How do you amuse yourself during the day?

[Valentijn]

It was music, watching the bird-table, Terry Pratchett and similar books, and sitting in the garden.

Ooh, I like the Discworld books too! In fact, I play an online text-based game based on the novels: http://discworld.starturtle.net/

Sometimes I just chat a bit if I don't feel up to killing cute little fuzzy things, etc.

 

[Mya Symons]

I make organic Beauty products. On a good day (I'm still lucky enough to have those), I sit down in the kitchen and make conditioner and sometimes soap. I make enough for the month in case I don't have any more good days that month. I have become a bit obsessed with it. My husband helps me because I can't open any of the bags or bottles. My hands and fingers don't work the way they should. So far, he is still able to do that. I also spend a lot of time on the net studying emulsifiers, solubilizers, additives etc. I really like doing this. If I ever get better, I think this is what I will do as a business.

 

[Graham]

Hi Valentijn - in theory I buy the Terry Pratchett books for my son - but he's not fooled either. He always passes them straight on to me as soon as he has finished. I wonder what Discworld would make of the PACE trial. Perhaps that should be our project. It sounds like we need to invent a new guild: after all there are ones for the thieves and for the assassins.

Hi Mya - perhaps I should spend some of my time using organic beauty products: I was immersing my hands in my very organic compost heap only a couple of days ago, but that hasn't made me more beautiful. It must be so frustrating not to be able to open bags and bottles though: good thing that your husband can help. I think that those people who are single with ME have things especially tough.

 

[Morgaine]

We don't need a new Discworld guild for the PACE trial lot, there's already a Fool's Guild!

Terry Pratchett has definitely helped me to hang to my sanity for the 24 years that I've been ill. I'm listening to the Witches stories on audiobook at the moment. I've nearly finished A Hat Full of Sky. Will probably then do the City Watch stories, as the next book out is a Sam Vines one.

 

[SilverbladeTE]

When Death comes for Wessely, I wonder if he'll appear inside his skull and say "DARK IN HERE, ISN'T IT?"


and not a death threat, it's humour!

 

[Valentijn]

We need Igors! For cleaning up, fixing us up, and I bet they'd know what to do with a PACE trial author

 

[Graham]

I'd think twice about reading all of his books Morgaine - it can't do your sanity much good - just look at me, and I have read all of them, several of them twice!

Actually, if you want a really good benefit of having ME, it is that you can save a lot of money on books and films. You only really need a few. By the time you have read or seen them, you have forgotten what the earlier ones are all about, and enjoy them all over again.

 

[Morgaine]

I'd think twice about reading all of his books Morgaine - it can't do your sanity much good - just look at me, and I have read all of them, several of them twice!

Oh dear, far too late for me then, I think I picked up my first one in 1986 & I dread to think how many re-reads I've done now!

That's why I like listening to them on audiobook, they're familiar, comforting & funny. I can just relax & let them wash over me, & if I zone out or doze off then I still know what's going on & don't have to try & replay the last bit I remember to try & figure out what's going on.

Silverblade, I think it'll be the Death of Rats who comes for 'You Know Who'...

 

[Ocean]

Thanks Graham,

For me brain fog isn't my worst symptom. The flulike symptoms and PEM are the worst for me for now. But I'm guessing I have significant brain fog and am just so used to it by now that I forget it's brain fog and just think it's normal.

So great you were able to start a support group. I would do the same I think if I were well enough. Right now I can't even go to a support group even if there was one in my area.

Let's see hobbies. Well things I like are art, music, nature, the OCEAN reading, movies, walking, running, museums, animals, cooking. I really miss being physically active. Like it seemed it was for you, that was a big part of my life for most of my life. I see people jogging and think how just that bouncing up and down like that even for a couple seconds would make me so sick.

When I'm better I can engage in some of those things, obviously not running but some of the others It's been a while now though since I haven't been able to. I've been trying to rest up and get out of a flare but just got another fever bad sore throat headache combo started last night, despite being inactive and housebound for a month or more. Maybe I need to really amp up my rest. I'm home and inactive, but not getting enough sleep, and maybe need to do more rest periods during the day.

