thirteen things i do to stay okay

Facebook is not a good place to linger. It’s nice to share in people’s joys as they display their highlights reel, but the second thought after joy for them is, ‘but what about me?! Why have I not been in a photo shoot, graduated, got pregnant, made something original, been to europe or thought of something funny to say?” This addiction ends in greater sadness at my own lot. 

Sunshine is an antidepressant

Crying is an anti depressant

Tea is an anti depressant

Antidepressants (the official kind) can be wonderful and terrible, but it is not embarrassing to be on them. Nor is it embarrassing to sit in the office of a psychiatrist and fight back tears while you tell him that you are scared of holding cups in case you drop them. The mind is complex, and it’s ok for it to get sick, just like your body.

If you find a nice medic, don’t move away or let them retire. If you find a nasty one, cry a bit and get the courage to disengage them.

You can be happy even when your health gives way and your dreams are put aside. You can’t be happy if you hold onto the way you thought things would go. You actually have to surrender, maybe multiple times a day if you’re like me.

Do whatever you need to do to make life manageable. Dare to be unlike those around you and dare to be unashamed. 

Young marriage may seem like a horrifying idea to the majority, but the joy I get from knowing that we are stable when the rest of my life isn’t is indescribable. For me there was nothing more beautiful than the guy I love wanting to commit himself to me, despite my lack of health, career or certain future. I am slightly scarred from all the comments about how we’re still babies, but I’m getting over them.

On that note, lots of people will say/do lots of unkind things to you in your life. Or stupid insensitive things. The longer you are alive and the more comments you hear, the stronger and more bullet proof you become. Crying, again, is reccomended for a short spell. {ps. one benefit of an unpopular blog is lack of mean comments.}

  

Being at home all day long makes you want a baby desperately, despite physical limitations. Try to be uncommonly rational in this situation (picture babies crying at 2 am) and get a dog or cat if you are struggling.

Things can be true even if you do not understand them. I think my life is valuable even though i stay in the lounge on the couch most of the time. I think I could get better, despite not knowing how.

Every single day, God gives new mercies. Don’t worry if you are empty the night before, because they don’t come till morning. 

never think never - thoughts on getting better, finding love, and whatever else.

Endlessly sick.

I feel it’s endless, but of course it’s not. It hasn’t yet been 5 years. 

But because I can’t see the end, I think there won’t be one.

Last year we bought home our precious dog. He is my fur kid, best friend, blanket and all day entertainment. The novelty is yet to wear off. Of course we wanted a good doggie, so we took him along to puppy school and read books on training.

His extreme excitability meant we moved at snail pace through obedience school – he was the vocal, distracted, bark at the other puppies, dig holes, sit the wrong way, and ignore commands kind of puppy. He was the puppy who had to stay in pre-school while his peers were moved up. If he were human he would certainly have been diagnosed with Attention Deficit Hyperactivity Disorder. 

Ben wanted to quit after two weeks. We walked away with our eyes averted because he was so mortifyingly yappy and squealy. But our trainers said he would get there in the end, he was just a young hyper crossbreed. I kept asking them every week, are you sure? Are you reeeeally sure? Because I see no progress.

We were determined to train him to heel at our side on the left, as is recommended for leadership reasons, rather than let him pull us along tractor style. The romantic evening stroll turned into night time training terrors. No more, ‘How was your day babycakes?’ and a lot more, ‘HEEL Wolfgang!’ He would pull again two seconds after his last correction. I would come home with blisters on my hands from restraining him. The last few months, hope of him ever walking without pulling waned. I was contemplating allowing tractor style and giving in on all training philosophies. Is there anything worse than effort put in with no returns? {Ok, probably. But, it’s fricken annoying.}

And then it happened, seemingly out of nowhere. The first time he walked by my side, no tugging, no blisters, I thought it was a fluke or serious illness. But it happened a second time. And a third. His was not gradual progress over a year; it was as though the light bulb finally went on inside his stubborn fluffy head after 12 months of rebellion and he’d figured out that it was in his best interests to heel. He has occasional silly excitable days where heeling does not happen, but this is now the exception.

Whenever I walk him now I think to myself ‘that might be what happens with me’. I’m going to struggle along and feel like I am going nowhere at all. And then one day, the time will be right. My body will just start to function like it used to. I don’t get the power to decide this; but it happened like that when I made massive progress last summer – swift and magical. I was so shocked by my improvement that I cried often; I thought it would never happen. There’s no warning bell for life events: today you will meet your life partner, today you will conceive your long desired baby, today your health will turn the corner.

It’s illogical to think that because it’s not happening now, it won’t.

