but you don't look sick
Reading through my blogs (by other people) today I came across a post by a lady called Christine at ButYouDontLookSick.com who is suffering from Lupus. She talks about her daily struggles of living between the 'healthy' world and the 'sick' world.Being someone who deals with this on a daily basis I can really relate to what she has to say. I'm often berated for not doing things which 'normal' people do. They will say "well why can't you do that, I don't see anything wrong with you." Well that's just the point you can't see what's wrong with me but that doesn't make it any easier to deal with. Although now that I walk on crutches it makes everything a bit easier to explain if I'm walking around but not if I'm sitting down and they don't know me.
what goes on in the mind of a sick person?
'Pay no attention to the girl behind the smile' eloquently explores all of the different factors we need to consider that probably would not even cross a healthy persons mind: how far is it, how long will I sit for, what if I need to take my medication then? the list is endless.
If you've read anything about me either on MysteryDisease or on one of my other blogs then you will know that I take a variety of medications everyday, I can't walk far, I wear compression stockings and I will kick up a fuse if something isn't right or someone is wrong. That's all very well and good but when you have to stick to a medical schedule just to stay alive then breaking that schedule can bring up a whole host of problems that need to be considered. Here are some examples:
If you've read anything about me either on MysteryDisease or on one of my other blogs then you will know that I take a variety of medications everyday, I can't walk far, I wear compression stockings and I will kick up a fuse if something isn't right or someone is wrong. That's all very well and good but when you have to stick to a medical schedule just to stay alive then breaking that schedule can bring up a whole host of problems that need to be considered. Here are some examples:
- When I started to go back to work I had to change my hours to suit my injection and pain medication schedule.
- My partner in crime had to change his schedule to take care of me if I'm having a bad day.
- I can no longer have a shower/bath and wash my hair on the same day (alternating days) as I find it really exhausting.
- I get dehydrated easily because of my meds so I have to be near a form of water.
- I struggle to walk a 1/4 of a mile (400m) and if I do that's me done for the day nothing else will happen. Because of this I need to be very careful on planning trips to the supermarket, doctors and hospital.
- I have to plan when I go to the bathroom because the compression stockings are tough to get on and off and zap valuable energy each time I have to faff around with them.
Those are just a handful of decisions I need to make on a daily basis to maintain my regular schedule so if I go to an extra meeting, go to a friend's house, go to lunch, anything that is abnormal for my schedule, I have to have meticulous planning to be comfortable and to have a good time.
Head on over to Christine's site and see if it strikes a cord with your daily lives. Have any tips or stories on living with a silent disease? Share it in a comment and we'll be here for support.
Raise Awareness For Invisible Illnesses
We all get sick from time to time but there are those of us who deal with it on a regular basis. Help me to raise awareness by purchasing one of these products and wearing it, giving it to a friend, putting it in the office, or whatever you can think of so that these invisible illnesses don't go unnoticed. The ones that I put on here are just a small collection, you can click through to find others that might be more suited to your taste or even if you want to by multiple versions of it. Thanks for helping.
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