A weird thing happened at church…

A brief but strange happening –

During the sermon at church, I felt increasingly physically uncomfortable, and by the end my legs and back hurt a bit. When the band began to sing the last hymn, my right leg started going into spasms, as is fairly usual when I’m tired and in a noisy place. But by the time the service ended, my leg had frozen up so much that I couldn’t really move it at all. The muscles were really stiff, and I felt like if I’d been able to stand on it, it wouldn’t have supported my weight. I couldn’t stand up from my seat.

I used my massage ball to try to get some movement back into my leg, but it was too  painful and frozen. Nobody was nearby to lift me onto my crutches, and I tried to attract attention subtly, but the student worker at the front just thought I was waving hello. I was mentally thinking how I would get home with a non-moving leg, and who was strong enough to lift me.

Then a lady came up, who’d been in the band singing. She said “I hope this doesn’t seem odd, but I saw you from the stage and I think God’s saying I’m meant to pray for you.” We introduced ourselves, she sat and prayed for me, putting her hand on my shoulder.

And then without it hurting, the feeling came back into my leg, it twitched a lot, then calmed down. It felt tingly, but not painful. We stopped praying, and I found that I could stand up, and it would take my weight again.

How bizarre.

 

How do you ignore those things? Part 2

I wrote before about how I ignore, or cope with, the day-to-day pain and isolation of illness. But there’s another big casualty of my illness – my career. I’m sorry if you’re reading this and you’ve had to stop work entirely due to illness, or if you can’t find suitable work. I don’t intend to sound ungrateful for the stamina and luck that I do have, which mean I’m able to continue working. I love going to work.

But I haven’t got the career thing sussed yet. It feels like the longer my illness goes on, the bigger the gap between me and peers my own age. But there are a few things that I’m conscious of, which have helped.

Within the office

Knowing my limits

I’m fortunate enough to have a reasonably flexible job, which can fit around my needs for rest. Because mornings are bad in terms of symptoms, and peak travel is prohibitively expensive and more dangerous, it’s understood that my day won’t start before 10.45am. The longest I can manage is around 6 hours in the office, so that means I’m never tempted to go over, because by 5pm a lot of people are packing up to go home. I know I need to stop and have lunch away from my desk. So I do that.

Getting everything I’m legally entitled to, and standing up for my rights

Access to Work provided me with an OT assessment, then a whole load of equipment and training, which mean that my desk is as comfortable as it can be. The step-change between coming home with agonising joint pain and headaches, to leaving work feeling tired but not aching, was amazing. If your furniture hurts, get your employer to change it.

With training courses, I’ve had to fight for them not to assume a 9-5 day is possible for me. The extra brain needed for studying makes them particularly exhausting, so I’ve pushed hard to get the most important sessions between 11 and 3. HR totally back me. Still, a lot of team and whole-office meetings start earlier than I can safely get to work. I’ll change the culture gradually.

Ignoring the “work martyrs”

Every office has them, the person who gets in early, stays late, and eats lunch while in a meeting. The ones who try and guilt-trip parents for leaving in time for the school run, who insinuate that part-timers are “lightweights”, but seemingly have enough time in the day to gossip and disrupt everyone else. They’re obvious by comments like “I was up til 10pm working on this report”, rather than “I’ve worked hard to make this report really good”. I do my job well, in the hours I’m paid to, and I’m happy with that.

Letting it go

To misquote the song, “the correct use of grammar never bothered me anyway”. I do a lot of comms for our team, and subedit important reports. If I were full-time, it would bother me that there are pieces of work leaving our department that would have been better if I’d had a hand in them. But I can’t do everything. It’s about picking which things it’s worth expending energy over getting perfect, and which are “good enough”.

Outside the day-to-day

Professional development is pretty tricky if it relies on investment outside of working hours. For me, they’re broadly accounted for – it takes all the strength I’ve got to keep on top of essentials, like laundry, washing most days, eating, rehab exercises and rest. I can do 16 hours in the office, and maybe another one outside of it if I’m particularly healthy that week. So:

Conferences and networking

Full day-conferences are out of the question for me, given the concentration required, and the effort of travelling there and back. If one was particularly good, I might make an exception, but it’d take out 1-2 days each side of it with rest and recovery. So the ways round it are;

  • attending, but only for a bit – if there’s actually one session I care about, I’ll just go to that and come home.
  • attending, but skipping seminars to save concentrating on them – at a recent women’s day I did the morning seminars, but spent the afternoon painting and chatting, and skived.
  • not attending, but catching up afterwards – most people do podcasts, or if not, a coffee with somebody who went is less stressful than a crowd.
  • attending remotely via the internet – asking for a live-stream in advance, and following on twitter makes it almost as good.

