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Posts Tagged ‘definitions’

I am slowly working on a pain dictionary, or maybe it’s a translation guide, for what I say and what I mean. I find myself playing down how I feel because I don’t want to make a big deal of things. Since it’s rare that I feel perfectly fine, I don’t want to sound like a whiner or an hypochondriac. This means that I haven’t really developed a descriptive language for my various states of being, which makes it even harder to explain things to folks who don’t share chronic pain experiences.

So here’s a rough draft to start:

“Just tired” – I feel like you do when you haven’t had a good night’s sleep. Sluggish but functional. Judicious application of caffeine helps awareness, if not functionality.

“Tired” – I feel as if I did not sleep at all last night, even if I actually slept 8 or 10 hours. My responses are slow, I’m clumsy, and if you allow me the least excuse I will go back to bed and stay there.

“Exhausted” – I feel as if I just ran a marathon, even if all I did was walk across the room.

“Fatigued” – I feel as if someone has turned up the gravity in my immediate location. I move every slowly and it is an effort to do everything. I am still fine-tuning the differences between tired, exhausted, and fatigued in my experience, but I do sometimes feel more than one, or all of them, at the same time.

“Stiff” – My joints feel like I did heavy work yesterday, whether I actually did or not. Usually things loosen up in an hour or two. I have trouble bending over and getting dressed. My joints pop. A lot. My fine motor skills also tend to be a bit hit-or-miss.

“Achy” – My joints have dull pain and are probably swollen. I have probably already taken OTC arthritis medication and it is only partially or not at all alleviating my discomfort. Cold or humidity usually makes this worse. I probably cannot pop my joints if I try. I am likely to have back twinges or spasms if I push too hard.

“In pain” – I hurt as if I have a physical injury, usually in paired joints at the same time. Unfortunately, depending on how functional I need to be determines what I can and cannot take. I occasionally react strongly to my muscle relaxant, so I can only take it when I do not need to drive or do anything complex. Unfortunately, it does not always work. I take Prednisone when I am in pain and need to function and it works consistently and well, but I try to minimize how often I take it due to side effects.

“Not bad” – usually means “Surprisingly good”. I am feeling all right, despite probably some “just tired” or stiffness. More functional than I expected under the circumstances. This is also usually what I consider to be a “good day”- when how I feel does not keep me from doing things I want/need to do and my mood is good. I could use a few more days like this.

“Okay” – I can function but it’s probably not fun. I am most likely just tired, tired, stiff, achy, or some combination thereof.

“I’ve been better” – I am hurting somewhat. Most likely tired, stiff, and achy, but trying to stay cheerful about it and shouldering through.

“Great!” – I am free of pain and feel rested. It has been a long, long time since I felt great.

Of course, all this becomes more complicated because I can cycle through several states of being in a given day. I can be okay in the morning and then degenerate in the afternoon. This morning was pretty awful but I have improved somewhat, hence the title of this post. I never know which way things are going to go, however. After talking things over with hubby I am taking as easy a day at work as I can and we’ll just do some house-shopping instead of caulking and unpacking after work today. Hopefully a hot shower and early to bed will allow me enough spoons to get through a rough work day tomorrow. Variability makes it hard to plan, however, and of course I worry and stress about it, which does me no favours.

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So, I’ve been catching up after the holidays cruising my favourite health blogs and I’ve been struck by a curious question of semantics: how do I refer to my illness?

When I began seeing my endocrinologist, she forced me to finally face up to the severity of my conditions. Despite seeing a doctor and being treated for almost two years for hypothyroidism, she was the first to actually use the words “chronic disease” to my face. It was a shock- a bucket of cold water thrown over some of my assumptions and the cushy self-perception I had set up. I had already gone through the difficult adjustment of reconciling myself to the fact that I will be dependent on medications for my daily wellness for the rest of my life: I won’t ever have a day that I do not need to take medication, and even throwing off my schedule by just a few hours has serious repercussions on my ability to function.

She was also the first to clarify that this was an autoimmune issue, to force me to address my high cholesterol, and to make me aware that once you develop one autoimmune disease there is a higher likelihood of developing additional autoimmune illnesses (we didn’t know how true that was for me- this was before my RA diagnosis).

Despite my forced epiphany however, I tend to shy away from using the word “disease”. There is a strong association with most people that disease = contagious, and that isn’t the case. Rather than putting on my English teacher glasses and clarifying definitions, it’s easier to use one of the myriad other words used to describe someone with my limited abilities. “Illness” by itself isn’t strong enough- it implies that there is a cure and I will get better, but throw “chronic” in there and people don’t seem to hear it. I’ve noticed a few of my fellow bloggers resorting to using “chronic disability”, but that’s a challenging term for me.

