Tips for when relapsing?

[Elliot]

Hi guys sorry if make few spelling mistakes and such, brains bit screwy.
Basically was wondering if theres any tips for what to do whenn rrelapsing? i've dipped alot past 6months and down to 30% on ayme scale [that's severe i think?] and feeling wors ethan normal so not sure if im goign lower and am not sure whether i should just be spending all day resting or trying to move about house abit.
At the moment too ill to go outside cept for rare occasions and spend 95% day in/on bed. But try and go on laptop though finding that really hard at the mo concntration wise, i think im spending too much time on the laptop though but the boredom/monotiny/wanting a distraction gets bnit too much sometimes.

Just wondering what's best thing to do- rest or try doing some stuff..that doesnt make sense does it
hope someone gets the jist!

 

[Esther12]

I don't know I'm afraid.

For myself, I find it easy to spend too much energy on intellectually satisfying and interesting experiences, and not enough energy on physical activities. It sounds like you think you might be doing something similar.

You could try meditation type things for very low energy, but still interesting and rewarding activities.

I'm thinking of giving Pilates a go for low energy exercise which is meant to be good for core muscle strength (we've got a DVD!).

 

[paddygirl]

cocoon

Hi guys sorry if make few spelling mistakes and such, brains bit screwy.
Basically was wondering if theres any tips for what to do whenn rrelapsing? i've dipped alot past 6months and down to 30% on ayme scale [that's severe i think?] and feeling wors ethan normal so not sure if im goign lower and am not sure whether i should just be spending all day resting or trying to move about house abit.
At the moment too ill to go outside cept for rare occasions and spend 95% day in/on bed. But try and go on laptop though finding that really hard at the mo concntration wise, i think im spending too much time on the laptop though but the boredom/monotiny/wanting a distraction gets bnit too much sometimes.

Just wondering what's best thing to do- rest or try doing some stuff..that doesnt make sense does it
hope someone gets the jist!

Hi Elliot,

Even though I don't feel as bad as you do I get the gist. i work and try to do other things but really pay for it. I met another m.e. sufferer who lives 3 hrs away yesterday as I was in her area. We had met on wpi facebook and said we'd hook up. We spent 5 hours talking (thats a lot of tea) and then I drove home. Both of us were wiped today.

I hope you have someone around to just be there and mind you. I find it hard enough at my level of functioning and I live alone so I understand that part. Today I didn't want to engage in any way because of the pain and the feeling of restless confusion. Lots to do but mind/body not co-operating.
I'm learning the hard way not to challenge this illness head on. PR has been an education for me in that sense. I've let go of the guilt.

Have you tried something like classical music or aromatherapy when you feel like this. I'm not a fan of that kind of music but have heard lots of times that it produces calmer brain function (waves?) also lavender is a real calmer as is neroli. Gentle yoga helps me sleep when I'm like this. I think some things are just too stimulating when you are at a low ebb, unfortunately they are things I like, talking, movies, the internet etc.

Something else I do that isn't too taxing mentally or visually is get book cd's from the library, or these little audio ipod type things they have called playaway, not sure if thats a brand or not. I usually pick something not too challenging, like Anthony Capellas 'Food of Love' or Deborah Moggaghs story about an Indian retirement home. The beauty is you can switch off when you feel sleepy or just want to drift in India or italy or wherever the story is set.

Hope this helps, nasty nasty illness. It undermines us in the sneakiest ways.

Take care

 

[2bushes]

Hi Elliot,

I try to remember the energy bank account. I am down now too and have been for a year after 8 years of 80% and even 90%, the rest I could fake. I was doing great after 8 horrible sick years. I cannot fake or do much of anything now so I take that as a sign to rest. I do not want to see people..they do not understand that it is too hard and why don't I take Lyrica or get something from the doctor. LOL

Just keep on keeping on, big things are going to be happening we can wait!

My best to you and that is a lot!

Margaret....new to posting but have been reading for quite a while.

