Tag Archives: pain

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Tipping the Earth off its Axis

I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:

1,500
1,800
2,000
2,050
2,300
2,450
2,900
2,950

And then…

2,450
2,300
2,200
1,400
1,200

That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.

I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?

I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.

I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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I know why the caged horse jiggles.

I’m kind of excited.

I tried the CPAP machine again the other night and took it off after a few hours of it driving me bananas. I thought it was hopeless, but, I read up on people’s experiences a bit more and it seems everyone has a difficult time adapting and the best advice is to go in with a positive attiutude… So, I tried again. This time with a smile. It was still a nightmare. Mine is a body that needs to move in the night. I’m in a lot of pain when I stay in one position, so I toss and turn quite a bit. EVERY time I moved, the mask sprung a leak and I had to come awake to adjust it. It doesn’t fit the bridge of my nose, so I have a band aid and a wad of toilet paper holding in the air at the top of the mask. The band aid fell off three times and I kept getting up and getting progressively bigger, stronger ones. I felt like I woke up 100 times when my mouth dropped open and the air filled my cheeks and made them flutter like a skydiver. I woke up a few times with pains in my belly from trapped gas and air… HOWEVER, look at my Zeo graph from last night:

If you’ll recall, my graphs have a tendency to look like this one ~ the top line being “W” for “Wake”:

So, I’m kind of excited. Maybe I was awake a lot between 11pm and 3am (as you can see, the first picture only spans 2am to 10am and I turned out the light at around 11pm) and I woke up briefly when I moved in the night, but not enough to count on the graph… And maybe, just maybe, the CPAP stopped the constant waking from the apnea that I’m usually not consciously aware of, but which affects me throughout my waking life…

In the last few weeks, I finally got some abnormal tests, which shouldn’t make me happy, but it DOES. I have sleep apnea ~ I was waking up 49 times an hour! ~ I have low zinc and iron, I have no good bacteria in my gut (thank god no one put me on antibiotics; that could be pretty dangerous). There are some natural interventions that might actually make me feel much better.

This morning, my eyes are blood shot and my neck is killing me and my back is very stiff from trying not to move in the night, but I’m hopeful. I’ve also felt stronger in the last week since my big headache went away (I still have a daily headache, but it is my normal, manageable one). It’s interesting ~ I’m in the same physical pain, I’m being hit by the same ol’ exhaustion, but I’ve been able to keep up with my stretches without injury (I’m being very careful to take a hot shower or bath before stretching so my muscles are warm)… I’ve been able to eat rather than feeling too fluish to be bothered… I’ve been able to watch a movie and laugh… Each of the last 4 days I’ve taken over 2,000 steps. By comparison, when I had my headache it was more like 500 and, in the weeks before the headache, it was 1,000-1,500. I’ve been jiggling my legs again. I know that sounds weird, but I was always a jiggler while sitting or watching TV ~ my feet would be moving ceaselessly or my knee would be bobbing up and down. It always distracted my husband. I was the girl in the movie theatre that was making your seat shake from down the row. That movement totally went away with the exhaustion. I sit, bricked, like a lump of concrete, no interaction, barely able to turn my head or answer a question. Lately, I’ve noticed the jiggles return. I told my acupuncturist that I felt like a racehorse in the cage before they go down the track. Like I want to sprint but I’m caged and antsy. I know why the caged horse jiggles.

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The Evil Calcium Headache

Ok, I’m back in the land of the living. I can’t describe the last week adequately. I considered going to the ER about once every ten minutes, but I knew they’d want to do a lumbar puncture and I knew I wouldn’t let them (because of aforementioned LP that didn’t heal properly), so I stayed put in bed. Head pain, I think, is the most debilitating pain there is. It takes away all your senses. You can’t open your eyes to light, you can’t move your eyes up and down because it hurts too much, you can’t stand noise, you can’t chew, you can’t stand people touching you or talking to you… you can’t even be upright. At least with most of my back pain I can watch TV. The other day, I was talking to my husband on the phone, telling him how bad the pain was on the right side of my head. As we spoke, I felt it zig zag over to the left. It was bizarre. It was like I could feel a little pain worm traveling through my brain to the other side. I had just said, Thank god half my head is out of pain~ it makes it more bearable. As I finished the sentence, the pain had completely switched sides. That night, the pain radiated down into the right side of my jaw for about an hour. Yesterday, it was pretty much gone except a residual cramping. Every time I tensed something ~ coughed or pushed my pee out too quickly ~ the right side of my head would light up. It was like somebody blowing on embers. It would erupt into fire briefly and then go back to smoldering again.

