Tips for dealing with Chronic Pain While you’re waiting for healing

This article is in need of updating – I no longer deal with this pain, because the Lord has healed me – completely!! However, these tips are good for anyone who is in pain or has physical limitations. Keep praying and trust in the Lord. He is the Healer!

When you’re stuck with a bout of acute pain – a broken leg, a stitched up wound – you’re “out” for a week or two. Generally you hobble around, take painkillers for a few days, gradually taper off of them, and slowly taper off them. You might miss a day or two of work. Chances are if you do, your boss understands perfectly, having done so a time or two herself.

But what happens when your life is surrounded with pain… defined by it, even?

That the life I live. I have ehlers-danlos syndrome, a condition that makes my joints very hypermobile. They dislocate very easily and have developed early arthritis and osteoporosis. At 35, I have the joints of a 70 year old! I also have fibromyalgia and celiac disease (inability to digest gluten). On good days, I can get around my house and even walk a short ways. On bad days, I just don’t get around. To get any distance, like around church and shopping, I use an electric wheelchair. To combat the pain I wear a duragesic patch and take 2mg dilaudid pills occasionally.

My pain gets worse if I try to do too much! It also gets worse if I neglect wearing my rib brace (which I despise because it’s not exactly comfortable) and if it’s raining. It reaches horrific proportions if a hurricane blows through (which happens to be going on as I began typing this!).

But despite that, there’s a lot that can be done to prevent the pain from getting worse. Not just for me, but for you.

• Get going:
  • Start your day off right. Gently stretch before getting out of bed. Then hop into a warm shower or bath before you do anything. If you’re not going anywhere, put on some “comfies” – I wear stretchy pants, warm socks, and depending on the season, either a long-sleeved or short-sleeved t-shirt. This gets you out of “jammies”, but still loose and comfortable.
    
