Invisible Illness Week 2014

September 8-14, 2014 is Invisible Illness Week. This year's campaign is "You may be just one... but you are JUST ONE... of over 100 million." There are some great resources on the website - check it out, here.

30 Things About My Invisible Illness You May Not Know

For the last four years, I've written about 30 Things About My Invisible Illness You May Not Know (2010, 2011, 2012, 2013). Some of my answers are the same or similar. But, I think it can be good to review how you've answered these questions in the past, so you can see where you were and how far you've come.

1. The illness(es) I live with is: Chronic post-traumatic headache/migraine (intractable, with and without aura), anxiety, depression, insomnia, irritable bowel syndrome
2. I was diagnosed with it in the year: Chronic migraines - 2008 (after a car accident). The others were diagnosed around 2002.
3. But I had symptoms since: dealt with headaches (and some migraines), anxiety, depression, insomnia, and irritable bowel syndrome since (at least) my teenage years.
4. The biggest adjustment I've had to make is: not always being able to take care of myself / depending on other people so much.
5. Most people assume: that nothing is wrong with me and/or that I can't hurt as much or often as I do.
6. The hardest part about mornings are: getting up without feeling rested, and  not knowing how much pain the day will bring.
7. My favorite medical TV show is: House, Lie to Me, CSI
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: getting to (and staying) sleep, especially when the pain is bad.
10. Each day I take __ pills & vitamins: I'm not really sure, but actually fewer than I've taken in quite a while.
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic, biofeedback, relaxation, essential oils
12. If I had to choose between an invisible illness or visible I would choose: Neither. There is so much stigma attached to both of them.
13. Regarding working and career: I have been unable to work since the accident in 2008. I tried to return to graduate school for a year, but ended up taking a leave of absence and then made the difficult decision not to return. Since then, working and/or school hasn't even been an option.
14. People would be surprised to know: I am in pain (often severe) every single day... all day, every day.
15. The hardest thing to accept about my new reality has been: that I have changed, and things will never be the same. I have limitations that I have to live within, or pay the (often very high) price.
16. Something I never thought I could do with my illness that I did was: allow myself to be vulnerable, which has allowed me to touch other people's lives in ways that I wouldn't have been able to otherwise. God is showing me that He still has a purpose for me.
17. The commercials about my illness: are very misleading as to what migraine really is and how debilitating it can be. The one about chronic migraine, where the lady is laying on the couch and everything is happening around / without her, is a bit more realistic.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to actively participate in life, though I'm doing the best I can (taking it one step at a time).
19. It was really hard to have to give up: who I was before the accident... I still haven't completely let go of that yet. It's also been really hard to give up going to church (the noises, smells, lights, crowds, etc are just too much for me to deal with).
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: have no idea what to do with myself (assuming "normal" is feeling "good," not what my "normal" has become)! I don't even know what life without pain is anymore.
22. My illness has taught me: to recognize the strength that I DO have. It is teaching me to TRUST God more... but it is definitely a long and difficult process.
23. Want to know a secret? One thing people say that gets under my skin is: Migraines are just bad headaches; take some pills and keep going / move on, it can't be that bad.
24. But I love it when people: accept me as I am, within the limitations of what I can do. Show that they care. Even just little things like: being aware of how bright a room is, asking if the TV/radio is too loud, rubbing my neck/shoulders/head, being considerate at a restaurant by allowing me to sit facing away from windows.
25. My favorite motto, scripture, quote that gets me through tough times is:

• "Be still, and know that I am God" (Psalm 46:10)
• "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4)
• "You will seek me and find me when you seek me with your whole heart" (Jeremiah 29:13)
• "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6)

