Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

Mobility Help

It has become clear to me that I'm in need of occasional mobility help. My muscle weakness/fast fatigue isn't getting any better. Any level of exertion just makes it much much worse. Even low impact activity like in a pool leaves me totally exhausted and "weak" feeling.

I used an electric cart for the first time yesterday and wondered why I waited to long to try it!

I wish every store had one.

But what device do I need? How do I choose? And will using one just make whatever's happening worse? It's important to me to choose the least invasive one so that I can still get exercise, but I also don't want my limitations to keep me home, or have me turning down invitations to be out in the world. It's a very tricky balance.

Funnily enough the most useful information I found about mobility options was through the National Multiple Sclerosis Society. It's a brochure titled "How to chose the right mobility device that's right for you." Now why they think this is only an MS thing, I have no idea. Many challenges can affect mobility and I thought they did an excellent job discussion options that were relevant to anyone, not just those with MS.

I found page 7 and on to be the most useful. I really like how the brochure breaks down each device into "What are the benefits - What are the limitations - How do I know weather this is the right device for me." Because of this helpful brochure I'm thinking of renting a "Rollator" to try for days we have more than 1 place (or 1 big place) to be.

This is a rollator. It's a walker with a seat.

Muscle weakness and fast fatigue are my main issues. I need a place to sit when I start to tire (which happens pretty fast.) Not being able to find a seat not only causes me pain, but it makes me really anxious. Last Sunday we were in a huge antique store and I swear that every chair had a "please don't sit" sign. It was like torture. When I finally did find a designated "rest area" I treated it like my home base. Yes, it significantly impacted my enjoyment of the outing. Had I brought a rollator with me I could have just sat whenever I felt the need, then kept exploring after I rested a bit.

Here's what the brochure has to say about the rollator:

How do I know whether a walker or rollator is the right mobility device for me?
A walker or rollator might be indicated for you if: 

• you can walk by yourself but feel that you need extra support for balance on both sides of your body
• you find that you are continuously holding onto the walls and furniture within your home for support
• you have good arm and hand function to move the walker or rollator forward while walking
• If you occasionally get tired and require frequent rest periods when out in the community, a rollator with a built-in seat may be a good option for you. 

It may be time to be evaluated for a more appropriate mobility device if, while using a walker or rollator, you: 

• hesitate to participate, or stop participating in the activities that you want to do in a day
• are falling or have a fear of falling
• are unable to independently walk with a walker or rollator for short distances in a reasonable time period
• are experiencing back, shoulder, arm, and/or wrist pain
• become very tired after walking short distances with a walker or rollator

That last one has me worried. My muscle fatigue might be so bad that:

1. Pushing it is too hard for my arms.
2. I'm just sitting every 20 steps or reluctant to get back up.
3. What if it hurts my hands too much or my grip isn't strong enough to push it.
4. It could be too hard on my back.

I have my upcoming medical appointments where I hope to get some answers and help. In the meantime I am finding that I'm limiting myself, my outings, what I do when and where because of mobility. I don't want to do that.

My plan is to look at renting a rollator for a month or so and see how I like it and how it goes. If it's a magical tool that is hugely useful, then I'll buy my own. If I'm unable to use it consistently or it's too tiring for me, then I'll look at trying out something else (like a scooter.) 

As far as mobility around my house I'm still golden. Hooray for a little house! The only exception I've noticed it when I'm standing for any period of time in the kitchen. My husband bought me this stool that I think will be a major help though. It also doesn't look out of place in a kitchen.

The hardest part about mobility is knowing what I need now. For how long I'll need it and will that tool keep me from using my muscles which will make my situation worse. I honestly don't care about what people think or how it will look. I just want what's healthiest and safest for me. And what will keep me out of my house and enjoying life as much as any introvert possibly can. 

What Happened to "Plan Kick Ass?"

Plan Kick Ass (or PKA as I call it) was way-sided by the introduction of Plaquenil. I stopped taking my supplements, except for Vitamin D (because my doctor recommended that one) and I didn't have the energy to make my own juice. I did however keep up with the new "chemical free" beauty products and gave all my old stuff away to good homes. I hate waste!

View from my bed

I think today I have the energy to make some fresh juice for my 10AM snack. It's not just making the juice that's so tiring. It's washing the produce well, making the juice and cleaning everything up and putting it away. Just like going grocery shopping in itself isn't the real spoon sucker. It's driving to the store, walking all over and putting stuff in the cart, chatting with the checker (or people you run into that you know), loading up the car, driving home, putting it all away. MAN! I'm tired just from listing what about it is tiring! Well, juicing is a lot like that. There's a lot of steps involved that all = exhaustion.

My other favorite place to be.
The living room couch (complete with cozy quilt.)

