Monday, August 1, 2011

Pain is Tiring

One am, up again. as usual. I know that all across the country there are chronic pain patients; sitting at their computers, mindlessly watching tv, possibly struggling through a book, or maybe staring into the fridge for the fifth time that morning. What do we all have in common?


Of course if we share that word with the "normals" out there, our well-meaning friends, our loved ones, all of those who truly mean well, they will share their stories of long nights, the times they couldn't sleep, their family member who had trouble sleeping, or perhaps offer up an old family recipe for a sure-fire sleep-aid; not really understanding how diseases like CRPS and Fibromyalgia, and other types of chronic pain, impact the sleep cycle.

If any of you have ever had a Sleep Study you know how amazing the actual results are; not surprising, just amazing the actual numbers are. They tell you how many hundreds of times per hour you "come awake", how your body does not achieve REM sleep, and explain how pain patients, especially Fibro patients, are constantly awakened during the night and never achieve any real, deep, healing sleep.

You can take it a step further if you are a CRPS patient, especially if you have systemic or full-body CRPS and have severe allodynia; this means a heightened sensitivity to even the slightest touch (could be the sheets on the bed, nightgown/shorts, or even the pressure of the bed itself), vibrations, etc. And even the smallest noise can wake you up if you DO get to sleep because you are extremely sensitive to vibrations. It sounds strange to the partners of CRPS patients out there but we can sometimes feel the change in the room when someone walks in, definitely when a cat or a dog walks across the bed, a fan blowing across the bed, and every little noise outside our windows (motorcycles, trucks going by, people on the stairs or on the street, etc.), all of these things take us from the shallow sleep we might have attained back to a state of being wide awake.

Medications? yeah right. We have tried them all right? They just make us dopey so when we get woken up we can't do anything, ha ha. I think one of the worst feelings is when you are under sleep medications, finally deeply asleep, and get woken up and feel yourself being pulled to the surface of wakefullness (is that a word). Not sure how to describe that other than it feels like you are under water and being dragged to the surface. It might be because a smoke alarm goes off, your child/animal is getting sick, you hear someone yell, a crash nearby, a phone ring, knock on the door; whatever it is. You get pulled out of your sleep. Yikes, it is horrible. Then you get a headache and no chance of going back to sleep.

Normals say, ah, I am going back to bed. But once we are up, pffft, we are up. It stinks.

So, our loved ones are saying to themselves, "Should I not sleep with them? Should I sleep in a separate room so I don't disturb them? Walk on eggshells around them not to wake them? I am afraid they never get any sleep I don't want to wake them when they are sleeping!"

I can understand that thinking, I truly can.

Here is my answer, and I can only speak for myself. I don't want to sleep by myself. I need that contact, that closeness. If I need to be off by myself I can certainly move to another room but always assume I want you next to me, always!

I know that for some patients that is not the case. They prefer to sleep by themselves so it does not hurt to ask, to have that conversation. Be open with your partner about this and all things relating to your pain and disease folks. It will only help in the long run.

As to the noise issue and walking on eggshells? Again, I understand that thinking as well. Again the answer is communication. Talk with your partner. If they need quiet, find a place where that is possible, maybe you can arrange to make one room a quiet room; find an inexpensive way to add some soundproofing to some walls, rugs to the floors, etc. Make it a part of the house that is the furthest away from activities, if this is an issue. Arrange activities so when the patient needs quiet, activities are at a minimum. Or you go for a walk during that time, or you are out with friends, at a book club, or maybe volunteering while they are resting.

But, if they share with you that they are ok with some noise, even if noise bothers them, accept that answer. Sometimes we need to know there are people around. It seems strange but there it is.

Patients can also use sound machines to mask noise. I have used one for years now and it helps a great deal. The rain and waves sounds are my favorites. I also have taken to listening to Hemi-sync CD's. They have helped me a lot, in addition to my meditation. I will be talking more about these two topics next week. it is an exciting topic and there are a great many cd's out there to choose from. I have ordered some new ones I am very excited about getting.

Ok for now folks. Stay cool. Seems everyone is getting blasted with heat across the country.

Looks like the website launch is going to happen this week which is also exciting. Hope everyone enjoys the new look.

Peace, Keith

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