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.