So like all things in my life I've learned to modify PKA. I got the handicapped parking plaque (and I've been so thankful that I did!) I'm asking for help when I really need it. I'm letting all the little things go that I used to feel I "HAD" to do every day. I'm savoring time with my husband and doggies. And I'm trying to be more patient.

I've been finding a lot of support in books. My latest find is "How to Live Well With Chronic Pain and Illness" by Toni Bernhard. I think I found this book by just putting "chronic illness" into the search engine at my library. Actually from home, then I request a hold on a book. That way I just have to run in and grab my hold stuff. That's another modification I've made.

Even though people are all so very different, it's helpful reading someone else's experience and what has worked for them. Toni is very frank in her book about her struggles, but does so in a very hopeful/helpful voice. I'm enjoying it and plan to read her first book "How to Be Sick" next.

Alright. It's snack time and I'm off to try juicing. Wish me luck!

Plan Kick Ass As of Now:

• Eat a little something every 2 hours.
• Rest and nap if I feel the need.
• Wear my compression gloves to bed at night.
• Continue being as chemical free at possible with products.
• Try to eat anti-inflammation foods.
• Take Vit. D & Magnesium daily (for muscle pain.)
• Go slow and save spoons.
• Drink lots of water and herbal tea.
• Be loving towards myself.

Modification

I am blessed.
Not because I have a nasty chronic illness.
But because I have the means and live in a place and time where I can access items to make my life easier and reduce pain. I'm very aware that not everyone is so fortunate, so resourced or so supported. This makes me incredibly lucky.

As I get to know what I can easily do and what's more challenging for me I also learn what's worth the spoons and what isn't. Some things I can still do fine, but they cost so much in energy and muscle strain that it's just not worth it.

Here are a few things I found (all on Amazon - no affiliation) that have been making my life much easier. I'm not giving links to each thing because that's a hassle. Yes, I paid full price and wasn't compensated at all. But they've helped me.

This has helped the most. It's a UV sun parasol that's super compact. It has much better coverage that a hat and shirt and is light and easy to cary. It was less than $20 and it is the single most useful thing I've bought. If you're on a medication that causes sun sensitivity or sun reaction I 100% urge you to get one. I need to get another one so I can leave one in my car at all times.

This stainless steel mini chef knife has also been fantastic. My hand would hurt for hours after using our nice knives. This one has a rubber grip that has a bit of give so the impact doesn't go straight to your hand. The shape is very useful and the smaller size makes it perfect for things I regularly chop like onions. It's my favorite kitchen tool now.

Handles on cups are also a big deal now. They help me keep a grip on my glass and keep my hand from getting too hot or cold. Something you have to watch with both RA and Raynauds. My favorite coffee travel mug with a handle recently broke (not my fault.) So I bought this one. It's ceramic instead of plastic and I love the wooden handle. It fits great in my hand.

Click on the picture to go to the Etsy store

I'd been sneaking some thick cardboard cup cozies from our local grocery store and keeping them in my purse. These are wonderful for when you're eating out in a restaurant. They keep your hands from getting too cold and improve your grip on the glass. Though I also recommend using a straw, especially if you're on an immunosuppressant. 

But to put the paper ones on I still had to lift the cup up. I was looking for some fabric velcro ones that I could just un-do and re-attach once secure. I found this fantastic Etsy shop with hand made cup coozies in all kinds of fun fabrics. Now I have 2 in my purse and 3 for home. 

Ok... this one seems stupid. But I really love fresh ground pepper! I also love my "choose the size of your grind" hand pepper grinder. But that's exactly the kind of motion I'm supposed to avoid with RA. So I found these electric grinders that also have a "choose your grind" setting. I haven't used them yet because each one takes 6 AAA batteries (and who has that many just laying around!?) Next time I hit Costco I'll get a pack. But I'm so excited to have them and can't wait to get back to fresh pepper on my salad. If you don't indulge in this, you're really missing out.

I now own two of these amazing baskets. One of delicates and one for panties and such. No more toting heavy baskets out to my garage. Now I just wheel dirty stuff out and clean stuff back in. 

The biggest modification to my life however hasn't been in what I've bought. Its been an adjustment to how much I do and in letting my husband help me. He does almost all of the driving now. Not that I can't but he doesn't mind and it saves my energy. I tend to wait in the car for super fast errands like hitting the ATM. I let him get me gas when he can. It saves me touching the dirty screen and pump. All these little things can add up to a lot of energy and hand use. He's wonderful and doesn't mind picking up the slack. I do what I can like cleaning the kitchen counters (it doesn't require bending or pulling.) 

It hasn't been easy for me to learn to ask for help or to rely on him for more things. I'm very independent. My Nana tells stories of me being very little and refusing the help of others with a defiant "I can do it myself!" That instinct is still strong. But my husband told me a long time ago that "Just because you CAN do something, doesn't mean you should have to." That has stuck with me. I'm very blessed to have his support and help and now I don't hesitate to ask for it when I need it.