How do you amuse yourself during the day?

[Tristen]

It's so nice to know that I'm not alone in that... I'm quite bad right now (bed bound), and to top it off only got my diagnosis a few months or so ago. So I'm fighting to learn everything I can with the limited energy I have. It often feels like the illness becomes all-consuming, though. It gets hard to keep it from creeping into anything else. I'm trying, but it's tough. Feels good just to know that other people have that when they're really bad too.

Right now I'm at the stage where I'm trying to force myself to read tiny amounts and such just so my brain doesn't forget how. Tried audio books, but they seemed to really tax me. TV sometimes, but it's taxing too. I was still trying to be more active online for a while, but wasn't able to keep up anymore and finally had to make the decision to put the laptop aside for most of the day. It's very easy to get sucked in to searching for treatment, or just reaching for any kind of social contact, but I'm not really well enough to handle long stretches and don't seem to have the willpower to stop after a reasonable time. Sometimes I try self-hypnosis or medication CD's. Do a lot of lying with the cat or staring out the window. Now and then, I'll spend some time imagining that I'm dancing, or jogging or something (they say visualization is enough to help people get better at basketball, so I figure it can't hurt. Maybe it'll keep me more in shape. ). Sometimes my husband lays me outside on a lawn chair, and I think out there (that's really nice for a change of pace). If I'm up to it now and then we'll take a walk with me in the reclining wheelchair.

And spend time thinking of all the great things I'll be able to do when I'm just a little better. I do a lot of that.

I certainly feel ya there Sparrow. I spent 3 years in that bed bound abyss and know how brutal it can be. Hang in there, your with people who understand and care. Even though your new to the diagnosis, your sure to of heard the basics for minimizing progression and giving the best shot at improvement. Keep stress and exertion (for you that's getting to the bathroom) to an absolute minimum, including on the feel better days. Get in with a good doc who knows this disease.

Mentioning using your imagination to do the things you can't, reminded me of my severe phase when I spent time in the virtual world. It does require getting on the puter, but places like SL (Second Life) were great for me because I would put on the headset and go dancing, go bike riding, car racing, magic carpet riding, exploring beautiful gardens, and most important of all, socializing. I could do all the things in the virtual world that I couldn't do in real life. The interpersonal connection element in virtual sites, is like 50 fold that of just text chat like Skype, AIM, and message boards. I hear that SL now has a me/cfs group too. Something to consider.

 

[maddietod]

Tristen, how do I choose a good headset?

 

[Tristen]

Tristen, how do I choose a good headset?

Actually, I just bought a cheap headset from Radio Shack for like $20.00. Still have it and it works fine. Not sure what to recommend if you wanted a really quality set able to handle high amplification. But they do carry several.

 

[Misfit Toy]

Today I woke up in horrible pain and with little sleep. I have been getting 5 hours. That's it. After that, the pain sets it and I can't get back to sleep. This summer has been a sick summer, being indoors and unable to do much. It's hard to amuse myself. But, here are a few things that do:

Putting nice clean sheets on my bed.
Cleaning...yes, I like to clean and vacuum. It makes me feel better about my unstable life.
Taking a hot bath, calms my pain and I get clean in the process.
Playing games on my iPad.
Reading...I love to read, and old fashioned books. I like the smell of them.
I love the show TRUE BLOOD.
Movies, I like to go when I can, which has been really rare.

The biggest thing that I look to do for amusement; sleep. It helps restore, kill my pain and I escape this life. That is the best amusement and most rare amusement of all.

 

[Graham]

Hi Spitfire - different things work differently for us, but I used to be like you, getting perhaps 5 hours sleep then waking up - it was the pains in my legs that did it. Now I go to bed in the early hours (1:30) and take a couple of strong prescription co-codamols (painkillers). Then with a hot water bottle and an all-night electric blanket switched on low overnight, it gets me through the 4:00 cold and low body everything patch, and I tend to wake up around 6:00 relaxed and warm, switch off the blanket, and sleep on to 9:00 or 10:00. It has made a world of difference to me, and I wouldn't have discovered it if I hadn't been hobbling with sciatic pain when I saw the GP for a routine visit. To be honest, the sciatic pain was easy enough to ignore in comparison, but the GP insisted on the pain killers, probably because it was something he knew he could do something about.

Of course, this may be utterly useless to you - the variations between us are enormous: I don't seem to be as sensitive to medication as many of you are.

 

[Misfit Toy]

Graham,

Wish I could do that. Opiates make me itch. I can only take a small amount of them. Also, I can't sleep so well on them. And, where I live is hot as blazes, so no hot water blanket or electric blanket here. I am in shorts right now and the air conditioning is flying at me.

For some reason, in the late afternoon, I can sleep. I don't know why but I have an intense desire to sleep and I usually do. But, usually around 5 pm to 8 pm, which is kind of crazy. Now, I am up and I feel like I missed out or something. My pain lowers too in the late afternoon as opposed to the morning, when it peaks. It's horrid in the morning.