Reading the background material

All the think tanks, and any organisation worth listening to, will be publishing papers at an alarming rate. I just make sure I select the best ones to invest in reading, then have one with me at all times. I never know when my brain will have a brief moment of lucidity and I can cram in another few chapters. Then everybody’s on social media, so it’s easy to ask questions. This is really easy to do even from in bed, and sometimes they’re based on a lecture series, so you don’t even need to strain yourself doing reading. It helps me feel connected to my sector, even if I’m hardly ever there.

Being realistic about new jobs

Previously, I’ve upped sticks and moved where the work is. I’m single, I have nothing to hold me here. But now my priorities revolve around having a landlady who will cook for me, a GP who knows my case, a hospital with a good consultant. Friends are ten minutes away, and the area is quiet and calm. I’m here to stay. So a new job would have to be reasonably commutable from my home, and as I mentioned at first, flexible and part-time. There’s a minimum salary I’d need before 40% of it was enough to live off.

In addition, it’s really helped that my current boss has a family member with a similar illness, and some people in my team really “get it”. My work is interesting, and I’m trusted just to get on with it – there’s wiggle room for good days and bad days. Until recently, nobody had been patronising, and friends at work do seem to care about looking out for me. It helps that I was there for a year before I got ill, so the colleagues who’ve been around longer can remember how good I was then.

But it’s still a bit depressing

Going part-time means a lower salary, so it’s harder to socialise generously with colleagues. I’m living off really very little income, and have to budget for things like wheelchairs, rather than holidays. Being around so many able-bodied people is a bit of a kick in the teeth, particularly when they ask, blithely, “what will you get up to on your day off”, or “how was your weekend”. Watching them get married, have hobbies, talk about kids growing up, overtake me and take on new responsibilities in the office, is all difficult when those things aren’t happening to me.

I’d love to take on more responsibility, to be challenged at work, and to have more expected of me. When I first got ill, my boss, bless him, said “yes, this job is beneath you, but it’s only temporary, because you’ll get better”. We’re having to adjust that expectation, and I can see it frustrates him equally – he’d love it if I could work full-time, because I’m good at what I do! I’d also love to see any jobs advertised as part-time which looked like they’d stretch me too, there’s not a lot out there. But it’s hard to take on more responsibility when my ability fluctuates so much week-to-week. So for now, things are looking stagnant, and I’m waiting to work out how to make that ambitious next step while living within the constraints of chronic illness.

How do you ignore these things?

1. A well-timed day off 2. Marmite 3. Electric blanket
That last tweet may lead you, rightly, to surmise that my rest day was spent asleep in a warmed bed, waking only for marmite sandwiches.

@eah39 but you still found 3 good things 🙂 hope tomorrow is better

Today was pretty good, if you ignore leg pain, missing an interesting talk on social enterprise, and being to drowsy to skype!
@eah39 and how able are you to ignore those things?

A brief chat on twitter, but it got me thinking: how am I able to ignore those things? Yesterday, and again today, there were apsects of my illness which caused individual pain and discomfort, were detrimental to my career, and isolated me socially. And all because I tried to have two “quasi-normal” days in a row.

I’ve not got it totally worked out yet, but there are a few coping mechanisms which seem to help a bit.

1. Acknowledging pain for what it is.

My mum doesn’t believe I’m ill. Or rather, she sees that I have to rest, but it hasn’t clicked that it also hurts, it’s also isolating, and it’s also setting me back, compared to my peers. I’m slowly learning that when she, or other people, try to minimise or normalise my experience, that I have to speak up, or things won’t improve. So when I said “I’ve been out all day, and now I’m dangerously tired”, she’ll said “well of course, anyone would be tired”. I have to make her realise that “tired” means I’ll be unable to lift my arms to bring food to my mouth, and will have to prop my plate on my pillow and eat very slowly, face-to-plate, avoiding anything that takes too much chewing. It’s not sitting on the sofa watching telly.

It means a lot to be believed, because when I am that tired, the niggling feeling that everyone feels this way and I’m just too pathetic or lazy to cope is something that makes the indignity of it harder to bear.

