Snowflakes and Spoons

February 28th is world Rare Disease Day! When I was diagnosed I didn't know MG was classified as a rare disease. Here are some answers I found to the questions I had about rare diseases from scholarly articles. What classifies as a rare disease? Simply put, very few people have been diagnosed with a specific type of disease i.e. Myasthenia Gravis.  More scientifically, 1) A disease must have a prevalence of <200,000 persons in the U.S.  2) The Orphan Drug Act also defines diseases as “rare” if they affect more than 200,000 persons in the U.S. if “…there is no reasonable expectation that the cost of developing and making available in the U.S. a drug for such disease or condition will be recovered from sales in the U.S. of such drug.” Therefore  the costs to making a cure/treatment of this disease would not be recuperated if they sold it in America. A disease like diabetes would therefore not be considered. How many rare diseases are there?  It is est...

Occupational therapy strives to use a holistic treatment approach to improve a person's day to day functioning. Balancing life and engaging in work, leisure and personal management by teaching new skills or adapting task or environment is a high priority for OTs. By using meaningful activities we encourage clients to live their life to their personal best. This can be done in a group setting or on an individual either on hospital or on an outpatient basis. So what services can an Occupational Therapist offer an adult client with a chronic illness? “As much as 90% of the management of a chronic condition must be performed, not by health care providers, but by the person who has the condition.” ‐ California Healthcare Foundation, 2008 whether it's managing your medication, putting on your own socks or remembering where you left the keys OT is the profession to help you. Here are 10 other topics that an OT can include in your treatment:       1)  ...

Therapeutic Journaling Need a confidential, non-judge mental support system? Don't have a friend to call or a shoulder to cry on? Feel like you need an emotional detox? Why not try journaling? When I was first introduced to therapeutic journaling I was a sceptic. I had all the what ifs to back me up. What if someone finds it and reads it? What if I'm not disciplined enough to do it daily? What if I just don't have anything to write about? What if it's only negative? As a therapist I want to be honest with my clients. I will not suggest anything unless I see the benefit in it. Therefore, I needed to experience journaling for myself. I must admit, I was surprised by my experience and wanted to share my findings.   1)    Set the scene Before starting, make sure your sensory and physical needs are taken care of. I would never be able to focus in front of a TV or with a full bladder. I found a quiet environment suited me best. Whether it was...

Colouring in: Therapeutic tool, soul food or nonsense? I have fond memories of sitting with my Aunty Karen at Grandma’s house and colouring in. I used to be amazed how she could turn a set of black and white lines into a kaleidoscope of colour with just 12 coloured pencils. I enjoyed the time I spent with her and the treats that Grandma was sure to bring.   Today colouring in has become the next best self-help tool. I too own a new set of pencils and colouring book. Many web pages and blogs claim to colour in can have a positive effect on mood, increased self-expression, increased focus, help you engage in meditation and spark creativity by embracing your inner child.   But yet when researching this topic I struggled to find journals or peer-reviewed articles. Could this be because adult colouring is a new topic or are the above claims false? Also, why don't I experience this positive kick? Why when I coloured in gift tags for Christmas I was so proud to stick t...

Sticks and stones will break my bones, but words will never harm me Then why do I tend to remember the hurtful, insensitive comment so much clearer than the positive motivating ones? Why is forgiving and forgetting much easier to say than to put into practice?  I expect a level of empathy, compassion and knowledge from other health professionals as I value these qualities in my own practice. My boss is continually reminding us to find the benefit in the situation.  I admit I can only reflectively do this at the best of times and often still feel charged and irritated about the moment. Here are my top insensitive quotes*, I have ingrained in my memory, by health professionals: *please note this is how I remember them.  ‘Maybe it's your faith making you sick’ – Anesthesiologist before going in for my thymectomy. ‘You will never get better unless you stop all your medication and follow my advice’ - GP when I refused to take unknown antibioti...

To follow this blog on Facebook:  https://www.facebook.com/snowflakesandspoons/  Reality TV vs. staying connected I love watching reality TV.  From the adventures of the Amazing Race to Survivor as well as to Say Yes to the Dress, I love it all! From the drama of Dance Moms to the triumphs of the Biggest Loser, I cheer on the characters and share in their heartbreak. It is one way I can experience it. I can imagine cooking on Master Chef and being the one picked in the final rose ceremony of the Bachelor. It's a great distractor and opportunity to disconnect from reality.   The downfall is that this is not my life. These are not my traumas or joys, and while I would love to travel to Norway and see the Northern lights, my reality is slightly different. I don't have enough spoons to do everything that I want to do. The important question I asked myself was how can I live an authentic life when I am so tempted by these fairy tales? How do I enjoy other pe...

The Spoon Theory and real life Basic theory The spoon theory was developed by Christine Miserandino. (1) Spoons are used as a metaphor to describe the units of energy available for people living with chronic illnesses. Each day everyone has a limited number of spoons available for the day. When spoons are used a person has to rest to replenish them. Therefore, people with chronic illnesses need to plan and manage their days. As there are only a specific number of spoons available people may choose to use their spoons differently to what is sometimes expected. The picture to the right was designed by the Chronic Fatigue Blogger, Jessica: http://sweetbriarsisters.com, to demonstrate this point. I have learnt some personal lessons along the way that I feel need to be added to this theory. Spoon Stealers Many people don't realise that activities of daily living (ADLs) such bathing or brushing your hair can steal spoons from a person with chronic illn...

How Snowflakes are formed Myasthenia Gravis (MG) is a chronic autoimmune neurological disease. (1)   What a mouthful! It has a world prevalence of between 25 and 142 per million  (2) indicating that those affected, especially in South Africa, are few and far apart. MG is often called the snowflake   disease   due to the fluctuating symptoms experienced from one person to another. Each snowflake has a similar primary ice crystal base, but the internal order of the primary crystal, and exposure to different atmospheric conditions during the formation of its crystal arms results in its unique appearance.  (3) S imilarly, MG is normally identified by muscle fatigue and weakness; this would be the primary crystal  (1)  . Each individual's genetic make-up, the internal order of the crystal, and their unique environmental and lifestyle stressors, the atmospheric conditions, results in each MG warrior's unique set of symptoms....