someone on my porch

I was feeling blue going on grey with despair today, and prior.

I began an ineffective inspirational pep talk about how much I have to be thankful for. In a mind as emotionally limited as mine, all I could think was, “Yes. But it’s hard to appreciate all these things when you feel this ill.”

Only two words explain the physical problem: endless poison. The common cold which comes knocking to all each Winter, banged on my door in March and has not departed except for rare half-day trips.

So then, keep plodding. Life goes on.

And life is going on, but in such a painful manner that I dread its continuance. I wake with my red throat, pudgy tonsils, eggy glands, and I sleep with them. I carry leaden fatigue with me for as many hours as I am awake, and then repeat and repeat and repeat. I feel like every vein is infected with this nasty achey poison. I find myself longing for ‘just one day off,’ but I know it would never satisfy.

   

At some point, my mind became sad too.

We scour the internet for a specialist, a clinic, a somebody who knows something about endless poison. Last year, and the year before, my medics exhausted their virus ideas. Leaden and lifeless, I remember how we hoped this year of stability would be the environmental answer to the problem.

Wolfie barks furiously at something outside, and the something happens to be someone on my porch holding a bouquet of flowers.

It's for me! The angel someone didn't know that I was feeling this way, but knew that constant sickness can bring on misery. Over and over, something has come when I feel most crushed. I put the bloom in a vase with water, and dry my wet cheeks, and keep thinking that it is providence. What else could it be? 

  

say nice things

found

Some people say unhelpful things, lots of people say nothing at all, and a few say the perfect thing – something empathetic, real, comforting. Here’s a list of five comments which have warmed my heart, and would probably do the same for others.

1. “Wow. That sucks!! That must really suck for her. ”

At first Ben told his colleagues that his wife had ‘health problems.’  But as his relationships strengthened, he started letting off the ‘chronic fatigue syndrome’ bomb. The other night he told me that his friend reacted in this refreshingly warm manner.

Yes, it does suck! That simple heartfelt comment seems to sum up the frustration at having reached a nasty stand still at such a young age. This response is perfect, because I can join in and sit for a moment in the reality that this illness is not even close to fun. His work friend got that this was bad, real, and sad.

2. “Please feel free to call it off at late notice if you need to.”

My younger brother wrote this to me. It is possibly the most comforting statement I have ever heard. He said late notice. How nice can you get? Just to know that if my body chucks a hissy and I can’t fulfil our plans, he won’t be surprised or annoyed. The pressure if off, and I thrive on no pressure.

 3. “I have a cousin with that.”

Yippeeee! Not glad that your acquaintance is sick...but, if you have a relative or friend with this illness you probably have a faint idea of what I’m talking about. I love to know that this illness isn’t so unheard of or invisible.  

4. “When I had a cold/flu recently, I thought of you and can’t imagine how you live with that all the time.”

This makes me want to sob. You get it, you have tasted my never-ending sickness, and the fact that you realised what I am going through makes me feel so understood and loved. You know that ‘tired’ is the wrong word for it entirely and I want to hug you right now.

5. “I’m sorry you can’t come. That must be so frustrating for you.”

Usually when I cancel, I get the standard, “Alright, that’s ok.” But what I really long for is them to realise that it’s not just them who is put out. I am put out, probably even more than them, because I really wanted to come and I’m not well enough. And because I repeatedly can’t attend things, I am starting to get really over it.

I feel so privileged to have heard these things{and many more}, and to have such beautiful people in my life. When the pain can’t be taken away, love is a balm.

"Be kind, for everyone you meet is fighting a hard battle." 

Plato

"Rejoice with those who rejoice. Weep with those who weep." 

Romans 12;15

damned if I do, damned if I don't

This is the damned if I do, damned if I don’t illness. It feels like that, anyway.

When you are raised to do your best always, work diligently, and provide for yourself, the transition into life with chronic illness is incredibly difficult. It is a humbling sometimes humiliating transition. These ingrained values and expectations battle violently with the new realisation that self-care is vital to recovery. 

