Wednesday, July 18, 2012

Not a craft post, more on OT.

I realized that I hadn't spoken for a long time about my illness and i think i should as i am always conscious that the world needs to know about this rare condition.

I was reminded of words i had spoken some time ago and i was shocked at what i had wrote but my words stand true to how i still feel most of the time. Here are my words;

‘Don't befriend me, I'm not worth it. I am a corpse in a chair and I will be of no use to you. Try and rely on me and I will let you down. Know that I can't keep a promise of forever as I don't value myself; how can I value you? Forget who I was because she isn't here anymore. Your life is precious; forget people like me and surround yourself with love, life and laughter.’

This is how Orthostatic Tremor makes me feel most of the time. Some might say i have a choice of how i feel and respond to this illness but it seems so far this is how i have chosen to look at it. I feel this way because i am so sad for my family and friends and all they miss out on. My son has never socialized with kids his own age and i fear this will cause issues for him in life. My older children get stuck doing chores and looking after their Mum rather than going out to play with mates. My husband has changed roles from husband to carer and misses out on love and affection from his wife. You see i find it difficult to see positives in that but despite the negativity i try to smile and put on a brave face a mask i guess. 

I am not alone, i have many friends around the world who have Orthostatic Tremor, all finding it difficult to live with the effects of Orthostatic Tremor. I pray for them often. I met most of them through a page i set up for support on facebook, Primary Orthostatic Tremor Group. My life wouldn't be the same without these people and I'm glad that this group has connected us all.

I hope to one day learn to live with this illness with a positive state on mind and help others deal with similar problems. 

Also, on a side note for all my crafty friends, crochet has probably saved my sanity so many times. There is a lot to be said about the therapeutic affects of arts and crafts.

P.S  I realize it has been a long time since i have explained what Orthostatic tremor is and to be honest it is so much more than what i can explain but here is another description for those of you that may be interested.

Orthostatic tremor is a rare Neurological Disorder which is often misdiagnosed as Parkinson's or MS, depression and anxiety.
This disorder can be diagnosed by having tests to measure the contractions of the muscles EMG, The speed in which OT is categorised is (13-18Hz).
The cause and a cure is unknown.(Some medical professionals have never heard of it) Treatment usually takes the form of epileptic drugs to take the edge off. Most OT sufferers are not currently medicated as the available drugs have little to no affect at all.
OT can be a debilitating condition and is for many of us.

Onset OT - Tremor on standing which is usually relieved by sitting. Feeling off balance/ dizzy. Feeling fatigued.The tremor may or may not be seen by others. Sometimes it is felt like a "vibration" on the inside.

OT Plus - Additional neurological symptoms may occur due to progression a list of symptoms can include ( but is certainly not an extensive list);
Freezing up
Needing to sit
Dizzy/off balance
Unable to que in lines
Gait problems
Anxiety/ depression
Tremor in other parts of the body other than legs
Essential tremor
Parkinson's symptoms

1 comment:

  1. Awesome work.Just wanted to drop a comment and say I am new to your blog and really like what I am reading.Thanks for the share