This morning I'm in one of those up and positive moods where anything is possible. it's in no small part thanks to a visit to the doctor which went extremely well and all down to my support worker and an electronic note taker.
I'm not sure if my support worker will appreciate me revealing her name but she's come to be a very important part of my life recently. Zoe works for Deaf Action and frankly without her assistance there are days when I couldn't function. Because of council cut backs my time with her is technically limited, but even those few hours per week make all the difference in the world. She organises things, makes endless phone calls and acts like a mother hen despite the fact I'm decades older than her. People like Zoe are the salvation of people like me, although strictly speaking her time with me is limited she'll do things for me outside the allocated period, that sort of effort means everything and more so when she spends time just listening to my whines. With Zoe on hand to remind me of things I'd intended to ask the doctor and the note taker typing away in large font on a lap top, I found for the first time in years I knew exactly what was and wasn't wrong with me. I have to gloat a little because my own self diagnose was correct, I think people suffering dual sensory loss have sensitivity to their own bodies, perhaps one of the many ways the body allows other compensate. The down side is any changes in general well-being seem to be more highly emphasised. One of the bug bears of any disability is increased stress levels, in the case of acquired deafblindness communication and isolation along with restricted activities certainly add extra diminution.
Thanks to Zoe the doctor has agreed to refer me to the local gym and swimming pool, Zoe plans to accompany me and the doctor will assist my bid to get additional support hours from the local council.
I can never plan ahead on anything, I never know what level of ability I'll have on a day to day basis. The only time I do make plans are for appointments or my beloved voluntary work but even that can be touch and go, being forced to drop out of giving a talk and spreading the word about dual sensory loss always upsets me. I've recently found out the funding for the project I work with runs out at the end of March. I'm devastated because talking to people and letting the world know about deafblindness means everything to me. I visited the local ob centre again (I'm a regular visitor there), asking them to help me find means of getting a note taker and guide to enable me to do voluntary work independently. There's so many area's in society that need to be taught about disability awareness, patient awareness and deafblind awareness, unfortunately as usual the job centre couldn't offer any new advice. I'd love to have a meeting with the powers that be who decide to make cut backs and impose even more restrictions on disabled people. I'm sure I could enlighten them on a few facts!!
The weekend ahead should be an exceptional challenge for me. Three of my daughters now hesitantly and grudgingly are starting to accept I'm not the mum I used to be and taking note of the fact I'm cut off from so much. They've asked me to accompany them to a friends Birthday bash. Even if my vision is stable it'll be a huge challenge lingering round in a semi dark venue surrounded by people I won't be able to see or understand. But I've decided to set myself new challenges and goals, after all I claim to be a survivor I ought to prove to myself I am. I might chicken out at the last minute but if I do go at least I'll be able to say to myself. I tried.
I've got another challenge ahead this weekend too. Two of my grandsons want me to go to Edinburgh with them, it'll mean taxi's trains, crossing busy roads and heaven knows what else. My oldest grandson is 16 and has pledged to look after me well. These two things might seem simple to most people but for me they'll both require a lot of courage and Herculean effort. As I said I can't plan ahead but I've come to the conclusion if I don't set myself goals and challenges then life will just pass by and the only substance to it will be the memories of long ago before dual sensory loss...
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