12 Things People Don't Know I Do
I'm going to be up front - I'm not telling you this to glean sympathy. Indeed, if anything, I'm showing you how a person can adapt to something they didn't count on and make life look fairly seamless. I'd like to raise awareness that someone with a chronic condition has to think this hard on a daily basis - using complex means - to look like everyone else.
I must admit that I personally don't know a single person who does this, but due to the beauty of participating in online forums, I know that I am not alone. So, here's a glimpse into my week:
1. I spend some of the weekend dividing up medication and vitamin supplements into miniscule pill boxes for the week ahead.
2. I take ridiculous amounts of medication, at specific times of the day so they don't conflict with each other - avoiding alcohol for most of the day so it doesn't conflict with my stomach! (let's not go there)
3. As a heat-sensitive MSer, I sometimes lie down after a shower, particularly in the Summer (and leave enough time in the morning to do this so I don't miss my bus).
4. I constantly strategise how to carefully use my daily 'spoons' (theoretical units of energy). I lose energy throughout the day like phone battery, though when I'm 'done', I'm 'done'. I can only cope with one biggish thing per weekend, e.g. day out, company of friends, etc. See the brilliant The Spoon Theory.
5. When visiting a new building, I seek out the lifts (do they have them?), stairs (how many? can I do this?), and the location of the nearest loo (can I get there urgently?).
6. I think. Yes, this sounds a little odd but allowing sufficient time before or between meetings, or the first thing I do in the morning, I work out what I would like the outcome or my contributions could be. Good advice for anyone, but particularly useful to someone with 'cog fog' (cognitive fog - see future post on symptoms).
7. Which leads me to planning. With an unpredictable condition you have to be flexible - I never know how I'm going to feel at any given hour. Please don't hate me if I have to cancel last minute - it's not because I don't feel like it, I really want to see you, but if I don't listen to my body I will not only will I be a jibbering wreck, it will hurt me, and I will be an utterly useless friend to you in the long run.
8. I book events and holidays with a possibility of a refund, avoiding at all costs places that are too hot, too cold or that involve steep inclines. It hurts to wait in queues for long as the MS bully comes for me.
9. I have appointments with hospitals, the GP and other doctors at least twice a month and have blood tests every couple of months so they can monitor me on the medication I'm taking.
10. I carry a foldable walking stick with me wherever I go (with a spare one in the car) for those days/moments when walking is difficult either due to spasticity, pain or fatigue.
11. I air dry my hair or dry in stages to avoid the pain in my arm and the heaviness of the hair dryer (lightweight - yeah right!).
12. I work on a Monday, Wednesday and Friday so I always have a day in between to recharge and go at my own pace. This has been life-changing.
All this so I can work peacefully and be a good wife and mum.
I must admit that I personally don't know a single person who does this, but due to the beauty of participating in online forums, I know that I am not alone. So, here's a glimpse into my week:
1. I spend some of the weekend dividing up medication and vitamin supplements into miniscule pill boxes for the week ahead.
2. I take ridiculous amounts of medication, at specific times of the day so they don't conflict with each other - avoiding alcohol for most of the day so it doesn't conflict with my stomach! (let's not go there)
3. As a heat-sensitive MSer, I sometimes lie down after a shower, particularly in the Summer (and leave enough time in the morning to do this so I don't miss my bus).
4. I constantly strategise how to carefully use my daily 'spoons' (theoretical units of energy). I lose energy throughout the day like phone battery, though when I'm 'done', I'm 'done'. I can only cope with one biggish thing per weekend, e.g. day out, company of friends, etc. See the brilliant The Spoon Theory.
5. When visiting a new building, I seek out the lifts (do they have them?), stairs (how many? can I do this?), and the location of the nearest loo (can I get there urgently?).
6. I think. Yes, this sounds a little odd but allowing sufficient time before or between meetings, or the first thing I do in the morning, I work out what I would like the outcome or my contributions could be. Good advice for anyone, but particularly useful to someone with 'cog fog' (cognitive fog - see future post on symptoms).
7. Which leads me to planning. With an unpredictable condition you have to be flexible - I never know how I'm going to feel at any given hour. Please don't hate me if I have to cancel last minute - it's not because I don't feel like it, I really want to see you, but if I don't listen to my body I will not only will I be a jibbering wreck, it will hurt me, and I will be an utterly useless friend to you in the long run.
8. I book events and holidays with a possibility of a refund, avoiding at all costs places that are too hot, too cold or that involve steep inclines. It hurts to wait in queues for long as the MS bully comes for me.
9. I have appointments with hospitals, the GP and other doctors at least twice a month and have blood tests every couple of months so they can monitor me on the medication I'm taking.
10. I carry a foldable walking stick with me wherever I go (with a spare one in the car) for those days/moments when walking is difficult either due to spasticity, pain or fatigue.
11. I air dry my hair or dry in stages to avoid the pain in my arm and the heaviness of the hair dryer (lightweight - yeah right!).
12. I work on a Monday, Wednesday and Friday so I always have a day in between to recharge and go at my own pace. This has been life-changing.
All this so I can work peacefully and be a good wife and mum.
