge strain on my relationship, which sucks.
You’ve given me a lot to think about – how could I structure my life better in order to be able to live it well?
There is another opportunity at my work for me to be able to be in a field I actually studied at University – however, again, with the unpredictable nature of my health, I’m having doubts whether or not I should go for it. I don’t want to let anyone down but I also don’t want to keep having to rely on casual shifts to try and support myself.
I don’t know what to do.
It’s a tough call, but if having a more regular job gives you financial security that will take away a pressure that contributes to your health stress. Is there any way you can build a life around this new job? So that you can have food ready for when you’re tired or unwell, so that you can limit your energy expenditure outside of work? So that you can minimise housework and other energy zappers. I hear you on the relationship stress. So many relationships break under the strain of chronic illness. Thinking of you and sending love xoxo
Thank you, Nicole, for those questions. Sending love to you too. 🙂
🙂 You’re very welcome, and thank you!
So yeah … your ‘friend’ can go and get bitten by a tick and see how they like it. I’m always that unreliable friend, too and it makes me hellishly sad. I got sick on Saturday, and it was Mitchie-Moo’s dancing recital I’d been looking forward to for weeks. I slept and wept most of the day thinking about the unfairness of it all. Now here’s where some people might expect me to say something uplifting – like it must have happened for a reason. F**k that – I missed out on something very dear to me, and there’s no way of ever getting that back. It sucks. Unreliability sucks, but you already know that xoxo
Ah Carls, I know. It has been one of the saddest times for me, reading back over thirty years of my journals, to see how many times I missed something important to me because of health. Weddings, concerts, birthdays, parties, book launches, funerals – all because I couldn’t get out of bed, or I was in hospital or some such thing. I think it’s our job to shape meaning from whatever hand we get dealt, even if the cards are crappy but I get mighty tired of people with better hands than mine telling me that it’s all for the best etc etc. While I can see both sides of that argument, and always look for the good, sometimes it just plain sucks and that’s the state of the nation. Love and squeezy hugs to you, you gorgeously unreliable friend xoxo
See what Lyne did? It got you to accept your reality fully and it made space in your life for living. I love it!
Yeah, it’s been a powerful teacher, but I would be lying if I said I’d be happy for my life to drag on like this forever. Yes, it’s better than being dead. Yes, there’s still so much that’s wonderful, but if I’m honest, gee I’d love to stay up late, to plan to meet you for coffee or drinks or a walk in the park next week and be pretty sure I’d make it to our date. I’d love to be able to just jump in my car and drive somewhere, to eat any old food with gay abandon, to wear high heels… Still, they are minor wishes in the scheme of things, I know. I have my brain back, my life back, and that is all amazing, based on where I was just 2 short years ago. But I would like to be alive enough to give my husband a wife back instead of an invalid forever. That would be awesome.So I’ll keep taking my drugs, and making the most of each day, while part of me holds an image of me and my husband, hand-in-hand, out late after dinner one night, somewhere wonderful, just strolling along (And yes, my shoes will have a heel and I may even be holding a glass of champagnel!) Lots of love to you, Sara, Bless xx
Yes 🙂 Holding space for the life that you know is waiting for you is so important, as is accepting the life that you actually have. Be well, and thanks for the work you do. I love reading your blogs xo
Such a good post again! You are so positive here, Nichole, so please, keep up your good work in every area in which you are able. You teach well. Life with any kind of chronic illness, such as MS, Fibromyalgia, (and many more diseases or conditions that suddenly and unexpectedly “lay you low”), should always require planning for down-time of various durations, I believe. But many of us fail to do so, assuming that we’re being too negative. You’ve come upon a good lesson, so don’t let those heavy fatigues get in your way – give into them with as little frustration as possible – and they always pass, as you know. You (we) only have a certain amount of energy-currency to spend in any day,and sadly, we often don’t know quite when we’re about to crash. I know this all to be true, and still tend to over-do during the times I feel quite well. It’s not worth it, is it. Better to pace yourself, and plan them in. It’s a lot harder for those who have jobs to be accountable to, but a compassionate and flexible employer is like gold!
Yes, I’m lucky I left the corporate world and became my own boss. I am very forgiving of myself turning up to work in pyjamas. 🙂 Overdoing it? God, I am the poster girl for that, and I do find it hard to pace myself, but I’m certainly learning. Wishing you energy, health, love and light. Nicole xx
I will send you healing prayers. You manage to keep such a positive attitude throughout this challenging journey and I find you inspirational. Also… your website is quite wonderful and healing in my life. Thank you for sharing your wisdom.
Thank you so much, Cynthia! Healing prayers and love right back to you xoxo
I used to have to explain to friends that with Lyme fatigue, going to sleep won’t actually help. Once you over do it and deplete your resources, it takes days to get it back. People struggle to understand this. I ended up surrounding myself only with people who got it. I did not have the energy to worry about those that couldn’t comprehend.
I have found that the people who care will do their best to accommodate your situation, and that the rest aren’t worth the expenditure of energy it takes to try and make them understand. I’ve also found that it’s possible to make new friends, and a new life from the broken shards of the one you had to leave behind. Bless xoxo