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.

The Rheumatologists' Secret Weapon

I am an enthusiastic supporter of the profession of Occupational Therapy (OT).  The services they provide patients to help us develop coping strategies and to aid in the empowerment we need to manage our own health problems is impressive.  They are the secret weapon used by many rheumatologists; if your doctor does not recommend that you see an OT, double check with him or her. If the doctor feels it is uneccessary you can find them on your own or possibly through The Arthritis Society in Canada.

When I was first diagnosed with RA thirty years ago I met an OT at the hospital and learned the Principles of Joint Protection.  One of the most important 'rules' is that you always use a larger stronger joint to perform an activity when possible.  So it is better to push yourself up from  chair using your forearms rather than your hands or fingers. You need to preserve the small easily damaged joints.

                                       www.arcinteriors.com

Often the first thing people think of with OT and inflammatory arthritis are the items that can be used to help with daily activities. There are household items like key turners and kitchen items. My favourite of all time is the right angled knife. 

It makes cutting so much easier on my hand and wrists. I also preserve my finger joints when I write by using pens with a large barrel or made larger as you see in this picture:  

There are so many ways that an occupational therapist can help you to carry on with doing the things that are important to your life and your job.  They usually start with an assessment and make a treatment plan for you - perhaps including special exercises, or modifications of the ways you do things.

Here's an example of a life-changing OT experience from my friend Julia who was suffering every time she had to use her washroom.  Her knees were causing so much pain that it would sometimes take her 30 minutes to get off of the toilet and carry on with her activities.  One visit from an OT and a raised toilet seat solved her biggest problem. She actually says "Now I love my toilet!"  How many people have you ever heard say that?

                                      www.ojmedical.com

So my advice would be that if certain activities are becoming difficult or if you are having a lot of pain in a specific area you should get a referral to consult an occupational therapist.  They can help with any joints but especially if your hands or wrists are affected by Rheumatoid or Osteoarthritis.

Below are two signs that there may be an OT in the vicinity.

The electric frying pan and the heat gun may be specific to rheumatology OT's but I am willing to bet you'll go a long way before you find an OT who sees patients and has no wheelie bag.

There are many types of splints and supports that an OT can make, or help you to find for your hands and fingers.  Here are pictures of two types that have helped me.

                      Resting splints can help with wrist pain and maintain good hand and finger positioning.

Silver ring splints can keep your fingers in a more functional position.

You can also have your work area assessed to see if you are working ergonomically.  

I am concentrating here on only one area where OTs can specialize. They also play a large role in helping anyone learn better ways to live and deal with a large range of problems from autism to stroke to mental health. 

There is more information about splints in this post. from the past. I'd like to take this chance to thank the OTs who have helped me through the years.  

More Reading
From the American College of Rheumatology about OTs