I realized late-afternoon that we’re running low on milk again. Two pints used to be enough to get us through a week of milk-in-tea for me and milk-over-cereal for Chris, but now I have cereal in the morning too, I have milk and cookies, a cup of Horlicks mid-evening and a glass of milk at bedtime. We haven’t adjusted to the pregnancy quirk of consuming that much whatsoever and as a result, keep running out. I have sent Chris to the co-op, a few hundred metres from the back door, to fetch. I ask five times if he’s okay to do this, then offer twice to tag along in the wheelchair and I worry whilst he’s out, watch the clock to make sure he doesn’t take too long, realise that I’m filled with relief when I hear the back door open.
The headaches have been horrendous and the medication side-effects have been very bothersome, but it’s the invisible added effects that creates the biggest hurdles. Not sleeping, not being able to concentrate, leave the house much, drive, bend over or lie down, the resulting zombie-esque fatigue, the building stress of living with no regular paycheck and not knowing when work will be an option again. None of these are particularly visible things and for limited time periods, it’s easy to push through it all and appear at least as if you’re coping reasonably well. I’m not sure if people who haven’t suffered from severe neurological pain see what I see.
It is the frustration that really gets to me. I want to help, but there’s nothing I can do. I watch him try to work a little from home and struggle to get the smallest things done; feel guilty for spending time resting, sleeping or playing simplistic games that aren’t as tiring and require little effort and concentration. It reminds me that we live in a society that raises us to equate our self value to having a job and how much we earn from it. Take that away and I’m reminded of a popular Mark Haddon quote, “For me, disability is a way of getting some extremity, some kind of very difficult situation, that throws an interesting light on people.”
We’ve been here before, when Chris broke his leg the first time and spent almost a year at home recovering and when he broke his knee shortly after, spending another few months unable to work. Those were horrible months when we couldn’t pay the rent, couldn’t turn on the heating during the winter, I was too sick to work, but took a part-time job anyway that had me in pain and tears most of the day every day. We took out three loans to pay the basic bills which we’re still in the process of paying off and with the first pay check he made again, we took out decent health and disability insurance too.
This time round, there’s no end in sight, weird neurological headaches “under investigation” may or may not be resolved in the end and chance of it resolving quickly are slim to none. We’re hoping for the best, planning for the worst and actually dealing with it pretty well. My DLA is paying the fee for the sheltered accommodation we live in and the mobility component for a car that I can drive. There are worries and with a baby on the way, more so than in the past, but life has gotten better with time. I know more, have access to more resources and a healthier mindset. And Chris is learning, I hope, that sometimes, sitting down and playing Torchlight or Defense Grid is making good use of his time.