Christina Update #3: Dying Dreams

Christina has been wanting to write a thank-you for all who are contributing for her support. She has been searching for the right words. It has been challenging for her to find them, and not just cry. 

At last, this update appears in Christina’s words, recorded here with my help. I’ve been providing question prompts at random times this week and asking her to respond with voice recordings, which I transcribe. My prompts appear in italics in the text below after each date. I have also included excerpts of Facebook messages she has sent me.

As of this writing, Christina is in Chacala, a nearby coastal village where I have spent the past few winters, staying in the small sweet Mexican hotel my friend Eden bought. My hope was that this soft landing would help her stabilize after her travel from the US. 

Later this week she will move to San Pancho, where she has lived for several months every year to avoid the harsh New Hampshire winter. A friend’s teenage daughter will stay in Christina’s little apartment with her for a week or so to help her settle in. I have no idea how any of this will work out.

11/5/20 Right now what is helping me to survive is that I’m in Chacala and I know up the street are my new friends Eden, Natalie, and Lora. And Cris who works at the hotel. She’s very kind and we are friends and she hopes to visit me in San Pancho, which makes me feel better. I feel safe knowing they’re there in case I cannot walk, or if I was to fall. If I have an anxiety or panic attack I know Eden is nearby and would help. 

I have a mango smoothie right now and some guacamole so I know I won’t be hungry. Feeling very anxious and just not in control of my life. 

I got out of bed today at 8:00 because my migraine had finally broken and my period cramps weren’t too bad so I was like: I’m going to do my 100 yards and maybe walk down to the restaurant and be with the water. 

It’s warm and sunny and I’m enjoying looking at the water. The sun is helping warm my achy body and it feels so good. The wind. Watching the waves. Seeing nature. Animal and people watching. 

Walking the 100 yards was Eden’s idea, so to get ready I wrapped both knees in Ace bandages and went outside to do my task. But once outside, I looked both to my left and my right, and they were hills and I broke down and did not walk the 100 yards. 

I felt I could’ve maybe done the 100 yards, as I used to be an athlete. I mean, come on. 

I felt scared of what would happen after the walk, since most things affect me that night and the next two days to a week. So I felt scared and defeated but still wanted to try SOMETHING, so I called a taxi and later my new friend Natalie got me, as she’s super kind and lives right there. I was just too scared to walk. I get nervous because I hurt myself so easily and I need to be okay so I can make the move to San Pancho. 

11/6/20 Right now I’m managing my life by taking my medications, filling up my hot water bottle and my ice bags and reclining in bed to take the pressure off my neck because it’s really hurting. I’m going to hydrate to help with my headache. The headache is winning. 

I’m in too much pain to … think. 

Taking one step at a time and asking for help and accepting it. Scared. Sad. Anxious. Feeling pathetic and useless. Broken.

11/7/20 A challenge I’m dealing with right now is I cannot get rid of my migraine and my severe neck pain, probably from the neck instability. I just vomited from pain. 

Eating, walking, standing, riding in a car all add to my pain. Basic things I feel robbed of. Being sick all the time and/or in pain. People don’t know what to do and I don’t know what to do and I’m just so tired of this. 

11/8/20 In this moment, my life would be significantly better if I had three more ice bags and someone massaging my neck and trying pressure points. 

In a lot of pain. Wish I were in a recliner, which takes the weight off my neck. It helps a lot. If my migraine was gone and my legs and neck could handle a walk, I’d be so happy to be outside for sunset. 

If I had a therapy animal I know I’d feel less alone. I can’t have one in San Pancho. No pets allowed in my apartment. And now I’m not strong enough to train dogs or play with them. They hurt me on accident, and it makes me very sad. So many things I can’t do anymore that used to bring lots of joy. 

11/9/20 When I think about moving to San Pancho, I feel anxious because I don’t feel like I have much support there anymore. The town has changed, due to covid and due to the many tourists flocking to beaches from inland, as they've been stuck inside for months. 

