So this is Christmas…

It’s Christmas Day. I was looking back at my blog archives and saw that in December, 2012 I wrote 13 entries. December, 2013 there are 3 and December, 2014 there are 6. This is actually indicative of how I was doing these years.

In 2012, I had recently become housebound, every evening at around 5pm, my whole body started to hurt in earnest and my headaches were blinding, but I still had (most of) my mental faculties and no neuro symptoms anything like what I experience now.

In December 2013, I was so sick… I was in so much pain, isolated on the floor of my bedroom, hour after hour, and feeling suicidal.

Last year, I was in a reactionary whirlwind. Christmas eve, my tongue swelled up and that night was truly one of the worst I’ve experienced.

This year, though… so far… things are better (she says tentatively, knocking on wood). This is only my third post this month, but it’s more to do with my brain not working very well than with being bedbound with sickness. I feel so much more stable this year. I haven’t had one of my bad nocturnal reactions in eight months, I think. I’m handling my immunoglobulin infusions well. I can eat virtually anything. I crash regularly and feel horrific, but bounce back quicker.

Tuesday, Wednesday and yesterday were good days. God, I love being able to say that. I had three good days. My sister, her boyfriend and their dog arrived yesterday and, because I’m such a nightowl these days, I was able to function from 2pm until 2am, retiring to my bedroom a few times to rest. I had no headache! Let me say that again: I HAD NO HEADACHE! Lights and noise weren’t bothering me. I was tired, but no cognitive symptoms. It was a Christmas miracle. This morning I feel hungover, my head aches, my eyes are sore and I’m very tired and dragging. But it’s still early (1pm ūüėČ) and I have faith that this evening I will be okay. I had one wish for this Christmas: no pain and no fear –and I think, besides dull aches and low-level silent pleading, that wish is coming true.

Gratitude is shooting out of my fingers and toes and the ends of my hair like I swallowed George Bailey’s moon.

Update: I forgot to publish this yesterday. It’s now almost midnight on the night of the 26th. This week came down on me like a pile of bricks today. I had a hypoglycemic episode, hit a wall, felt very nauseous, was having trouble talking, went to bed weak, trembling, shaking with chills. BUT– here I am six hours later and, besides being drained, I’m doing okay, able to finish watching It’s a Wonderful Life with my husband, crying at the end like we do every year.

All in all, this Christmas was a success. Great company, great food, great gifts, great-full. In fact, without a doubt, this Christmas was the best I’ve had health-wise since 2010.

image

Advertisements

Each man’s life touches so many other lives.

I have survived Christmas and I don’t feel terrible ~ as terrible as I could. My sister, her boyfriend and their puppy came over for 3 nights. 4 people, 3 dogs, 3 nights. And it was lovely. I’d tried so hard to rest and save my energy before they came, but I was still hurting every evening.¬†Unfortunately, Christmas Eve was the worst for me. It is our main celebration day and I had gone to bed with a crushing headache on Christmas Eve Eve, which lasted into the morning and all through the night. Typically, I am “okay” until about 5pm. That’s when everything starts to hurt and the headache kicks into high gear. I always go to bed around 9pm. I tried so hard to prolong our Eve, but only made it until 10pm. I have no idea how I looked to everyone on the outside, but, on the inside, I was struggling. The pain in my neck and head was about a 7 out of 10. That’s high. 9 out of 10 and I might be heading to the ER. I couldn’t see: I literally could not focus. Everything and everyone in the room were soft blobs. I couldn’t look at lights: that’s nothing new, but it was heightened. All of our lamps are on dimmers except one which was situated kind of behind my sister’s boyfriend. As we talked, I had to hold up my hands to frame his face with my fingers, blocking out any light around him in order to make out his features. And I kept thinking, Ask him to turn off that lamp, but my brain wouldn’t make that leap. It was easier to block out the light than to try to find the word lamp. This seems to be my version of brain fog. I’m not sure how this symptom affects others, but, at a certain stage, I can’t talk. Well, I can talk, but it is SO difficult. It takes so long to string a sentence together, it simply isn’t worth it. Especially in company because other people aren’t used to waiting while I try to find the words and, if I am talking quietly and get talked over, it’s too much effort to say it again. This isn’t one of the worst symptoms at all, but it might be one of the most frustrating for someone who enjoys quick-witted banter and a good debate and interjecting and laughter… My husband knows by now to not walk away as I’m saying something because it’s difficult for me to turn up the volume. He tries not to talk over me¬†because¬†he knows it’s an effort to say it once, let alone twice. This is much, much worse in the evening. If you want to have a normal conversation with me, have it between 10am and 5pm.