Never think never.

words for wednesday {page 13, are we friends?}

The trouble with me is that I fight CFS. We're always talking about fighting and battling illnesses, particularly cancer, because we want to come out on top.
But with this one, the more you deny 'it' what it wants, the more it eats you up. The harder you fight, the longer the battle will be. In the first year or two, I fought it passionately by going to university despite the pain. But it won, of course. Now, I fight it on the home front.

It says, “Ok, I know it’s only mid morning, but you are off to sleepy land now.”

I refuse, keep doing what I am doing, eat something, drink something, beg it to give me a break and let me stay awake. I even whip out the tears, as a last resort. But it wins, and soon I am nodding off to sleep with my quilt, at 10.30 am.

The other perspective I could take is that ‘it’s’ not so much my enemy but a faithful spy who knows the inner workings of my body. When it commands a rest, it’s doing so because this is what I need to someday regain my health. I want to push it away and annihilate it for stopping me from doing so many things that my heart loves. But perhaps it’s not my enemy after all, perhaps if I fought less we could get along, become a team and make some more progress?

After writing this, I found this - I am still deciding.

“Discovery consists not in seeking new lands but in seeing with new eyes.”

Marcel Proust

“Happiness can exist only in acceptance.”

George Orwell

“Hope itself is like a star - not to be seen in the sunshine of prosperity, and only to be discovered in the night of adversity.” 

Charles H. Spurgeon

words for wednesday {page 12, nice people}

My friend finds the best words and gives them to me as presents. She found the ones you read today.

“Fame is a vapour

Popularity an accident

Riches take wings

Only one thing endures, and that is Character.”

Horace Greeley

And then, I think what my friend wrote after this is even better. “It doesn’t matter if you spend 8 hours a day at a job you hate or all day in your home. It matters who you were in that 8 hours."

I just have me left - I don't have the qualifications or income or social life I had envisaged. Sometimes I feel scared even to talk to my hairdresser in case she asks what I've been doing that day. I fear someone will come to the door while I am asleep at midday. I feel that I need to justify my very existence by proof of things achieved. It's the darkest cage, the thought that I am a waste if I don't do the usual things, have the conventional life. But when I think that it's how I live my moments, I feel like I am alive; that my days matter, that my existence is valid.

  

"Kind words can be short and easy to speak, but their echoes are truly endless."

Mother Theresa

Disillusionment with medics had settled thick inside me, and last week I had to attend another appointment with a nurse to be put on a ‘care plan’. I wasn’t looking forward to it – I could predict the unhelpful comments and anticipate the deep sense of misunderstanding I so often stumble away with. 

‘You only weigh such and such, are you sure you don’t have anorexia rather than CFS?’

 ‘You don’t eat sugar, dairy or wheat; I’m concerned it’s not a balanced enough diet.’

‘Your tests are all spot on perfect, so things are obviously going well.’

But this nurse, she had me bouncing out of the clinic, ecstatic. I actually had an adrenalin rush from happiness, and managed to go to a few shops afterwards before it wore off. Not only did she empathise about my illness, she spoke with sadness about all the misunderstanding that invisible and longterm illness sufferers get. Centrelink, dreams lost, and patience were just some of the things we talked about. She knew I was petite, she knew my diet was healthy, she knew I was sick. We laughed and talked for almost an hour and every word she said was balm to me. It was like having a warm bubble bath after many ice ones.

I went away and thought that if every single person was as kind as she was, we would have a very happy world. I naively wonder why more people can’t be like that? She is doing one of the greatest jobs on earth.

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 11, stability}

“But feelings are flickering flames that fade after every fitful stimulus.”

Lewis Smedes

We are not our feelings. And our feelings won’t last. I am an "I’ll never be happy again!" or, "I am so happy I’m going to explode" kind of person. I love this quote because it speaks reason to me when I’m submerged in volatile intense feelings. Intense feelings use up litres and litres of energy and I feel gushing loss of control. It’s a comfort to know they won’t linger forever and equilibrium will return. A truth for the blue days, and for the high days.

Ben and I have been reading a book on marriage and this chapter was fabulous on how passionate and electric new-love inevitably fades but is met (with the investment of time and will) with the satisfaction of being known and loved for the long term. Sometimes we get thoroughly freaked out by looking at all the marriages that started out just happily as we did, but didn’t last. So much of our family. We wonder, are we just thoroughly naive about how bad it’s going to get? 

But eventually we have to stop wondering and worrying that one day we’ll wake up and not want to be together. We return to making that daily decision to love again. Something stable, something tangible, something a tiny bit like our Maker’s commitment to us. 

“For it is in giving that we receive”

Francis of Assisi

“And in the end,

we were all just

humans,

drunk on the idea

that love,

only love,

could heal

our brokenness.”

Christopher Pointdexter