not to be pitied

from here, via pinterest

"Sometimes I feel like we are the lucky ones."
We lie in bed before he slips off to spend the night tending to our offspring.
"I think that too."

He had just applied to drop back to part time work for six months. At first I was dark and brooding over it, the fact that ill health was robbing us of societal normality once again.
Us, not just me. That made it even worse.
It passed, like an angry cloud, when I saw the sparkle in his eye.

We have thought for years, there is a significant upside to living in the slow lane, keeping life a gentle pain-managing whisper. We have many an hour on our couch* becoming closer than we ever imagined, more united and delighted with our companionship, more than we could have if my body roared all day and into the night. It trickles down into the next generation too, time and ensuing fondness, which exists away from the hurry and scurry.

Sometimes the miserable path where you get stabbed and almost beheaded by an onslaught of low lying branches, has magical foliage not found on other paths. We get time and closeness.

Not a creative career, not as much money, not many pain-free days, but something so lush. '

* sans tv, is the key

nights

i am grateful for nights out.

madame brussels at night

i used to take them for granted. until i had to go to sleep at 9 pm because i was suffering.

on friday night we spontaneously decided to go into the city to look at the christmas lights projected on historic buildings...we left our little apartment at 9 pm. i wanted to cry for joy that i wasn't lying on my bed with ben helping me struggle into my pajamas and encouraging me to swallow my mass of bedtime pills. going out at dark? it seemed so crazily beautifully fun!

last night after ben's graduation we didn't rush home to put a migrained mess of a wife into bed. we left the ceremony venue after 10.30 pm and walked in the heat, in my heels, to Madame Brussels to linger a little longer over our celebration. sitting there, it seemed overwhelming that ben had in his hand a degree, and i sat by his side drinking, wide awake, well. it seemed like we were too blessed.

and what about the day after? was it spent in bed? no. that's what is even more deliciously incredible. i am crying as i write because i am so utterly blessed to be alive and pain free.

elation

Sometimes you have to go down before you can go up.

Sometimes you have to take two step forwards, one back, and then repeat. 

Sometimes you have to just be, just remain where you are for a long time. 

Always, you have to be patient and kind to yourself about where you are. 

Photo source

Those are the things I have been learning the past few months. The only way to describe my health at the moment is by a graph, where the overall shape is an upward slope....but where there are jagged downward jerks along the way. 

There are days where I feel characteristically ill, and others where I am so well I taste and delight in what it is to be in full health. One excellent week leads into a week of tears, migraines and couch rest – and then as suddenly as my bad health appeared, it departs again, like a fleeting bad dream. The main challenge in this new stage of illness is to be incredibly flexible mentally: to accept and embrace whatever my body throws at me, and to remember the upward slope even when I’ve taken a temporary plummet.

Perhaps that sounds simple, when written in a sentence – but we’re dealing with a heart which is longing and working towards healing. I agonise in those down times that I’ve taken a fall to my former state that will last for months. I deliberate carefully about how much to do: less to preserve my health, or more to utilise my new found well-being? I try to celebrate the progress without clinging to the health which may not remain. I pray and thank.

Each time I achieve something, I want to throw a party and rejoice for feeling alive. I cannot express how wildly well and free I feel as I do the shopping alongside Ben who has done it alone our entire marriage. How incredible it feels to put my arm around his waist on our walks, when I didn’t have the strength to lift it up that high for the first few years. How elated I am to be able to do the dishes, and help make dinner....go on long car trips, play my flute standing up, hold up my hair straightener long enough to straighten  my hair, and get ready for bed at night without any help. Tears of happiness trickle down my cheeks as I feel gratitude for this lavish gift, and dare to hope that the graph of my health is going to keep winding its way slowly, slowly to the top. 

being incredible

From time to time I have a day of insanity and decide that I am going to be superwoman A+ wife. Let’s make that, housewife. I model myself on a 1950’s wife, and decide to feed my man, wash for him, keep the house impeccably clean, and basically be incredibly industrious. Oh, and look good too.

 1955,  The Good Wife's Guide

Yesterday I was in this ridiculous frame of mind due to having slightly more energy than usual, combined with delusional thoughts that I am a failure of a wife for rarely cooking or cleaning. 

The day started well. I was enthused, and confident that yes I could tidy the house, clean the rabbit cage, do the washing, go to the gym and make dinner. Despite my illness. 

It got to 2 pm and I started to feel very worn out, and just plain ill. The house was tidy, I was exercised, I had some shopping, but oh how was I to make dinner? I granted myself the luxury of an hour’s nap feeling guilty for such a deviation from domestic goddess-ing. This nap was far from relaxing because I knew that I needed to get up shortly and keep ploughing on. My nap ended before I’d even began to unwind. But I decided that I was not going to fail, not this time, I just wanted to be a ‘proper housewife’ for one measly day. Partially because people pity Ben for having to work AND look after himself and his sick wife...and I take those comments as a judgement on me and my limitations. I resolutely dragged my ill body from the enticing couch and walked myself into the kitchen where I proceeded to cook my first meal in months. 

