PN(E) and lifestyle changes

[Karyn]

I'm interested in how PNE has changed your life. Not so much the stuff you can't do, but more, how are you working around this to be as productive, or enjoy things as much as you possibly can? For example, doing laundry is now an issue for me. I used to buy the Economy 64 gallon size of detergent, but am no longer able to lift and pour it. Now, I use All - Small & Mighty! I still can't heft the laundry basket, or get the clothes out of the dryer without screaming, but I still feel like I'm able to contribute, at least somewhat. Very unfortunately, my laundry is downstairs in the basement. I can very carefully carry an armful of washables down and I'm fortunate enough to have a hubby take up the clean clothes for me. I've rearranged my fridge and put items I frequently use on the top shelf and towards the front. I love having a garden with flowers and veggies but knew I wouldn't be able to maintain it. So, last spring I got some huge pots, put them on my back stairs at a level where I could stand without bending over and wooo-laaaaa ... (lol!) I've got my veggie and flower garden. Again, this is where hubby comes in. As I would fill each pot, he would take it away and place it for me. No bending to weed! Most of my florals are hung over railings (fence and/or porch), so I can prune and fuss over them, without bending. I do need to get me one of those grabber gadgets. Instead of bending, I can get to ground level by squatting. However, getting back up again is a whole different ball game! I must say that I probably have the cleanest counters and stove top in the world. I buy Meyers Green Day counter top spray (I just LOVE the Basil scent!!!!) and this gives me happy feelings as I'm wiping down the surfaces. I've also changed my entire wardrobe (is there anyone here who hasn't??) to roomy, stretchy, comfy stuff. Although, I sure do miss the jeans (sigh ...).
It goes without saying that having someone to help you is HUGE. I'm very grateful to my husband. I'm unable to fill a pot with water and carry it to the stove but because he helps me, I AM still able to cook every night. Instead of leaning into the oven to tend to things, I now (or my husband) takes whatever I'm baking out and places it on top of the stove. Then it goes back in the oven!
Life is difficult but it IS still good!
Warm regards,
Karyn

[HerMajesty]

My biggest change is that I went from being a cargo pants kind of gal to a total hippie!
I wear flip flops because closed toed shoes bother the neuropathy is my feet, and men's soft cotton XXL boxer shorts over loose hippie skirts. And my nails are ugly; both fingers and toes I have neuropathy so I keep em short so I can rub the ends for relief. So much for vanity. Peace & Love, Dude...may as well stand around at bus stops & give out dasies.
I use my trusty PNE car seat pictured in my other post in this thread.
I carry capsacin with me everywhere because it is my savior, I duck into a bathroom to apply it when the PN is driving me nuts. Literally I have not left the house without it for like 3 years and would panic if I went out and forgot it.
I am an aisle seat only gal, for easy escape too.
Because of medication brain I have pens & notepads everywhere, and MUST write everything down and have a system to rely on my calendar and to-do lists. Tell me something and if I say "ok" and do not write it down, it is gone...and I used to be an extremely reliable, multitasking kind of person. But I am proud that I am still able to juggle all my responsibilities with kids & job very well, because I have worked out a great system of reminders. With memory stuff it is not so much a hopeless thing, as it is that you have to recognize it and compensate for it appropriately.
The meds have also changed my personality and I think made me a more irritating person - my BFF says I have a case of "OSC" - "One Sided Conversation". I can't really keep my mouth shut and at the same time have trouble processing what other people say. So I have to recognize that and make a conscious effort to bite my tongue...I remember to do that like 1/4 of the time.
I also warn new people I meet, I will not remember their name or face and so please greet me and remind me of who they are, and not be offended please as I am on drugs!
I don't think it effects my lfestyle more than that, because I have improved to a decent level of function...but PN is my rather iiritating buddy who is always with me, never actually "gone" for a second.

[Amanda]

Ladies

Life with PNE or PN causes so many adaptations....I miss wearing jeans sooo much...! I was the ever in blue jeans gal....but now wear skirts all the time.
I had my kitchen redesigned to raise up my oven ....so no bending and lifting ever...my fridge is over counter level too....!
i always carry a laptop bag with two pillow inside when im out...people must think Im a business woman until they see the contents of my bag !!!! I dont give a damn about what they think so long as Im comfy.
I long to wear nice clothes but end up wearing somthing loose.....trousers are a total no no.....its not fair!!!
I try not to look at jeans in shops as it really brings me to tears knowing that i cannot wear them anymore.

The more help you can find to make you more comfy the better....even if its hard to accept!!!