The headaches and accompanying noise sensitivity are by far my most debilitating symptom the last few months. The muscle pain, IBS, stiffness, exhaustion, brain fog, tight chest, flu symptoms and awful sleep ~ I’m used to all of it and it’s all bearable to a certain extent. But, the headaches… there are no words to describe how crippling they are. Every movement makes my brain slam against the inside of my cranium. Touching the base of my skull or the back of my neck feels like it should be bruised black and blue. It is so tender, stretched taut and soft at the same time. Every noise feels like a gun being shot next to my ear and threatens to reduce me to tears or send me to bed: the dogs barking, the opening of cans, my husband putting the foot rest of his recliner down, the bathroom fans, the squeaky dog toys, my phone alerts (which is why it is usually muted and I don’t answer), the kitchen timer going off… But the worst is the TV. We have a TV that supposedly keeps the dialog loud while subduing the action noise. It doesn’t work. If it’s loud enough to hear Harry Bailey say “A toast to my big brother, George, the richest man in town”, it is inevitably too loud as soon as they cheer and start singing Auld Lang Syne. And forget about modern movies. I have been looking forward to watching The Dark Knight Rises since our last failed attempt at going to a cinema (will I EVER be able to again?), but I am so scared of the action, the noise, the bright lights and the length (almost 3 hours). We have to start very early and shoot for a day when my headache isn’t as bad… I miss going to the pictures (as we used to say in the homeland) almost as much as I miss working or going to the dog park. Remember the THX sound at the beginning of movies? I used to turn that up as loud as it could go… surround sound in your own home! It was heaven. Now, I wince just thinking about it.

What I know for sure is sleep dictates how I will feel. Not enough hours or too many times woken up or, god forbid, night sweats and I am not going to be a functioning human being the next day. That’s why I’m scared of starting the Cymbalta. If it makes me sleepless for a few weeks, I could be set back for months. Low-dose naltrexone disrupted my sleep for almost a month and, the day I stopped LDN, was basically the same day I stopped driving, running errands, going for walks etc. That was over 3 months ago. But I will try Cymbalta~ I have to do something for the pain.

St. Stephen’s Day moment of gratitude: I got to celebrate Christmas! I got to have lovely meals and open presents and chat with family and watch movies (with my ears plugged) and enjoy Christmas music and laugh at the dogs playing… It was wonderful. Spending quality time with my sister was priceless and today I’m not in bed, crying in pain: I’m awake, happy, warm, fuzzy and grateful. I love Christmas and it actually happened. I made it! We celebrated!

No man [or woman] is a failure who has friends.

The Finale! Liebster Award Part 3 ~ Answering Questions

I think I will finally have the energy to finish fulfilling the criteria for the Liebster Award by answering¬†Reva’s questions:

What are you proudest of?

This is a hard one. Being proud is so personal. It’s all about you and something you’ve¬†accomplished.¬† I guess I could be proud of my children ~ if I had any. Or proud of my garden if I had created one. Or proud of how I’ve given back to the community or something, but I haven’t. I am proud that I get up every day and don’t give up.¬†I am proud that I am self-aware and honest in my relationships. I am proud that I have dropped insecurities, achieved forgiveness and notice gratitude each day.

What is your favourite colour?

Red. No, green! Ahhhhh… (that’s me being thrown off the bridge)

What inspires you to blog?

The constant, incessant, noisy,¬†obsessive, clamouring,¬†chattering, clattering thoughts in my brain. I have hundreds of unfinished posts, essays, poems, articles and novels bouncing around up there with not enough energy to tame them, groom them, edit them and write them. Also, I really want to keep my family and friends informed about how I’m doing since I’m not usually up for emails and phone calls.

What three things would you grab if your house was burning down?

Well, my two dogs and my husband, of course.

Can you resist chocolate?

No, it’s actually quite bad. My doctor wanted me to stop eating sugar for my elimination diet and, once she saw my yeast levels, reiterated how important this was. But I didn’t do it. I¬†did give up ice cream (except for Almond Bites) and Cadbury’s and Toberlone and Junior Mints… But I still have chocolate every single day, only now it is the Theo bars with 70% cocao. It’s actually quite amazing how quickly your body can change its cravings.

Where did you spend your favourite holiday?