26. When someone is diagnosed I'd like to tell them: keep yourself informed - research things online, ask your doctor questions, do your best to understand and articulate your experience with your disease/illness. You are NOT alone - join social media, church, or other support group(s) to help you through the difficult times that you will go through. Be ready for a roller coaster ride of ups and downs.
27. Something that has surprised me about living with an illness is: how strong, yet vulnerable, I can be. Everything I do has to be a conscious decision to use my energy for that specific thing (even seemingly basic things, like taking a shower).
28. The nicest thing someone did for me when I wasn't feeling well was: take care of me... When I have a bad migraine, my husband does everything he can to take care of me (feeds me, makes sure I take my medicine, massage my head/neck/shoulders/back/feet [if I can handle being touched], make sure I'm in a dark room and am as comfortable as I can be, and anything else that I need).
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out to raise awareness, increase research, and help correct misinformation. Invisible illnesses are real and affect so many, but are widely misunderstood and stigmatized.
30. The fact that you read this list makes me feel: heard/validated, and hopefully a bit better understood.

The Battle for Sleep Continues

I've written about my My Ongoing Battle of Sleep before. Unfortunately, the battle continues.

My sleep has been a huge obstacle and struggle lately, even moreso than normal... which is really saying something. I'm not sure exactly why, though I know that pain, anxiety, depression, and some of my as-needed migraine meds all play a role.

Making things more frustrating, I can be dozing off on the sofa (to the point that I can't keep my eyes open)... but, by the time I get to the bed, I struggle to get to sleep.

It's been worsening quite a bit over the past month. I'm almost on an opposite sleep schedule - getting to sleep around the time most people are getting up for the day, and sleeping into the afternoon.

I've tried different meds, essential oils, hot showers, hot/cold packs, a lot of the typical "sleep hygiene" ideas, etc. I keep trying to go to bed at a more normal time, but I sometimes find myself so restless that I could hardly stand it. So, I'm trying to get my body back on track... it's a wearisome journey.

Farewell, LayLee

Previously, I introduced Our Honey Bee and Our LayLee, our furbabies.

The details of what happened are really no longer important. Suffice it to say that the decision to split the girls up was difficult and heart-breaking, but involved a lot of talking, crying, praying, and trying our hardest to make it work out without the separation result.

This post was written 5/11/2014:

Jeremy and I have struggled with so many things, regarding the situation with the dogs. Here are some of the things I wrote on 5/11/14, the day the girls had a big fight (not their first, or last, unfortunately):

We're both struggling with "what ifs," and other guilt / regret issues... We both wonder and feel somewhat at fault... like we could've prevented this from happening.

I hate that getting LayLee was something we talked about, prayed about, waited for. It seemed like the right thing / what we were supposed to do - for us, and for both the dogs. And, now, here we are.

Jeremy and I are also both dealing with feelings of incompetence or something. Like we've let the dogs down... like we've failed them. Both of these girls are amazing and deserve amazing homes / lives. We truly thought we were doing the best thing for them by keeping them together. But, they both have rough backgrounds (some known, some unknown), and it's just not working.

Without knowing my health, if / when Jeremy might travel, etc, it's just not feasible for us to be able to tackle this in a way that even has a hope to be effective. It's escalating so very quickly.

... LayLee is a member of the family, and I don't know what we're going to do without her quirks and silliness. It's so hard because we're not losing her to death... we're having to make a choice / decision to separate from her (I hope that make sense).

This post was written 7/11/2014:

As we made the difficult decision to separate our dogs for good, I struggled a lot (really, we both did). 

Trying to keep the devil's voices at bay. He keeps trying to make me so concerned about what more we could have done, what others think of us / the situation, etc. Jesus, please protect me from him. You, alone, are my strength, Lord.

© 2014 Jamie V.

Today marks 1-month since we had to return LayLee to her foster mom. While time has helped ease the
pain, we still miss her so very much.

LayLee will always hold a special place in our hearts. She truly is a beautiful soul, who changes / touches the lives of everyone she interacts with (both human and canine). We wish her the best, as she truly deserves it.

Meanwhile, we're getting re-adjusted to being a family of three.

