Of course, it is my rheumatoid arthritis that is twisting me into these fun shapes. It seems to be having a lot of fun on my hands and feet. I continue to learn just how many different directions a group of five fingers can point in. My wrists continue to sound like crunchy cellophane in the morning. Really thick crunchy cellophane.

(Speaking of pretzels, does anyone remember those large shopping mall pretzels that were both illuminated and warmed up with a huge heating light? Some of them had rock crystals so large that if they were slightly polished, they could be mounted on a ring. What was up with that? And while I am at the mall, I can’t forget those horrible outfits that the people who worked at Hot Dog on a Stick had to wear.)

So I guess it’s time to once again take out my lovely forearm wrist braces, that actually prevent a lot of this twisting and turning that takes place during the night. I also have a pair of ulnar deviation gloves. (That’s a mouthful.) They have a strap that wraps around each individual finger. They do a really good job…sometimes so much so that I can only wear them for an hour. You see, when my hands are pulled back into their “correct” position, they are no longer in their “natural” position…and that can really hurt.

Now if I could only do a one-armed handstand!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

It feels really weird to wake up crying, but I continue to get more used to it. I used to feel like this cast a pall over my day, but now I know otherwise. When the pain gets so bad that it interrupts my sleep and my dreams, it’s okay to wake up with a few tears.

And as usual, I’ll figure out how to make the most out of my day – despite the rough start.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Sleep, rest of things, O pleasing Deity,
Peace of the soul, which cares dost crucify,
Weary bodies refresh and mollify.
~Ovid, attributed

Yesterday at a little before 4:00 p.m., Rhuematoid Arthritis Guy woke of from a long afternoon nap. The reason I write about this nap is because I had spent most of the morning sleeping in. I started to calculate in my mind how long I had been awake: there was some time in the morning when I woke up to write my blog post and take a bath, there was some time during the middle of the day when I woke up to eat lunch, and there was the time that I had just been awake since waking up from my nap. I figured that I had been awake no more than 2-1/2 hours during the entire day.

In the months right around the time when I was diagnosed with rheumatoid arthritis, I spent a lot of time in bed. The reasons were many. The pain was extreme, and the stiffness in my joints was causing a lot of mobility problems. It was in the middle of winter, and I was dealing with the shock of my diagnosis. (”I am going to have this for life?”) On top of all of this, I was downright depressed. (Coping with the first death of one of my dogs did not make things any easier.) Sleep – and lots of it – seemed to be the answer to all of my problems.

The sleep that I encountered yesterday, however, was none of the above. It was a sleep that I really had no say in. Yes, the pain was bad (which I have experienced many times before), but on top of it I had absolutely no energy – no even enough to stay awake.

Many years into my journey with rheumatoid arthritis, I continued to think of the time I dedicated to sleep and rest as lost time. I was still operating on my pre-RA schedule, which was to squeeze as many activities as possible into my day. I used to feel guilty about needing so much rest.

But not any more. I now know that all of the sleep and rest that I had yesterday was indeed some of the most productive time that I have probably had in a long time. Sure, I was not sitting at my desk working on items on my to-do list, nor was I running errands around town. I was, however, giving my body the rest that it needed in order to deal with the inflammatory process that was taking place. And come to think of it, is there any better definition of productive time?

(Thank you mlwt_lupus, for the following message that you sent me on Twitter: “There are just some things you have to do for yourself – rest is one of them.”)

So at a time of year when most people are starting with the holiday rush that will last for the next five weeks, I too will be joining the madness. I will be busy. Busy resting, that is!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Update: Mallen from Making Lemonade also shares her thoughts about Sleep in her blog post today.

Sure, I’m quite used to receiving minor disturbances during the night when I stay at this hotel. Sometimes, while tossing around during the night, I realize that RA had a party in my room and didn’t invite me…but definitely left me a big mess to clean up. Last night was different, though. I’m talking full bugle-blaring-in-my-ears wake up call. The Goldberg’esque wake up contraption that starts each episode of Wallace and Gromit couldn’t have done a better job…except instead of being dropped into a chair at the dining room and having my breakfast served to me (as if), it felt like I was dropped onto a concrete sidewalk.

No one ever said that being a superhero was going to be an easy job. The worst part, I have to admit, are the hours. I’ve even tacked up a sign on my home office door that says:

Rheumatoid Arthritis Guy
8 a.m. – 6 p.m.

But RA never seems to pay much attention to this sign…it calls whenever it wants to. And last night, it called at 4 a.m.