 

[Athene]

Hi,

I've crashed a number of times over my 26 years with this illness.

You need to stay in bed and do nothing. You may be lying flat on your back, but your body is doing a marathon-type workout on the inside, putting up the fight of its life. Don't make things harder for it.

Make sure you eat good nutritious food, no sugary junk. When you allow sensory stimulation, it should be whatever PASSIVE things give you most pleasure. For me it is listening to my favourite music, sitting by the window hearing the birds tweet and looking at flowers, and leafing through art books with pretty pictures.

REALLY look after yourself to stop the decline and start getting better again.

 

[grant107]

I listen to audio books on my ipod. It helps the boredom and the ipod is so light it requires no energy. When I'm a little better and can read I use my reader which is lighter than a real book.

 

[willow]

Hi Elliot,

Some good ideas there, also how about an open window and some fresh air, even if that's from your bed with 2 hats, 3 scarfs and 5 duvets. Yip I'm a fresh air fiend. Allows me to feel closer to the life, freshness and beauty around me too.

Most of the time I stay in bed i feel even worse... Infact I love it when my physical body is on the same page as the rest of me. Guess it's finding what your own body responds best to and also realising that this can change. The bank account analogy is a good one. You need to leave enough in it to earn interest to heal your body.

I think it's easy to spend too much time online and I feel pretty awful as a result.

Is it worth checking out the radio scedules?

 

[Sunday]

The fresh air thing is an excellent idea, a nurse told me that breathing is one of the non-exercise things that helps circulate CSF, and it does seem to make me feel better. If you are lying on your back, your body has to breathe the right way, that is, right down into your diaphragm so that the belly rises with every inhale. So you don't even have to concentrate if you don't want to, your body will do it for you.

There are many good suggestions on this thread. For me, one of the primary ones has been learning not to push it. I think of a water tank instead of a bank account, but the principle's the same: if you get down past a certain point, you just have to let it replenish itself, or you may burn out the whole system. This is not an easy thing for me, a former push-to-the-end person, to learn. But "don't fight it" may be one of the most valuable life lessons I'm learning in this illness. Resistance really is futile.

Elsewhere on this forum I learned about magnesium and clay baths. Some people do better with magnesium chloride than magnesium sulfate (Epsom salts). It does seem, at least some of the time, to help me not crash so badly after I've exerted myself, or just feel a bit better when I'm crashy. You'll want a warm, not super-hot, bath (hot baths and showers make a lot of us woozy).

If you try classical music, be aware that there are many different kinds of it and some of them are quite as stimulating as rock in their way. I'd advise trying medieval or Renaissance music, generally called Early Music; a good way to find out what you like is to try a radio station, and now there are many online where you can pick your type of music, e.g. Pandora. Pick music that feels good to you now, not what you think you should have or even what you used to like (though that may still work).

Something I have found really worthwhile to do is to do spiritual work, which I've been in the habit of anyway. But it's not hard: you just ask for a helpful, kind spirit-personality who wants to meet you, sort of like classifieds on the astral. You do want to ask for helpful and kind, because not all spirit beings are. If this sounds nutso, my apologies, but this is one of the few things being in the twilight zone is actually HELPFUL for, and this way I can investigate my own situation from a different light, or see what helpful perspectives I can get on what's going on with my friends, or just have an other-dimensional adventure.

There are other threads here on books, including audio books and radio stations. Also a thread on favorite movies. And there's a thread called "amusements" that's kind of a hodgepodge, many online links to stuff.

I find it helps a lot to have something beautiful to look at, but this may just be me. And the aromatherapy is a good idea, but real neroli oil costs a packet, and the fake will do nothing for you. Lavender, lemon, orange, are all mood lifters and relatively inexpensive. Lemon and orange have antiviral and antiseptic qualities as well, and lavender is especially relaxing to the nerves. They can also help mental alertness.

 

[Elliot]

Wow thankyou very much for all of the replies guys, it's really appreciated Will have a thorough look through and probably write a longer reply in abit! :tongue::Retro smile: