Sunday

When I wake up, it’s dark. Dark and loud. I can hear something blaring, but I’m too groggy to work out what. Beside me, G moves, and in a moment the noise goes away. He sits up. By this time, I’ve realised it was the alarm. “Whthtm?”

“It’s 8:30, you’ve got to get up.”

“Eith…? Islpntm…” I roll over, already drifting back into my dreams.

“You can sleep if you like, but you won’t be ready for church.”

I feel like I’ve been dosed up on sleeping tablets, but I drag myself up and try to assess the situation: 8:30. Sunday. Will be picked up in 45 minutes for church. Need clothes, earplugs, sunglasses, walking stick. Need to leave at 9.

I try to take a step towards the wardrobe, but my legs are filled with lead and I fall straight over into the door (ow). I forget I can’t walk properly. I grab the first clothes I find and hobble back to the bed, sit down, slowly put them on. You don’t need to stand up to get dressed. My arms ache like I’ve been pulling weights in my sleep again. I lie back down. 8:45. Need earplugs, sunglasses, paracetamol, shoes. My mouth is dry as the desert so I drag myself up and shuffle to the bathroom. Oh. Where’s my glass? I shuffle back, grab the glass, and then back again to the bathroom… legs aching too now, but someone has conveniently placed a seat next to the sink for me to rest on. Shoes, keys, walking stick. I pick up my shoes as I head back, then put them on. My feet instantly feel 100x heavier, weight lifting for tired ankles. 9:00. Shoes, check. Ready to go.

It’s fortunate for me that G points out all the things I’ve forgotten, before I walk out the door.

Left hand banister, right hand walking stick, I face my nemesis: the descent of doom. Sixty steps of suffering, each more daunting than the last – the penultimate challenge to anyone wishing to venture outside. I lean my weight into my arms and take the first step – right foot down, left foot down. So far so good. Step two – right, left. I’m filled with hope: so far, it’s no worse than shuffling. Step three… right… and there as my mass is concentrated on my right leg, the shakiness sets in that lets me know it’s not so happy taking my weight. I switch leading leg: left… right… left… right. Two steps each side, it’s twelve whole steps before I’m in so much pain I have to sit down. I rest there until my heart stops racing. G catches up with me, and helps me the rest of the way down – one hand on the stick, one arm round his shoulders, twelve stairs at a time. It’s very romantic. By the time we reach the bottom, my right arm feels like it’s being pulled out of its socket, and the left one’s not faring much better. One last push, and I’m collapsed on our front-door step, sunglasses on, in the glorious real sunshine.

Stephen’s pulled up his car on the other side of the street. By this point, I’m not sure if I can make it that far. The concrete slabs around my feet are dragging me down – can’t go nearly as far with them on. Somehow I make it to the car, and I’m sitting down again, and we’re off. The seat doesn’t support your back very well but it’s a short journey, I can stand the pain for now. I chatter away happily. It’s so good to be out.

We’re dropped off right outside the door of church, while Stephen goes to park in a less convenient location. G taking my weight, we make it over to the front steps. I sit down, roll up my sleeves and bask in the warm sunshine. It’s been four? five? weeks… I can’t really remember, but it feels so good. I lean against G and we chat aimlessly, greeting the people who walk by us and enjoying the weather. I want to sit outside forever, sun on my face, his arm around me.

Too soon, we have to go inside – the journey from the front door to the prayer area takes at least five minutes, and if you time it wrong everyone can stare at you hobble. We take it in stages, just like the steps at home – front row, back row, bottom step, middle step, goal!

“I thought I could walk further than this” I grumble, as I barely make it to the first row.

“You always think that” G chuckles.

By the time he’s dragged me half way up the stairs, prayer has started. We sit there, joining in silently with the voices above us. I praise you God, because you’re awesome. Because you made sunshine. Thank you for sunshine. I never get much deeper than that, anymore: my head feels like it’s had a pillow stuffed inside it, squashing all my thoughts out of my ears, and filling me with cheap cotton fibre. Please save people. Please heal me. Thank you for G. Thank you for Stephen. Thank you for sunshine. I have acquired the internal linguistics of a five-year-old. I can’t follow thoughts anymore, I get lost half way through. Thank you for… things. It’s warm. Thank you. I’m in pain. Do stuff. Hear prayer. Thanks. My prayers become more detached and I lapse into a state of sleepy incoherence, trying desperately to hold on to what I’m doing. People talk about what they were praying for – I can’t remember any theme. People prayed for me: I’m thankful. I think my prayers were thankful, I think I prayed people would come to God. Sitting here is uncomfortable.

All around me, people are talking. I hear snatches of conversation, but I can’t take them in. It’s too loud. I fumble in my pockets for earplugs, and someone starts talking to us. Their words are bouncing around the cavern where I usually store my brain; I try to focus on them, make them make sense.

“Oh you know, we’re just ticking along. It’s nice to be at church for once.”

“Well, I just wanted you to know I’m thinking of you.”

G smiles. I smile. Thinking accomplishes nothing. I’m suddenly seized with sadness, being surrounded by all these people who think about me but never visit. I’m glad they pray for me, so glad that people are praying for me, but I spend every day by myself, in bed, in pain, unable to take care of myself. I’m glad they love me, but I wish they loved me. I’m glad they think about me, but I wish they would think.