Now, here’s the kicker. I realise it makes sense to say it’s another unexplainable symptom of ME or it’s because I came off the pill or it was just a ridiculously bad migraine, but I’m pretty sure it was from my calcium supplement. That was the only thing that changed. I started taking powdered calcium citrate in OJ, thinking I was being so responsible. My husband was googling help for me and saw that too much calcium and too little magnesium can cause headaches. Then I found this site. If you don’t want to read all the comments like I did, I’ll sum it up: one person after another saying their calcium supplement caused terrible headaches. Many of them saying they got the worst headache of their lives and that it was all on one side. Mine was invading my entire head for many of the days, but it was certainly only the right side the last two days. YOU FOUND THE CAUSE! I whispered to my husband, but my eyes said block capitals like that: YOU SAVED ME! The pain started to ease up a day after I stopped the calcium and it was gone two days later. Be warned, everyone! Especially if you have one of these sensitive systems (a blessing and a curse).

Now my dilemma is how to keep my bones strong since I have osteopenia, don’t eat dairy, don’t do weight-bearing exercise, I’m petite and had hyperthyroidism for years (the latter two my doc said contributed to osteopenia in the first place. The dairy and exercise, obviously, are omitted because of ME). Honestly, though, I’m not touching a calcium supplement for a while. I’d rather live in the now without a headache.

I’m grateful I don’t have a headache!!!!!!

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Getting an MRI (brain and cervical spine).

If you read no further, take this to heart: MRIs are nothing to worry about, even if you are a panicky person. Feel free to jump to the MRI tips below (in blue) if you are interested in my feedback. Now, to the details of my visit:

I’ve had an MRI before ~ a few years ago for my neck before I was sick. It never occurred to me at the time to research what the scan was like or prepare in any way. They asked me if I was claustrophobic and I said no, but, when they put me in that tube, I opened my eyes, saw how close it was and freaked out. I didn’t freak out outwardly, I just started to get that hammering heart and flush of fear and thought, Oh, maybe I am claustrophobic. It was so close to my face that my breath ricocheted back at me and made it feel like I was in a coffin, buried alive. The test didn’t take long and I talked myself down the same way I do when I get on a plane: Are you going to get off the plane now that they’ve closed the doors? No? Well, then there is absolutely no point in being scared. It’s out of your hands. That’s exactly what I did: Are you going to NOT have the MRI? No? Then deal with the closeness of the tube.

This time around, however, I’ve been sick for a year and I’m a much more anxious person than I used to be, so I thought it would be a more horrible experience. It turns out the machines at the hospital versus the clinic I went to the first time are roomy. And I’d learned my lesson and brought an eye mask.

So, my husband drove me to the hospital and, for the first time in my life, I had to be pushed in a wheelchair to the radiology clinic, which was 100 miles from the parking garage. “Park your pride at home”, says Dr. Bested, so I did. Wheelchairs are good for me. Our MRI tech, Kevin, was amazing. All techs are not created equal. He answered my questions about the contrast (which I opted not to get because, as my husband said, if it can go wrong, it will go wrong with me), he offered me the old scanner with music or the new scanner without music, but with the tube much further from your face (I chose the latter after looking at it ~ it was bright and spacious). Kevin assured me that people make the techs stop the scan all the time, so not to be embarrassed if that happened. He put a blanket over my feet, a towel under my neck, offered to loosen my headphones (which I SHOULD have taken him up on ~ do whatever you can to be comfortable). He talked to me in between every scan and allowed me to move and adjust. The scan itself was no problem. The worst part was how hot it got under my back and, because I have fever episodes as part of my illness, it started to freak me out that I was having a reaction or a meltdown or a fever or whatever. Kevin said, “Pretend it is a heating pad on a massage table and you are getting a wonderful massage.” Perfect. But turn that heating pad down, for god’s sake!