Thanks for the photo idea, I may just pursue that one!

All the best to you!

 

[Graham]

Hi Ocean

Sorry to hear how things are. I'm not an expert by any means, and you will get all sorts of different advice from different people, but my life started to improve (6 years in) when I got something to help my sleep pattern. It wasn't sleeping tablets, but strong co-codamols. Now I go to bed around 2:00 am, half-an-hour after taking them with hot-water bottle and overnight electric blanket on low, and they get me through the bad 4:00 patch, with a decent quality of sleep. By 8:00 I'm nice and warm, and sleep on to 10.

It sounds like you and I share a lot of interests (or would have!).

 

[Ocean]

Graham
Thanks so much for the tip. I usually respond to pain medicine by becoming more awake. But I haven't taken codeine (I think that's what co-codamol is?) in many years, maybe I wouldn't have that response to it. I've tried so many things for sleep without success and with too many side effects or opposite effects of what's intended, that I've been trying to not take anything, but that isn't going so well either. I may see about the codeine, can't hurt to try it at some point. Thank you and I'm so glad to hear you got some improvement. Hopefully we can pursue our interests more in the future as we somehow improve, who knows!
All the best,
Ocean.

 

[anne_likes_red]

I've been researching my (Scottish lines) Ancestry. That can be pretty time consuming.
.....Spent most of Saturday walking the streets of Glasgow and Stirling, courtesy of Google streetview!
I feel surprisingly like I've actually been there! None of the people I passed waved back though


PS Mya, it's lovely that your husband helps you in your creative pursuit.

 

[Graham]

Well, I'm promising nothing. But that is how pain medicine usually affects me (if at all), but these were prescription strength - 30mg codeine and 500mg paracetamol: I only take two at night, and that does the trick for me. I did try sleeping tablets which knocked me out, but it wasn't refreshing sleep. My son also has ME and is similar to me, but they don't do the trick for him. But it's a simple thing to try with a small chance of success.

So returning to the theme, what sort of music do you all like? What makes you feel good? For me, since getting ME, I have grown increasingly fond of the sort of mild jazz-ish music of people like Nat King Cole etc. I've started to learn to play an instrument, and my first two tunes were Rambling Rose (that my dad always whistled as he worked) and On The Street Where You Live. I'm not that good, but as I am the only one who has to listen (headphones!), who cares as long as I enjoy it? I am useless at singing, but I often sing something when I'm alone driving the car somewhere. The trouble is that I can't concentrate on the driving and remember the words at the same time, so lots of it is La La Um La.

 

[Ocean]

Graham,

What instrument are you learning? I like most music, but some favorites are blues, rock, folk, jazz, classical. I do like that "mild jazzish" music too. I haven't listened much lately maybe because I've been doing so much worse but maybe I will give something mellow a try so as to not get overstimulated. I'll check out the two songs you mentioned, thank you. Do you like "Just the way you look tonight" or "Stormy Weather"? Those are two songs I enjoy.

 

[Ocean]

anne likes red,

I love street view! I find I'm living more and more vicariously through things like that since being stuck at home so much. Good idea to explore different countries!

 

[Graham]

Anne and Ocean, there's so much in common here! I spent quite a while tracking through my ancestry online in the early days - a bit mind challenging at times, but easy to pace according to how I felt. The trouble is that the free 3-month trial at Ancestry no longer runs, and it is expensive otherwise. There are other routes though. And street view - a great way to travel!

Our musical tastes seem to cover the same variations, Ocean. I like the two tracks you mentioned. At the moment I have got Ella Fitzgerald and Louis Armstrong singing "The Nearness of You" going round and round in my head. I'm learning to play an EWI - really I want to play a sax, but it needs a lot of puff and I couldn't inflict that much noise and pain on my family, so this is a compromise. Someone left me some money in a will with instructions to buy something frivolous.

 

[Ocean]

Graham, That looks like a great instrument. So glad you have that musical outlet!

 

[November Girl]

I am totally hooked on beadweaving - i.e. sewing little tiny beads together with a needle and thread into pretty jewelry. Maybe Wesseley's right about me - I really am bonkers!