Up To Date

I've been doing quite well, trying to spend less time in front of the iPad. (hence the fewer posts!) I've started moving my social life slightly away from the online network and am seeing a few friends from Church once a week. Knitting club is becoming easier to manage too. Once a month we meet up and I have managed three out of the last four months. Considering I did one in the previous twelve months, that's pretty good going. A friend is also coming round with her son once a week after school, which is a great way to start seeing people regularly again and keep in touch with those who really matter. It is amazing, and for some people totally incomprehensible  that sitting with people, even really close friends, and chatting, even listening to others' noise can be quite exhausting. You'll probably remember the sensation from when you have a headache or the flu coming on, but this can be constant and needs understanding from others, or complete avoidance!
With the colder weather I am indoors more, can't really sit in the garden when it's pouring with rain or blowing a gale! But it is really cosy in our sitting room with the multi-fuel burner roaring away. We have also achieved our promise of buying a new sofa and chairs at the end of this summer. So I can actually sit in front of the fire in comfort. A couple of times every week I am managing a short walk too. Which I am really enjoying. There is a river in our town and I am five minutes from a bench in a very quiet location where I can sit and watch the river wildlife enjoying its day too.
 After my seizure a couple of weeks ago I have had a metaphorical slap in the face. Before then, for about 15 years, my seizures were all during the night, or at least when I was asleep in bed (with the ME that was sometimes a daytime option!) So I have got out my silver talisman bracelet, which contains my medication information, next of kin, phone numbers, home address, all written on a slip of paper and folded into it. Paramedics and first aiders are trained to look for it. I have attached it to my keys as I know I won't leave the house without them and am unlikely to wear my talisman bracelet every day around the house (it is rather heavy and uncomfortable)
So as mentioned in the previous post I have reached the 6 month date since starting The Gupta Programme. This is quite a milestone for me as I realise how far I still have to go, but looking back I also realise how much I have recovered since starting. The other tools which are still helping me are reassuring. And I know I have private coaches to guide me if I find any times particularly difficult.  These last couple of weeks have been difficult, but I'm managing on my own. I'm staving off a cold and doing very little physically. Knowing that I have to give my body time to fight this virus helps me get through. Pushing through it is likely to push me backwards, as I have mentioned before in my blog, I have to sit down on the rung of the ladder and look at the view for a while, so I don't start falling off it again.

Walking Boundaries

I cannot emphasise enough how important it is to choose the right boundaries.
I am learning as the months go by that my recovery has to be decided by me. My physical limitations have to be stretched and pushed... but only so far and within good boundaries.
Where and when I decide to stretch those boundaries is probably just as important too. Going for a walk started with meditations around the garden, then walking, with my husband, where no one knew us, on flat ground, with a wheelchair in the car if I needed it. I wasn't panicking or being overly cautious, I was just aware of my needs and stretched them accordingly.
So where this happened was important. Being in a place where I was unlikely to come across friends was important. Friends can be the most understanding but can also decide to imagine the best and be incredibly positive ("wow you're walking, how about we go shopping together next week, or I bring my children round to see you for the afternoon!"). Also they can start worrying and suggesting the worst ("Why are you walking, you should sit down, do you want to lean on my arm, you are silly for doing this, I could have got you anything you need!").
So positive and negative input could be found, but I had gone out knowing that it was the right time and place to do this. I needed this input from my own head, rather than anyone else's. Also meeting people who want to chat and ask how you are when you're taking steps outside for the first time in many months is not going to help!

When I stretch these boundaries has proved important too. I first walked outside  as described above in a town centre... but late on a Sunday afternoon. Shops were quiet, people traffic was very low and the pedestrianised high street meant that I had no standing and waiting while vehicles went past. I have done the same as I started walking alone from the front door. I was doing walking meditations from my doorstep and short walks around the block now when there is less chance of meeting people.
One mistake I made this morning was walking to the doctor's surgery because I had to. I should have asked for a lift. Doing things because they have to be done at a certain time on a certain day is just not realistic. I know I have to do what my body wants to do, when it wants to do it. And if that means missing out or doing less than I hoped I know it is for the best.
I'm happy to know that I am doing well with my boundaries as they give me the chance to recover at my pace and not anyone else's

Conversations Are Difficult

OK, we all have awkward conversations occasionally- maybe the need to tell someone something is there so the topic might carefully be avoided; it is a lot easier than getting a fist in your face!
Apart from a very few people, all my conversations are difficult. Thinking, speaking, being aware of body language and social rules, maybe being in an unfamiliar situation or on an uncomfortable sofa, it all takes so much out of me that I can flake after 30 minutes.
Simply mentioning the fact that I use a wheelchair or that I finally had a breakthrough with the disability benefit, can bring up a whole plethora of difficulty; in some conversations it would just pass on by, but with others it becomes a whole new issue. Explaining, defending, becoming personally disbelieved or degraded. These conversations are few and far between but they happen none the less and when they do I can be put down energy-wise for days at a time.
More recently just socialising more than two or three days in a week has been my problem. Oh, an hour for a cup of tea will be fine, but when it lasts longer because we need to see each other and want to catch up it can also become exhausting. I attempted this a few weeks ago. I loved seeing them and wanted to catch up so desperately that I let the time go by, continued talking and I'm shot for the next few hours.
I also have a husband to converse with every day; peace and quiet doesn't enter the house for more than a few hours at a time. Having him there is so much more of a blessing, but some days I have to stick metaphorical gaffer tape over his mouth as I just can't concentrate on another conversation.
Just a knock on the door out of the blue, as simple as the gas network needing to service the meter, adds to the confusion. Something being delivered which takes more than five minutes of conversation to sign the right pieces of paper and get whatever it is actually off the van and in the house. All these things add up and yet again my conversation has been and gone for the day.
Another thing which needs more monitoring. I have to do it so carefully though as more monitoring can lead to more worry, confusion and anxiety- the very things I am trying to eliminate from my life. Re-integration into the big wide world of health is all very well, I just wish sometimes it could happen overnight!