Monday, January 5, 2009

What does YOUR Consistency List look like?

Consistency, Tough Boy, is the secret to maintaining comfort. Here's a list (in no particular order) of some things that you and I may normally take for granted, but might not realize how significant a small change can affect you while recovering:


1) Never running out of hot water during your shower

2) Heat - not too hot, not too cold

3) A bag hanging on the wall, next to the door you always use, to put your keys in the second you walk inside (yes, I bought a calculator for my keychain to struggle less with my new inability to do mental math... don't judge... it's fantastic!)

4) Family who try to understand


5) Friends who try to understand

6) Hope. It gets better. It has been worse. I am improving. I will still continue to get better.

7) Faith - I'm jealous if you've got it. Say a little prayer for me please if you have some extra time...

8) Safety and Security

9) Electricity, gas, light bulbs, internet

10) Thick window shades to block out the sun

11) Quiet

12) Food and nutrition

13) Daily multivitamin

14) Toilet paper

15) Charged up electronics

16) A decent, sharp pair of scissors

17) Stapler - not jammed, not empty

18) Working pen and post-its or scrap paper, accessible near the fridge, in your car, on your nightstand... everywhere you might come up with something brilliant!! (Which is everywhere)

19) Trash cans in every room to prevent clutter buildup

20) Weekly pill holder

21) Sunglasses

22) Clean underwear - seriously, just go out and buy a ton... I think I have close to 100 pairs. I hate doing laundry.

23) Big huge desk calendar to jot things on - sleep much? migraine today? 2/10 or 10/10 pain? met a friend at a loud bar and were OK? ears rang for three straight days afterwards? Any trends?


I would put my doctor or physical therapy appointments here as well so I would see them every day as a reminder - prevent over-extending priorities and consider these appts the ONLY thing necessary to highlight (highlight for health! haha)

24) The calendar and alarm on my cell phone that is always with me to keep appointments in

25) Earplugs for loud events

26) Fresh milk

27) Food you'll eat in a pinch - I like choco chip granola bars and raspberry nutrigrain

28) Dishwasher - seriously, just use it.

29) Money - but I haven't a clue how to help you here.

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I guess these go into 'organization?'

I absolutely acknowledge that one of the best things I could have been blessed with during my recovery is the pure-luck that I have been able to pay for my apartment (and I have an understanding landlord that is allowing me to pay month to month for a little while). This is my safe haven, my home-base. Things work the way they should, I live alone, I can control my environment, and nobody is messing up or breaking things that I'll have to fix for them.

I haven't discussed the LENS therapy yet (but I will!!) which I get weekly. Therefore, I spend a night at my parents house once a week. A big issue for me is temperature changes. They cause insane nausea when I get too cold, or when I get uncomfortably hot. My parents keep the heat at about 62 degrees. I freeze and the migraines begin, but they're pretty comfortable upstairs with each other's body heat. In my apartment, I have radiator heating and it's always about 70-73 degrees in here. There is very little variability and I stress less knowing there is consistency.

My father has a habit of keeping the water heater on its lowest setting. When I'm freezing, or my muscles are squeezing my shoulders, I hop in the shower for warmth. The relief isn't possible when the water goes cold after 10 minutes. Do I take long showers? Guilty. But in my apartment I have never run out of hot water and I can rely on it being there when I'm seeking comfort from a fluctuating body temp.

Fun fact: Changes in your heart rate can lead to migraines. Some biofeedback methods use a heart rate monitor (called Emwave) and hand warmers. It takes much dedication, attention and concentration (which might be too much to invest) but can be very effective in preventing oncoming migraine discomfort. If you have cold hands, this could be a sign that your heart will fluctuate to keep perfusing your vital organs... warm up those hands, put on a sweatshirt! If you're overheating (if I spend too much time in a hot shower) your heart rate will try to adjust to help you sweat out the excess heat inside your body! Heat changes put a demand on your body, and sudden changes from your natural thermoregulation responses can be extremely uncomfortable! :(

My parents also have their routines of making a lot of noise that they are unaware they are making. Washing dishes and clinking them all together, watching TV louder and louder, or when the phone rings with its obscenely high pitch; all these environmental noises I couldn't control with my family who didn't understand my sudden irritability and discomfort! Noises get louder as you get more tired. Sometimes, the pure vibration that I could feel in the walls from the television was too much. I don't have an explanation for it. It can be very difficult to communicate to people who have no clue if you're just trying to pick an argument or if you're seriously debilitated as the noises pile up.

Thankfully, after 6 months of trying to adjust to me, I have become a little more tolerant (where I'm not angrily cursing, but politely reminding them) and they have been a little more aware of their own actions when I'm home. My mom even found wireless headphones that my dad uses to watch the TV - they're a blessing!! I've got to take a picture... he's hysterical. You can't pick your family, like many other stories - mine hasn't always been there for me, but even the little efforts go a long way. Therefore, family is also on my list.

Finding consistency and reliability is a huge step towards increasing your comfort. It sometimes might be taken for granted until you are moved into a 'new' place with different amenities and rules. Obviously not a complete list, and highly individualized to my experience (and my scattered mind today!), so feel free to create your own!! And then make sure the things on your list stay in order to make your life a little easier :)