Turns out the new fancy machine was having some problems, giving “error” messages (my husband said to Kevin, I told you: if it can go wrong, it will with her! I said to Kevin, That magnet just couldn’t handle my big brain ~ the activity threw it off its game :-)), so I had to be moved to the old machine after all. I had to wait another hour in between scans and Kevin gave me a juice and a blanket. Angel! The second round was rough. Kevin was gone and the new tech didn’t communicate clearly at all. I like to know when there is a pause between the scans and how long the next one is going to be and be warned when a particularly loud part is coming. None of those things happened with the new tech. It also turns out cervical spine scans are worse than brain scans. They put you in a different head cradle which isn’t wide enough for the thick, noise-cancelling headphones (or my head isn’t big enough to clear the top of it), so I was given flimsy airplane-ish headphones instead. These didn’t let me hear the music, didn’t block out the sirens and hammering and, to make matters worse, one of my ear plugs was falling out. The noise was BY FAR the worst aspect of this scan. It was like the day I tried to go to the cinema and had to leave because the sound system caused my brain to melt and I burst into tears. So I meditated on blocking my ear canals and taking myself out of the situation. I actually fell asleep, believe it or not. Just for a moment or two. Enough to jerk myself awake and probably mess up the picture quality a little.

4.5 hours later, I was able to leave and went home to bed. I’m happy it’s done because I am not doing well the last few days. I’m in a whole lot of pain. If I could get rid of my headache and neck/back pain, I would be a different person. My eyes are sunken from not sleeping and my mouth is pinched from grimacing. I look so much older. I look like an older, tortured version of myself.

Once again, family, I am so sorry to those of you that I am not emailing back because I’m writing the blog instead, but this keeps everyone up to date and I can only manage one computer task a day. The phone is a mountain I try to avoid climbing for the most part, so I apologise to those of you I haven’t called back, also. Tomorrow, I’m back to the hospital for my sleep study results. Joy.

So, here are my tips/warnings to make an MRI easy:

1. Wear clothes with no metal! Otherwise you have to take off everything and wear a hospital gown and freeze for the majority of the time.

2. If you are cold/heat sensitive, dress appropriately. It is cold in the hospital, but can get hot in the tube.

3. Don’t be hungry or thirsty going in to the appointment because my 2 hour visit turned into 4.5 hours.

4. Suck on a lozenge before you go in to the MRI so you don’t have any sort of tickle in your throat that will cause you to cough or move.

5. Make sure the ear plugs are in properly. One of mine was falling out when they started my cervical spine scan and I think I have hearing damage on that side, swear to god.

6. Make sure the headphones are on your ears properly for the same reason as the ear plugs. Nevermind the music, that’s not the concern~ they are very important for protection from the noise.

7. If you have a painful back/neck or fibromyalgia, make sure the blankets underneath you don’t have ridges and bumps. You have to lie still on those for a long time and they can start to feel like torture. Also, make sure your neck, back and head are in the best position possible to not cause pain and seizing up before the scan starts. Some techs don’t give you a chance to adjust in between pictures.

8. Put the eye mask on before they put the coil helmet thing over your face. Put the eye mask on and, after that, DO NOT move your head or open your eyes. This isn’t like peaking through your fingers at a scary movie where you’re not looking but you actually are ~ do not look, it’s as simple as that. You do not want to know how close the face mask is to your face, it will only cause anxiety and claustrophobia. Close your eyes: You are meditating in some nice place with your eye shade on, that’s all you know. If you open your eyes, it breaks the spell and, if you adjust your head or arch your neck, your nose will touch the thing over your face and you’ll realise how close it is and it will break the spell!

9. Meditate in your head, drown out the noise. I found that if I pretended that the noise was the machine curing my disease, I started to love the MRI. I pretended I was in the futuristic pod from Aliens/Hunger Games/Prometheus ~ one of those movies ~ and the robotic arms were fixing me, which made me be happy for the noise. Fix me, tube!

10. Don’t fall asleep if you’re a twitcher or a gasper-of-breath because it causes you to move and might affect the pictures.

11. If the tube under you gets very hot (and it does ~ it can make you freak out a little), pretend it is a warm pad on a massage table and you are relaxed and safe.

12. Know that if you panic and have to make them stop, it is okay ~ it happens ALL THE TIME.

13. If you are cold, ask for a blanket.

14. If you are in pain and can take a pain killer to make lying on a hard surface easier, do it. If you are able to take a Xanax or something, do it.

15. If you are noise-sensitive, don’t get an MRI if you have the choice.

16. Remind yourself that people have MRIs done constantly. No big deal.

I am grateful for my brain. I am actually hoping that they find something wrong in the brain MRI ~ I would be happy to have any other diagnosis but the one I have ~ but, if they don’t (and they won’t), I am grateful for my healthy, over-active, analytic, curious, obsessive, controlling, detail-oriented, micro-managing brain. Even if all your neurotransmitters are fucked up and you NEVER STOP HURTING, I still love you, Brain. Thank you for keeping me alive.