 

[SOC]

Hi sickofcfs - I'm still in my jeans, but it doesn't help with the dancing. I came bottom in all the music exams at school, and when I was 14 we were all put in a big hall to sing as a choir. Eventually the music teacher couldn't stand it any more, and had us singing to him in small groups - then out of the hundred or so students, just six of us were banned from singing a note, and had to sit at the back and follow the score! I couldn't believe that it would have happened to anyone else, but then discovered that the same thing had happened to a colleague (the deputy head where I taught).

Oooh, that's terrible Graham! No genes, jeans, or even Jeannes ever did much for my dancing or music appreciation, either.

Never before heard of a music teacher banning singing, lol! I think that even beats my story.

 

[heapsreal]

Graham,

Wish I could do that. Opiates make me itch. I can only take a small amount of them. Also, I can't sleep so well on them. And, where I live is hot as blazes, so no hot water blanket or electric blanket here. I am in shorts right now and the air conditioning is flying at me.

For some reason, in the late afternoon, I can sleep. I don't know why but I have an intense desire to sleep and I usually do. But, usually around 5 pm to 8 pm, which is kind of crazy. Now, I am up and I feel like I missed out or something. My pain lowers too in the late afternoon as opposed to the morning, when it peaks. It's horrid in the morning.

leg pains are up there with my insomnia, i have found neurontin or lyrica helpful, neurontin is better for the leg pains but lyrica helps sleep and lower back pain when it plays up and u get muscle spasms. neurontin and lyrica are suppose to be closely related but i find they work on different things to each other for me. with everything else i take i rotate between them every few months.

Graham, wear shorts instead of jeans, the chicks luv it on the dance floor, lol

cheers!!!

 

[Graham]

Graham, wear shorts instead of jeans, the chicks luv it on the dance floor, lolcheers!!!

Not with my legs - I used to do a lot of cycling, and it is pretty hilly around here. Nevertheless, my legs remained so pale and skinny even my lycra cycling shorts would flap like flares, and I am well past the age of chicks even noticing that I am still alive.

Spitfire - that's odd, isn't it, because my pain pattern was the same, but with me it was an intensely cold ache. I have only just managed to do without the electric blanket being left on for a few days this summer (in the UK), but the hot-water bottle and thick socks remain! Still, if you can find a way around the pain at night, the benefits are enormous.

 

[Misfit Toy]

Yes, neurontin, lyrica, and opiates are all AWFUL for me. MCS. Neurontin made me suicidal, Lyrica made me slur my words and opiates make me itch and not sleep. I can take a small amount. Working on it!

 

[heapsreal]

Yes, neurontin, lyrica, and opiates are all AWFUL for me. MCS. Neurontin made me suicidal, Lyrica made me slur my words and opiates make me itch and not sleep. I can take a small amount. Working on it!

i think they recommend lyrica twice a day but on my docs advice i just use it at night which helps avoid the sedating side effects during the day plus i benefit from them at night with better sleep through its sedation as well as reduced leg pains. slurring your words before bed is ok and u dont need to drink, lol.

cheers!!!

 

[taniaaust1]

Making up your own recipes sounds like fun. My 7 year old is obsessed with master chef! I found him getting his lunch ready for school the other day, cutting up an apple with a really sharp knife so he could have the apple "diced" (diced fingers more likely).

Sounds handy thing to have, a child who loves to cook. You could get him to make pizzas for dinner if you can eat pizza (kids love putting the ingrediants onto pizza).

 

[taniaaust1]

Graham .. your post about your singing made me think about my own experience when I was really wanting to learn to sing and tried to join the school choir... I failed thou to get in. (my singing is shocking.. I once tried karioke and once finished went outside for song air only then to hear some girls going "who just sung? she was terrible". Talk about wanting to crawl and hide in a hole.. fortunately thou they didnt know it was me).

TheSpitfire.. I hope you are having a better day today.

 

[Sparrow]

Sparrow, you have my greatest sympathies. I am nothing like as badly affected as you, but I must admit that I still find listening to audio tapes or talking on the telephone much more tiring than reading or watching TV. Odd, isn't it? When I had a bad patch early on in my illness, I fitted up a bird table outside the window and watched that for ages, but I guess with your cat that is out of the question. I'm guessing that you haven't had ME for long. Well if it helps, it took me a while to get the pacing right, to not get sucked into things, and to enjoy what I could when I could, but once I had got that sorted (and my son has had ME for a lot longer than me, so it was easier to learn), I did improve. Rather than force yourself to read, why not do what I did and lower the quality of what you read? Children's books are great for that - not too many characters and nice and light. Roald Dahl is ideal!