I get G’s attention: “I need to lie down.” We head slowly for a pew. It’s a huge energy sink, getting up to the balcony for prayer, but it means we can get a pew to lie down in, and nobody wonders about the strange sleepy girl in earplugs and sunglasses. Downstairs you have to sit upright, and that’s a whole other challenge. G is ambushed half-way by more conversation, so I sink to the floor and sit there, not even bothering to follow the flow anymore. The words stream around my ears and touch my head, I think I understood them but I can’t seem to tell myself what they meant. People move on, G helps me back up. There’s light, and sound, and people being busy, and somehow I make it to my makeshift bed and I can rest.

I drift in a sea of noise and pain. G brings me tea. The noise increases, and I remember to take my co-codamol before my skull starts cracking to the beat of the music practice below us. A couple of people come over to chat; I try desperately to remember names and faces, and what’s wrong with me and why I’m ill. I think I manage to make sentences, they make conversation. “Well, you don’t look at all ill” I’m cheerfully told. “Thank you.” I wish I did. I wish I did look ill, because then people might believe me. I wish I looked as ill as I am, because then people would realise what I’m going through. G chuckles, and tells me I look like I’m having an epic hangover with my sunglasses on in a dark building like this. I laugh too: “I feel like I’m having an epic hangover!” I lie back down. Eventually the service starts.

The speaking is loud and the worship is louder, but I have earplugs in and it mutes it all to a level I can stand. My throat is on fire, so I worship in my head, mouthing the lyrics and focusing on them when I can. G holds my hand, but I can’t keep my arm at that angle for long, and I have to drop it down. I miss worship. The sermon is good; I take notes on my phone for when I forget it all later. I consider briefly what a delinquent I must look like, lying down in church wearing sunglasses and earplugs, tapping away on a mobile phone – it makes me laugh. Another reason for being upstairs. G goes down for communion, and brings me some back. During the last worship set, the prayer team are available in the balcony. I can’t get up to queue, so we wait until it’s died down and then grab whoever was closest to us. Actually, maybe that’s the best reason for making the huge climb – if I’m downstairs I can’t get to them!

The service ends but the noise doesn’t, and I keep my plugs firmly in place as we retrace our epic journey back to ground level. I manage to catch up with people while we wait for Stephen to bring the car round, sitting on the front step and enjoying the sunshine again. My head feels fluey and my bones are filled with lead, but I don’t want to go home yet! The adrenaline is pumping but I know my energy reserves are depleting fast, so back in the car and back to the flat.

As I shuffle back through the door, I can feel the tears welling up. It could be another month before I’m outside again. I try to ignore the thought, and focus on the climb. The stairs are worse on the way back up, far worse. G goes ahead and lets Stephen in, while I struggle up the first flight. By the time I’ve made it to the second flight, he’s back down to help me. Left… right. Left… right. Right… left. Before we reach the top, it feels like my heart suddenly stops: the eerie thumping and fluttering of heart palpitations. I’ve done too much. I still insist on sitting up and eating though; I’m enjoying the occasion.

G gets me back to the flat and prepares lunch, while Stephen lures the kitten out from under the sofa with a feather-on-a-stick. He pretends to be scared of the new intruder, but the new source of attention wins over: soon he’s bouncing around like a mad thing.

Half way through lunch,  the front of my head suddenly feels like it’s been bashed in by a hammer. The co-codamol is wearing off. I try to focus on the conversation, but the pain is spreading to my jaw, and the light coming through the windows is stabbing at my eyes even through my sunglasses. I excuse myself, and shuffle back to the bedroom, leaning on the walls. The bedroom is dark (blacked out windows). Bliss. I collapse into bed.

I wake up suddenly, desperate for the toilet. It’s half four. I stumble there, stumble back, and again I’m asleep.

I wake up again; need the toilet again. Seven o’clock. My legs are starting to shake when I put my weight on them, so I have to use the walking stick. It’s getting worse each time I wake up. G brings me some dinner in bed. I can barely bring the food to my mouth, my arms ache so much and I’m so exhausted. I feel like I fall back into a doze, half aware of the noises around me, trying to shut them all out, but the next thing I know it’s eleven pm and G’s coming to bed as well.

“lovvG”

“I love you too, go back to sleep”

G has his arm around me, and the cat is curled up on my pillow. I love family nap time <3

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3 responses to “Sunday

  1. Hi Lydia,

    Thank you so much for sharing your experiences and for helping people to understand more about ME. I have been at church (Re-Hope) for a while and have joined your read-through group before. (last summer I think!) I have Rheumatoid Arthritis and while it’s a different disease there have been times in my life where I have felt very similar to you. I know you’ve asked people to come visit before, but not knowing you that well, I thought it might be a bit weird. But I am also more than happy to pop around sometime if you are feeling up to it? I can imagine you are feeling pretty isolated and possibly like you might be like the only person in this situation. You’re not. I will pray for you, but would love to come keep you company & if you have a cat, then I’m there!! :)

    Facebook me back. (Gillian M Smith)

    Gillian

    • I remember you talking about the arthritis, it sounded horrible :( Our groups all merged up over summer right? I think a problem with people visiting has been that nobody knows me well enough to think it not weird; one of the pitfalls of being too tired to socialise properly! Thank you sooo much, I will drop you a facebook friendship :)

  2. Pingback: Living with ME | a Path Through the Valley