[catherine a]

Karyn,

Do you have a laundry trolley? I find this to be excellent. I take the clothes out in small baskets and transfer it to the trolley basket. I hang the peg basket on the wind up handle of my rotary clothes line. No bending. I often ask my kids to carry the baskets out. As for the detergent, I buy small packages when they're at a special price and empty the contnets into a small bucket. No more than 1 kg at a time. I also tied a washing line around my verandah at shoulder height so I wouldn't have to stretch too high. Great for rainy days too. I use an 'S' hook to carry the pegs basket. It easily slides along the rope and no bending to reach the pegs. I used to cry if I dropped something or had to reach into a low down cupboard in the kitchen. Now when my husband or kids see me staring into the cupboard, they'll offer to get it for me. I try to do everything at chest level.
I find I can bend down to my left if I stretch out my bad side. Kind of like a lunge to the left side. Otherwise i get down on my knees on the floor and struggle to pull myself up again. It's getting better though. Not as painful any more. I don't have that heavy, dragging feeling any more that goes with PN.

My plants are also in pots now. I manage to work 3 mornings per week from 7am - 12pm. I'm fortunate to work only 10mins away from home. I do special orders for a major hardware company but my store is in a small country town and it's enough to keep me occupied. I stand most of the time as i have my computer up at standing level. When I do sit, I have an adjustable stool.

Catherine

[Karyn]

These are excellent lifestyle changes! Hermajesty, you had me laughing to the point of tears some times! Thanks so much for sharing!

I try not to look at jeans in shops as it really brings me to tears knowing that i cannot wear them anymore.

I feel the same way! I get ooodles of mail order catalogs every day and of course, there's the perfect- body-PNE-less model on the cover sporting her newest fall fashion jeans! You're right, Amanda - it's not fair!!! So now, I try really hard to not even look at the covers and just immediately throw them away. There! How's that for another lifestyle change?!?!
I'm somewhat amazed at myself. Here I am - can't go food shopping by myself anymore, yet one the things that bothers me the most is that I can't wear jeans! And my solution for the food shopping is to have someone else do it (my husband).
Hi Catherine! No, I don't have a laundry trolley. My laundry is down in my basement and the washer and dryer are side by side, so there's really no where to trolley to. I absolutely love your system, though! And oh how I would love a clothes line!
I'll have to see if we can hook something up for next year (winter is almost upon us in the North East!).

I used to cry if I dropped something or had to reach into a low down cupboard in the kitchen.

I can certainly relate to that!!!

The more help you can find to make you more comfy the better....even if its hard to accept!!!

I think this a very important statement and probably THE BIGGEST lifestyle change most of us make. When you're used to being the care taker for others, it can be very difficult to ask for help for yourself. I know I had a very hard time with that, at the onset of this. But asking for help, at least for me, beats the alternative of not being able to contribute at all!
Warm regards,
Karyn

[Celeste]

I've always thought that every multi-story house should come equipped with a laundry chute and a dumbwaiter--basically an elevator for items too heavy to carry upstairs.

[Quilter 2]

Hi all;
I have calouses on my knees!! I put everthing on the counter that has to be put away in the bottom cabinets and once I'm down, I stay down. I KNEE around my kitchen until everything is put away, then I get up. I make the bed on my knees, my husband does have to tuck in the back because I can't lift the mattress. I never really wore jeans that much, except when we went motorcycle riding, but now I want to wear a pair. I do have elastic waist jeans that are 2 sizes too big, my girlfriend sent them to me. It works, if I have a top that goes over them. What really pisses me off more than anything is the fact that I've had to watch my weight since I was born. I finally got down to a 4 and stayed there for 11 years until the PN hit. Now, I'm in 8's and 10's. I gave most of my clothes away to a friend so that made me feel ok, but damn it still hurts when I look in my closet and see sweat pants in multible colors!!
My washer and dryer is upstairs and when my husband is home he takes it from one to the other. I do it when he's not around and once again down on the knees to get the stuff out and knee it to the bedroom for the folding process. We burn wood for our heat and that is a really big deal for me. First, I need to go downstairs and then put the wood in the stove. My husband cut it small for me to handle while he's working but that means you have to do it more often. Can't win! I'm not working so we sure as heck can't afford the electric heat.
I still sew and cook. My husband gets the mixer out onto the counter the night before he goes to work and the same with the sewing machine. That is a permanent fixture on the dining room table. Very unique center piece. Since I quilt, the pieces are very small and I have to constantly get up and iron, theefore not much sitting. It works for awile.
Karyn, like you, I need to feel like I'm contributing to the household.
By the way, I'm typing this on my knees
Doreen

[Amanda]

I agree Celeste, however these days i live in a single floor apartment so i dont have a stairs to encounter!
The changes we have to accept are numerous....I took for granted when I responded as I seem to wash minimal clothes at a time, less to carry and I put them on a chair when I hang them on my low level line to dry.
My couch is always filled with my many pillows and cushions....along with my ice packs....I take this as normal but dot hink that when visitors come they must think its strange.....after nearly 7 years I have got used to this way of life.
Today I struggled to empty a garden pot at waist level of finished bedding plants....i have the new plants ready to go but my back gave in and ever since Im on ice and with a hot water bottle to soothe the aches.....years ago i would have finished planting many pots at the same time....this is my greatest gripe with this condition...I hate the pacing but have to give into it as otherwise im bedbound for days in agony!!
As for clothes well i can look at catalogues and wish that I could wear trendy clothes....I try my best....but know that im failing! I have an 84 year old neighbour and she is sooo cool in her clothes and it makes me very envious.....!!! She even plays golf once a week....wow...!!!

