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a day makes….
On the back of my miserableness and effective house self arrest and after a difficult night last night I am today, well en route to feeling back to my semi sparkling self.
I saw and felt sunshine.
I saw and spoke to outside human beings.
I drank coffee and ate salad.
I finished Christmas shopping for last year. Yes yes I know, but my girlfriend and her hubby (the iPumpkins mentioned here) believe Christmas is whenever you decree it (at least in terms of the get-together, if not the birth of Christ stuff, although there is little if any proof that the birth was ever the 25th December anyway so ….) On that basis Christmas iPumpkin style is this Saturday night. On that basis I hurriedly raced round the shops doing the last bits and pieces and making shop assistants smile at the thought that I was still doing my Christmas shopping!
I saw birds and water.
I wrote.
I felt useful.
I didn’t feel ill.
All in all a good day.
Thanks for the concern all
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There is something very strange that happens when the Powers that be lay you low unexpectedly as has happened recently. You lose any misconception that you had it all under control.
People who know me offline don’t need to panic. It’s nothing physical, yes I’m fine physically save for the side effects of medication A(which we hope are being mitigated by medication B which is causing unpleasant but recognisable reactions in impairment C). It’s mostly mental, and practical.
Even when you try to accept that this will be a change in your circumstances whether temporary or more permanent and adjust your own expectations and activities to not push the boundaries of this newly contained box you find yourself sitting in the middle of room with every contracting walls. While I accept in principle that “this too shall pass” and that historically, I find ultimately that times of enforced retreat are in many ways more effective and strangely reflective. I am finding it hard. Lonely too
I am sadly finding that even reading escapes me, much less going out and talking to folks, something I need to be doing at a managed pace and can’t as easily because part of my trouble is tummy based.
Sorry. With everything that has gone on in the disability space today there were other things I could have talked about, but not today. Just wanted to let you know what was going on for me at a very granular level.
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It has being very much a limbo time for me. December was a hard month. January is looking brighter; but I am waiting for some dots to connect.
I’m waiting for a space with a new specialist. Looks like I’ll be waiting till May, which kind of means that I can’t really start the rebuilding project that I committed to before Christmas.
A home care service has started; personal care and house work. It’s interesting having my time managed by somebody else to the extent that it has happened. I think they have the impression that because I don’t work I don’t really have a life. I hope these are just teething problems.
After watching previous seasons of The Biggest Loser over the last couple of weeks I’ve been thinking more about my body and fitness. I wasn’t really given a lot of information about or options as a child and teenager about what to expect from my body or even a clear sense of fitness options beyond standing frames. I wasn’t involved in sport (even wheelchair sports). This is no one’s fault, but I do feel like I’m missing out on getting the most out of my body in terms of the strength that it has and weight loss options. Yes I do have a belly! Fitness is also a good distraction and stress management tool.
So I did a bit of digging and found this. I am ashamed to admit that I don’t even remember being told what sort of cerebral palsy I have, so I guess I need to start there. I could make a guess but given I’m going back to see the GP on Friday I’ll ask.
For example, I’ve realised as I written this using voice recognition software again, how much of a tactile person I really am. I’m impressed with how quickly I can get things “down on paper”, I do miss typing. So I think exercise will be good for my head as much as anything else. It might also help me reconnect with my form and stop feeling like a head on a stick.
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Dear All,
I’m sending this out on a personal note.
In simple terms this email is a thank you. It is international Day of People with Disability. I refuse to deal with Christmas till after today every year!
Regardless of how stage managed events around it need to become to raise the profile, IDPwD is intensely personal and profound for me.This year it is quite emotional for me. For me it is an opportunity to take a big breathe and acknowledge the journey, the wins, the losses and the inevitable work arounds. This starts with looking at my own life and using that reflection to look outwards. It involves giving thanks to all the powers that might be and to those in my circle who give me strength and courage and other resources to make “it” happen. You are each getting this because you have personally helped me “run that gauntlet”
Interestingly, looking out for a minute I see a big disconnect between parts of the messages that are being sent out this year. Domestically we are being told to celebrate the successes and the achievements and while fighting for the NDIS, keep it light and fluffy and a-political, This is even though there are enough people with disability to fill Victoria and we are under-utilised and more likely to be in all sorts of other not-nice minorities as a result .
On the other hand, the United Nations who proclaimed the annual observance in 1992 still tell us that:
“Persons with disabilities make up an estimated 15 per cent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as care-givers or family members.
Persons with disabilities encounter many disadvantages in their societies and are often subjected to stigma and discrimination. They remain largely marginalized, disproportionately poorer, frequently unemployed and have higher rates of mortality. Furthermore, they are largely excluded from civil and political processes and are overwhelmingly voiceless in matters that affect them and their society”
I think this is a call to action if ever I heard one!
I think the truth lies somewhere in the middle and that for those of us who are “active participants” have the balancing act ongoing. It is because of people like you that I find the strength “to run the race before me”, even if we never talk about disability! Thank you from the bottom of my heart. . It takes courage to be sit on the margins. The marginalisation may have have changed but it is still present and I still feel it so thanks for the gifts of courage I am given in the big and small ways..
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