This is a really hard question. There were so many lovely holidays when I was younger and so many in recent years with my whole family together, but I always think back to a trip to Lanzarote with my husband in 2000. We’d left freezing Ireland in January, had a lovely visit with his family in freezing England, been tourists in freezing Scotland and, the day before flying back to America, we walked past one of those discount package-holiday places and they had some cheap two-week all-inclusive deal to the Canary Islands leaving the next day. What made it so wonderful was, we decided there and then, standing on the street, to go to the sun. We sent messages to our jobs, changed our flights (we were flying stand-by, so no charge) and the next day we were in this completely foreign, beautiful volcanic landscape off the coast of Africa with nothing but winter clothes. The food was crappy and neither of us particularly likes sand, so we spent our days reading books in the sun on the balcony. Relaxing and reading book after book. Playing hilarious bingo each night in the hotel bar. No mobile phones, no responsibilities, no illnesses, no allergies, no pills, no fear.

Finish this sentence: One day I will…

…walk on the beach with my dogs again.
…have the energy to cook.
…sleep well.
…eat bread and cheese again.
…be in one place with all my siblings.
…have the energy to get dressed, put on make up, talk, laugh and socialise.
…not be in pain.

If you could be anyone for a day, who would you be?

A dancer. I’d love to be able to twirl and leap and bend and shimmy with abandon ~ and with no repercussions.

Tea or coffee?

Tea. Lyons with milk and sugar. Or, these days, with soy creamer and stevia.

What is one of your oldest memories?

Putting on Kiss concerts with my brothers when we lived in Illinois in… 1978?

What is your favourite movie?

Oh, I can’t answer that! There are so many!! I love Ridley Scott, David Lynch, Mike Leigh, Scorsese, Tarantino, Coen Brothers, Cameron Crowe, Danny Boyle, Coppola, Kubrik, Almodovar, Hitchcock, Fincher, Wilder, Rob Reiner, John Hughes. I could go on… Because it is almost Christmas, I will give a special shout-out to It’s a Wonderful Life, which I watch every single year, no matter what.

Liebster Award Part 1 ~ 11 Things About Myself

I’m afraid I have to¬†fulfill¬†the Liebster Award criteria in increments since I’m not having the best week. So, here’s the first part.

List 11 things about yourself:

1. I was born in Japan.

2. I spent the majority of my formative years in Dublin, Ireland and pine for that city every single day.

3. I’ve been in 27 countries. One of those was an airplane stop (El Salvador) and some of those were only for a day or two (Belgium, Luxembourg, Monaco), but I am so grateful that I traveled where I did while I could. Highlights: Soviet Union, Austria, France, Costa Rica, Morocco.

4. My friends and I were mugged when we were in Morocco. He said, “If I had a black heart, I would kill you and take your money. But, I have a white heart, so I just ask you to give it to me.”

5. Surprisingly, I think the thing I miss most about my pre-M.E. life is laughing. I would laugh so much at work. I miss the banter of those crazy personalities. No matter how bad my day was, I loved my co-workers fiercely. We accepted each other fundamentally, even when we argued… and we always wound up laughing. It’s hard to find opportunities for laughter when you are housebound with no social interaction.

6. I love good movies, books and food in a way that is…voracious. I crave the experiences, revel in the moments and treasure the memories.

7. I used to write poetry. A lot.

8. I cannot abide illogical arguments and will debate to a fault. I want everyone to be fair, just, logical and see all sides~ even if they don’t agree with them.

9. I have two (small, pathetic) tattoos. One done in my teen years with my best friends E. and K. and one done with a needle and Indian ink in a dorm room in college.

10. I was given a brand new Harley Davidson motorbike, plus helmet and leathers by one of my customers when I was a server (no strings attached, I swear!).

11. I have number¬†obsessions. 519 has been following me around for years (and May 19th wound up being the day of my father-in-law’s funeral as well as the first day of my non-working life). 28 has always been significant ~ to the point that I had to sit my fairly-new boyfriend down on the eve of my 28th birthday and explain that I was worried this might be the year I would die (I know, morbid). Interestingly, ten days later, I was in the emergency room with my first case of anaphylactic shock. Even more interesting, I never, ever put that together until right this minute when I looked at my health records. That really was the beginning of the end of my health. My records say: 1977-78: chronic cough; 1987: tonsillectomy; 2001: anaphylaxsis… and then, every year, thereafter, there is something significant.