Medicine and music.

Thought for today.

The often-overlooked toll

A comment by an anonymous reader of my blog got me to thinking about the toll having RA takes on you.  We - and our health care providers - acknowledge this toll and understand why it exists, but all too often we forget the toll that all of this takes on the people we love and who love us.

There are a huge variety of emotions which accompany this disease when it's you it's affecting, you in pain, you feeling helpless.  That said, it's also incredibly important to recognise and acknowledge the emotions that  those around you are experiencing.

Guilt is a big one.  I know that deep down my parents experience some parental guilt, knowing that RA runs in both their families and they have been fortunate enough to not experience it themselves.  Guilt that their daughter has won the genetic lottery and landed RA.  Guilt that they have produced one incredibly fit, healthy, intelligent and compassionate child; and one with RA.  My brother too feels guilt that I am in pain on a daily basis, though he's not quite as adept at expressing his emotions.  I know he feels guilt though because every now and again he will tell me that "It's not fair.".  

Helplessness is a recurring theme for loved ones, simply because RA seems to create incredibly strong, he independent people.  We are a different breed of human being, carrying on until we can carry no more.  We're also a very staunchly proud group of people, which means we a) tend not to ask for help, and b) tend not to accept help when its offered.  While I get it (heck, I'm guiltier of it than most people!), sometimes the offer of help is your family, friends and loved ones' way of saying "Please let me do something, I feel so helpless".  Remember that a little concession on your part can help them to feel more useful, which allows them to be a better support for you.

Anger is highly present in those who love someone with RA.  It also mixes in with Grief, and the two tend to go hand in hand.  We have all been (or are still going) through a grieving process, acknowledging the changes in our bodies and lifestyles.  Don't get me wrong, even after almost 11 years I still have moments where I have to allow myself to grieve for the life and lifestyle I've lost.  I'm not a psychologist but I think it's healthy.  I still have days where I am angry that I can't play the violin or netball any more, but at the same time my diagnosis made me more acutely aware of the things that I have gained as a result.  Swings and roundabouts.

Pride is an emotion that you don't always see, but I can guarantee it's there.  Little achievements - hanging the washing on the line, cooking dinner, drying hair - mean very little to anyone else, but to the people who truly love you, the opportunity to celebrate the little victories, no matter how small, allows them to feel as though they're joining you on the journey.  Keeping them involved allows them to feel useful, as well as providing all-important support and company for you!  I know that my family and close friends are very proud of what I achieve on a daily basis, which in turn makes me proud that I am making them proud, and so on and so forth.  

Well, that's all my thoughts for now.  I have caught my first head cold of the season and my head is full of things other than brains and useful grey matter, which means an early night is called for.  Good night all!

The three things nobody tells you about RA.

When I was diagnosed, I was in the middle of a university degree, learning about RA.  'Twas incredibly fortuitous really - it definitely sped up the diagnosis process!

The text books about RA gave me a fair idea of what I was in for - granted, they didn't paint the picture in particularly accurate colours, but I knew I was gonna have sore joints to rival people in their 90s.  But the longer I live with Arthur, the more I realise nobody had ever told me about him.

Night sweats

They warn you about a persistent low-grade fever, but they don't warn you exactly how feverish things can get!  Boy, are these fun.  (I know sarcasm is considered by many to be the lowest form of wit, but I kid you not when I say that sarcasm is often the only thing that saves my sanity.)  I always know I'm in for an especially hellish kind of day or three following these.  Case in point - it is now single figures overnight here, which meant the addition of a blanket and changing into warmer pyjamas last week.  On Tuesday night, I found myself in a pool of my own sweat, sitting on a towel on the couch under the air conditioner.  Still burning up. 

Muscle aches

It all makes sense really - the hip bone's connected to the back bone;

The back bone's connected to the neck bone,

The neck bone's connected to the head bone... and all 'round dem bones is muscles!  

I have learned that once a particular joint has started to flare, you can almost guarantee that the tendons, ligaments and muscles that surround it will soon start to hurt, and then all hell breaks loose.  Between my physio and my massage therapist I try my best to keep the soft tissue soft, so that the bones can do their thing.  But 'arthritis' still conjures up images of sore bones, with no warning that the rest of your body won't be any less painful!

Losing fat

This sounds awesome, but it's not quite that exciting.  Because one of the places you lose fat from (without any effort, may I add) when you have RA is the bottoms of your feet.  Yes.  You read right.  The. Soles. Of.  Your.  Feet.

Of all the places a girl wants to shed a bit of extra adipose, the feet are the least of our worries.  But once it starts to go, it's actually very painful and makes life difficult.  All of a sudden I can feel my bones not only grinding against each other, but against the floor, the soles of my shoes, the whole thing.  Not ideal - perhaps I can lobby the extra adipose on my hips to relocate a little further south!  (I have been purposely building my stockpile for just this purpose!)

I often wonder if there were a book of what living with RA is really like, if people would be more or less accepting of this diagnosis.  At the moment, many people seem to think it's just some "achy joints" and not worthy of sick days - blissfully unaware that the real picture, the real life we live, is actually much more than a few aches and pains.  I won't lie, it's been so long since I got a good night's sleep that I am almost delirious with the exhaustion - and if someone offered me a painless existence in exchange for my soul, I would trade it in a heartbeat.  But my diagnosis?  If my having RA saves my brother the pain, the heartache, and the turmoil - then I wouldn't change a thing.