This post describes my recent ‘minor ailments’ and raises ideas about highlighting sick on Sick as an issue for people with ME (pwme) and Spoonies (people with conditions involving budgeting energy).
I’m lying in bed with a blocked nose, diffusing essential oils I can’t smell. This is probably more common than not at this time of year. I don’t know many people who make it through winter escaping all viruses. Actually the ones who do are often people with ME (pwme) whose immune system is going hyper, a phase I’m clearly not in.
My current bout of minor ailment tribulations started at the beginning of December. Somehow I bit my mouth, something I don’t remember. This turned into a mouth ulcer, something I didn’t want to moan about because it seems so trivial. Next my face was swelling up and my skin was hotter over the mouth ulcer area, now something needed doing.
It was 10am when I realised this. To get an appointment at our GP surgery you usually have to phone at 8am on the dot (we listen out for the pips on the Today programme and then speed dial). So 10am, I thought there was no point bothering. My partner insisted on phoning for me and in a whirlwind I was in an appointment with the specialist minor ailment nurse by 10.30 and then resting on my sofa at 11am. Such efficiency is disorientating within the NHS. The nurse had looked thoroughly through my history, because I react to some antibiotics, but I promptly threw up ones I’d tolerated before. [Does anyone have any idea what that’s about?] The doctor who’d visited me at home after my temporary paralysis (this post) phoned me back (also quickly) and arranged new antibiotics for the same day (see next section).
Anyway, if you’re thinking that I had a breather between that mouth infection and this bad cold well you’d be wrong! The antibiotics did do their job, plus a reasonable amount of disruption to my already dysfunctional internal ecosystem. Before the infection healed, I also got a sore at the back of my mouth and a raw, viral sore throat from my partner. Just as that was healing I got a more fluey virus which wiped me out for our Winter Solstice gathering, the highlight of my very limited social calendar.
By Christmas Day I was just well enough to get up for lunch, eat at the table and be up for some of the afternoon. However, before congestion from that virus had cleared I came down with this cold. On New Year’s Eve I was drifting off to snotty slumbers at 9.45pm.
Now a jinxy element of our Christmas plans is we’re also having a Twelfth Night party on Friday for the first time this year. Part of the reason is because it’s a Friday so friends won’t be working the next day and people are more available than before Christmas. Another reason I have is if I’m too ill to go downstairs for one of them, with over two weeks in between I can probably go to the other, right? Now I don’t expect to drink or stay up late but my normal level of ME would make it reasonably predictable to be able to talk to friends in my own house for a bit. I’ve made the playlist and picked my outfit, but with sick on Sick in the mix this is in jeopardy too.
Highlighting sick on Sick
In Toni Bernhard’s excellent book How to Be Sick she refers to these troubles as sick on sick. I like this term but I add a capital to the 2nd (the minor) sick on Sick (as in Sick disabled a category of disability that deserves more recognition as disability). I think it is worth educating people we know about the ramifications this has for us.
I don’t know if you find the same but I’m mostly calm about ME/POTS, despite it being severely disabling, and then as soon as I have a ‘normal’ temporary sick on Sick problem on top I get disproportionately upset or grumpy. It usually involves disrupted sleep, which is enough to make ME worse. It will also last longer than for the friends and relatives who gave it to me. I’ll watch them get better in a couple of days but I’ll have symptoms for a couple of weeks plus likely post viral problems (or the downward immune spiral that was my December). All of my relapses have been post viral (sometimes also involving attempts to do too much). It also makes my dog anxious about whether I can feed her which is a sorrowful sight (I’m currently seeing this expression!).
The day after my speedy appointment, I made sure I left positive feedback with the Surgery. I made the point that what they classify as minor ailments can be the difference between coping and not coping if you’re also Sick disabled. Having these issues dealt with efficiently can make a big difference. I think it is worth us highlighting this issue with medics. Apart from anything, they can often do something about minor things, and that may make us less of a heart sink.
I notice when pwme opinion differs from supportive well people. I’ve noticed with responses to my last month that pwme take it very seriously whereas other people don’t. A well friend in the generally supportive camp commented that “isn’t it what you’d expect for your winter?”. Given that most of these problems were contagious, and I haven’t left the house, actually I think I should be able to avoid most viruses. I know sometimes you’re contagious before you know, but it’s really important for people not to visit when they have a sniffle or sore throat. How do you explain this to people without seeming rude?
I’ve started using the hashtag #sickonSick, perhaps sharing these experiences (such as tweeting at 1st symptom and tweeting when symptoms gone) might highlight that sick on Sick is a major issue for us? It isn’t the same as ‘just a cold’ or the ME equivalent of ‘man flu’.
I’d appreciate your comments on this issue and how you fight colds. I’ve had a few suggestions which might become a resource post at some point.
The most popular Tips for ME posts of 2016 were:
A post asking people with ME: Are you Disabled?
One sharing 10 Insights on Life through the lens of chronic illness (suitable for all, not just the chronically ill)
A post explaining how I hacked my blood sugar at home based on a large Israeli study (suitable for all). At some point I’ll write a follow up for this.
An emotionally difficult post on processing fear of death (and fear of endless illness): Learning how to die.
My experience of lack of treatment during an 11 hour temporary paralysis.
If you want to keep up to date with me: you can follow this blog; I’m @TweetTipsforME over on Twitter; there’s a Facebook Tips for ME page; and I’m intending to use Pinterest more, see PinTipsforME.