Bored

I’ve been hearing the complaint ‘I’m bored‘ quite a bit recently. I suspect it’s because I’m still relatively new to this parenting business; give me a couple of years and I’ll be, well, bored of hearing it and I’ll stop noticing it. I haven’t found a skilful retort to it yet, and I doubt I ever will.

The truth is that I spend much of my life bored. Not in terms of needing entertainment or occupation; between my job, family life, TV, movies, books, dogs and video games there’s plenty of stuff for me to do.

No. I’m bored of something that’s always there.

I’m 42 and I’ve been in pain for over 16 years. Illness. Pain. Sickness. I’m bored of it. I’m bored of the audible crunch of bones in my neck and spine when I turn my head on a cold morning; I’m bored of medication every day; I’m bored of explaining my condition; I’m bored of having to spend so much money fighting it; I’m bored of doctor’s appointments; I’m bored of not being able to play football; I’m bored of being sore after walking, standing, sitting or lying for more than an hour (all told I do a lot of walking, standing, sitting or lying for more than an hour); I’m bored of answering the question ‘does your illness define you?’, a question only ever asked by people with no chronic illness themselves; I’m bored of it affecting my sex ‘life’; I’m bored of not a single Christian ever having had a ‘word of knowledge’ about Ankylosing Spondylitis because they’ve probably never heard of it and certainly can’t spell it (and yes, that includes people from Bethel as well as your personal favourite healing ministry); I’m bored of well-meaning but ignorant advice; I’m bored of the guilt at not doing the physio I should be doing; I’m bored of doing the physio I should be doing; I’m bored of missing out; I’m bored of being tired just because I’m ill; I’m bored of my lowered immune system; I’m bored of people telling me about their ‘bad back’ because they think they relate; I’m bored of people thinking they can’t talk to me about their stuff if they know I’m sore; I’m bored of people asking ‘how are you’ and not really wanting the answer; I’m bored of the voiced and unvoiced judgements … if only you’d do xxx then you’d be better, you are a bit overweight, after all; I’m bored of having to opt out of moving chairs and tables because it will hurt and worrying about what people think of me for opting out; I’m bored of listening to that worry and helping move the table and then being in pain for a day; I’m bored of choosing between playing with the kids or being in pain later.

And here’s a truth. Others are bored of all that too. It’s part of the curse of chronic illness. Sometimes I wish I had an acute illness. Cancer, or something else that has an end point for better or worse. When people first find out about your chronic illness, they’re sometimes interested. They ask questions which you answer wearily because they show interest and you think they might want to help or ‘walk with you’. And they do, for a while. They pray with and for you. Maybe they help with something that you can’t do. But then, mostly, often, they get bored. They never say it, of course; they may not even be aware of it themselves. But at some point it becomes clear that this disease isn’t going away, that it isn’t my fault, that the prayers aren’t going to be answered like that. One time a couple of people offered to sit and pray with me regularly for my AS. I was thrilled. We met twice. So people back off; they don’t walk with me and my wife. They check in every now on. But they haven’t got time for me and my illness. A small handful have. But people back off. They get bored of my need, my story, my pain. People get bored just walking with me, with no apparent end to the journey.

I’m bored of that. And deeply, pathetically, tearfully, grateful for those who do just keep walking at my pace. Which is slow.

Oh so fucking slow.

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4 thoughts on “Bored

  1. Hi David

    I am a friend of Sandra McNicol attending the same church in Glasgow as she does!

    I suffer from AS and have done for 45 years.

    Much of what you say resonates with me and I can well understand your frustration in dealing with others who don’t, or can’t, get a grasp of what daily life is like with such a debilitating chronic condition!

    I truly wish I could say something to tell you life will become much easier down the road, but I cannot.

    I had many, many years of overdoing things and paying the consequences for it and although you feel good about yourself for doing it, payback is not a nice experience.

    I do not know anything about your own experiences with Physicians but do you have a good Rheumatologist you trust?

    From around Nov 2014 until Oct 2015 I had a ‘flare-up’ of my AS resulting in much pain and stiffness leading to being very soar almost constantly! As you said in your blog it is not very pleasant!

    My Consultant Rheumatologist decided it was time to put me on to a (relatively) new treatment for AS in the form of an Anti-TNF drug called Adalimumab (Humira). The treatment is taken by fortnightly injection. I can honestly say it started to work on me within an hour of taking it!

    I have no idea if this is available to you and what the cost might be but I am saying there are sometimes new treatments available that might help.

    That is of course assuming you are happy to take medication.

    At the end of the day you need to do what is best for you and not worry about what other people might think or say regarding what you can and cannot do – lifting chairs etc.

    As far as prayer for healing is concerned, I was very eager to get prayer for my healing when I became a Christian in 1991 but when healing wasn’t forthcoming I began to sense God was telling me he would use me the watch I was and I got involved in, of all things, Youth Work!

    That whole experience for me opened up many opportunities and I am thankful to God for that.

    Take care

    Graeme

    • Hi Graeme

      Yes, Sandra mentioned you’d be getting in touch. I really appreciate your thoughts. I have an excellent rheumatologist here in Cape Town. I’ve actually recently changed the anti-TNF I’m on from Enbrel to Simponi and then to Humira (a month ago). It’s all been quite complicated. I’d been on Enbrel for a long time, and it was fine. A couple of years I seemed to develop a resistance to it, so I was moved to Simponi. That wasn’t really working – the disease seems to be progressing a bit – hence the switch to Humira. Because Humira has a significant impact on the immune system, I’ve had to withdraw from the ministry my church has amongst the homeless population because of the risk of exposure to TB – a big problem in Cape Town. Since I started on the Humira I’ve been feeling quite run down, as if I’m on the cusp of ‘flu the whole time; and with no major improvement – yet. I see my rheumatologist next week, so we’ll see what she says.
      Blessings to you – and thanks for getting in touch.
      Dave

  2. Thank you, David! Thank you for your honesty, Thank you for the way you allow God to bless people through your pain Thank you for the drawings you create in my mind when you write Thank you for sharing your tears, your frustration, your heart ache, your pain Thank you for being real.

    Bless you

    Quentin Miller QMA Architects 083 330 3492 On 07 Jun 2016 2:41 PM, “The Blog of David Meldrum” wrote:

    > davidmeldrum posted: “I’ve been hearing the complaint ‘I’m bored’ quite a > bit recently. I suspect it’s because I’m still relatively new to this > parenting business; give me a couple of years and I’ll be, well, bored of > hearing it and I’ll stop noticing it. I haven’t found a ski” >

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