The Dark Duo, Continued (4/9/14)

Here are some other thoughts from April 2014.

This post was written 4/9/2014:

How am I supposed to keep from feeling defeated, when so much of what I try to do defeats me.

Picking weeds (because our yard looks ridiculous)... I know that it's hard work, so I've been pacing myself and doing a little bit every day or two. But, I can't seem to get a handle on it. What's worse is that I'm struggling to physically be able to do it, even for short periods of time. I don't like feeling like I can't do something, so I continue plugging away a little at a time... but, it's not working. It's just making me feel worse about myself. My spirit is willing, but my body isn't able. And, I don't know what to do with that.

This post was written 4/6/2014:

The words of the enemy have been eating away at me, no matter how hard I try to stop them. I struggle to find anything of meaning to do in my life. Hearing the eulogy at my grandmother's funeral (in February) made me think how little there would be to say at my own. I know that's dark, but that's where I am right now. 

The enemy tells me that I don't and can't do anything meaningful. And, I feel like I can't argue with him. While I'd love nothing more than to prove him wrong, I don't know how to. I don't have the energy or the mindset to fight right now. 

So, I'm trying to remind myself (and God has placed angels in my life to remind me) that I have the King of Kings, the Lord of lords, the God of angel armies, fighting for me... that my Lord will provide the strength I need.

But, the enemy just gets louder.

The Dark Duo: Anxiety & Depression (4/9/14)

I can't believe that it's been so long since I've posted anything here on my blog. I finally sat down to take a look at what I've started writing, and came across several things I started back in April. I'm not in the same place as I was then, but I'm still struggling a lot with depression, anxiety, and pain. I'm going to try to get back to writing, and I feel like posting these things (even if some of them are incomplete) that I wrote several months ago will give me a start.

This post was written 4/9/2014:

I've been away for a long time, and though I'm ready to come out of the darkness I've been entrenched in, I don't really know how to... But, I have to try.

Honestly, the last few months are somewhat of a blur... in some ways, the anxiety and depression feel like they've been all but consuming me for so very long... but, the calendar tells me otherwise. But, that's what the dark duo does. It blurs and twists reality.

I haven't talked much about my experiences with depression... or, maybe I have. I don't really remember. I know I've shared some about my struggles with anxiety. It's hard to put into words. I've tried writing in my hand-written journal a few times over the last few months, as a way to get some of the internal struggle out; but panic attacks put a quick stop to that.

Being completely honest, I've been lost.

I have felt so much over the last few months... and, yet, so little. I've felt the weight of everything, indifference to everything, great sadness, complete helplessness.

Just a quick update on some things that have happened:

• One of my grandmothers passed away.
• My husband has been to (and currently is in) Afghanistan for work.
• Botox was tried twice and failed.
• Another treatment option brought on such side effects that it brought back fears of losing the weight I've (finally) gained back.

My list of blessings is long, but here are some:

• My Lord has carried me through everything.
• My husband continues to be the most loving and supportive person in my life.
• My family has helped support me, especially when my husband isn't physically here to do so.
• I've gained back the weight I've lost and struggled to gain back over the last 5 years (finally back to pre-accident weight).
• I've reached out, when I didn't know that I could (and I have a couple cheerleaders that help me celebrate the victories / successes, like this, that are bigger steps than they seem - thank you!).
• I've taken care of myself, the dogs, and the house, while Jeremy has been out of the country.
• I had an amazing time with loved ones for several days around my birthday last weekend - I truly enjoyed myself.

I'm going to try to start writing again. I'll forewarn that I'm still in a pretty bad place, in general (it's not 100% of the time, but I tend to feel the need and pouring of words in some of my darkest and most painful times... so, that's when I write). I want and need to be open and honest about the pain and emotions I'm having (especially the ones I try so hard to hide from the world), so it may be rough going for a while. My hope is that by sharing them, I can take some of their hold and power away.