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.

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6 thoughts on “Each man’s life touches so many other lives.

  1. Anna says:

    I’m happy to hear our visit didn’t totally wreck you. We had such a great time. G misses his cousins already. xoxoxo

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  2. Curiosity says:

    That’s my symptom set when I’ve really overdone it mentally! I hate it. I would be super grateful to be stuck with everything else, but be able to think, and talk, and see people as long as I wanted. And I also HATE missing out on my normal conversation style, humour, etc. So frustrating. But humour takes extra effort that I just don’t always have in me. I know exactly what you mean about not being able to focus or form words too. It’s always a really bad sign. I lived in a constant state of all that for months after my MegaCrash before I realized that it was a sign of backlash rather than just a constant and inevitable state of being, so I figure you’re already ahead of the game. 😉

    Sorry you had to deal with the symptoms, but I’m glad you’re not completely wiped out. Happy holidays!

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    • E. Milo says:

      When I was rating my symptoms for the doctor the other day, I kept saying each one ranges from a 2 to a 10 depending on the day or time of day. ~Except the brain fog. I said that was a 2 to 4. Not because it is less severe, but because it impacts my life less than pain and muscle problems. When I can barely speak, I usually go to bed. It’s frustrating, yes, but I’m good at hiding it. However, I am ACUTELY aware of the fact that, if I ever went back to work, this would really impact the job I do.
      But, my god, I miss humour, banter, quick quips, sarcastic wit… All I can muster lately is kind of depressing irony once in a while. That’s why we’ll be sitting at a dinner table laughing our asses off one day ~ loudly. We deserve it!

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  3. […] head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other […]

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  4. […] On New Year’s Eve I was just starting to feel better after the very low low of December. On Christmas Eve, while the men were in the kitchen, I told my sister that if things didn’t change, I […]

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  5. […] number one most evil and debilitating symptom of this disease. I’ve written about them before here and here and here. Don’t get me wrong, PEM is by far the most disabling and cruel aspect of […]

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