A return to blogging

Hello and welcome back to my blog!

Thanks for coming back and for being so patient during the four months since my last post.

I think the blog break has been good for me and it has been nice to be free of obligation for a while. That said, I really miss the contact with everyone and I'm hoping to get back to a more regular routine of posting now.

Despite being four months since I last wrote, the work on our unit is still underway. It has started so that's great, but it's been more complicated than expected. Hence the repairs are going to cost more, and we're still living under the same conditions as we have been since February.

Brighton Pavillion

We made the decision to take ourselves out of this environment for a while and so in August, we headed overseas. We spent a month in Brighton in the south of England and one week in Paris. We chose Brighton because it gave us a seaside holiday surrounded by history in a very arty town, without the challenge of managing a foreign language. It's also only 50 minutes by train to London. The holiday worked well for us, and we came back feeling much brighter and with more energy, which is just as well, because as I said, things haven't gone entirely smoothly with the work.


Over the past months, I've also put some energy into trying to understand how I need to pace myself in order to conserve my energy. I've learnt that it's important to build up energy before I spend it, rather than being active first, letting myself become exhausted and then having to rest up and recover. That process takes a lot longer to return to zero, than if I rest before and build a reserve of energy to use. Of course this requires certain amount of planning, a certain amount of knowing what is coming up, and life doesn't always give you that warning, but where possible that's the way I'm trying to organise myself.

Beachy Head - famous "jumping off" spot in Quadrophenia

Also, using a few different assessment mechanisms I've worked out that my energy is about 25% of what might be thought of as "normal". That may seem depressing or disheartening, but in other ways it has been very freeing. Information is power, and just having that 25% figure in my head allows me to be a lot more realistic about what I can expect of myself. It allows me to rest pre-emptively and not feel guilty, which believe it or not isn't something I've really been very able to do before. I've always felt that I have to keep going until I feel exhausted and then, and only then, was it okay to stop and rest. Now I know that that's not the case.

Bex Hill

I think the other thing that it has allowed me to do is to be pretty ruthless when it comes to prioritising, and it's been a bit of a surprise to realise that I hadn't already been being ruthless in this. I have been prioritising for many, many years obviously as you have to when have a chronic  illness but now I am really getting down to that one or two, or maybe three things, that are absolutely essential and give me the most pleasure. Those are the things that I can and will choose to spend my time doing. 

For that reason, I have to say that I probably won't be blogging at the rate that I have been in the past. I've been thinking that perhaps it'll be more of a monthly update, with maybe a smaller post  in between that's mostly images if I'm being productive. I really hope that you'll understand this and that you won't feel let down, or that the blog is diminished by this. I considered actually stopping blogging all together, but I realised that I have made so many great friendships through my blog and that the exchange benefits from being mutual. I could just visit your blogs but sharing something of myself allows you to come and visit here as well and helps the relationship to develop greater depth. 

Book sculptures used in a window display in a clothes shop in Paris

 

I'm very happy to report that since I returned from overseas I have started being creative again. I've been finishing off some projects that stalled about 12 months ago, so I'll be sharing them in the next couple of posts, and I've also got some things to share with you from the trip overseas. I met up with a book artist in Brighton which was very exciting and saw some great stuff in London, so that's coming up in this space very soon.

A Blog Sabbatical or Going Into Hibernation

With the lack of activity on this blog, you may have already thought that I had taken a sabbatical from my writing "duties". In a way it's true, but I want to make it "official" so that you don't feel that I have just run off, abandoning the inter-web and never giving this blog or you another thought!

This year seems to be a challenging one for a lot of people, and that has included me. You might remember that in January I blogged about one room in our home being inundated. It might amaze you to hear that the room remains unusable and the repairs have not even been started as yet. Or maybe it wouldn't. That is if you have ever had to deal with insurance companies, bodies corporate and builders.

I don't won't to bore you (or myself) with all the details, but the crux of the problem is that people with ME/CFS just don't have a great reserve to deal with things when life throws a little extra at you. It happens to us all from time to time, and I don't expect to be excluded from those times and events, but I do need to be realistic with how much I can manage.

You may think that after six months we must be nearing some sort of solution to all this, and I am hopeful that some work might start in about four weeks. Or maybe six. Or...who knows?

Ultimately I have had to look even more carefully at my priorities and and I can see I must improve my self-pacing. For some months I haven't really been coping with it all: living under cramped and damp, moldy conditions, trying to move things along with the repairs and running the home. It's been pretty much impossible to find a bit of time to be creative and to see friends, the things that keep me sane! And even more worrying, I haven't really wanted to do those things.
About a month ago I found the Treating CFS and FM website, which has loads of very useful information, particularly in relation to pacing. This is something on which I've never had any professional guidance. I've always had to try to make intuitive judgements about how much energy I had in relation to how much I would need, and I have to admit to being pretty unsuccessful more often than not. 

These past months my energy has been whittled away, and with it my "joie de vivre". It hasn't been a lot of fun, and I really need to find some better ways to manage things. I feel the need to withdraw from "the public eye" for a while, so I can spend my time with as little need for external time-keeping, and see whether I can work out some strategies that work for me.

I did consider sharing that journey here on this blog, but I don't think that is what interests most people who visit me here. Also, I don't really know where I'm heading with this or how I'll be getting there. It could be incredibly tedious filling in of charts and mapping of symptoms. On the other hand, I may decide I could really do with some morale-boosting along the way, and if that is the case, don't worry, I'll raise my arm and you'll know I'm not just waving.

"The Great Library" selected for "Books Beyond Words"

A new podcast in which Amanda shares some exhibition news and invites you to join her at Impressions7 on Monday afternoon.

listen to ‘"The Great Library" in Geelong’ on Audioboo

Take a look at the "The Great Library" below

                            


Check out Impressions 7 with me on Monday from 1-4pm. Closes Wednesday June 12th.