Chapter 15 - Being Compliant

 

Being Compliant

 

It might seem the simplest thing in the world.  I was assigned to wear compression garments, a sleeve that extended from wrist to upper arm and a gauntlet to wear on my hand.  (This happened eventually, my first year was trial and error.)  So I got them, I put them on.  End of story.  As far as the physicality of wearing garments, it isn’t rocket science.

Not so fast.  The fit is important.  Garments come in different sizes, styles, compression levels as well as colors and textures.  But the fit for a lymphedema limb is a moving target.  Fluids gather and wane and the measurements show that.  My physiotherapists were aware of the options and guided me to type and brand names that they believed would work for me.  Occasionally I didn’t approve but eventually I knew what I needed.  The fit was never going to be perfect but it was perfect enough.  Then, because life can’t possibly be simple, availability became an issue as the manufacturers discontinued my favorites.   Substitutes had to be found which again initiated a trial and error process. 

At times the quality checks of the garments missed a flaw or two.  I wore those garments anyway.  What else could I do?  Well, I could be a proactive consumer and make complaints.   I hadn’t thought of that, but now I will and so will you.  Sometimes I snagged them and then for the duration of the garment’s life (about 4 months) I wore them anyway.  What else could I do?  Well, I could wear old garments. Maybe don’t wear your brand new pair when you were trimming the rose bush, or staining the deck.  It might mean that the job at hand was slightly delayed, but preventing damage to garments is doable.  It just takes a little thought and action. 

Care of the garments is important too.  Again, it seemed simple.  Wear them and wash them, dry them and wear them again.  In many ways, they are clothes.  Ones that you wear daily and ones that aren’t pretty but generally the same precautions apply.   It occurs to me that I’ve brushed over something here.  My first garments got horribly dirty and stained because I thought they would wash up easily.  It was a learning curve.  My daily life had to include thought about garment care; I had to think before I proceeded.

I find it amusing how long it was before I learnt that the recommendation is to wash garments daily.  I believe I had worn my garments faithfully for over three years when I became aware of this guideline.  Who told me?  A brand new physiotherapist was assigned to me at one appointment and she had a list of questions to ask.  I can only assume that I was supposed to know this already.   Have I mentioned how this is a learning curve? 

It was explained to me that the washing action helped to realign the fabric of the compression garments.  In short, it made them work again while wearing them day after day reduced their effectiveness as the fabric stretched. Regular washing of compression garments is important for proper hygiene and to extend the life of the garment.  Manufacturer’s instructions include recommended soap products.  I use a generic brand for fine fabrics.    

It wasn’t welcome news, I disliked washing my garments.  It is done by hand and I struggle to squeeze.  Sometimes I use too much soap and I don’t get it rinsed out properly.  The residue would then irritate my skin and meticulous skin care is the name of the game. If I left this hand laundry too late, the garments would still be damp in the morning.  Damp garments will irritate the skin as well – like a diaper rash.  So on, and so on.  (FYI. My routine does not include wearing garments at night.)

But I learnt that washing garments was not the same as laundering.  I was to rinse them daily.  A friend told me how to roll my rinsed or laundered garments up in a towel, then pushing down or  even repeating with a second towel, before I spread them out to dry, over a net.  This ensured they would dry overnight.  These are little tips, but truly valuable.  There, now you know too. 

A couple more notes about garments – keep your old garments to use when you’re in for a dirty job or some grubby fun. 

Garments can be doubled up when necessary such as do a lifting job or to travel by air.  Just make sure that the doubling doesn’t create any spots that bind. 

When I need to have a quick compression unit for my fingers- which sometimes swell, I reach back into my saved garments and retrieve the very first, very ugly and very ill-treated glove and bring it into service.  The ugly glove was ill-treated by me as I scissor snipped it numerous times in order to give my swollen and painful hand some relief.   Consequently the borrowed glove wasn’t returned to my physiotherapist.  It is too ugly for me to wear in public, so I’ve popped an old gauntlet overtop.  I saw how that my wrist might be over-compressed; so I cut into the wrist area of the gauntlet to allow for expansion.  This snip was done in the most discreet location I could discover. 

Stuff a few old garments in handy places, but remember that once the garment has lost its elasticity, the compression is no longer effective. 

 

“A lymphedema patient has to be mindful of circulation problems at all times.”

I have to confess, that I thought I had pretty much said all I had to say about garments, when suddenly the sleeve that I am wearing now developed a nasty tendency to curl at the wrist.  I would become aware of the problem and I would smooth it out.  Then it would be curled again. 

To the uninitiated reader this might beg the question – so what?  The roll at the wrist irritated my arm and the pain came back.  There is what I would call a ring of blocked fluid around my wrist.  Any blockage has the potential to become scarred tissue which aggravates the problems and can become permanent. 

I’m still working with this problem as I write.  I have cut tiny incisions into the offending roll and that was okay yesterday.  Scissors can be your best friend.  Today the rolling has begun again, even with the cutting that I have done.  So I intend to wash the modified garment, use the clamp it straight action of sticks and clothespins and see if I can get comfort for the duration of the day.  The part of this that looms as a major concern is that I have two more sleeves of the same design which will be my garments for the year.  They appear to have a similar construction and may behave the same way. 

I wear off-the-shelf products as opposed to custom made.  I have a full length sleeve, with a silicone grip band at the top made by one manufacturer, and a thumb enclosed fingers free gauntlet of another brand name.  They are both at compression level of 20-30mmHg. They fit me and they work - for now.  But I try my new garments on every time, because the supplies and designs are subject to change.  I do receive partial funding for these garments and I am allowed three sets per year.  There is still a significant bill that I pay and I often think that I would sooner be buying clothes than garments. 

I have an annual measurement to monitor the lymphedema arm against my other arm.  The difference is considered to be the amount of excess fluid that my affected arm has retained. 

Then I have another measurement taken by my garment outlet professionals.  This is to ensure properly fitting garments. 

So simple isn’t as simple as you might think.