  • Continue your day off right: Eat a healthy breakfast, and I recommend a hot breakfast. Grits, oatmeal, cream of wheat, eggs and bacon (you can actually pre-cook several portions at a time and freeze it, if cooking on some mornings is difficult). I don’t advise that you get “convenience” foods due to cost and lack of nutrition. You can buy “instant” grits or minute oatmeal in large containers for far less money than in the individual serving packets. Put a portion in a microwave bowl, add water, and cook. Add a small amount of either butter and salt or butter and sugar. If you prefer you can add a bit of fresh fruit or jam.
  • Make sure that you don’t stay in one position for too long. If need be, set a timer for every 45 minutes (most microwaves have a timer function). When it’s time to move, stand up, stretch, and settle into a different position. This keeps your joints and muscles from locking up. At least twice a day, take a walk – if it’s nice, go outside and go – around the block, if you can. If you can’t, then up and down the driveway, around the house, across the deck and back. If it’s raining or cold, then just walk through your house. Anything to keep your joints moving. And if you’re like me, and use a wheelchair, then use any excuse to get out of the house into the sunshine as long as it’s not too hot (try going early in the morning!) A walk does the body good, even if it’s really a roll!
• In the kitchen, take a hard look at how you do things.
  • Are you stooping over to lift heavy pans? Can you move heavier items to waist level, and lighter items to the bottom shelf? Make sure your kitchen is arranged logically for how you move.
  • Slide things across the countertop rather than lifting and carrying them – a jug of milk, a heavy casserole dish – if you are worried about scratches, try a dishtowel, if you are worried about scorching the counter, try a trivet or a large, heavy cloth potholder.
  • The new flexible cutting boards that come in sets of three for safety (green=veg, red=meat, yellow=poultry) are lovely for us. Because they’re flexible, you can pick them up and carry them around – fold in half to dump whatever you’ve cut directly into the soup-pot or kitchen compost container! To clean, get all the gunk off, spray with bleach solution (if used for meats), rinse, then wash as normal.
  • To get things “around” in the kitchen, invest in a low table on wheels, a rolling cart, or even cut a barstool off to countertop height and add caster-type wheels. The important thing is that it’s the same height as your counter, so you can slide an item off onto it, then roll it to the table.
  • If you use a wheelchair, DO carry things on your lap rather than trying to awkwardly balance it in your arm and roll/use the control. However, if it’s a hot item, you may want to invest in one of those protective aprons that one would wear when grilling outside (a good idea for anyone who’s disabled. Get one with several pockets, and you’ll have it made!)
  • Use inexpensive foam pipe tubing to “build up” items like knives, broom handles, etc. You can experiement with the stuff to get the right “fit” before you remove the tapes inside to make it stick. It’s washable for a time, then you can peel it off to replace it. It comes in several sizes (I don’t know about colors, though).
  • Invest in one of those dustpans that has a handle, so you don’t have to bend over. Just spend the $$ to get a quality one, or you’ll have more aggravation than you need.
• In the laundry room, if possible you want to have the washer and dryer side by side, and some sort of mechanism where you can pull the wet items out, and transfer them on a low table with wheels to the dryer.
  • I recently saw an “all in one” washer/dryer marketed in a disabilities catalogue for a very reasonable price (believe it or not, including delivery) – it was comparable to a top-end w/d from Lowes or Home Depot. I’ve not used it and all I have is the advertisement to go on… but I did ask our repairman if he’d ever seen one and he said yes, he’d worked on them once in a while and thought they were great. They don’t break down often, and are fairly simple to repair when they do. So now you have second and thirdhand knowledge on the subject. If Ken and I ever have the money to buy a unit, I promise you a full review in this space because I really, really, really want one!!
  • Simplify as much as possible. If you take items out when just barely damp and hang them, you won’t need to iron. If you buy clothing with a serious eye toward wearability, washability, wrinkle-free-ness, colorfastness, etc. then you will save incredible amounts of time, money, and energy in the laundry room.
  • Because we have well water, we use liquid laundry soap + borax + vinegar in our wash – otherwise the clothes come out dirty and smelling quite bad! The liquid laundry soap and vinegar bottles are VERY heavy – but if you just balance them on the edge of the washer and pour carefully without lifting, it doesn’t strain nearly so much. We also use a scoop with the borax so that it doesn’t need to be lifted at all.
  • Another innovation for us is a rolling laundry hamper on wheels. We paid $16.99 for it at Wal-Mart. It has three sections, and holds about six loads of laundry for an average washer (we have a large, so it really holds 3 full loads plus 3 half-loads). We can wheel it though the house on days that it’s gotten messy – like Monday morning when the nurse hasn’t come in to help over the weekend! We divide it up by colored, whites, and towels. We’ll occasionally have a “delicate” item to wash separately. If I ever find a rolling hamper that has four subdivisions, I’m going to buy one so that we can carry items from room to room and put laundry away the same way!
• Clearing up clutter
  • Rome wasn’t built in a day, sweetie. Chances are if you’re a disabled person, your house is slowly undergoing a period of entropy. (And if you’re a homeschooler, you are doing the same. And so if you’re a disabled homeschooler, your house probably looks like a tornado hit it. You might have socks on the ceiling fan, dog poop on the floor, dirty dishes or clothes piled up to the point that you must buy new…. don’t be embarassed. Just commit to doing something about it. Just because you hurt to the point of not wanting to do anything at all doesn’t mean that you *can’t* do. You have to *commit* to do. Even if it’s just five minutes (or five minutes more) than you are doing now.
  • Here’s the five-minute plan: Use a small basket, one that you can easily carry. Pick up as many items as will fit in the basket in two and a half minutes, and then return them where they belong (Philosophy: everything has a place where it belongs, if you use it again – put it away immediately). If you feel up to doing more than five minutes, then do five minutes more, but no more than that! If you’re having a really good day the temptation will be to OVER-do it – don’t do that, you’ll pay for it tomorrow! Using this five-minutes a day plan, you’ll see that a little bit at a time, you can get a lot done without killing yourself!
  • Delegate, delegate, delegate. If you have a husband like mine, he feels that the paycheck, the yard work, and the fix-it work is his domain. The housework is mine. However I’ve had good results from simply asking him, on rare occasion, if he could do something “heavy” for me – like scrubbing something, washing windows, or mopping a floor. I try not to ask him very often because he does so much else, and because I have two teenagers to help – even though they’re disabled also. We split the housework we need to do up, so that no one does too much.
    
