RA Blog Week – tips and tricks 


Today’s topic is about how we manage our lives and what we use to assist our physical limitations. Chronic life hacks. 

It is important to note that each person may face various levels of physical abilities and although they may share the same disease/s they may be at different stages with their abilities. I have learnt not to assume.  

My own particular illnesses have combined to cause me to rely quite heavily on a few physical aids, and even more during flares and relapses. 

On a normal day I use TENS machines all day for pain assistance which I carry with me inside my clothing. I use a wheelchair and walking frame to move around and transfer as I can no longer walk very far and have balance issues and muscle weakness. A good wheelchair is worth its weight in gold and making sure it suits your needs is a life line. 

I have installed ramps at the entrances to my house so my chair can access the outside of my home. This is precious. Having an accessible garden is something that brings great joy and is worth the time to plan thoroughly. 

My foot drop is helped by a foot brace designed to keep my foot from tripping me over and fits inside my cushioned shoes. Shoes take on a whole new meaning when you rely on the warmth, comfort and ease of use. 

I also have an enormous pile of heat packs in various shapes and sizes which helps relieves pain in various joints. Including hand heat packs for my painful fingers. A wonderful ice pack can be fashioned from frozen peas kept on the feeezer. 

I will often use a headset when talking on the phone so I don’t have to physically hold a phone to my ear, and the voice mode on the smartphone (and Siri) can do basic texting by simply speaking into it. 

I carry my smartphone at all times in case I fall or need assistance I ensure that it has a good safety cover in the even of drops and spills. My handbag is a vertible treasure trove of meds, lotions, eye drops, water bottles, change of clothes and incontinence pads. If I ever require pain relief in a hurry then I can find these inside various pockets of my bag. I will also find meal replacements and eye masks for when my IBD and Optic Neuritis strikes unexpectedly. 

In my shower I have a stool, pump bottles of body wash, so that I don’t have to hold anything and an electric tooth brush so I don’t have to manually brush ‘scrub’ my teeth. Hand rails are throughout my ensuite and I transfer myself strategically during each shower. My shower is a movable shower head and can be lowered as needed. 

Beside my bed I keep everything I would need for a day when my limbs refuse to move; MS has a way of doing some very odd things to you. So bottled water, eye drops (Sjogrens) and meds will always be at hand. 

However much I try to remain as independent as I can I would not be able to do all I do in a day without the greatest aid of all, my carer and constant companion, my husband. He really is the most treasured assistance of all as he will carry me to the bathroom, shower and dress me whenever my body will not cooperate. I would be lost without his physical and emotional support. 

This must also extend to my darling fur companions who have learned to guide me when my vision is going and alert my husband when I have fallen; generally by barking loudly beside me! They are also incredibly loving when my emotions are being tested by pain and frustration. 

A loving support system and understanding group is one of the biggest and best tips I could give and that includes connecting with others who may have their own life hacks and tips to share. Being able to share information is one of the greatest gifts that technology has bought to our struggles in this age. Learning from each other. Sharing and exchanging experiences would be almost impossible for me without the technology to join us all in real time. 

As I said, we are all different. Some of us may be high functioning and not need any of these tips, but I hope that whatever stage we are at and wherever we are, I will always hope that better meds and cures will be the greatest life changing event to happen to our future generations… until then we can all advocate and spread awareness. 

Gentle hugs. 

Trish 

4 thoughts on “RA Blog Week – tips and tricks 

  1. I know those furbabies are the best assistants they can be. Our little Samantha (cocker spaniel) was such a mommy dog to me. She used to tell one me if she thought I had no behaved to her expectations when Sheryl would come home.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s