2. Good, guilt-free rest.

It’s taken quite a while to be able to rest without feeling guilty that everybody else is hard at work. But when I set my mind to rest well, seeing it as my job for that day, not only is the rest better, but it’s more likely to be creative. I’ll find myself thinking of ways I can be kind to other people, or pray for others, or thinking through ways to improve situations at work or in groups I’m part of.

3. Distractions.

Radio shows, bad soaps, twitter, facebook, anything to dull my mind if it’s racing in a bad direction.

4. Productivity.

This one may seem counter-intuitive. How can I be productive, if I’m too sick to get out of bed, or go to work? Doing anything that has a visible outcome is something that keeps me feeling a sense of achievement, so that I can tell one day from another. So making a birthday card, painting my nails, balling up wool, drawing, anything that has an output. They don’t cost much energy for the amount of self-esteem they give me.

5. Companionship.

Particularly on twitter, there are lots of other people with similar lifestyles. Some are more sick, some are less sick. All of us have experienced loss, pain, isolation, and are continuing to live. It’s not good to be alone.

6. Avoiding people who drain me

If, during the few days I am out of bed, I spend time with people whose attitude makes me feel bad about myself, who are critical, who lack attention, however otherwise-lovely they are, I am conscious of avoiding them. Their comments echo back to me on days I’m alone, and wear away at my motivation. Same goes for twitter, social media etc – if people tire me, I stop contact.

7. Thankfulness

The song 10,000 reasons has a lot to answer for. But every day, I give thanks for at least three things. Often they’re pretty small, and are brief windows of relief in a pain-filled day. But I give thanks, because it’s a way of forcing my memory to keep hold of the good things, and lose the bad.

This seems to help with the pain, and the isolation. The bigger issue of the effect on my career and finances is one for another post, as it warrants a different type of response.

 

Places to go, people to see

My very gradual recovery has, thankfully, got to a stage where my fatigue doesn’t force me to be housebound every other day. Woop woop! On some of those “low energy days” I might still be able to be active a bit. But my leg muscles are still not strong enough to support walking about every day, so my physio suggested I got a wheelchair to use sometimes.

Because people often see wheelchair use as a negative thing, a sign of failing, or giving up, I thought I’d write briefly the places I’m looking forward to going, that at the moment it’s difficult or impossible to do on crutches. In some cases it’s stamina that limits me, a few it’s speed, and some it’s not having enough spare hands while using crutches. I sometimes can only stand for a few seconds before my legs start to shake. On a few occasions I’d ask others to push me, but in most cases I’d self-propel. A wheelchair would give me the independence for all of these places:

Places to go

  • The library
  • Weddings and days out that are very long
  • Buffets and refreshments tables (though saying “surprise me, I’ll be sitting over there” to the next  person in the queue has been fun)
  • Shopping – TKMaxx in Kingston has an accessible changing room, Foyles bookstore has just had lifts put in
  • The Park, when my legs are sore. I am bored of the sight of my bedroom walls!
  • Social tennis (apparently) and maybe I could dance again
  • Spontaneous social trips in big groups – so I can keep up with a crowd wandering rather than getting left behind
  • Museums (but I might take a periscope for the high displays)
  • Church, which yes, has steps, but I could drink tea better in a chair than sitting on the floor on my own
  • Momentum! And other camping trips or holidays where energy conservation is essential over a few days

People to see

Today I haven’t seen anybody, and I’ve had two phone conversations, and in both the person on the other end was in a hospital. Anything is an improvement. And people are so keen to see me, but it’s clear that if I reject them for much longer, the invitations will begin to dry up. So a wheelchair, combined with the right support, would open up not only immediate contact with existing friends – birthdays, weddings, holidays – but also give me the freedom to meet new people, and replenish circles of friends which have been depleted. This happens very naturally, by people getting married and moving out of London, but also as a result of “dropping” some people whose attitude to my illness was making me feel awful.

The effects on my long-term mental health of any social contact will be many, as well as being able to keep my mind active by modest trips to museums or the library. At the moment, I’ve still seen people at weekends – a coffee on Saturday and church on Sunday – but my health has taken such a blow by doing so that it’s unsustainable. Even one day a week where I could see people without damaging my health would be a great improvement.

I’ll write about the negative aspects later, but this overwhelming argument in favour of part-time wheelchair use frames the problems within the hopes of a much-improved quality of life.

