Dizzy Hamster Help

Tim lost his mobility in February 2015, which is part of the normal progression of Myotonic Muscular Dystrophy Type 2 (MMD2). However, it was at least somewhat premature due to complications from an unrelated medical procedure.

Tim’s Health Update

 

Tim’s overall health is fair to middling, considering his multiple conditions of which MMD2 is just one, but the one with the most impact. We could use your prayers and good visions particularly for his lungs, as he has had a rather troublesome decrease in his lung capacity. We’re hoping some new interventions will stabilize that part.

We’re both adapting emotionally with the major change in our lives. Here’s where our love for each other and offbeat senses of humor save us. But it hasn’t been without my having to learn radical self-care and accepting a myriad of help and tools for coping. If I’m not functioning; I can’t help either of us. Right now my class in Mindful Self-Compassion is my greatest godsend.

Tim’s latest test result makes even stronger my resolve to give my husband the best possible life for as long as he’s on the planet. While I realize I can’t take care of him at home forever due to my own physical limitations, I want to for as long as I can. There’s nothing like a reminder of life’s fragility to confirm to myself that I’m doing exactly what’s right for us both.

As spring approaches, I know I have to go a notch deeper on asking my friends for help. This is hard for me. Personal care is exhausting and very physical. (This not-a-jock now has visible biceps.) Our situation is such that I have to do almost everything for us, and when you add life’s appointments, errands, laundry, cooking and other demands on top of it, I have little juice left over for getting ready to move. Then (ahem) there’s the fact that we both turn 70 this year and I’m no spring chicken. (“That rude Arthur,” as my birth mom used to say of arthritis.) I’ve spent the last 2 years at PT, the chiropractor, the therapist—you get the picture. I have to nap to recover from spurts of activity. While my spirit is young at heart, my skeleton reminds me every morning that I have really lived a lot of life in these bones.

The conundrum is that everything we need to improve our lives will come out of the move: better cash flow to hire more help, a more wheelchair-friendly home, and the ability to buy a van with an automatic wheelchair ramp to name just a few plusses. Meanwhile, I’m having a terrible time getting from here to there. I feel like a hamster on his vicious–cycle wheel. I’ve been trying to move for 2 years with just so-so progress. (I’m also working on methods for boosting my own energy.) I think I’ve finally recovered from the loss of our former life and all these changes enough to get by with a bit of help from my friends.

How You Can Help

Before I ask, I want to be clear that I value friendship and family above all else. Whatever you’re moved to do or not has no bearing on my caring. Help from the heart is the best kind, and I know many friends have their own challenges and aren’t in a position to offer a hand. However, as you’ll see below, prayers along with spiritual and emotional support are golden. Help on that level leads to manifestation on the physical level.

Sacramento-Area Friends

While I’ve had a lot of offers for help for the physical move itself, I really need help before that. I look at the task in two phases. Phase 1: Sorting, clearing and cleanup for showing the house. Phase 2: After sale, the actual move. Local friends who are willing to pitch in on Phase 1 and roll up their sleeves for one or more 2-3 hour sessions would be of enormous help. This would be working with me to sort and box stuff and other relatively easy tasks. (Other examples: errands like to/from the storage unit, the landfill and donation sites.) Bending and lifting are hard for me because of my arthritis, especially since I have to preserve my back for wheelchair transfers. I’m convinced I’d get twice as much done with “work dates,” company and a few backs stronger than mine. PM or email me if you’re available and we can calendar something. These can be done singly or with a couple of people at once.

All Friends

Some friends are too far away to help with the nitty gritty. Please send your visions and prayers for a perfect new home and a smooth move as soon as practical. Bless our health while you’re at it! With spring just around the corner, I am so ready to get this done.

As a footnote, I want to thank everyone again who contributed to our Go Fund Me campaign for Tim’s wheelchair elevator in 2015. You cannot know how much the ability to automatically raise and lower his chair up to an extra foot eases those bed-to-chair transfers, especially on my back. It also gives Tim more “seated mobility” than he’d ever have without your generous help. We don’t want to be asking for financial help as a matter of course. (Despite all the expenses of disability, we should be in good shape after the sale of the house.) There is definitely room for contributions toward paid caregivers. (Expensive and Del Oro Caregivers hasn’t had the funds to pay for respite recently. No break from 24/7 caregiving and always being on call for 1.5 years.) It’s really difficult to do personal care and all these other things. There will be phases of the move where my full attention is needed to tasks away from home, and substitute personal care would enable me to focus on them fully while knowing Tim’s needs are being taken care of. If you’re inclined to help this way, here’s a simple way to contribute:

Financial Contributions

1.   Go to PayPal.com
2. Click on Pay or Send Money
3. Send to Friends or Family in the US
4. Enter my email: wordmonger@starstream.net
5. Enter amount.
6. Under notes, please type Moving Fund.

If you’re not a PayPal fan, email me for other options at the address above. Also, I’m happy to answer questions and love encouraging and supportive emails. I have never needed cheerleaders more.

I’ll send occasional updates linked in Facebook and to some of my other regular mailing lists.

Love and thanks for your friendship,

Joyce

PS – I’ll soon have a document ready to outline some of the Phase 1 jobs, so if you have a particular talent that fits a need, volunteering for what you’re good at would be wonderful.