[kat]

I have a push cart for everything at home. I put in wood floors and put felt on the bottom of everything so I push everything around and lift nothing. I buy groceries for a week because one small bag is all I can carry. I get on my knees in public because sitting and standing are painful and I don't care what people think.
All the items I use are on the low shelves and all my boyfriend uses are up high. We have organized the house to suit our (my) special needs.
I miss underwear and pants so much.
Flip flops are all I can wear because I can't bend to tie shoes and heals would probably make me fall over.
My nails - hands and toes - are to the nub because I can barely reach my toes and my bengay eats my polish away on my fingers so what's the point in painting them?
I miss dressing up and being sexy, but having orgasms that are not painful for the first time in my life is very sexy to my boyfriend and I.
We are having fun figuring out what I can do each week that I could not do last week. It is our personal game and we love it.
I call him Bear because he takes care of things and does all the heavy lifting.

We are healing together

[pianogal]

Last May I redid my whole wardrobe to leggings + jeggings (jeggings = leggings made of soft material printed w/a jean pattern) with dresses/long shirts over them. love this brand: http://www.pulsestl.com/Denim-Leggings- ... p/6743.htm Still looks cute but feels like pajamas. I belt dresses to make them cuter, and add a scarf for style, bracelets, hats, earrings, etc for fun. They look cute w/boots which you can put orthotics in. Around the house, I am a slob and wear my pj's all day practically though. I can still wear jeans for special events but they are less comfortable, so I am opting for maximum comfort. As a performer, it is challenging to find comfortable and trendy...and I think it's working.

I stopped wearing flip flops because they made me clench my toes which tightened pelvic floor muscles and gave me plantar fascitis. Closed toed shoes with heels covered with lots of support... like Toms or Crocs (the ballet flat version that still has style) helped me and tennies w/arch supports.

I keep constipation under control... by always having stool softeners and occasionally other stuff to help... because constipation puts pressure on the nerve and amps my pain up tons.

I take tylenol pm and melatonin to help me sleep well at night, because more good sleep = less pain. I have a memory foam mattress pad over my mattress to make it softer so I can sleep on my back.

I've never been good at housekeeping, so it's more of a struggle to keep it clean now w/the chronic pain and chronic fatigue... some days I fight and try hard, others I don't care. is it possible to have a clean house with pne? and a toddler? and a side job as a performer?

I have a wonderful friend / housekeeping & organizing assistant who I found on http://www.care.com. We have become friends through this, and she is a miracle. She comes once a week and makes things sane here.

My daughter is in preschool which gives me some rest time.

I bring cushions everywhere w/me... and for long trips bring along pain meds and lamaline suppositories (from france) for pain... and for plane trips bring bags and ask them to fill em w/ice.

I too have callouses on my knees from all the computer time.

I bought an eee pc netbook which weighs 3 pounds so when I slouch on my back in the couch, the pressure from it isn't too much on my pelvis, and I can carry it anywhere easily.

I bought an extra light purse.

I don't ever worry about bending or lifting... I suppose I should take care, but why? I have stairs in my house and use them often.

I can't go for walks as my pelvis spasms on the right side of my labia in minutes... unless I walk at the speed of my toddler, even then sometimes it spasms... but I do DO disneyland w/her regularly (we have passes). I finally stopped pushing the stroller cause it flares me up. Shopping carts do too, but I still push them.

I tried water pilates and loved it.

I play piano w/my keyboard in standing position.

I lay in couches at church... they put one in the foyer, one in the sanctuary, one in the sunday school room, and there's always been one in the bathroom.

I watch tv while laying flat on the couch. The whole couch.

when we go on long trips, I get someone to drive me and lay in the back.

walking in the icy pool is very nice, more than icing yourself.... recommend it. if it's cold, I put on sweatshirts, hats and drink hot tea.

laying in a hot bath always helps too. using dilators in the hot bath used to be my self help physical therapy session.

when things are really painful, I ask my hubby who is a PT to work on me... but I do this very rarely, as I just feel bad making him help me all the time.

In public, I will lay flat if I have to, but usually too embarrassed so I stand which is tiring.... I like being at home.