Over-sharing / Accomodate yourself

Today I wrote a terribly-long, unsolicited-advice text to a friend who suffers with chronic migraine, to tell her about my experience* 😳

----------------------------------------------

*10 out of 10 would NOT recommend doing this btw. Like, on the checklists of things to never do, that's like the top 3 of all time.🤦‍♀️ 

**That said, she was VERY kind about it. I'm just a bit mortified. Like, WHY didn't I stop myself 😭🤦‍♀️ 

see ***ENDNOTE***

----------------------------------------------

Sooooo half-way through this ill-advised situation, I thought... I should blog this. A lot of it is the distilled application of 4+ years of living with chronic migraine (and other illness / comorbidities). It is an excerpt from The Heather-handbook of how to help take care of Heather, and, if nothing else, would be a great reference for Heather 😂

The thing is, the information here IS very Heather-specific, BUT the premise has much broader application. And in my very AuDHD way, that's what I was attempting/hoping to impart, even if just a little, to my friend.

SOooooo here is a large excerpt of my monster-text... Additional content tbd lolol ... 

-----------------------------------

...Sharing some of my current approach to life with chronic migraine...  

Overall, the biggest thing I think that's "helped" is that I've learned (am still learning) how to accommodate myself, and try to do so as much as possible. It's still hard for me and I have to actively give myself permission to do this a lot. (Will list some examples below)

I've also developed ZERO tolerance for "pushing through" (mostly cause I'm too afraid to) cause it always makes it worse and lasts so much longer. 

I think that it actually helps it not last as long though.

And overall, again, I think I'm finally learning how to take care of myself (about 20 years too late...) 

(NOT implying you don't take care of yourself!! I think we can be too hard on ourselves though and not realize the effect it has on our body)

Some examples:

-I drink one coffee beverage first thing in the morning and have no caffeine otherwise (caffeine can trigger rebounds but I can't go totally without it or I get worse headaches 🤦‍♀️)

-I have to be very careful with my blood sugar and balance sweets with protein or a meal. Even a sip of sprite will give me a headache in minutes, so I'm now trying to avoid all soda entirely. And no artificial sugars at all. 

-I have to eat consistently within specific time frames, again making sure to have some protein. I have a protein bar on me at. all. times. Bc I've been caught too many times letting myself go hungry (I forget to eat! Or lose track of time)

-Quaker oats has an instant oatmeal with protein that's my go-to when I don't have time/energy. Two packets in a cup with some water. I don't even heat it up most of the time (mostly bc it makes me too hot - I have heat intolerance bc of some of my meds)

-I have to keep my temperature regulated. If I get too hot for too long, immediate headache. For work, I carry an insulated water bottle *full* of ice and have a supplemental nalgene with just water that I use to refill it. The ice water helps me keep my body temp regulated better.

-I also carry a hand fan from the dollar store in my purse and use it if I get hot. I feel totally 18th century southern mama drama doing this but it really does help, so I coach myself every time I have to pull it out that this is a much better alternative to getting a migraine. And honestly, a lot of people tell me what a good idea it is or just ignore it entirely (I have a very strong proclivity toward embarrassment)

-supplements I take daily: CoQ10, vitamin B-complex (blend, with zinc), Magnesium Glycinate, L-methylfolate, vit D (along with my MANY antihistamines for my mast cell issues - no idea if there's crossover)

-I'm very sensory-sensitive 24/7 whether I'm in an active migraine or not (this has definitely gotten worse over the last few years) so I always have my noise cancelling headphones and use them immediately if the noise level starts to go up or bother me at all. *I've started using my headphones and sunglasses BEFORE a migraine starts/gets bad, and it often helps push it off or not get as bad

I have a pain level guide for my migraines that Drew and I use to communicate and I use to guide my actions. (i.e He knows if I say level 6, I'm going home and going to bed.)

My personal breakdown:

A level 2-3 (which can be almost all the time honestly), I'm careful with sensory input, avoid loud sounds, overly bright lights, smells of any kind (pretty much ever). This is pretty much daily life at this point. 

A level 4-5 is when I start to get much more careful. Start wearing my headphones, go into a quieter space, avoid stress if possible, have a snack, drink extra water, try to remember if I had my coffee and took my meds. Make a get away plan for the rest of the day, cause I can't let it get worse if I can help it

A lot of times, I can keep it to a 3-5 if I go easy and avoid overdoing it. When I get home, I tell Elliott I have a migraine that's trying to get bad and I need to keep things quieter, I wear my headphones, and take it easy

Level 6 is when my alarm bells really go off. I look for escape routes as quickly as is practical, and minimize all input until escape can be reached. When I get home, I go straight to bed, dim the lights, tell everyone I need an hour of quiet. Sometimes that helps enough that I can interact with them later, though I still have to keep very careful with sounds. We all talk quietly and keep lights and sounds low. This at least helps keep it from getting much worse.**

**(I will say - mom guilt is for reals. Lately, it helps when I assure her that she is ALWAYS welcome to come see me and talk to me if she needs to. I try to stay as approachable and kind as possible while still being honest about how I'm feeling. She knows my meds can make me very sleepy so I may not be super alert, and she understands that it's very painful, so she does try to be careful when she remembers to. We're trying hard to find a balance but it's definitely tough some days.)

If none of that is helping and it's still getting worse, level 7 is when I go full Monty, all lights out, heating pad, windows taped shut, take a muscle relaxer (I have tizanidine as a "rescue" that basically helps me sleep).

(Level 8-9 is pretty rare for me these days, and has it's own plan too which is basically trying to mitigate the pain as much as possible). A prolonged level 9 will send me to the ER within a day. I was very nearly there a few weeks ago and thankfully didn't end up needing to go.)

-I pretty much avoid OTC pain meds entirely, as I think I'm very prone to rebound headaches, and I've started having mast cell flairs the last few years that are triggered by NSAIDs.* 

That said, I've started letting myself take Tylenol once or twice a month when I get to a level 7-8. (This always happens right before I start my period.) My hope is that heading off a bad migraine will keep me out of a several day binge. 

*Mast Cell Activation Syndrome may be something to read up on if you have any of those types of symptoms as well

***The main idea about all of this is, I've been learning how to listen to my body and accommodate it as much as it needs. Your needs may look a lot different than mine! I don't expect all of my examples (or even, any of them) to work for you necessarily, but maybe it can inspire you or help you find ways to think creatively about your needs and how to help meet them.

It's so so hard. Having to live like this. It's very depressing some days. I can do everything "right" and still end up with a migraine. Or, have one piece of candy and end up in bed all night. A lot of days, I'm not okay living like this. But, I'm more okay than I would be otherwise, I think. 

The moments of joy with Elliott and Drew pull me through to a new day where we start over and try again.

It's so hard. And I want you to know I'm not sharing this out of a place of success or mastery. I am struggling so much.

I think there's something helpful, though, about struggling authentically and openly. I've learned a lot from others sharing with me in their struggles. 

------------------

ENDNOTE:

------------------

***Because in all seriousness, the only thing worse than receiving a monster-long text of unsolicited advice from a random person is experiencing, even for a moment, that wall of hopelessness that slams you to the ground and whispers to you - you'll never get better.

If I can offer even a sliver of hope with ideas or comfort, or just laughs at my expense in the middle of this disaster, I have to try. 

----------