  • Have a large laundry basket (maybe one on wheels) that you can use for emergencies only, for if your mother-in-law or pastor calls to say, “I’ll be there in 20 minutes!” Into it goes all the clutter, dirty clothes, etc. The dirty dishes go in a dish-pan in the oven. Shine the bathroom quickly, spray some Febreeze on everything, and light a nice-smelling candle. You can have cleaning like this done in ten minutes, and if the mother-in-law wants to give you the white-glove treatment, let her know how much you’d appreciate some help around the house. <smirks>
• In the Bedroom
  • Making the bed: Skip anything fancy. Use a comforter. We use deep-pocket sheets, too, so that the fitted sheet stays on better. Another tip, if you sleep with a sweet warm fuzzy guy who likes to steal all of the covers (*), is to buy your blanket and comforter a size larger than your bed. Even if he steals some covers, there’s still some left for me! (* — he says that *I* steal all the covers. If that’s the case, why is it that I’m the one that wakes up at 2am shivering? Hmmmm? :::grins:::)
  • Putting away clothes: Use plastic hangers, not metal. Limit the number of items you have hanging in the closet, because it’s very hard on your upper body to pull an item out if it’s packed too tightly. Try to fold neatly in your drawers, and keep things organized. Set a date on your yearly calendar, based on your weather, for sorting out your seasonal clothes. You can use boxes or storage bags for them. Where to store? We have a storage building, and Ken carries the heavy boxes out there. You might need to stack them in your closet, or make use of under-bed storage, or an un-used closet in your home.
• Bathroom Tips
  • Invest right now this minute in a shower chair. If you can’t afford one, ask your insurance company if they’ll pay for one. If not, ask if they’ll cover a “three in one” – it’s a portable commode, raised toilet seat, AND shower chair. You may not need it all right now but if you’ve needed it in the past/may again in the future/spend lots of time confined to bed, your doc may justify it. I got one when I came home from the hospital in case I needed it, and so far I haven’t – but it’s good to know that if I pop a hip out or hurt my knee, it’s already there (and I do know that unless God intervenes, one day that will happen). If you can’t get it covered, and can’t afford it, see if an inexpensive (around $5 at Wal-Mart) plastic chair will fit into your shower. I didn’t believe it would help and so resisted it for a long time, but when I started falling down a lot I had no choice. I started off with the Wal-Mart chair, actually, and spent the first shower crying in relief at how good it felt to sit during the shower.
  • Use that same foamie stuff I talked about in the kitchen to build up hairbrush, toothbrush, and other handles. You can also get extension handles for items like your hairbrush.
  • Invest in a hair-dryer holder… don’t hurt yourself trying to style your hair again! (and speaking of that, do go for a sensible hairstyle!)
    
  • Don’t hurt yourself with a plunger! They make a plunger-substitute that uses compressed air for the loo, I believe it will also clear sink and shower clogs. You can also use a “drain snake” for sink and shower clogs. (If that’s an ongoing problem, get someone to install some screening for you to trap the hair and gunk).
    
• Getting help
  • If you are a Medicaid client, at least in our state (North Carolina), there are some funds available under two programs to help people with disabilities IF you meet certain requirements. For example, you must need help with bathing, dressing, grooming, or other personal care, or be unable to fix meals for yourself or your family. Disabled children are eligibile for this type of support, even if you are able to take care of them most of the time – it will help take the burden off you. The two programs I know of are “regular” Medicaid and the Medicaid “CAP” program. Regular Medicaid is, well, regular medicaid. There’s some pretty intense income requirements for it. CAP is different. It covers profoundly disabled children and I believe some adults as well.
  • If you are a Medicare client who is homebound (and they mean you NEVER go out except for to the doctors with great difficulty) and bed-bound, unable to do much of anything, I *think* there’s funds available to help you under Part A – but I’ve not figured out that maze yet.
  • SOME insurance companies will pay some money towards assistance. What I’ve found with insurance is “Call and ask”.
    
