Wednesday, 28 January 2015

phoenix rising

i am amazed at how one can be born into chaos, suffer rape, survive cult, endure domestic violence, create a successful career and lose it to discrimination and harassment, then lose physical health, lose mental health, lose partner, lose family, lose home, lose work, lose dog, lose community.. and then, without any of those things being replaced, find the only thing that truly matters..

maybe it’s how a phoenix is born..


Friday, 16 January 2015

Our outdoor struggles and how to fight the downers, by Michael Baker

Hi everyone, another blog for you, following on from my first back in November. This time I'd like to discuss how our routines get affected by such illnesses, using my own experience, as well as some ways to help yourself.

I used to be quite an active person. I was never the Master of Activity of course; indeed my Dad often tried to get me out of the house and do more exercise and not be indoors so much on my laptop, but heyho! But I was able to attend the gym three or four times a week, wing chun (martial arts, for those who don't know) twice a week, and take walks maybe a couple of times a day.

That was before my chronic fatigue began. I'm a lot less active now. I can't manage the gym at the moment, haven’t been in eight or nine months. I did try once or twice but I only managed ten minutes or so each time and wound up in bed, exhausted, for days afterwards. The payoff just isn't worth it while I'm like this.

My walking has also been greatly reduced, although recently I've been taking steps (pun intended!) to get out more. I haven't done any martial arts in nearly six months, but hopefully I can attend more as I start to recover. I really miss it and the guys who I train with, though I'll be easy pickings when I return!

It can be very difficult for those of us who suffer from chronic illnesses such as this to keep our spirits high. One thing I do is create a big list of things which make me happy, and do all I can to make those things happen, as often as I can. Being happy really improves your outlook, so I suggest we all give it a shot! Here is my list:

  • Gaming, video games and elsewhere. I play games a hell of a lot, it keeps me sane and keeps my mind nimble and entertained.
  • Spending time with friends
  • Eating good food
  • Watching tennis
  • Spending time with my wonderful girlfriend Vicky
  • Meditation
  • Writing and world-building

We will all have different happy lists; I'd love to hear yours!

Regards all.


Tuesday, 13 January 2015

To simply be there

I was chatting online last night with someone I’ve known for a few months. We’ve talked several times before and although we don’t know each other very well, I consider her a friend. Without going into details, she is going through a pretty rough time.

I’d offered what I hoped was gentle support as well as suggesting a few options in response to what she was saying and things we’d talked about in the past. She quietly thanked me for my suggestions but mostly didn’t seem to pick up on them. I realised I was perhaps trying too hard, and messaged her privately. The following is excerpted from our conversation, with her permission.

You get to tell me if I am being too pushy, suggesting things all the time. You won’t hurt my feelings if you tell me. You are the one living with all this, day after day.
Sometimes you need to remember that things aren’t as straightforward as they should be. And that can be because I can’t do something because I’m ill, or because the services/help/support isn’t there.
Thank you.
What for?
For being straight with me.
... also, most of the time when I’m upset, I’m not looking for a solution, just support and kindness. But I know it’s hard not to want to try to find one!
Yes it is! I’m smiling, because I should know that one by now! You are fab, and I am glad to know you.
And you’re silly!

I was still thinking about our exchange as I walked into work this morning. I’m used to navigating things with Fran. We are close friends with a good deal of history behind us now. We have been through a lot together, as you might say, and whilst I don’t get it right all the time — far from it! — if I say or do something that is unhelpful to her (or vice versa) we generally let the other know there and then and get it cleared up.

It is fundamental to our friendship, and my ability to be a supportive friend, that each of us feels safe expressing and exploring what we feel and think. But not everyone is able to do that, or wants to do that, or trusts enough to do that, with me or with others. And that is okay.

It felt good that my new friend trusted me enough to speak up, rather than keeping quiet for fear of upsetting, angering or distancing me. I hope she feels that was a healthy thing she did, even though it was something I imposed upon her by my clumsy approach. For my part, I got a valuable reminder that each person and friendship is different, and a person's needs vary. Practical assistance, suggestions or challenge may be appropriate responses at times, but what is most needful is to listen. To simply be there, open and present to what is happening.

It cost my friend energy and effort to remind me of that. I hope she feels her silly friend is worth it.