It was 5.30 and Ben arrived home. 

I felt deflated, ill and irritable. Exhausted from my efforts, I had nothing left to give, not even a laugh. I didn’t enjoy our time together because I was spent and ruined. By 8.30 pm I had the early onset of a migraine. By 10.00pm I had a head splitting migraine, which was not about to allow me any rest. I lay in bed holding my head for dear life, while moaning that I wouldn’t be able to make it to my appointment the next morning and what a disaster this would be. We didn’t get off to sleep till the early hours of the morning – and here ended my day of being a super housewife. Super.

A gorgeous friend (find her here) who is also chronically sick put it just perfectly after I told her my feelings:

But you can love him, laugh with him, cuddle him, be there, talk to him, smile, hug him, comfort him, care for him, and make him excited to come home for dinner. Aren’t those things more important and more precious than cleaning and cooking?

How many times has Ben said he doesn’t want me to waste energy on the house, because it’s not important, because it’s not what counts...

And I continually fall into the trap of wanting to be society’s ideal partner– the girl who earns an income, or the girl who is the classic capable housewife...instead of being his best friend and most loyal supporter. When I said my vows, I didn’t promise to cook dinner, I promised to love him and cherish him and respect him and that is all he ever wanted from me. 

Today I took my wifeing to a whole new level. I spent time with my friend, took my dog to the park and lay in the sunshine, lay on the couch, ate food and left the dishes untouched....and I am so ready to hang out with my man tonight. 

Dear Self,

I know you're a slow learner, but why do you keep getting side tracked from life by living up to unimportant expectations?

Seriously, D 

in his shoes

What is it like to marry a sick girl?

This is the journey that Ben has undertaken with me, every battle I’ve been fighting has been fought with him, and so in some ways we are both ‘sick’ because we both share in it absolutely. We vowed to love each other on the bad days, and that promise has been tested every week! He sacrifices so much in his love for me – he gives to me even though he won’t receive as much back. He could have waited for a girl who had a job, could cook him an evening meal, and always had energy for exploring life. 

It’s beautiful when love is less about self and more about giving. That’s the kind of love that lasts beyond the first giddying weeks into the decades of life, the kind of love that has sustained those amazing wrinkled couples holding hands as they hobble along at eighty. Ben inspires me. Real love is gritty, tough, and sacrificial – but it’s also lasting and deep.

What were your fears about committing to someone chronically ill, and what made you go ahead anyway?

Yes, my fears where exactly that. Could I commit to Dee for the rest of my life even if that meant I was committing to caring for someone very sick for the rest of my life? I knew enough about chronic fatigue at that point to know that Dee may never get better. She may get worse. Could I be there for her and care for her every day? Could I accept a very different life to what I had imagined my adult life to look like? I knew if the answer to those questions was “No,” then I could not in good conscience marry Dee. But I love her. I can’t tell you exactly how it happened but about three or four months before we got engaged those fears fell away and the answer to all my questions was a relieved “Yes”. I knew it might not be easy but I loved Dee and I wanted to spend the rest of my life with her, regardless of what that meant. A lot of people might face struggles like this later on in life and marriage. I think we were blessed to face them before. It was a proving ground. We knew what we were in for and we wanted to commit to each other all the same. There is an amazing amount of security and comfort in that fact.

What has been the hardest/most frustrating aspect to cope with?

When we’re both down. That is definitely the hardest time. It’s very hard to care for or cheer someone up when life has got you pretty down as well.

What have you learnt through this journey?

Lots – lots about myself, about priorities, and learning to love others. One of the big things though, one that has helped us manage through this difficult time is this: You have options. You can make changes. Your life doesn’t have to look like everyone else’s. You just have to have the courage to live a life that actually works for you rather than struggle to meet some ideal that society places on you.

How can your friends best support you as a carer and partner?

I think by accommodating us. Our life does look very different out of necessity. Things that everyone else considers normal or routine are a stretch for us or downright impossible. For someone to ask how they could make coming over or catching up easier means a lot. When people get the message that we can’t come over regularly or be somewhere every week it is very encouraging and a bit of a relief to be honest.

Are there any positives?

Absolutely. Like I’ve said I’ve learnt lots and we’ve learnt lots about each other too through this. We’ve seen the whole spectrum and I know what makes Dee tick, what helps, what doesn’t. We’ve grown both individually and closer together. I can say with absolute certainty that our marriage would not be as strong were it not for this.

We have also been able of laugh and have fun even when times are hard.

How does the unknown future of her health make you feel?

Honestly I don’t think about it. In one way everything is unknown so Dee's health is no more unknown than anything else. I could get hit by a bus, become a paraplegic, lose my job, or lose my sight and Dee would stick by me, I know. Life is unknown but God is sovereign.

Would you do it again, knowing how challenging it is?

 Several times over.

Ben is nearly finished his Radiography degree – he looks forward to working in a hospital next year and saying goodbye to lectures and essays. When he’s not studying or working, he likes relax with his wife and dog, curl up with some Tolkien, or cook up a storm in the kitchen.