  • Many churches have ministries that will do heavier housework, set up or install hospital equipment, build ramps, etc. – ask yours, or call the United Way for guidance. Some have income or membership requirements, and some don’t. (If you don’t belong and it’s a church or ministry helping you, if you are able to, please make a donation. If you are NOT able to then please do not worry about it because that’s what God put them there to do! 🙂 However, a nice pitcher of iced tea while they work would be most appreciated by all, I’m sure.)
• Communication
  • I recently found a speakerphone WITH headset at Walmart for under ten dollars!! Now when I’m on hold for hours at a time, I can just plop the speaker on. When I’m on the phone with someone, I can either continue with the speaker or I can switch to the headset, and not hurt my hands by holding the handset.
  • I also have a cordless phone with headset that I can put into my pocket or on my beltloop and go anywhere.
  • Keep your cell phone or the cordless with you at all times, in case you fall down or have another emergency. One time I’d gone out in the front yard in the wheelchair with my service dog in training. It was during the middle of the day when it was VERY hot. I became so over-heated that I got disoriented, and literally could not find my way back to the front door! Lucy is trained to get help for me, but I couldn’t get it together enough to release her from her tether to my chair. If I’d had the cell phone, I could have hit speed-dial and called home, or even dialed 911 if I couldn’t manage that… but “being just in the front yard” I hadn’t bothered. Fortunately my husband glanced out the front window and saw me sitting still in the middle of the yard and came to check, or I might have died of heat exhaustion (since I often go for walks with Lucy, they weren’t exactly “Expecting” me back and wouldn’t have gotten worried about me for at least another hour….!!) . But that incident alone convinced me that I should always carry a phone when I go out!
    • DO remember that most cell phones will not let EMS know where you are. You will need to give them your physical location. However, most of the time your land-line telephone will give them your physical address. (Also if you use the internet to place a call using VOIP, there have been problems with this)
      
• Meals
  • Plan your meals for your pay-period ahead of time, and shop accordingly.
  • Whenever possible, prepare multiple portions of the same meal. Cook two pots of chili. It doesn’t take any more effort. Put the other into either a large airtight container or single-serve containers for individual meals (they’re great to take for lunches to work). You can even freeze in doubled zip-loc bags.
  • I’m compiling some simple meal ideas here on the site. Try and avoid doing takeout too often, but if you do, go for the healthy. Most chinese places offer steamed vegetables and rice. Even McDonalds offers yogurt parfaits and salads. Do that instead of burgers and fries.
• Service Dogs
  • I’ve been training Lucy for about 18 months. She’s a good dog, but not fully trained. I elected to get a dog as a puppy and train her myself, rather than wait on a list for a long time. It’s been HARD – but very rewarding! She will come running if I drop something (even a piece of paper!) and will pick it up for me. If I fall on the floor, she assists me in getting up. In an emergency, she is learning to pull my power wheelchair for a short distance, but since it’s so heavy I would not ask her to do so for very far, or on anything that wasn’t absolutely level or slightly downhill (if it was more than slightly, I’d not have her do it because there’s no brake on the thing – too dangerous!). She is learning to get help when asked. She’s got a fairly good command of being able to get a specific item – the telephone, the remote, a specific dog toy. We’re working on more. We’re also working on her being able to open and shut doors for me. Sometimes she’s good, and sometimes not. We’ve not taken her too many places yet – that’s the next step! There is a TON of information out on the internet on service dogs, whether you train your own or are placed with one from an agency. (NOTE: There are many non-profit agencies who will place you with a dog for free. I’m a bit concerned about some agencies charging up to $10,000 for a dog – if you are rich and can afford it, bless a non-profit with that money, is my thinking…)