I guess this is as good a time as any to point out that even though I have made great strides during this past week in regards to my emotional health…my physical health once again seems to be spinning out of control. In addition to appearing where it always shows up first: feet, ankles, knees, hands, wrists, and elbows – this time around it seems to be spreading further. (Unfortunately, RA is not like mayo…the more it spreads, the thicker it actually gets!)

Last week I noticed that it had started venturing into my hips….it never even seemed to have noticed the existence of my hips before, so this was a somewhat ominous sign. And then, two nights ago, it started attacking my shoulders…so much so that for the first time ever, I could see visible signs of swelling and redness in my shoulders. And then last night, my RA must have been like “spinal column and ribcage, what are those doing there? I want to visit!”

During the last five years my (moderate to severe) RA has affected my back and my ribs only a handful of times. Last night was one of this times.

So when I woke up at 4 a.m. with pain absolutely everywhere (actually, “pain” doesn’t even do justice to what it was that I was feeling), for the first time in a long time, I felt myself losing it. Panic. How can I possibly get through this, when even the movement that results from my breathing was creating extreme pain? Before I knew it, I dropped my awareness of everything around me…even my body, to some extent, and focused on my breathing.

Even though reducing my sphere of existence was a frightening experience, it did help. Within a few minutes, the tears (okay, sobs) stopped, and my heart rate lowered. I felt well enough to actually attempt to close my eyes and fall back to sleep. I received hugs from my partner, and I envisioned myself receiving hugs from everyone I know, as I drifted back into sleep.

My last conscious thought was that once the sun came up in a few hours, things were going to be better. I was going to start my day like any other day, and continue to move forward. I would have indeed made it through another very difficult moment.

Here I am.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

*****
Updated: It seems like a lot of us have been having our sleep interrupted recently. Be sure to take a look at Attitude of Gratitude’s Sleepus Interruptus.

Reach the stars,
And fly a fantasy,
Dream a dream,
And what you see will be.
-Theme song from “The Neverending Story”.

Rhuematoid Arthritis Guy has made some great strides during the past couple of months when it comes to accepting the chronic nature of his rheumatoid arthritis.

Even though I have already lived with RA for many years, I sometimes feel like I have only just begun. I think this is partly related to the denial that I continued to cling onto, up until only recently. (As I was written before, it is easy to believe that “after this flare” things will get better and the pain will finally go away.)

Connecting with other people who have lived with rheumatoid arthritis for decades has played a huge role in my acceptance. I am no longer able to hide behind my denial.

I must admit that accepting the chronic nature of rheumatoid arthritis wasn’t easy – it felt like a huge slap in the face. But, it was a necessary, and healing, step as I move forward in my journey with rheumatoid arthritis.

In a certain way, I have gotten quite used to the constant pain and stiffness. During the day, as I go about my activities, I recognize that these symptoms are there – but I do my best to not focus in on them, and instead concentrate on living a life that is as fulfilling as possible. At the same time, however, I have learned to respect these signals – and not push myself too far.

So for the moment, I have learned to live with the chronic pain and inflammation.

I just haven’t learned how to wake up to it.

During the past few days I have come to realize that whenever I wake up (either during the night, or to get out of bed in the morning, and even after midday naps), there is always one thought on my mind, and it’s always the same.

“Won’t this ever go away???”

During the day I have learned to work my rheumatoid arthritis into my life. When I wake up, thought, it’s there front and center. I still haven’t gotten used to this part. To be honest, it continues to be a startling jolt every time I leave my sleep and regain consciousness of my body.

A few months ago, I had an extended period where I was waking up without knowing who I was. It got so bad, that at times I didn’t even know where I was. My mind was an absolute blank, and more than once I was left completely shaken as I scanned the room trying to figure out who and where I was. The longest episodes lasted between 5-10 minutes.

(I was not on any medications at the time, so these lapses could not be blamed on medicinal side-effects.)

As I become more aware of the shock that waking up continues to have on my mind and body, I start to think that I just might have been trying to intentionally forget that I had rheumatoid arthritis when I woke up…but my mind didn’t stop just at that detail…it went on to forget everything else as well.

It “worked” in an odd sort of way, because during those initial few minutes when I was experiencing complete confusion, my physical pain did not register at all.

But as my memory came back, so did my pain.

As I try to move forward with various stages of acceptance, I focus in on a thought that often crosses my mind as I am falling asleep. This  thought  is on one hand so very subtle (in terms of my awareness that I am thinking such a thought) and on the other hand so very strong (in terms of the actual impact it has been having on me).

“The pain is going to be so bad when I wake up.”