The body of Christ is disabled

The body of Christ is disabled? Well, obviously. If you had massive holes in your hands and feet, you’d need to make a few changes. That point when you’re brushing your teeth and you cup the water in your hands to slurp it and rinse your mouth out? Jesus couldn’t do that. Pebbly beach barefoot? Asking for trouble.

It seems facetious. But if we were chilling on a beach with the risen Jesus, and it got to that awkward “suncream on the back” moment, would we flinch from the scarring? Would we feel ashamed of his broken body, and ask him to cover up the scourge marks to look more normal? To wear socks and shoes?

Of course not. Partly because everyone would totally know who he was already and be cool with it, like when Stephen Hawking rocked up to an orchestral concert when I was a student, but mostly because those scars are so much a part of his identity, why would we want him any other way? It just wouldn’t be him.

It just wouldn’t be me

Regular readers of my blog will know it’s taken a long time for me to accept M.E. as part of my identity. But as I’ve become more comfortable around it, so have others – realising how much more time I sacrifice for a night in the pub, making adaptations on my behalf, and beginning to joke about it. A handful of friends are beginning to accept M.E. as part of my identity too.

But my identity is also rooted firmly in my faith, and in being part of the church. The church isn’t very literate or aware when it comes to disability. Some individuals are, but many aren’t, and culturally, we’re often not very good. I could moan, but that’s boring to read, so I thought I’d share my top six good things that the church has been up to:

Six top attitudes I’ve encountered

1. The phrase “if it is comfortable for you to do so”

There’s a bit in the Communion service called the Eucharistic Prayer. It’s really long. It’s good, but honestly, most people use the shortest version possible. Recently I went to a really high church who liked the long version, where the service sheet, at the start of this bit, said “Please remain standing if it is comfortable for you to do so”. A sort of “we’ll mostly be doing this thing, but if you don’t want to, that’s honestly fine, do what feels right for you”. Totally non-judgemental, and importantly, a heads-up to the able-bodied that not everyone in the room finds standing up easy, so don’t look judgementally at them.

2. The welcome team that sticks around

I’m really sensitive to loud noises. In my usual young adult congregation, they love a half-hour worship set at the start. The band is awesome. I love it. However, I’ve worked out that I can take only about two or three songs before my legs start twitching and I’m in too much pain to endure the rest of the service. So I turn up really late, about 2-3 songs before the sermon. If there’s a welcomer still on the door then, it’s really cool. Particularly if they can help pour me some juice before I go in.

Yes, I admit, I could turn up at the beginning, leave after two songs, and sit around outside while everyone else has fun singing, but that sucks. As does trying to sing with earplugs in. And not being there at the point everyone else goes in means I can do the stairs in my own time, rather than with everybody watching and earnestly trying to help.

3. The “how would you like us to do this” question

Back at the high church, they’re high church, so they love having all the steps. I love them too, it’s great for getting a sense of how majestic and above everything God is. Helps me know he’s totally in control, he knows what he’s doing. However, steps are sometimes a bit tricky on crutches. In a traditional Anglican service (to which I was late, pastry-based distraction), there’s a bit called the Peace where we all go round and shake hands/hug/kiss/high-five in a friendly and sometimes uncomfortably over-friendly way. It’s a bit of a break-out in the middle of an otherwise pew-bound service.

At this point, the churchwarden, who I’d met once before, came up to me, and quietly asked me how I wanted to go about taking communion. For able-bodied people it would involve walking 20m down an aisle in front of people, climbing 5 steps without a handrail, standing for up to a minute, kneeling on a stone step just off floor-height, eating, then drinking from a heavy cup, standing (with a rail but only in some places), then going back to your seat via steps and aisle. A non-trivial exercise. She said they could bring the bread and wine to me, or help me up the stairs, or I could stand, or kneel, or whatever – reasonable options were suggested, and I picked one. So I knew it would be non-awkward before the communion bit started.

This is totally essential in good time – the prayers leading up to taking communion aren’t a time to be worrying about if you’ll actually be able to take it, and to be able to focus on the sacrament itself during this time was a rare and thrilling privilege.

