A Day In the Life

The members of the support group I've been in for ten years were thinking about Rheumatoid Awareness Day which occurred this week. In talking about A Day in their Lives with chronic disease some memorable comments came up.

Rosie says "One that you can't avoid considering is the extra diseases we have to deal with. Sometimes I wonder whether it matters if the fatigue is caused by my RA, Sjogren's or Fibromyalgia. This morning my eyes felt like they were sticking to my eyelids. Eye drops help but not enough."

Julie says "I know the first thing on my list is stretching/exercising my feet (so I don't get that awful plantar fasciitis) and trying to stand up, move and get my house coat on.

Then, I get in my Chair/stair lift that takes me downstairs.  I could go on from there and maybe I will do that.  I also use a knife to open up those "easy-open" tabs on milk cartons, etc." 

Lily says "I have a pill bottle opener that looks like this one.

My friend Ali bought it for me years ago and I use it every day."

I have asked my pharmacy to make sure that they put my medication into containers that are easy to open.  If it's child-proof, that's the same as RD proof for some of us.

Patti talked about bottles of all kinds "Some bottles I have found incredibly hard to squeeze, so I avoid buying them; some plastics are just too hard to squeeze. Like honey,mayonnaise,mustard, shampoo. I would also wish for RA to be more widely known about and understood, rather than people thinking you just have the odd achy joint."

She also mentions the problem of being stranded in snow and unable to shovel your way to your mailbox, another expense you don't need on a limited income.  She had to have a special car ignition key turner made because she could no longer use the regular key after her fingers got bad. She carries a rubber pad in her purse in case she needs to turn a doorknob.

I think Patti's rubber pad is a rubber circle like this to help with grip. (Canadian version)

The new cars with push button ignitions are much easier to start. It's so simple to get in the car and drive.

Also on the plus side Lily really enjoys being able to take as long as she needs to get ready in the morning. "One thing RA/RD has given me is the gift of time." (at a cost of course)

I'd agree that RA has given me a lot too. My life is not what I expected it to be; that's so common with or without chronic disease. 

After I retired I wanted to be able to volunteer in health care especially connected to RD. My wish came true in spades and even though I miss my clients and staff members, I have found my virtual life very exciting. It's quite possible to make your virtual life and your real meet up.

Still I do agree with what @angryblacklady tweeted one day. "Twitter is for introverts" And It was interesting watching the #MedX hangout a few weeks ago. Most the panelists said they were not outgoing so here's hoping when I'm at MedX this year I'll fit in. Though  fitting in at MedX is different from fitting in at most conferences.

Lessons From The Princesses

When I was young we didn't see many princesses except in Fairy Tales - Grimm, Hans Christian Anderson or Andrew Lang. They were endlessly fascinating and all of them were so different. There was never a problem not resolved for the better in the stories though the solution was often difficult. They were perfect works of fiction that had great plots and good endings.

The most inspiring picture from a fairy tale I saw recently was the Messy Princess. She looks so regal and yet - something is wrong here. I'll be looking for this story. Is she enchanted?  Why are her maids and ladies-in-waiting doing nothing?

 

by Edmund Dulac

(By the way, in my search for the 'real' messy princess story I found a free online story called The Messy Princess which would be perfect if you had a small messy princess at your house)

 

Reading all of these scary, sometimes horrifying stories was not the best way to prepare for real life where situations don't usually have fairy tale endings.

 

But here are some lessons you can learn from the princesses of the past. Remember the Princess and the Pea? 

by Edmund Dulac

The Prince was looking for a 'real princess' and this is the test his mother devised. She put a pea in a bed under 20 mattresses and 20 feather beds and after a night sleeping in this bed the princess, as she claimed to be, said that she was black and blue and had not slept a wink. The conclusion was "Nobody but a real princess could have such a delicate skin" and she married the prince and lived happily ever after.  

Personally I think she had fibromyalgia. Maybe there's hope for those with fibro after all. It's really a test to see if they are real princesses.  The lesson is that comfort can help you to feel better. Get the peas out from under your cushions and mattresses.

Then Cinderella came to mind. She has a lesson that is a little more practical. (I doubt you are plagued by peas.)

With good fortune and luck Cinderella found a most excellent mentor (her fairy godmother) and followed her advice almost perfectly. Having a mentor is invaluable in chronic illness. Useful advice as early as possible helps you have more success in aspects of your life dealing with illness.

Rumplestiltskin provides a good lesson in learning the right language to use defeat adversity. If you think of the evil little man as the personification of your illness, then knowing his name is the way to win, as the Queen learns when he tries to claim her baby. 

Christina Rossetti

What I mean by that is that if you learn the terminology and medical language of your chronic illness you will find that things move faster for you. You can cover a lot more ground in an appointment if the doctor does not have to spend time explaining what you can readily find out for yourself through research, reading online doctor sites and joining patient communities. This is effective for family caregivers also.

If you know of more lessons from the princesses please let me know. If there's one thing I enjoy it's fairy tales, but linking them to chronic illness takes a lot of thought.

Possibly Rapunzel could be seen as a story of reaching out for help but there are many versions of her story and her intentions are not clear. She obviously is unable to break out of her "jail" on her own. Asking for help often makes it easier for friends who wish they could do something but don't want to intrude.

by Heinrich Lefler

I enjoy reading advice that people with problems provide. Every blog can be seen as a potential guide. Usually the right answer is almost obvious. I think Ann Landers said this: Think about the possibilities open to you. Usually the one that is hardest is the right one. That advice has held true for me in many situations.

 

Good luck with the princesses.