(In a way this is true, with morning stiffness and all…but I don’t think this is the most healthy thought to carry into my sleep.)

Just like I have made a conscious effort to incorporate chronic pain into my day, I now know that I also need to incorporate it into the moment when I wake up – the start of my day. If something is never going to end, I might as well go ahead and make it a part of my life – whether I am awake or asleep.

(As as we all know, this is easier said than done. But, our biggest accomplishments often come when we put our mind to something – before we’ve even done what we’ve set forth to do…)

If you haven’t heard the theme song to The Neverending Story for a while (like in the last decade or two, as was my case), take a listen below. Don’t forget: “Dream a dream…and what you see will be.”

[YouTube Video: The Neverending Story, with lyrics.]

(Ahhh…there’s nothing like a flashback to the 80’s, is there!)

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

O sleep, O gentle sleep, nature’s soft nurse…
-William Shakespeare

Rheumatoid Arthritis Guy slept in this morning. I hoped that by adding a few extra hours of sleep I might be able to charge my batteries a little bit more. That’s not how things ended up working out. Still, I was happy to be able to get the extra rest.

While I have always tried to make sure I get enough sleep in terms of quantity, I really haven’t looked too closely at the quality of my sleep – until recently. Looking back, I have no doubt that my rheumatoid arthritis has been having a negative affect on my restorative sleep for quite some time.

I have no problems whatsoever actually falling asleep – as soon as my head hits the pillow, I am usually out within fifteen minutes, if not sooner. My sleep patterns are pretty routine, except for the slight variation that one might expect on the weekend. And I usually wake up, without an alarm clock, at around the same time each morning. (Although my dogs do act somewhat as an alarm clock – it’s amazing the internal clock these pups have, especially when it comes to feeding time!)

It seems that the problems come when I an actually “asleep”. Take last night as a reference point. I woke up at least once an hour. These aren’t full wake ups, as I turn over and fall back asleep in the matter of minutes, but they are wake ups nonetheless – and they are probably preventing me from entering into my deep sleep cycles.

The tell tale sign comes when I actually wake up, though. More often than not, I wake up more tired than when I went to sleep.

I started thinking a bit more about sleep, and asked myself: How much sleep does a superhero need? This is what I found.

“I know that in the Dan Jurgen’s novel Death and Return of Superman it was mentioned that he needs only one hour a night, not to rest his body but to dream (for sanity’s sake).”

And…

“[Superman] doesn’t need to sleep, but he can induce it upon himself.”

Darn, I ended up in those comic book forum once again! Gotta stop doing that… (You should give it a try sometime – really – you wouldn’t believe some of the conversations that you’ll come across!)

So, I found a source that seems to be a little more appropriate to the situation. Living with Rheumatoid Arthritis, a Johns Hopkins Press Health Book (and the best resource I have found yet on living with rheumatoid arthritis).

Individuals with RA require more rest than they did before they developed the condition. Adequate rest takes many forms, including physical, emotional, and “local” rest (described below).

Getting adequate sleep is imperative, because sleep provides healing to the body and the mind. We recommend ten hours of sleep daily, particularly during periods when the arthritis is flared up. You may prefer to sleep eight hours at night, and take two one-hour naps during the day. If getting adequate sleep provides difficult, ask your doctor to recommend or prescribe pain or sleeping medications to help you.

Actual sleep is not the only way to rest physically and emotionally. Taking a fifteen- or twenty-minute break in the morning and afternoon can also make an incredible difference in productivity. Learning and performing stress reduction and relaxation techniques during tense times may be particularly beneficial. During these breaks try to relax your mind and body. If you can manage to lie down with your feet elevated, you’ll increase the benefits of the break. Deep breathing exercises can also markedly reduce fatigue, particularly if combined with meditation. Taking prescribed breaks routinely each day may allow you to avoid the severe exhaustion that occurs when you become overly fatigued.

From time to time it’s good to reflect on the day’s activities. Think about what you did during the day and when you felt most tired. This review will allow you to schedule your rest breaks strategically, which will help you avoid becoming overtired. If necessary, discuss these recommendations with your employer; he or she will probably agree that this is time well spent. It is to everyone’s benefit for you to retain your energy so you can be as efficient and productive as possible.

Local rest means resting specific parts of the body. Getting local rest helps you protect your joints from undue stress; this can be achieved by wearing splints. which can be fabricated to protect the wrists and hands, and by using techniques designed to reduce joint stress.