4. The wholehearted flaily dancer

I’m definitely a kinesthetic learner. When I worship, I process as much externally, through my body, as I do by thinking about stuff. I’m not alone in this – in the Bible they’re always lying face down, dancing around without inhibition, being submissive or powerful or open or repentant in their stance – it’s a whole-body experience. High churches are good at this. Low churches are good at this. Middling churches are very English and reserved and not so good at this. I prefer the ends of the spectrum, and I don’t mind how weird I look.

However, now it hurts to move, to hold my arms up, to dance (!), to stand, to kneel, to open my eyes in a well-lit room, I can’t worship in the way that feels natural. Cue the Body of Christ.

The bible says that in the church we’re all different parts of the same body, and we all work best when we work together. There’s a bloke in our church who I haven’t met yet, but who sits vaguely in front of where I do (there’s a sweet spot where the music isn’t too loud but there aren’t too many steps either, next to an aisle so I can see the words when everyone stands up), who I think must have the same learning/worshipping style. He dances (it’s not cool, but it is genuine), he waves his arms in the air when everyone else looks normal, he sits and cries, he makes himself look big, or small – physically, he responds to God with the freedom that I would exercise if my body worked.

Although I haven’t spoken to him, or any of the other more physically-expressive worshippers in the church (that would be totally awkward, how do you start that conversation?), I find it thoroughly liberating to be worshipping in the same space as them all. While I sit motionless, wearing sunglasses for the light and earplugs for the sound, occasionally twitching in pain, I know that the offering of wholehearted, whole-bodied worship that I’d love to bring to God every week has been taken care of. It’s like when someone else picks up your bill at a restaurant. Through corporate worship, the physical limitations of my disability are temporarily lifted.

5. The podcast and the twitter account

If I’m too sick to go to church, or if during the week I’ve been too sick to leave the house, I can listen to talks I’ve missed/wasn’t able to concentrate through. And because all the speakers are on twitter, I can ask them questions about it there and then, midweek, and discuss online what I didn’t have the mental capacity to talk about after the service. I can also tell them I liked it (if I did), which is good. Preachers don’t always get encouraged midweek.

6. The ardent pray-ers

I don’t go up for healing prayer. Too much angst, I’ve discussed it before. But bless them, whenever I go up about other things, they have to slip in a question about my crutches, and pray for healing anyway. Partly it’s bloody offensive. Partly it’s kindly meant. Partly it’s telling about their fear of losing their own health, and how much they fear it might shake them. But people I barely know are willing to personally ask their God for things, on my behalf.

Pam Webster, one of my favourite housebound theologians, defined healing as

accepting all that we are, and all that we will never be, incorporating that into ‘me’ – and being able to live with it.”

I can agree with that. And it blesses me that these women love to pray for me, and with me, for healing.

Over to you…

  • What is it about your church that helps you or others overcome the limitations of your disability?
  • What elements of the church service you go to couldn’t you do without?
  • Which people in your church encourage you by their freedom in worship? Have you told them?
  • How does your particular tradition impose barriers on people, or remove them?

I’m interested to hear your story.

This is ME – M.E. Awareness Day 2014

Eryngium Bourgatii

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS).

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I’m taking part in an international blog, where lots of us with M.E. answer the same basic questions. I’ve made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! :-)

I’m making the assumption that you already know the symptoms, but if not, vaguely this:

symptoms

What is your name & how long have you had ME / CFS?

Elizabeth, I’ve had ME / CFS for around two years, though it’s been noticeable to other people for about eighteen months.

Where do you live? (Country, State, City – however detailed you want)

Hampton, a leafy village on the edge of London, England.

Age (if you’re willing to share)

27

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

  1. I play the double bass rather well. Most of my time at uni was spent lugging Guiseppe, my gorgeous French walnut double bass, around to orchestral rehearsals. I’ve played in tiny churches and massive concert halls. I’ve even played on the back of a truck. My favourite things are symphonies by Brahms, Bruckner, Sibelius and Shostakovich. Sibelius 5 is my all-time favourite piece of music, one year at the Proms I listened to the whole thing standing on tiptoes to see more.
  2. I could somersault and used to trampoline regularly. I’ve worn sparkly leotards and have a selection of interesting socks.
  3. My favourite TV programme is Holby City. Not because of its quality, per se, but because of its reliability. From 2004-2011 I moved house 18 times (I think), and in every new home, on Tuesdays it was reliably there, when nothing else felt like home. On Wednesdays, as an intern, I had 90 minutes off in the middle of the day to make up for late-night Alpha courses, and I’d use 60 of them catching up with Holby. Doctors going out with nurses, people being saved from the brink of heart failure, and the odd train wreck at the end of the series to kill off the expensive actress who’s going to ITV. What’s not to love!?
  4. I live with a semi-retired couple, in a house full of old-people stuff. We’ve got six remote controls, mismatched crockery, a selection of wicker conservatory furniture and you have to put a mat under anything that’s going on the table. Not cool. But I love it. Think of having an extra set of parents, but who aren’t uniquely annoying to you because they remind you of that time you dropped the marmalade when you were six.
  5. I hate carnations, the bought-from-a-garage apology flower, and my favourite flower is eryngium bourgatii (sea holly). It’s just so spiky and blue! I used to design gardens for a living, so I know Latin names but not common ones for a lot of plants. I have feelings about all of them, not all positive.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