I feel I don’t have many people who understand me and my stuff and want to help. I feel anxious about being left out, being alone all the time, being judged. Being made fun of. Being called crazy Christina cuz I can be fine one moment and then I’m at a 10 pain level and need to get away, back to safety, back to home so I can use the few tools I have to help myself. 

I feel helpless. In the sense that I can’t control my body. Which makes me feel I can’t control my day. My life. My time. My plans. Very frustrated. So tired of waking up. So scared of what’s gonna hurt me, when, where, how, how long. 

People say go with the flow and you'll be fine. They don’t get it. They don’t realize it’s a full time job I can never escape, unless I’m asleep. They don’t see me managing, from hour to hour. Gauging if I do this, this may happen, so I can’t, because later this has to be done which is more important. So I feel very sad, anxious, and scared. And now it’s just been so long, of course I’m feeling depressed. 

Someone on the EDS group finally got disability, happy for her. Two years it took her, and in the comments many responded with their cases still pending after years, and others who said two, three, five years it took to get it, and to never give up. 

They make it so hard that you want to give up, and many do. The state has admitted to me they make it hard, so people give up. They don’t have enough money to help everyone. I have filed once, before my EDS diagnosis this last January. My doctors told me I qualified for PTSD, chronic pain, chronic lyme, fibromyalgia, chronic migraines, neck instability, permanent nerve damage, GI issues, POTS, and the list goes on ... 

I was told I did all the paperwork and notes, etc. I worked six months on it. I double checked before leaving to MX last time, to make sure I signed everything and did everything. They told me yes, I had done everything I needed, and I could go to MX and within six months I’d get a yes or a no. Ten days after arriving in MX last time, the state mailed a ten-page questionnaire for me to fill out right away and a psych appointment. I asked them to fax me the papers. They wouldn’t accept the papers faxed. I asked the doctor if I could do a Skype call (this is pre covid). The doctor said yes, insurance said no, they wouldn’t cover it. So that was that. 

Very disheartening. So much work. So many doctors and tests and pokes and prods. Now with the EDS diagnosis I’m told to reapply, as EDS is a horrible and progressive disability, like some of my other disabilities, but the EDS trumps them all. And the crazy symptoms. From washing my face and wiping my thin skin right off, or my knees going out backwards, collarbone dislocating, etc. 

I wish I could start the process again, while in MX, as it takes so long and here I am warm. I need warm or hot weather.

I just can’t see the light in the tunnel. 

I am grateful for all the care and help from family and friends, and complete strangers with big hearts. Without the help of my family, Kathryn, and Eden and Lora and Natalie, and the donors, I do not know. My life would be even more unbearable and I’d really push to leave this life. I'm just so tired of never having a break from it. And if it was more predictable, I could get a better routine, but, it’s just all over the place. I try sooo hard to track patterns but I fail most times. Just feels like my vessel is broken, and it’s just breaking my heart and soul too. Too many years, too many surgeries, too many I’m sorrys.

I just dunno what's next, how will I survive, what will I do for my life? Will I be alone? It’s hard enough for me to handle each day, let alone someone not in my shoes understanding and having empathy and patience. Understanding. I’m so scared I’m just gonna be sick forever. And get worse. And be alone. 

My dreams of being a mom and having a family have all but been smothered, as even if I found someone who understood, and had time to deal with my managing, the chance is 50-50 that the baby will have the same exact bs. Breaks my heart. I was raised to be a mother, consciously or unconsciously, and i wanted that. And I can’t even hold a baby now without hours or days of pain, or a quick sublux and me possibly dropping a child.

I can’t see myself getting older. I see my parents finally aging, and I don’t know. I don’t know who will be around to help me.

I dunno how bad its gonna get. I’d rather have a six-month-to-live notice than this.

Bawling my eyes out. Snot all over the place. Can’t stop crying.