I’m having a bit of a shit day. Went to the Doctors this morning to learn how to apply my new custom made support bandages (God, they are tight, my leg feels like it’s being squeezed off me) and with it got a new list of things I must not forget to do. I hate this because, as much as I’ve done a really good job of staying on top of things, I feel a constant pressure that I’m going to forget something and my progress will all come tumbling down around me. I feel like a juggler with someone standing beside me, throwing in extra balls going “and another one, and another one.”

I’m sure some people have it worse than me, and I’ll get used to this. I AM making good progress but it’s a long haul and I’m pushing as hard as I can. However, some people mean well but… well frankly are not helping by trying to push me harder. Can you do this for me? Oh we’ll do this? You should do that! It’s got to the stage where they are clouding the water and I’m doing myself damage.
All I probably need to do is say “look, I have a lot to deal with, please step back and do not ask me for anything more than I am able to give, which only I or my doctor can be the judge of.” I’m pretty sure they’d all apologise and say sure. But instead it comes out as “Argh! All fuck off, leave me alone!” Which results in me apologising for being a dick and feeling even more miserable.
Below is my current daily health schedule. I have to remember all this on top of the normally daily stuff like paying bills, writing books, doing my day job. Forget one thing and it can totally screw up rest of the day or the next day. I thought writing it down might make it feel more manageable. Instead it’s just added to an already shit day. I’m sure I’ve forgotten something as well.

  1. Get up.
  2. Stop sleep mode on fitbit.
  3. Immediately put on support bandages before legs start to swell. Do not apply cream. Remember to put right ones on, to line up heel, and ease up leg rather than pull.
  4. Dress, remember to apply fitbit to trousers.
  5. Get breakfast. Remember no more than 5% fat in any item. Use phone (if you forgot it go back upstairs to get it) to scan every single item into app. Take 1 tablet (if you forgot, go back upstairs. Must be taken within an hour).
  6. Do Morning walk. Keep to paved roads, and do not go anywhere where bandages could snag or leg could be accidentally scratched. Remember stick and ensure that it’s at the right height and hasn’t slipped. Ensure that app to measure walk is turned on before setting off and turned off as soon as you return.
  7. Lunch. Remember no more than 5% fat in any item. Use phone (if you forgot it go back upstairs to get it) to scan every single item into app. Take 1 tablet (if you forgot, go back upstairs. Must be taken within an hour)
  8. As working, remember to elevate bad leg. Remember to take breaks and walk around to ensure constant blood flow.
  9. Dinner. Remember no more than 5% fat in any item. Use phone (if you forgot it go back upstairs to get it) to scan every single item into app. Take 1 tablet (if you forgot, go back upstairs. Must be taken within an hour)
  10. Do Evening Walk. Keep to paved roads, and do not go anywhere where bandages could snag or leg could be accidentally scratched. Remember stick and ensure that it’s at the right height and hasn’t slipped. Ensure that app to measure walk is turned on before setting off and turned off as soon as you return.
  11. Ensure that all food, including snacks and water is entered in the app. Review for any anomalies. Keep eye open from dehydration headache caused by drugs.
  12. Remove support bandage.
  13. Shower. Be careful not to slip where unsteady on feet and take care when washing legs. Do not rub when drying but dab dry them instead.
  14. Ensure that if you’ve not been to bathroom today that you mentally note it, looking out for any instances of constipation caused by side effects of drug. If you are going regularly keep an eye open for colour changes which might indicate complications / internal bleeding.
  15. Apply cream to leg. Use surgical glove to apply it, remember to rub it in in a downwards motion or risk infection. Ease off any dead skin but do not pick at it. Allow to soak in.
  16. Wash out bandage. Do not use fabric softener. Do not put over a radiator or any heat source to dry but allow to drip dry naturally.
  17. Put fitbit on sleep mode.
  18. Go to bed.