Starting today, I plan to implement the suggestions described above. I am already doing many of the activities, but on a more piecemeal basis. Maybe if I perform them with more regularity and mindfulness, the result might be that my energy levels start topping out just a little more closer to full.

What are some techniques that have helped you deal with the fatigue of living with rheumatoid arthritis? And more specifically, what has helped you overcome the difficulties that are raised by not being able to achieve restorative sleep during the night?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

The pins and needles that I speak of are literal.

Two days ago, I woke up early in the morning to go to the lab. (This was the first time in a long time that I’ve actually had to set my alarm clock.) I arrived right when the doors opened, submitted my doctor’s orders, paid the bill, and then went into the area where the actual blood samples are taken.

After about five minutes my name was called; I entered the room, sat down, and rolled up my sleeve. Luckily, it has never been difficult to find a vein in my arm. A few minutes later I was pressing down on the cotton ball, as the lab technician put the labels on the four test tubes.

Before I was diagnosed with rheumatoid arthritis, I was one of those persons who could not stand the sight of blood. On the few occasions when I accidentally caught a glance of my blood as it was being drawn, I immediately became dizzy and light headed. Now, with all of the blood work that I have had done since I was diagnosed with rheumatoid arthritis, I am able to look directly at the tube as it fills – without even missing a beat.

This is the first time ever that I have had my blood drawn without a sense of impeding doom. We know the routine…get your blood tested every few months to make sure that the medicines are not causing any liver damage, check for rheumatoid factor levels, and so on. (Although, up until now, I continue to be seronegative. Does this mean that I will always be seronegative?) In the past, I was always a nervous wreck between the time the lab test was performed and I received the results from my rheumatologist. I always expected the worst.

Everything always turned out to be okay, though. The funny thing is, that if there was ever a time to be nervous, now would be the time. You see, I’ve had a strong abdominal pain for about two weeks, and it continues to get worse with each new day. My next appointment with my rheumatologist is Monday afternoon. While I could spend from now until then worrying, I’d much rather adopt a wait-an-see attitude.

The best part of going to the lab was dropping in on a great little hole-in-the-wall breakfast joint that is just around the corner. (When breaking the fast that is required for blood tests, I’m going to do it with style.) At the table next to me was a young girl and her father. Her face was one big smile, as they bought breakfast to her table. Just a few minutes minutes earlier, she had been sitting next to me in the lab with the most worried look on her face, obviously scared at the thought of being poked by a needle. It seems like I’m not the only one who combines a visit to the lab with a visit to this breakfast joint.

Yesterday, I spent two hours late in the afternoon with my acupuncturist. Although I have gone many times in the past, I had not had a visit during the past half year. I had been looking forward to this session all week, and it was great to finally go back.

The person who I see practices electroacupuncture, which is a combination of traditional acupuncture and TENS (transcutaneous electrical nerve stimulation). After my left knee and my right hand were loaded up with needles, the cables were attached and the machine was turned on. Although this may sound like a painful process, for me the results are nothing other than complete bliss. (Can anyone doubt a guy when he uses the word bliss?) Unlike traditional TENS, the electrical massage of electroacupuncture goes directly to the muscles and tendons.

In every session I have had, including yesterday’s, I have fallen asleep immediately. I still don’t know why exactly this happens. The best explanation that I can think of is, that since some of my most chronic pains are temporarily swapped for an absolutely wonderful sensation, my body takes advantage of the opportunity to experience pure, undisturbed sleep. (I don’t think I’m the only who has often woken up more tired than when I went to sleep, after another night where the pain prevented restful sleep.)

I ended up getting a two hour session, instead of just the sixty minutes that I was scheduled for. (The acupuncturist is a close friend of the family.) I often read articles online and discussions in forums where people ask if acupuncture really does help rheumatoid arthritis. All I can say, for a fact, is the for the two hours that I was on the bed, I was in pure heaven. Whether this helps my RA on a “scientific” level, I do not know. What I do know, is that there are few other things that have such an immediate and noticeable positive effect on my mind and body.

As of my current medications are in pill form, the one needle that is not a regular part of my life is the syringe needle. Although I take this back. A month ago today I had my first cortisone injection, and I have two more vials and syringes here in the house that my rheumatologist gave me “in case of an emergency”. (What a great rheumatologist I have, no?) While I was bumped up to methotrexate injections a few years ago, that was called off after it was obvious that is was not relieving my stomach and nausea problems. So while I do not see the syringe on a regular basis, it still is there every now and then.

Having been afraid of needles most of my life, they seem to have become some of my closest friends in my life of rheumatoid arthritis.

Are needles a part of your life?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!