Last month I wrote about my timetable and sensory diet. This post is a bit of an update about some of the things we have learnt.
The key take away is that I am much much happier and less anxious. Here are some of the changes we have made.
Embrace the Derp.
Derp is what we call the rather spaced out unfocused headspace I get into when i am overloaded or tired. Forms of Derp vary. It varies in intensity and mood.
There is being a little derpy (a bit spaced out, less speech, clumsy) and very derpy (no speech, extremely spaced out, probably hiding under something or in bed with lion)
Then there is happy derp (very bouncy, very excitable, sometimes very loud!) and bad derp (very anxious, crushing chest feeling, can turn into a panic attack).
My friends sometime refer to my happy derp as being a bit like a 5 year old because my sense of danger is a bit poop. happy derp is fine but often results in lots of small injuries (burns!) and getting a bit run over.
Since we adopted the timetable we have seen an increase in the derp. I think this is because I am muuuch less anxious. Previously my anxiety scale was from 0 – 10. But via the timetable i now have a new anxiety level of -5 :)
I am really happy to swap much less daily variation and more derp for being less anxious and much happier.
My friends are also saying they welcome the change. Because while I am more derpy. It is generally happy derp. Before I got very deep derp more often and it was bad derp. Light happy derp is much nicer for everyone :)
Derp isn’t new. What’s new is i am trying my best to not feel so bad about it. I do struggle with feeling guilty when I get derpy. But for now I am trying to put that aside while I look to find ways to get stable.
I have a base daily diet which is the same every day. For breakfast I eat (gluten free) cereal. For lunch bits of chicken on sticks and a banana and for dinner potato waffles and salad.
I eat that every day. I then add other things I like as and when. I get support to make sure I can always have those three meals. For example, if I not able, someone else makes sure that lunch is in the fridge for me.
Finally, at the moment I don’t cook the waffles (someone else does!) that bit will change in the future. The focus right now is still finding stability.
This has been a key driver of my reduced anxiety :)
I really really like knowing exactly what I am eating.
I preselect my clothing for a week at a time. This means I don’t make any clothing decisions day to day. Everyday has preselected underwear and a t-shirt. Jeans are a special case as I only wear a single pair (I don’t go out if they are in the wash)
This has also helped reduce my anxiety. It’s one less decision. I know what I am wearing and i know where it is. Once I get out of the shower I know what to do. Much happier.
I have learnt something important. There a difference between what’s possible and what is comfortable. I had become very very good at managing my discomfort because I believed that was the correct thing to do.
I need to credit this lesson to my line manager at the BBC. I didn’t accept it at first but he turned out to be dead right.
These days I am trying a period of just making changes to avoid discomfort.
So far its working out great. Often considerably extending the amount of things I can do.
For example, with travel I am getting more support. On Friday i traveled to a friends. It’s a long trip all the way across london and I have always hated it. However these days it’s gone from ‘hard and uncomfortable’ to ‘stressful / really horrible / borderline dangerous’.
So we have redesigned the way I do the trip.
It’s now a single train. I get a taxi to the station at one end. (£4, only £1.50 more than the bus!) and my friend picks me up at the other.
That’s how i traveled this weekend and it’s been great. This weekend I did lots of things and I think i was able to do so many things because I was less stressed traveling.
Another thing, unlike normally when I head home from this friends house. I feel far less anxious about going home.
A large part of my increase in happyness is due to much more support in my life.
I use to get as much support as was possible to be provided by the people around me (who did a damn good job!)
I now get about as much support as I need.
Mostly it’s simple things. We very carefully limit the amount of time I spend alone at home. I don’t feel safe in my home and I don’t like being there. We’re working on fixing that, but for now we just minimise exposure.
As I mentioned before, a friend lives with me now to be around in the evenings. Other friends also visit.
The final step is we’re now getting extra help from paid support people. We have just started meeting with someone who will hopefully be able to provide another option in the future.
This is very exciting for me. Because with the paid support I don’t have to endure the anxiety / panic attacks because everyone is busy. It takes the pressure of my friends and generally makes everyone happier
Finding the money is a challenge. But I think it is money well spent.
On first meeting the support lady we’re currently talking too I was in very deep derp due to a really rough day. They didn’t run away. So hopefully they will stick around so we can build trust.
I am meeting the support person again tonight for a few hours. I am quiet nervous but also a little bit excited.
One day this approach may mean I can do some of the things I have wanted to do but not been able to get enough support to arrange. It’s a different type of freedom.
This post is getting long so I’m going to hit publish so it does not get trapped in the drafts folder!