At times, the internal struggle sends me mad and robs my freedom. There is little spontaneity and freedom in this life, as everything is carefully evaluated and planned for survival. I cry for the days where I could do something which didn’t cost me something else.

Activity = illness 

Rest = feeling lazy, depressed, unfulfilled

So you say, it’s simple, just do a little bit. Enough to feel like you’re keeping busy, but little enough to keep in decent health.

That would be perfect. But life just doesn’t come in bite sized portions: houses need cleaning, meals need cooking, people need seeing, events need attending, and every single time, there’s a cost to do it, and a cost to refrain.

When I leave the dishes in the sink for Ben to do when he comes home from a day at work, the cost to me is emotional. I hate my vulnerability, the burden I feel that I am, the guilt of staying home all day and pursuing only leisurely activities. Tears of frustration burn in my eyes as think how wrong it is that Ben has to do so much. 

When I make the decision the other way and do the washing and the vaccuming, I am tired and sore and need him to bring me dinner. I feel like I’ve lost again.

I feel like I’m damned if I see the friend and endure the resultant pain, and damned if I don’t because of the time lapse and guilt. If I cancel my appointment I feel relief, but also confusion as to whether I was right to do so. I accuse myself when I stay home from an event and end up feeling well, and when I go to an event and crash significantly.

Ben and I are invited out to catch up with old friends. Battle breaks out in my heart instantly. Should we go even though the relationship is unsustainable in the long term (due to family and more essential friendships), or turn down the thoughtful offer and risk hurting them? After great debate, a message of decline is drafted. It is based on a phrase I try to live by:  speak the truth with love. 

Thanks so much for your kind offer. We would have loved to see you, but to manage Danielle’s chronic fatigue syndrome we really have pace, and limit relationships...

As the message is sent off, I feel the typical wave of unsureness. How do I know that I’ve made the right decision? Maybe I’m just a selfish, lazy, hyperchondriac – I wonder, for the millionth time in a week. With so many decisions to make every day, I become weary and confused. 

Often the replies to my decline message show little empathy about how much we struggle with this situation too, and are ‘that’s ok’ in nature. The sting is milder each time, but it’s never pleasant. 

Most of the time, I don’t know whether I am being selfish or wise. It’s an endless conundrum. How little should I do to preserve my health? How much should I give out to the detriment of my body? And how will my body react to each thing? What is the best thing to do?

I don’t yet have the answers to the mental terrors of managing an illness. I know it will become clearer to me at some point, and if you have a tip for me, I would be so grateful for it.

All I know is that not everything is a right or wrong, and perhaps even the words wise or unwise are too strong. There is much grace for the things that matter. I can never know the consequences, and I can never micro-manage my life to perfection. I think the best thing is to stop second guessing and revisiting decisions. It’s the phrase of our decade and said too often, but it means something to me: Live in the moment.

Or as this blogger so beautifully shared,

“When I put my whole heart into where I am in living each moment, I will find (a lot more) peace and joy.”

words for wednesday {page 10, advice}

Weeds are flowers too, once you get to know them.”

 

A.A. Milne

“The best way out is always through.”

Robert Frost

Last week had some tears because I had a difficult conversation with someone who implied that I needed to do more ‘spiritually’ to get better, and who thought if I believed I was better I would be. Sometimes I have a sad week because I’ve told someone that we can’t catch up and they ignore it or off handedly ‘forgive’ me for the inconvenience I’ve caused them.  But the experience last week was worse because it made me so frustrated to think that some people don’t see that tough things can bring about good, that they don’t all go away fast and its part of the grand plan not a failing on the sufferer’s part.

Having CFS is horrendous at times, I cannot recommend the experience – my tissue box knows that I have plenty of ‘why me, what happened to my life?’ sessions.  But right alongside that grief, I also see that incredible good has come out of these years and I’m quite ok with the way it has shaped me and changed the way I live.  

