I scroll endlessly between the two options: dark green or dark grey? Which pair of boots will be better? (I really wanted patent black, but they didn’t have it). Grey will do. Grey will be good. It will be better than patent black, really. It will be more wearable.
Do I really need these boots?
****
Most days I am actually okay about being ill; I kind of accept it and get on with life. It doesn’t feature much in my thinking.
Today is not one of those days.
It always seems to happen after the good times, the best times. We have just been on a trip away from home, for two nights in a hotel. It was a humongous room with a balcony overlooking the sea. After a month of not being outside at all, I could see the horizon again. I had a massage which was indulgent and relaxing. I watched the people come and go as I sat waiting for my massage and thought to myself that I looked normal, that these people couldn’t tell from looking at me that I spent most of my days in bed. I ate creme brรปlรฉe. I saw penguins and seals. I laughed at my boy, and spent quality talking time with my husband.
And now I should be grateful, but I feel profoundly disheartened.
Most of the time you survive this illness by telling yourself it’s okay, this is normal, really, and there are worse things, and you could be worse off, and I could be bedbound, or not have my husband and baby – and wouldn’t I rather have those things than be perfectly healthy? And of course, I would.
But then there are the times when it just strikes you again: this is not normal, this is not okay. It is not okay that I have to measure out my activities in teaspoons, that I have to miss friends’ weddings, that I cannot play games and run with my boy, that I cannot go to church, that I can no longer sing, that I am not doing ministry, that I am just never, never getting better.
I am home now, and already my body is aching with the strain of the fun of Christmas and the time away. My heart is clunky and erratic, my muscles painful and knotted. And I am tired – so tired. This is the ‘payback’ of pushing things, even a little.
I am bored of being ill. I am weary of it. Today this does not feel okay.
*****
I cannot cook for myself, but I can still buy boots. I can wear boots, and when I leave the house I will have new boots.
And then I consider, is it even worth buying them?
My rule of thumb, post-2010 relapse, has been to do a maximum of one thing a day, and aim to leave the house for an hour or so once a week. But major relapses since then have shown that even this is too much. I need to rest more. My rations are probably more like one thing every other day, leaving the house once a fortnight.
So that means this year I will leave the house maybe 26 times, and most likely only wear those boots approximately 15 times this year. It is foolish, ridiculous even, to buy a pair of new leather boots, simply because I love shoes. They will get so little wear. It is an extravagance. I should not buy them.
*****
I have to be frugal, like this, with pretty much every area of my life when it comes to time and energy expenditure. Going over-budget on fun things for a day can cost weeks and months in a relapse; it’s not worth it. Have I gone out for a meal last week? Then for the next two weeks I need to talk to friends twice a week rather than four times a week.
I go back to the website and select ‘dark grey’ and click ‘buy now’.
Sometimes all you can do is buy the ridiculous boots anyway.
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Tanya,
I believe strongly that you are doing ministry; every time you write a post; every time you tweet a comment; when you reach out to someone; when you share your heartache and your struggles you minister to us all. When you pray you are moving heaven for others. Thank you for doing so. Thank you for sharing the darkness. I will pray daily for you and hope that there will be more up time for you. I am as everyone has stated glad you bought the boots. I am sure anyone of us would have bought them for you.
Your writing so resonates Tanya. Your struggles and your triumphs so well versed by you.
May God bless you richly in all ways this year.
Thank you so much, Mark. It is good for me to remember this is ministry, that God is in it all. Thank you for your prayers.
So glad you bought the boots. Wear them indoors. I am constantly overdressed for lying around doing nothing but it makes me feel so much better. It’s one nice thing I can enjoy. It always feels harder after the good times – having had a taste, however small – of ‘normal’ life highlights just how abnormal life is most of the time and reminds me of all the things I long to do but can’t.
I was also feeling frustrated recently that when I am this ill I can not use the gifts God has given me – as a therapist, teacher, speaker etc – but felt really challenged by Him that there are many others who can be a good therapist, teacher, speaker, but no others who can walk this path and this journey that I am on – be fully me – in a way that glorifies Him in the midst of pain and suffering and despite not being able to use those gifts and do the things I long to do. The same is true for you. You write beautifully and movingly. Thank you.
I really love your perspective on this. And thank you for stopping by and sharing some of where you’re at.
The last I had heard you were better (Better-better or just better than you were??) I am sorry to hear that it’s still tough for you. This is a long old journey, isn’t it? Thank you for traveling it well.
