Photos © Libby Schou-Kristensen
Mtunzini, North Coast of Kwazulu-Natal, South Africa
How long have you lived with RA?
What advice would you give to someone who has just been diagnosed with RA?
Seek honesty and hope — I was diagnosed at age 20 and the grave way my Rheumatologist approached the disease frightened me. It would take me weeks to recover mentally from one visit and I always came away from his rooms in floods of tears. We fear the unknown so I would advise that you speak to someone who can be honest about the nature of the disease but who can also give you the hope that you need. With early diagnosis and correct treatment you will have more hope than I did 30 years ago because the treatment of RA has improved enormously with many more options today.
Take responsibility for your own health — Only you know the details of your lifestyle – your stress levels, what you eat and drink etc. Your Immune System has failed and that is a good starting point. Direct whatever energy you have to learning how to strengthen your Immune System. It is tempting to ‘give up’ when you have pain. I encourage you to not lose sight of your general health. You may not be able to change the past but you can change what you put in your mouth today! In your own mind try and assess what went wrong and then gear your lifestyle around regaining what you have lost. RA has taught me to be a fighter – in the good sense of the word, of course!
Live in the present — An ongoing condition is difficult to deal with and I spent the first 7 years looking back and longing for my ‘old’ life. Victory came for me when I began to accept that my life had changed and I started living in the present rather than the past. In hindsight I can see clearly that the past 30 years have equipped me for God’s purpose for my life today. Nothing in life is wasted if we will look for the good in every circumstance and allow it to change us and grow us as people. No-one likes to suffer but when you read all the RA testimonies you will realize that fruit grows in the valleys and not on the mountaintops!
Do you use any mobility aids?
Currently: My best mobility aid is my husband’s hand when we walk! I use a pool noodle to help me exercise in the pool. In the past: After hip surgeries I used gutter crutches (pressure is on the forearm and not the hands) and I have used a raised loo seat. For a 6 month period I had no right hip joint and was wheelchair bound.
How has living with RA helped to improve your life?
I became a Christian at the time of my diagnosis and it was the best decision of my life. RA brought me to the point where I understood my need of God. For 20 years my life had revolved around my physical body. I had neglected my spirit and soul. As humans we are firstly spiritual beings who possess a soul (our mind, will and emotions) and we live in a body. When I asked Jesus Christ to be my Saviour a miracle happened – I became alive spiritually to God. I have a real relationship with God, Jesus and the Holy Spirit. For this reason alone RA has been my greatest blessing.
Do you have any visible signs of RA?
I have scars from 13 surgeries – bilateral knee synovectomies, wrist & knuckle replacements, left shoulder replacement, 8 hip surgeries (1 on the left and 7 on the right), I have an uneven gait which my Pilates instructor is working on – he says that he is getting me ready for the catwalk! Most of my toes have fused naturally and my two thumbs have dropped. For 20 years I have been unable to lift my left arm due to weak muscles but I am making great progress and have started to swim unaided for the first time in 32 years. My left arm does not straighten properly (I think it is because of muscle weakness)
Can you please describe some of your favorite coping strategies for living with RA?
Physically: I eliminate frustration in my home as much as possible. We buy furniture that is easy for me to sit in. A high bed is essential and a raised loo seat for times of knee & hip pain. I cannot use a broom so I have bought an automated sweeper that charges at a plugpoint. I use dusters with handles, scrubbing brush on the end of a broom handle, I am blessed to have a dishwasher, I use long-handled tongs almost every day – to pick up cat bowls, reach into cupboards, to clean up after puppies! I use large plastic containers to keep smaller items in on the lower shelves of my kitchen cupboards (like tupperware). It is easier to keep tidy and when I want something I just pull out the whole container. An electric toothbrush helps sore hands and gives a professional clean. I stand my hairdryer handle in a heavy vase if drying my hair is too painful. This frees my hands to use the brush. A TV in the bedroom is a great distraction when tired and sore. We buy cutlery with thick handles for easy grip. I drive an automatic car. I use a foot spa regularly. I hang most of the washing on hangers and small items like socks & undies I hang on a round plastic hanger with pegs before I take it out to the washline. I tumbledry washing that does not need ironing and fold immediately. A taller teapot is easier to pour when full than a shorter one. My coffee and tea cannisters have easy flip lids.
Mentally/Emotionally: I struggle with loneliness as I am alone every day of the week. It helps me to structure my day as I like routine: housework, breakfast, exercise, tea break, computer for emails, lunch, rest (1-2hrs, read often), laptop to do writing, watch tv during breaks, prepare dinner. We have a collection of funny dvd’s and loads of Andre Rieu dvd’s which always lift my spirits.
Spiritually: I have an ipod with Christian music and cycle on my stationary exercise bicycle for 3 songs. I use the time to worship God and I am not so aware of my legs going round and the time factor! I have e-sword on my laptop with many different versions of the Bible as well as a good collection of health and Christian books. I write ‘Dear Neighbour’ letters for two publications. Writing has given me tremendous purpose in life and fulfilment. Focussing on your spirit and soul puts the body in perspective. You see the ‘bigger picture’. The body after all is temporal.
Can you please describe your current medical (traditional and alternative) treatments?
I have been on methotrexate since 1986, currently on 7 x 2.5mg tablets once a week, folic acid on 5 days of the week, coxflam (flexocam 15mg is the generic) 1 tablet daily, 2.5mg cortisone daily (trying to cut down).
Pilates (not group, personal trainer using a Reformer bed) and Biokinetics every second week as we have to travel an hour. Icepacks (Cryogel) always in freezer – wrap in thin dishtowel and apply for 20 minutes three times a day to inflamed joints. It increases circulation to the joints. Electric Heat pad/ microwave wheatbag for sore muscles or just for comfort when sore. Daily pool exercises (Sept –April) using pool noodle and Poolates (pilates principles in the pool!) I use 1,2 & 4 kg weights three times a week, a high density foam balance board (my balance was very poor) and a Pilates ball for squats against the wall. I supplement daily: multivitamin/multimineral, omega 3, Caltrate plus (calcium), 500mg powdered vitamin c, glucoasimine (2 x 500g daily). Vitamin B Complex when tired or stressed.
Is there anything else about yourself that you would like to share?
RA has taught me to be reflective about my life. Without reflection one year just rolls into the next and life becomes a blur. Taking the time to assess my life from every aspect – health, marriage, spiritual growth, relationships – has brought a greater awareness and thankfulness to God for my life. For the past 5 years I have adopted the American tradition of Thanksgiving and it has become a highlight of my year. I have discovered that when you have a better understanding of what is happening in your own life that you are better able to help others. For the past 15 years I have become more outward looking and my greatest joy comes from being able to help someone else. It began with the writing of my book, Seeing the Unseen, in 2009 and my DVD/CD 10 Life Lessons the following year. I have two more books ‘cooking’ and this year I added an RA blog called RA God’s Way to my website www.soulbooks.co.za.