What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!