  1. I spend at least a day a week (usually two) completely housebound. Most of that time is spent in bed, with normally two bathroom trips and two trips downstairs (one to fetch breakfast and lunch, one for dinner).
  2. The most obviously disabled part of my day is the train journey home, where as the adrenalin of the day wears off, my legs, back and hands go into random, painful spasms. Everyone else in the carriage looks at me like a weirdo, and judges the bloke who was reluctant to give up the priority seat.
  3. I can actually run still. Although I use crutches on a day-to-day basis, running is technically a possibility. However, it’s excruciatingly painful, I can do about 40m before my legs give way, and my chest will hurt as if I’m under an elephant for about 15 minutes afterwards. Then I regret it all day, and the next day too, and have worse joint pain for a week. I just miss it so much that occasionally it’s worth the fall-out. When I started using crutches, a colleague tried to buy me an inflatable parrot, to complete the pirate look.
  4. I have a bus pass, like a pensioner, but unlike a pensioner it’s subject to a mobility assessment. Since getting ill, the best part of my commute, the 15 minutes walk over Vauxhall Bridge, is completely impossible for me if I want to save enough energy for working. So I’m almost always getting buses for one or two stops, because the walk is too much and the tube has staircases. Staircases are my nemesis, I’ll basically a first generation Dalek. A colleague once called me Davros.
  5. Energy is energy is energy. Physical, emotional and mental tasks all draw power from the same battery, which doesn’t recharge reliably. So if a conversation is tending towards the deep-and-meaningful, I’ll sometimes have to ask my friend or family member to put it on hold until I’ve got home safely, rather than risk wasting too much “moving about energy” on feeling things and getting stuck far from home. When I’m really really exhausted and can barely move, but for some reason I’m not at home in bed, there are a few friends I’ll trust to just make all emotional and mental decisions for me while I “power down”.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

When you see me in person, that time is so unbelievably precious to me, that I want you to value it too. This illness really hurts. Really really hurts. All the time, and every day. Very considerately, people ask if I’m feeling better, when they’d seen me taking pills or I’d cancelled our last shared activity due to illness. And I just want to slap them, if it wouldn’t hurt my hand so much. No, I’m not feeling better, I’m never feeling better, and you looking disappointed isn’t going to do anything to change the situation. You only see me today because yesterday and tomorrow I didn’t and won’t see anybody, just to save up the strength to come and see you. And seeing as I have, why are you asking me to tell you about pain, and pills, and to give more precious time to the disease? Why aren’t we living? Why aren’t we holding onto each other’s every word like it’s the last thing we’ll say to anybody in days? Why are we so unnecessarily mean?

What is the most frustrating aspect for you of living with ME / CFS?

Having to act like a weirdo. I become that person who’s in the way on public transport, who stops irrationally in the street, or who sits down when everyone else is standing up. I’m the person who used to irritate me when I was sprinting to change tube, who’d mess up my lovely neat church services by needing things in large print or wanting the handrail putting out. And I see people like me-five-years-ago getting annoyed and it shows up how driven and self-important and inflexible I was when I was younger. Ouch.

Anything else you’d like to say before finishing?

What you can do to help is make sure that anywhere you go out to is accessible to me. For example, check that your local pub has an accessible loo, and if it does, it isn’t rendered inaccessible by being full of 12 bags of rubbish, a drum kit, the “celebrate Christmas with us” sign in June, or any other rubbish. A pub trip where you can’t even drink is not worth getting out of bed for. And losing a whole crowd of regulars is worth the pub changing their storage habits for. Don’t sit in priority seats if you don’t need them. Don’t use lifts you don’t need, but do complain if they aren’t working. It takes time, but if each able-bodied person made even one “your access isn’t accessible” complaint each year, or did something to initiate change, then those of us without much energy could use it doing things and going places, rather than fighting to be allowed in.

