Epilepsy Won’t Hold Me Back Any More!


Image: 123rf.com

Image: 123rf.com

I spent much of yesterday attempting to compose my thoughts and feelings concerning my meeting with Sheila at Compass and what was discussed there. I couldn’t really piece it all together, so instead I gave you some fluff about my weekend.

This morning I was inspired by a blog post from my friend Fiona. As most of you are aware, I’ve spent the majority of this year dealing with some issues: epilepsy, eating disorder, alcohol and general confidence in myself. What Fiona has to say has helped me find some perspective and regain my blogging muse. Fiona made me stop and think about all of the positive changes I have made in my life recently, without really noticing.

When I first began blogging last year I was an underweight, anorexic waif who felt horrified and immediately stopped eating if anybody commented on my weight. I was virtually housebound through fear of seizure, and I was so weak and tired that I spent a lot of my time in bed (we’ll ignore the incident with the seizure and the resulting broken toe – I had no choice in that instance) and if I knelt, crouched or sat on the floor I couldn’t get back on my feet without help from D – who developed some lovely biceps as a result!

I was isolated; a self-made prisoner in my own home. I avoided going anywhere that involved food, wouldn’t eat if I cooked and didn’t enjoy the process of cooking in the slightest. I had D drive me everywhere and I had to concede defeat when it came to the garden that D had so lovingly created for me (it was just lawn when I came here five and a half years ago; no borders, no flowers… just Buddleia, Corkscrew Hazel, Bay, Rosemary and a few other herbs).

Every time I tried to address my issues I would fall flat on my face, figuratively speaking. I would eat too much too soon and become sick – putting me off food again; I would overdo attempting to improve my fitness and a seizure would send me backwards and frighten me out of trying again.

LightbulbIronically my “lightbulb moment” came in a dream. I was sat with my Nan in “our” cafe; she clasped my hand in both of hers and said “Always remember love; slow and steady wins the race”. This is something she always told me in life and I can’t believe that I’d forgotten all about it.

The first thing I did was learn about pickling and preserving. Not only did I find that I enjoyed the entire process – from brining to packing – but my friends and family encouraged me in this hobby after sampling my produce and enjoying it. This continued hobby means that I’m on my feet in the house a lot more than I used to be.

I also took up dress-making. Having to cut fabric on the floor in lieu of having a table is a bit like a gymnastic workout: I have to twist, turn, crawl around the fabric and do a lot of stretching – forcing me to use my thigh muscles, the gluteus maximus muscles and to stretch my upper body. As a result I can now stand, sit, crouch, kneel and even sit on the floor with my legs crossed – without pain and without fear of not being able to get up again.

With D’s encouragement I have walked around Asda and been into town with him a few times, and have recently begun to walk to the corner shop with him rather than insist on the car. Initially I was afraid to walk to the shops without my stick, but unless I’ve had a seizure the evening before my stick tends to remain at home for these short walks now.

With all of this increased activity and some help from Compass concerning my non-dependant alcohol issues I now feel hunger. Not only do I now enjoy eating, but I genuinely enjoy cooking and I cook as often as possible. Earlier this week I created Ching He-Huang’s tofu, mushroom, chicken and black bean stir-fry – I even made the black bean sauce from scratch – and I vacuumed it up. I can now say that I have mastered chopsticks, and I do hope that my Mum has found me the Chinese soup spoons that I requested for Christmas, as the sauce sinks through to the bottom of the bowl and it feels wrong to use a teaspoon. Tonight I’m making my famous “ring-stinger” chilli and I am going to relish every mouthful.

I no longer inspect the wine rack when I have hunger pangs; I stick my nose in the fridge.

It doesn’t end there!

Because I’m autistic and often have trouble putting myself across in the way I intend, I’ve spent all these years here in Chelmsford avoiding regular social gatherings. I am actually quite a gregarious, outgoing person who loves to make friends and have a chat, but being autistic means that I’m somewhat afraid of strangers.

However, I’ve hidden away so long that I’m practically a recluse – and that has to end. Next week I’m visiting the local WI for the first time; nothing is going to frighten me off this time. Besides, I’ve promised some of my pickles for the Christmas raffle and so I can’t very well get out of it! I need something to do outside of the house and I need local friends. It shall be so!

I am coming out of my shell; I don’t want to be a Hermit Crab any more, no matter how pretty and comfortable my hidey-hole happens to be.

Do not ever let a disability take over your life; be the master of it and find things that you can do. Yes, you might have limits but, in time, some of those can be overcome.

As my Nan always said:

“Slow and steady wins the race.”

She was right, you know. So very right.

About these ads

About The Hairy Housewife

Media volunteer for Epilepsy Action (UK) and advocate for both epilepsy and autism awareness. Seamstress, cross-stitcher, sci-fi lover, ukulele player and Chelmsford's own Pickling Pagan who wants to inherit a TARDIS when she grows up. In the process of writing an as yet unnamed book, with anecdotes and information about being epileptic and autistic - and seeing the funny side! Also an entertainment journalist for What Culture, where I write about Doctor Who.
This entry was posted in 2012, Accomplishments, Adapting, Adventures In Preserves, Always Look On The Bright Side Of Life, Aspirations, Attitudes, Born This Way, Choose Life, Christmas, Confidence, Cookery, Cooking, Counselling, Creativity, Cross-stitch, Disabled Gardening, Discomfort, Epilepsy, Epilepsy Action, Epilepsy Awareness, Epiphany, Exercise, Family, Fear, Food, Food Experimentation, Friends, Health, Hobbies, Home Crafts, Homemaking, I Stitch So I Don't Stab Stupid People, Life Plans, Living With Asthma, Living With Atopic Syndrome, Love, Marriage, Medication, Memories, Milestones, Navel Gazing, Neurological, Non Fiction, Pain, Patience Is A Virtue, Positivity, Progress, Proud To Be Autistic, Proud To Be Me, Refusing To Be Beaten, Seizures, Self, Self-Realisation, Self-worth, Strength, Tenacity, Therapy, Validation. Bookmark the permalink.

14 Responses to Epilepsy Won’t Hold Me Back Any More!

  1. Yay for your Nan! And G, I’m so glad you’re doing this. You’re taking control of your life and grabbing it by the short and curlies and not letting epilepsy or anything else kick you down. You’re really rather fantastic.

  2. argylesock says:

    I so enjoyed reading this and I so enjoy our now-solid online friendship. Your Nan was a fount of wisdom wasn’t she? We never met but she encourages me.

    • Missus Tribble says:

      My Nan was indeed my rock in a hard place, my shelter in a storm – she was an extraordinary lady and she will always be missed by the entire family.

      I had some seizures this evening… but I know to expect them at certain times of the month so I’m not too bothered about it. I knew to expect them around about now and was more or less prepared for them.

      I enjoy our friendship too – we really ought to meet some day :D

  3. The Heretic says:

    Sometimes it is the little steps that leave monumental impressions. :)

  4. Fiona says:

    This is so inspiring!! I especially love your dream about your Nan telling you slow and steady rings the race. She’s right, and I wonder if you believe in guardian angels?
    It is SO wonderful to read the many ways you have reclaimed your life – it’s been a long hard journey, and there have been so many times you were scared – and yet, you never gave up.
    You truly give me hope. xx

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