I don’t feel as if I travel it at all well. Lots of ranting and raging and crying! Have had 6 years of being a lot better than I used to be but far off well. Still on benefit but until October had been doing 3-6 hour’s work most weeks (what ESA calls ‘permitted work’) as a therapist at Eating Disorder centre in Stockport where I’d done a placement. It meant doing little else really, but I loved it and was making slow progress – managing church most weeks, driving a bit and occasionally managing another outing in the week. But everything went very pear-shaped in October and I’ve been in bed / on sofa since. Even more scary after being a lot better for several years – the fear of going back there and losing all the stuff I’ve fought so hard to do, just when life seemed to be moving in the right direction. I sold my wheelchair 6 months’ ago having not used it for over 6 years and convinced I never would again, and could have really done with it since October. Starting to come up a bit now but keep catching stuff off people. Maybe I should become a hermit! (No!)
Oh, gutting, gutting…
I’m really disappointed for you. I’m totally with you with that fear and despair.
I will pray that this one is a temporary blip, and that you get to a place again where you can stand (literally and figuratively…)
Much love to a fellow traveller xx
Bless you, Tanya, what a beautiful post. The honest truth of living with M.E. day in day out really strikes a chord. I think at the turning of the New Year, taking stock of the actualities along with the longed-for old possibilities is such a challenging part of the journey.
These boots are made for walking – and that’s just what they’ll do… They may not be destined to be “seven-league” boots in earthly miles, but as you stride bravely into your dreams for you and your lovely family, sharing through your wonderful words with all of us, every step you take brings glory to God, and thankfulness for His gracious footsteps.
You’re so right – it’s something about these times of year that are harder, the looking back and forward.
Thank you for your lovely words of blessing.
Yet again Tanya, you so brilliantly and eloquently express how so many of us are feeling. I had a really lousy week last week (post Christmas ‘tk’) and I ate something seemingly innocuous that mucked all my system up for a week…
With my xmas money I bought a ‘stick on’ pickup for my uke – so I can plug it into the PA system at church when I play. (I actually got my ‘good uke’ instead of a holiday a couple of years ago…) Some would see it as an extravagance as I don’t play often – but I’m glad I got it.
So you keep buying the boots ๐
ps, my granddad (who rather liked a joke) once went into his local hardware store (where he was very well known) and asked for some ‘light black’ paint! (funnily enough the person behind the counter couldn’t find any!!!)
Sorry to hear you had a lousy week post Christmas (yet simultaneously gratified that so many others had a v lousy post-Christmas ‘TK’ exhaustion). December is a really bad time to do Christmas, isn’t it??
Thanks for being Team Boots. ๐
I presume Jon knows you bought the boots? Or is this your way of telling him? ๐
Sounds like a great hotel, I presume in Torquay.
Still praying for you.
This is definitely my way of justifying the purchase…
Thanks for the prayers ๐
They’re “just boots” and yet they’re not. Sometimes it’s those little things that we can control that mean the most. I dare say whenever you wear them, it’ll call to mind that sense of control you felt when you bought them and it’ll remind you of the things you can still do, even if it’s on a more limited basis. Thank you for continuing to write these things out, Tanya. I like this window into your soul.
Leigh – this comment means so much to me. I was so struggling with the thought that I am just being self-indulgent with the boots, and you tapped into what it means. That is it, exactly. Thank you for understanding. You have telepathy voodoo (in a good way!) ๐
I am in that place. I am “recovering” from fun time with my family this Christmas. I am working out if I will manage the things that I need to do.
The concept of being frugal is a great description of how it feels to be ill with ME. The constant weighing of how much will doing X cost me, how many days will I lose if I go to this wedding.
I hate all that this illness has stolen from me.
And yes if I go out to have a hair cut or something I like pretending I am as well as I sometimes look and chatting with the hairdresser about my life, conveniently missing out all the things I miss out on.
Is there a way to be content with this illness? Is that even what I should be striving for? Am I allowed to be outrageously angry about all the things I will never get to do, all the things I am not allowed to dream of doing.
I hereby give you permission to be angry. This world is not as it should be, nor as it will be.
I’m so glad this connected with you – thanks so much for this comment. X
Oh Tanya your post made me cry! I can relate so much to the frustrations of this awful illness, especially suffering a post Christmas relapse. “I am bored of being ill. I am weary of it. Today this does not feel okay.” This is me today. But I know God uses our pain and our frustration. I see how much he uses you through your blog. I hope tomorrow is a better day for you, you’re in my prayers. I’m so glad you bought the boots!
I so nearly didn’t press publish on this post – and comments like this one make me so glad I did. Thank you, sweet Jess. Praying for you. X