Examples of “accessibility” have included “due to flooding, the train you’re on will be met by a replacement bus service at a non-accessible station. Please crawl upstairs in the rain.” Luckily I spotted the problem at an earlier station, but the complaint letter took 4 months to get a barely-comprehensible and indifferent reply. If everyone on the train had objected, they’d have noticed and changed something.

Oh, and send cake. Cake makes it all better. And kittens. And give me hugs if you see me, but not overenthusiastic ones, as I’m a bit fragile.

Contact details (if you want to give them) – blog, Twitter, FB etc

This is my blog – https://montaguemouse.wordpress.com/

Twitter is @eah39. Twitter is the easiest way to contact me, because it requires very little energy to reply. I’m happy to answer any questions, but might be slow as it takes days to save up enough spare time for them.

That’s a shame

At church on Sunday, the preacher talked about how the cross frees us from shame. “I’ve heard this all before”, I thought, issues surrounding unconfessed sin, residual guilt, etc etc are long gone, I’m used to keeping short accounts with God. Then he pulled up a long list of thing which people are ashamed of – family circumstances, debt, addiction, work status, body image – and on the list was physical illness. Which made a little lightbulb go on in my head. (It’s fine, I was wearing my sunglasses.)

I go to the sort of churches where if you sneeze they lay on hands. To walk in with crutches is to risk being divebombed by prophecies that I’m going to be cured, and in-depth scrutiny about why I’m ill and when I’m going to be better. Yes, I have, occasionally, seen miraculous healing happen, and believe that God hears and answers prayer. And yet I haven’t been up to ask people to pray that I would be healed.

“Shame; awkward, senseless shame, does as much towards preventing good acts & straightforward happiness as many of our vices do” C.S. Lewis

At that point during the sermon, I thought about the field where I’d always felt my calling lay – ministry to people on the margins, particularly those who are isolated with health problems. I’ve known since I was 20, but it’s never quite taken off yet.

I’d dearly love to not be ill, but I think at the moment I’m meant to be. It’s giving me resilience, making me rely on God, making me rely on others. It’s nasty. But through it I’m meeting so many disabled people who I wouldn’t otherwise have met. I’m understanding at a much deeper level how it feels to be marginalised and fearful. I can see that God is using this situation for good, to form me into the sort of person who can fulfil the calling he’s placed on my life.

Previously, I’ve sometimes acted as if I’m sorry to others that I’m ill, for the inconvenience it’s causing them. It’s easy, and very British, to be apologetic when taking someone’s seat on the bus. I’m grateful, of course, when they offer. If it’s a priority seat, I’m also thankful that they get up when I ask them. But I’ve decided not to be ashamed any more.

As with most of the thoughts that occur to me, which at first I think profound, I’ve realised it’s a simple truth. God loves me.

While people I meet will happily shake their heads at me and say “that’s a shame, and you so young, you should try to get better”, I’ve realised that God loves me. He has the authority to heal me, and if he’s choosing not to, then he’ll be doing something clever behind the scenes in that way he always does. God is happy to spend time with me, even if others can’t. God welcomes me into the church, even if church members don’t. God isn’t ashamed of me.

In today’s Chrism Mass, a lot was said, as it always is, about us being a body united, that we are each a part of. Yah boo sucks to the ableds, as they have to now be part of a body which in part has disabilities. But even if it sucks to be ill now, I’m confident that the parts of the body that have no honour now will receive special honour later. None of the formative, humiliating, dependent moments are lost by God. I’m proud (? I might not mean that word ?) that I can share in Christ’s sufferings if only for a short time. I’m assured that I’m fully accepted by God, and a full member of the church, and that I’m accepted. And I’m accepted as I am now, not just as I will be if and when I get well again.

Practically speaking, I am becoming confident that my presence in the room is more valuable than the slight inconvenience of getting me into the room, and the minor inconveniences caused by making an environment bearable for me can also be borne easily by other people. While thankful to them for making those adaptations, I’m not apologetic that they need to be made, because I’m not ashamed of my disabled self.

I’m having a go at living this out, and I’m not sure how this looks yet. But give me a few weeks and I’ll let you know.