HOW DO YOU FEEL ABOUT COMPRESSION?

How about I hate all of it! The garments, the wrapping, the night garments... Just copy and past the whole second paragraph from Suzy and that pretty much sums up how I feel as well.

I get it, and I'm with you, Binney. I don't like clothing tight anywhere. The first thing I do when I get home is take off my bra and my shoes. And there were times when I was doing wrapping regularly when I just had to tear it all off. It was more an emotional thing than a physical thing. I do tolerate the night sleeve better than wrapping, and I've thought that was because I knew I could get it off easier if I wanted too! I tolerate the regular sleeve/glove ok, but then my LE is mild and I only wear it for physical activity or long periods of inactivity. (I know that sounds wierd, but like for a day long drive or a day full of long meetings I need it as well as when I am going to be using it a lot). Still, there are times when I just have to. tear. it. off. I can't wear turtlenecks either, I get that same feeling. I'm mildly claustrophobic in general.

I have no clausterphobic/tight clothing issues.  That's not where my mental instability comes from. 

 Back in the day, I could wear jeans so tight that if you fell, it would take a crane to get you back upright. 

And I don't physically 'mind' the bandages...I just hate the rigamarole of getting them on, then getting them off, then rolling them up....I'm such a whiner.

I don't feel claustrophobic in any of my garments at all.  I've never really been a claustrophobic person, although my mother is and I think sometimes when I was a kid I absorbed some of her fear about tight places.  But mostly I'm fine in them.  Used to like to go caving.  But I've never liked tight clothing, although I think that is largely a body image thing.

The most difficult thing about the LE stuff for me is not physical, it's dealing the comments, keeping it clean.  And the loss of the way my arm used to look. 

Am editing this post to include that there's a huge difference if the garment doesn't fit right!  I thought my struggles getting a sleeve (and glove, I only wear as-needed) were a lot, but compared to many women on this board they weren't too bad.  My stuff that didn't fit well did definitely annoy me - all the tugging - and irritated my upper arm where I have some neuropathic pain.  

I hate confined places and think less is more in the clothing department (if I did not have a teenage son in the home I would probably run around the house naked).  I cannot sleep with the sheets tucked in at the foot of the bed (I always have one foot/leg peeking out from the covers).   That being said, I do struggle with compression and want to take it off at the first possible moment, unfortunately I 'feel' better with proper compression then I do without and since I have an abhorrence to pain...I wear my garments.  

ps I could never wear a turtle neck...It makes me feel like I am choking!

I don't really have much to add other than like many here, I like everything loose.  Watch, rings, clothing.  Turtlenecks.......FORGET IT.  If I ever had one I made it into a cowl neck with all my stretching.  My first time wrapped, with each layer I'm sure my eyes just got bigger and bigger as did the circumference of my arm.  I went home thinking OMG, how can I STAND this?  So they got ripped off in the middle of the night.  As the years have passed I now still hate the wrapping but also know how good it makes my arm feel.  But some days I unwrap in more of a fury than others.  It's like ok, I have to wear this but then when it's time to take them off I can't get out of them fast enough.  So I guess for me I've just gotten used to it as much as one can.  But it seems now I'm wearing even looser clothes.

As for the compression sleeves.......well, my arm never goes down so it normally does feel better to wear one.  Plus it buffers the numbness.  When I wear nothing I usually have my arm well away from my body.  Five years later, the numb feeling still freaks me out a bit.

Binney, I'm not sure any of this is helpful to answering your question but geez, it feels good to type it out.

Thanks.

S. 

I am not claustrophobic - no problems with MRI's and I really like turtle necks.

I actually like the way my arm feels when it is wrapped. I usually only wrap at night and my biggest gripe is that I get hot...but that may still be hot flashes. I'm not sure.

However, I hate wearing my glove. I feel overconstricted and can't tolerate it for more then a few hours. I prefer the feel of the wrap even over my most comfortable sleeves too. I don't think that any of this fits with Binney's claustrophobia theory. Although from the other posts, there does seem to be a trend. 

Just reading some of these posts made me squirm.  I hate tight anything, also have trouble just getting into a small car, a crowded subway - caving?  are you kidding?  I can tolerate compression shirts when I have to, but avoid them if at all possible and they come off as soon as possible.  I feel throttled the entire time.  I have had to pull them off in a panic a few times.  I would prefer to go naked, too - which considering my body shape is saying a lot.  Just don't like to be confined at all.  I know it's crazy, but I would rather plan on being cremated than contemplate the thought of my body (I said I know it's crazy) being in a coffin.  Also have skin sensitivity and allergies.  So, to sum up, I haven't had to do any wrapping, as my LE is confined to the trunk, but it's a hurdle every time I have to get into compression.  I'm a big girl, so I do what I have to, but it is an extra effort.  Hope this helps.