You see, I grew up in a family rife with “disabilities”. My father was deafened at an early age, and my younger sister is legally blind. My aunt is paralysed, and I am dyslexic. All of these are considered different sorts of disabilities, but while none of us may be considered fully functioning from an outside view, I know that each of us is fully capable within our own limitations. A true “disability” would have to be more severe to merit the label in my book, and what I go through, while at times may be debilitating, I just don’t consider to be a true “disability”.

So I’m not sure how to handle this. I already explain on a regular basis the difference between rheumatoid arthritis and other arthritis conditions, do I need to justify how I describe my overall health issues as well?

But it’s so easy to misunderstand, even if you mean well. While sitting in the waiting room for my rheumatologist, a woman next to me had a hacking cough. I asked her if a cough drop would help- it sounded terribly uncomfortable. She gave me a tired smile and explained that she has chronic asthma, but thanks for the offer. She then went on to explain that it wasn’t contagious, and I felt the need to apologise and let her know that I truly understand. I felt as if I was one of those people asking an uninformed question, ad it reminded me that it’s almost impossible to know what’s going on with someone else’s health without asking.

So, a quick poll: how do you respond when someone asks what’s wrong? How do you describe your condition? Is it a chronic illness, disease, disability, or something else?

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So, it’s time to get a little meta about my blogging. I’ve been doing this for a couple weeks now, and aside from my old LiveJournal days this is the longest I have been able to stick to a semi-regular posting schedule. Maybe because I have just such a backlog of stuff in my head related to my health, or maybe because it’s something I deal with daily so there’s always something going on and it’s often on my mind. But, happily, the blog seems to be achieving my main goal of getting this stuff out of my head, and I do feel better for it.

Getting involved with online communities like But You Don’t Look Sick? and ChronicBabe have helped a lot too- reading blogs and sharing with other folks who have similar experiences has been a huge help. I now need to start getting a little braver about sharing this blog with people I see day-to-day, though. The first of my circle of friends and family to see this was actually my personal trainer, who is also a close friend. She is familiar with my health challenges and we work on flexibility and increasing my muscle strength to help deal with the pain and mobility issues associated with RA.

Ironically, I’m having a harder time sharing this with family. It’s not that they don’t know about my health issues, but there is definitely a filter of how much I share with whom, and this may be opening up parts of my experience that I haven’t shared yet.  It’s much easier to share with anonymous web folks, or web friends who do not know me “in real life”. This blog is much more personal than anything I post to Facebook or Twitter, and keeping this separate from my existing online activities gives me a safe place to explore the ups and downs of a constantly changing experience. I hope to stick with this for as long as it helps me sort through my feelings and share the good bits, as well as the not-so-good things.

A few random things:

  • I’m finally beginning to shed the Thanksgiving weight! Maybe I can do some walking today to help it along.
  • There are a lot of definitions of chronic pain out there, so I think this is the one I will use when I’m trying to explain things:

Chronic pain is defined as persistent pain, which can be either continuous or recurrent and of sufficient duration and intensity to adversely affect a patient’s well-being, level of function, and quality of life [R]. http://www.guideline.gov/summary/summary.aspx?doc_id=12998

  • Somewhere I saw a four-level chart for chronic pain, based on how much the pain interferes with daily activity. I remember coming in around II or III- forced to limit hobbies and some change in work behaviour. Has someone seen this scale or have a link? It’s driving me crazy that I can’t find it again. That’s what I get for not saving the link.
  • And yay, Saturday! I slept until almost 9:30, (10 hours!) which was truly delicious. Sadly, it wasn’t unbroken sleep, but I really needed the extra rest. While the rain may make me ache, I do love listening to it while I’m falling asleep- it’s a very soothing sound.
  • I got the lights up in the front window and the garlands on the tree last night, so today I can actually start hanging ornaments. Pictures will follow!

I have been having more problems than usual with clumsiness this week. Stiffness in the morning, especially if I didn’t sleep well, certainly contributes, but it’s still frustrating. I have managed to inflict some minor injury on myself every day so far. I now have bruises on both knees from walking into things, and even managed to cut myself with my won thumbnail (I still haven’t figured that one out- I hardly have any nails to begin with!). I’m hoping this is just related to the cool, damp weather and will ease off soon.

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