Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘publishing’

Redefining Pacing Parameters

Since my latest flare up began I’ve been taking extra care to make sure I acknowledge my accomplishments no matter how small each day and attempting to redefine my pacing parameters.  This is a key tool for me to keep in mind at all time. Mainly as it enures I acknowledge my further limitations during a flare up and act accordingly, but also as it keeps me focused on the positives and prevents me getting tuck in a emotional rut which often occurs in flare ups.

I had a wonderful opportunity as part of my publishing internship yesterday to direct and film an interview with an author signed to the publishing house. It was a fantastic experience that I thoroughly enjoyed.  However like all things it required spoons, and far more than I had anticipated. Despite my lack of spoon saving preparation I got through the day relatively intact and the repercussions didn’t kick in until today.

This is where I feel like I’ve made leaps and bounds in handling life with chronic illnesses. I didn’t attempt to struggle through the pain today, or go to the other extreme and do nothing (although sometimes this is needed); instead I decided we would go about our day as planned but I would use my wheelchair the whole time, with baby snug in his sling against me, and Dame pushing me rather than me risking dislocating a joint or three by self propelling.

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We only nipped out for a short while as avoiding over stimulation is key on days when I feel my health is on a downward kilter. So a relaxing jaunt to the local coffee house and then onto Waitrose was our plan. I was quite overjoyed to find a wheelchair friendly trolley. A rare treat, that has quiet made my day.

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Dream A New Dream

Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.

He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.

My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.

 

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