Becky, it is the lack of spontaneity that is so annoying: the waking up and knowing it will take 10 or more minutes to take off the wrap .Always having my gear around. Looking like a freak on a plane flight. Feeling so exposed--like somehow all eyes are on me....

Hard to separate how I feel about compression vs. how I feel about compression emotionally.

I don't mind how I feel in the nighttime wrap, but here's my current challenge--my parents are arriving from California in a few days, and last visit, my mother called my estranged younger sister (who thinks bc is catching, like cooties) and told her "how distressed" she was to see me in my wrap. I did ask my mother to talk directly to me--and got this hysterical, tearful reply. Of course my family is like a bunch of middle school girls, and my older sister is the one who ratted her out.... 

Kira 

Interesting thread.  I am quite claustrophobic and avoid crowds and closed in spaces if at all possible.  I have never liked wearing turtleneck tops or jewelry on my hands or arms or any kind of restrictive clothing.  However, I now like wearing my compression bra even though when I first got one I thought I could never wear that kind of Victorian torture garment.  I also like the snug feeling that wrapping gives me and am glad when I put  the sleeve on in the morning.  All of these give me comfort even if they are inconvenient.  What I do not like is all of the time that is required to get these things on and off and the time for wrapping and having to roll the bandages.  (Finally after all of these years I have learned what rolling bandages meant for Clara Barton and other female role models that I was told to read about as a child.  I could never understand why  bandage rolling was a big deal but now I know.)

My conclusion is that in spite of all of the irritations, and there are many, the comfort that compression provides is evidence that I need it.  When I face those who don't quite believe that lymphdema is real I remind myself that it must be real if I am happy to wrap and squeeze parts of myself into tight garments.  

 Small comfort but I will take what I can get.

I am slightly claustrophobic, do not like rings, bracelets, turtlenecks, can't stand any binding clothing.  As soon as I get in the house, the bra, foobs and shoes come off.  I dislike winter because I can't stand to be bundled up in heavy coats, gloves, boots and never wore a hat even when young.  I used to always kid with my sister and ask how she could possibly do all her housework while wearing a long sleeve sweater or button cuff blouse or both.....me I'm always in short sleeve shirts except when I have to go out.

After my initial breast cancer, I started sleeping with pj bottoms only - couldn't stand even a sleeveless tank, although I like sleeping all snuggled and tucked in with covers up over my ears - go figure?   I'm quite happy sleeping with my night garment and have considered a Jovi Pak Combi for daytime wear.

Daytime compression is another matter - very hard for me to tolerate, especially the glove unless it's a softer one like KT.  I feel so constricted - like I'm tied up and bound and can't move freely, so usually hold my hand and arm awkwardly and stiffly, not relaxed or normal.  Wrapping was pretty much the same - either very tight and constricting or looser and then holding my arm stiffly so that the bandages wouldn't fall down.

JoAmn has and she'd love to talk to you about it....Seriously, the photo is of her playing the piano, and she does wear it, and I'm sure she'd talk to you about it.

Kira

KS1--I've seen a sample at the NLN, and the "box glove" is kind of hard to figure out--created by their new OT employee.

My understanding is that no matter whose fault it is, Jovi charges 60$/hour for alterations on the garment--it's why my fitter won't use them.

I just went on their nearly impossible to navigate site, and on alterations, a pdf popped up and now they DON"T charge for alterations--I think--I'd still call them and clarify, because if they don't charge for alterations, why should you buy a warranty to cover them?

NEW!
In an effort to keep costs as low as possible, JoViPak
does not add an additional alteration charge to the price of
their products. If you feel your patient will be reducing in size
within a year following receipt of their garment, you may want
to consider adding JoViPak's PREPAID ALTERATION OPTION to
your initial order. This covers 1 reduction alteration and return
shipping charges for one year.  

also

Custom Garments are now Guaranteed to Fit - provided accurate
measurements and all required patient information have been submitted with
initial order.
NEW!
 

Maybe they realized they were loosing market share to Solaris with their alteration policy

Kira

I have never had a problem with claustrophobia, but have found that compression often makes my arm/boob/back feel worse.  Tried a compression bra -- couldn't stand to have it on for more than a few minutes.  Started this journey with mild arm symptoms (primarily truncal), but therapist was able to get the arm symptoms to go away (yea!!) with MLD, Flexitouch, and nighttime compression sleeve.

 Unfortunately, everything has flared back up (incl. arm) since I flew last weekend without any compression (d'oh!!), and since then I can't tolerate the night sleeve at all or the Underarmour/Spanx that I previously had used in place of a bra. 

 Interestingly, my LE therapist just told me last week that she has 3 patients that can't tolerate any type of compression -- she is planning to raise this issue at an upcoming conference that she's going to.