And if I am getting bossy - sorry! It's 40 years of being a teacher - it is now so much a part of my life and character that I can't stop interfering! All the best though.

Not bossy at all. I was a teacher too before I had to leave work. I have that helping urge too.

Weird that others find the audio stuff more taxing than visual + audio as well. ...Or not weird, I suppose, but novel for me. I'm not used to talking with others who have ME/CFS too.

I did downgrade my reading to some young adult stuff, which helped some. I seem to be going through a phase right now where I can actually make sense of "real" books again so long as I don't overdue it, though, so I'm enjoying that while it lasts!

 

[Sparrow]

I certainly feel ya there Sparrow. I spent 3 years in that bed bound abyss and know how brutal it can be. Hang in there, your with people who understand and care. Even though your new to the diagnosis, your sure to of heard the basics for minimizing progression and giving the best shot at improvement. Keep stress and exertion (for you that's getting to the bathroom) to an absolute minimum, including on the feel better days. Get in with a good doc who knows this disease.

Thanks for the support, and the advice, and my sympathies about your own time bed bound. Three years sounds just brutal. My gut tells me that I need to rest as much as possible (although right now the medical community around me knows very little about my condition, and I feel like I have to defend myself against constant pushes to stretch myself to my absolute limits), so I've been trying. It's tough sometimes when I know deep down that I'm having a day where I'm not actually well enough to do anything to entertain/distract myself at all. Still end up pushing it a little then, but overall I'm getting better at drawing lines and paying attention to those internal cues. Am still trying to get in to see a doctor who understands ME/CFS at all. No luck yet.

 

[Graham]

I prefer the term "nibbling at the boundaries". It really is a mistake to push - and it is such a hard lesson to learn. I still get it wrong, and that's after 12 years, and watching my son for the last 22! But personally I think it helps to nibble at the boundaries all the time, just to check that you are having as much of a life as you can.

When I got better enough to read normal books, I started with a new system in the library - I pick up two fiction books, and I started at authors beginning with "A", and vowed to try virtually everyone of them. I'm now up to the end of "B", and I have read some really good books that I would never have come across otherwise. I also pick up a "virtual travelling" guide: I hit a phase of reading about people who had cycled around various places (try Anne Mustoe). That was fascinating as well. It was a way of doing something new.

Finding a good doctor is difficult as well. But having friends or loved ones that understand is the most important of all - it's often surprising which ones do and which ones don't. I've been really lucky - my son and I get on really well and support each other, and my wife is amazing. My friends have split into two groups, so I have nothing to do with the group that doesn't understand. I have made a lot of friends online though: some live near to me, others on the other side of the world. That helps a lot, especially when you need to let off steam, and don't want those around you to be on the receiving end. So don't bottle things up - we're here to support each other.

I still can't get my brain around how to survive the bed-bound phase though, so you have my total admiration (and you too Tristen). I'm so lucky I didn't hit that low. I'm rambling again - but it is allowed!

 

[stevenski]

this is a positive useful, affirming thread. NOT that i am saying is all easy, "just be creative" etc.. see my post in Community Lounge on the thread "Finding Joy in Our Lives" for example of how i make the most of my limited life, which i fully acknowledge is not as limited as others. Steve ("Stevenski")

 

[Mary Poppins]

I like this thread too.

 

[Ocean]

How do I amuse myself during the day? I don't! I'm bored out of my mind!

At my better stages I can do a bit more physically and mentally, right now, nothing, just clicking around blindly online, read and post here a bit, maybe a post of two on facebook, maybe a movie or tv show online if i have the attention span. Hope to be getting out of this stage soon and have a better answer to give in the future. The indignities of this illness. Not only sick, broke, and isolated, but bored to death too!

 

[Graham]

You've got my sympathies Ocean. Not only that, but even when we do improve, it can be difficult to find an interest that doesn't cost money. The worst bit about this illness is the brainfog. Once that hits, it is tough. It took a while for me to be diagnosed, and I had to carry on working, but eventually I got early retirement (one of the few advantages of getting old). But for the first few months, although I was never severely hit with ME, the brainfog was terrible. It was music, watching the bird-table, Terry Pratchett and similar books, and sitting in the garden. One thing that worked for me was setting up a local support group: it was very slow to get started, but people with ME understand that, and it was great to mix with people who weren't surprised when I got their names wrong for the fifth time in a row. Some of them are really struggling, and the better ones help out at times - it's good to feel useful at times, even if it is only listening. And nobody minds when you are down, or when you talk garbage!

What hobbies did you have when you were well? I was mainly an active person, not particularly sports-minded (actually, I can't stand watching sport), but always on the go. So I had to go back to some of my sedate interests from way back - that was a struggle! Have you got a camera? I got quite hooked on taking close up shots of things we overlook - there are some amazing plants and insects around, even inside the house. Then when I felt sluggish, I'd just look at the photos I had taken.