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. 

The Last Time...

I've been having the feeling lately that there are many things I'm doing "for the last time." I'm torn between being at peace for this because of the pain and discomfort they cause and mourning the loss. Let me be more specific.

Last week I used a branch saw to trim back the neighbor's rosemary plant that was trying to eat our garden. It's something I've done many times before and never thought much of it. The saw is very sharp and it doesn't require much effort. But after 10 minutes I could barely open my hand back up. Yes, I had taken Ibuprofen before this. I told myself it was the last time I would even use that saw (or one like it.)

Sweet girl and her healing lovies.

Yesterday I went to the ZUMBA class at my gym. It's something I used to super enjoy and I've been trying to go slow and still do the moves. Well, both last week and this week the effort left me sore, stiff and with serious lower back pain even 24 hours later (and totally exhausted.) I think even with modification the moves are just too much for me (at least for right now.) I'm going to stick with Tai Chi or the pool.

Although neither of these activities are something I can't live without, they have one thing in common. They both felt very much like "LASTS." As in "that's the last time I'm doing ZUMBA." And that sucks.

I'm telling myself that this could be temporary and that my new rheumatologist could come across with some wonder drug that will wipe out RA (and not re-activate my TB.) But I also am aware that the opposite might be true. That this could just be a new way of being for me.

I am determined to embrace the CAN'S and move on away from the "cant's." But I also can't stop myself from wondering how many more "lasts" are in my future?

Trying to keep fit

A haiku to exercise:

workout 

red face

this sucks

Post-workout today

And yes... my tongue is doing much better!
Saltwater rinses are magical. I just had to keep up with it. 

I'm proud that I've been keeping to my goal of doing some kind of workout daily. Yesterday was physical therapy (where the PT said I gained 4% mobility in my neck! YAY!) Today was a ZUMBA class at my gym. Even doing it at a very low impact I could just manage 45minutes instead of the full hour. It's ok. It happens. I was awesome. Pitbull would be proud. 

Tomorrow is "my choice day." That means I can either go for a swim or do my Tai Chi for arthritis video. I think it will depend on my energy. If it's low I'll do the video and stay home. Feeling good = gearing up for a swim. If I'm feeling completely saucy there's an aqua aerobics class at my gym at 8AM, but that's a shot in the dark.

I'm worried that if I don't do as much as I can while I can that I'll lose what muscle I have. I can feel my stamina and strength just draining every day and it's a freaky feeling. So, I'm working hard to do what I can to keep myself going. Keep smiling, keep dancing, keep swimming and modify when I can.

Rheumatoid Cachexia

I think I might have found what's going on with my muscle weakness. Last night I stumbled across something I've never heard of before called "Rheumatoid Cachexia."

The Cliff's Notes version of Rheumatoid Cachexia is that it is muscle wasting in people with RA. Sadly it's most common in people newly diagnosed with RA who are also overweight (ding ding ding!)

I found this blog on RA where the author says this about her experience:

"Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water." 

Her story completely mirrors what I've been going through. One day I can work in my garden and the next I can barely shampoo my hair. Funny thing is my rheumatologist told me that muscle weakness doesn't go with RA. Did I mention how much I'm looking forward to getting a new rheumatologist? I have a message in to her about all of this but my expectations are very low. About as low as my current physical stamina.

(Me being a mermaid a few years back.
Testing out my underwater camera before we went to Iceland.)

I read that the best way to fight the cachexia is through "resistance exercise" and eating a lot of fish. Checkmark on the fish increase. We've been doing that for a few weeks eating it about every other day.

(Our delicious cod fish tacos that we had for dinner last night.
I like to steam my cod in my rice cooker. It's super easy and doesn't make the house hot.)

As for the "resistance workout" part, I have my first physical therapy session tomorrow. I also still belong to a gym that has a heated pool. I need to get back in it. Swimming and aqua aerobics is fantastic for health and mobility challenges because it's easy on the joints. I can get resistance and still keep it low impact. 

I also asked my PCP if we should re-do my back images since the last ones were done 17 months ago. He agreed and that's on order. More time in the "fun tube!" (My pet name for the MRI machine.) My husband and I joke that we need to make t-shirts for the medical center that we have to go to for all our scans and testing because we're there so often. I think that would be hilarious. He said we could have the name on the front and "Let's hope it's negative!" On the back.

Humor is so important.