Last week I was wishing for compassion and empathy rather than advice or rejection.

I wish we could crawl along with people in their lows as readily as we’ll party with them over their highs. 

“Although the world is full of suffering, it is also full of the overcoming of it.”

Helen Keller

I wonder, is overcoming suffering being freed from it or going through it well?

what time shall i set the alarm for?

words are powerful. they can be lethal, or soothing. they can be used to lift up, or crush. they can produce smiles, or tears. 

it scares me how fast we toss them from our lips – when you consider the impact on our listeners. they are so easily formed and so painfully processed. we hurl them around, sometimes we leave a mess behind us. sometimes we leave a ray of sunshine.

when you are unwell for a long period of time you have the privilege of becoming well aquainted with the very best and worst of people’s responses. you learn to think before you speak because you figure out the power that words contain, and it feels so acute because you’ve never been so fragile or raw. 

sometimes i have sobbed, ‘it’s hard enough feeling like this, without having to deal with the things people say.’ i would think, ‘it’s not like i chose this’, and feel that bitterness at people having slipped away as soon as I was low, and boring, and irritable. but when there is only small reciprocation on the horizon, it’s not surprising, is it? i’m more immune to these things now, perhaps I have a thicker skin...i’m not sure, but it’s been a journey - one i'm grateful to have been on.

when you agonise over sending a cancellation message to someone, so often there is a cold, “that’s ok. see you next time,” or a hint of frustration. you long for a word of understanding, something a tiny bit tender which shows they didn’t just consider their own inconvenience, but also yours and your pain at having to cancel. when you leave early, you sting a little as they urge you to stay longer – you wish they would celebrate the immense effort it took to come at all. and it hurts when people say that if you thought more positively, or prayed for the pain to go away, or truly believed you would get better, then you would. because in your experience, the pain is still there... still there. you see pain on earth, and you feel it and groan with it, and you know that it’s not dependent on you for it to leave because if it was, it would be gone.  

my friend sets an alarm when she comes to visit me, so that she won’t stay so long that I get worn out. I feel this crazy warmth of joy when she says, ‘what time shall I set the alarm for?’ those words speak understanding and love a million times over. i can’t possibly list all the things people have said which have filled me with warmth.

you can always stop to think before, but afterwards it’s a bit late...so i’m going for the before approach. 

you don't know that you're toxic to me

You don’t know

that you’re toxic to me.

Even you, my close friend,

my incredible family.

You don’t see how I hurt

after we’ve talked. As we talk.

How I ache and burn,

How I lie and wait.

You cannot watch,

as I mend myself.

In my private space.

I long to be with you,

you give me joy.

But oh, your humanity is something my body

cannot tolerate. Anymore.

You stimulate me,

violently,

unconsciously.

I leak, adrenalin.

My head, my ears, my heart,

Hurt.

you assault my senses,

overloading me with sight

emotion

scent

presence.

You can’t see my inward battles.

I need you to leave

I feel unwell

Yes, even with you.

But I feel so rude

that I hide my pain.

Or I want to keep talking

despite the discomfort.

I pretend I am normal

but it always destroys my health

a little, or a lot.

I lie to reassure you.

I lie far too often.

I fear telling you the truth,

That your body affects me detrimentally,

of my fragility.

That you, even you,

overwhelm me.

I limit my friends, I can’t always invest

I can’t bare interaction

often, for long.

We ‘need’ to catch up,

that’s what you say.

But those words make me shiver.

No. We don’t.

Don’t oblige me with ‘need’.

Don’t say ‘it’s been too long’.

It’s not long enough, for me,

if I’ve been silent.

You who just wait and gently offer yourself,

when I’m ready.

for however short a time,

without asking for more,

You are the sunshine.

In your patience, your subtle communication,

you restore me

from the terrors of interaction.

You never ask for more than I can give.

You know that you’re toxic

to my body.

photo source