ME/ CFS Pastimes –
In Bed With Illness, Too Sick To Do Anything –
What Hobbies Can I Pursue?

Also relevant to CFS Pastimes is the previous article on

Relaxation techniques and tapping inner resources to live with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis.

ME/ CFS Pastimes

People with severe ME /CFS show an amazing ability to take hobbies they had before living with chronic illness, and adapt them to be ME/ CFS hobbies.

This is not always possible. I had a friend who had greatly enjoyed punk music. Not much chance of pursuing that with noise sensitivity! Still, there were other forms of music he enjoyed.



Here are some ideas on: What do I do when I am too sick to do anything, ill in bed?

1. Deepening Our Spirituality - Spiritual Quotes

2. Television - How To Watch When Too Ill To Watch

3. Enjoying Nature From A Bed

4. Appreciation of Beauty - Finding A Way

5. Shoulder Dancing - How To Dance When Too Ill To Dance

6. Singing - How To Exercise When Too Ill to Exercise

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ME/ CFS Pastimes 1

Deepening Our Spirituality - Spiritual Quotes

My main ME/ CFS pastime was developing a practical spirituality. If it is the same for you, then you are blessed – at least in one way ;-).

Spirituality is the one pursuit where your physical weakness can be an advantage. For me, other CFS pastimes also stemmed from my spiritual journey. For example the dictating and editing of poetry. But here, I just want to mention how periods of stillness can be used to learn spiritual quotes.

It may seem bizarre to make a pastime of remembering things if you have an illness which – like CFS /M.E. – affects your memory and your ability to think clearly.

However, if you have many times of silence, and you need to discipline your thoughts, it is well worth doing.

I would read a quote that inspired me – sometimes one I wanted to use as an affirmation. I would lay the book or paper on my chest, and see if I could remember it. I would keep doing this.

It involved minimal movement.

I was engaging in the spiritual practice of meditating on that quote, allowing it to become comfortable to my mind, allowing myself to receive the spiritual wisdom within it.

And I was replacing any, less useful, thoughts I may have otherwise been thinking.

I am so grateful for the quotes I learned in this time.

By the way, I used the same technique to memorise my card numbers etc (my arms were too painful and the muscle fatigue too great to be able to reach for things).

You might be interested in this section on using a time of enforced stillness to be blessed and be a blessing.

ME/ CFS Pastimes 2

Television

Whilst I was ill with severe CFS /M.E., television was very painful on the eyes and head. In 1999 I managed to give it up. It had taken me 5 years to have the peace of mind, discipline, and eye pain to do so.

When you are in bed with CFS /M.E. (or any other chronic illness), TV is an amazing invention to distract you from the distress of symptoms and carry you out of the confines of your room.

How To Watch Television when Too Ill To Watch Television

I watched television by recording everything on a video player. Nowadays you might use DVD.

By forwarding through theme-tunes and credits, and watching for only 10 minutes at a time, I could watch TV.

My eyes got so bad eventually that I was down to watching only 3 minutes at a time. It took me the whole day to watch a 20 minute program. And it hurt. It really was time to give up!

Earlier on, before the cfs/me symptoms affected my eyes so badly, I had watched programs on faith, on illness/health and on comedy. Eventually, I watched only comedy. The other 2 subjects can be met through a little reading, but it is difficult to laugh on your own, though it can be done.


There is comedy on the radio too. It is good if you can find a way to laugh whilst you are living with illness.

I had many wonderful synchronicities where I prayed for guidance on a particular issue, and received the answer through a line in a TV program.

I often thanked God and TV producers in those years for the compassion and wisdom that reached me through the television.


ME/ CFS Pastimes 3

How To Enjoy Nature When Too Ill To Go Anywhere

There were four years of having CFS /M.E. where I did not leave my room more than four times.

This was due to a combination of the level of illness and the lack of support available. I had a birthday treat one year where a friend came around and pushed me into the sitting room. Even on this occasion, there wasn’t time to do it in a way that allowed me to pace myself, and it took time to recover.

So how, you may ask, did I enjoy nature?

If you have a room with a view, this is a great start.

I did not have much of a view, but I could see the blue of the sky and the green of a top of a tree from a lying down position. Boy, did that make a difference to me.

I had to have a net curtain in case someone was in the communal garden. On a good enough day, I could get the carer to leave it open and use a gripper stick to drag it across if need be.

I always used a net curtain that covered only the lower part of the window. I rarely stood up and the commode was not visible from the higher part of the window. So most of the time I could see the sky.

Even now, I have a heightened appreciation of the green of the grass and the blue of the sky. Those colours, that life, fed me.

cfs_pastimes

And when I was stuck in a room with unchanging scenery, the movement of the clouds reminded me there was a moving world outside.

Plants And Illness

The other way of experiencing nature, of course, is to have some house plants.
This is not always easy if you don't have adequate care.

In my case, carers were not obliged to water plants, and there were times when I was yelled at for asking them to do so. Not pleasant! I often stopped and asked myself whether it was worth having one more thing to ask for, but the answer for me was Yes.

Plants were something living to keep me company. I celebrated each leaf that came out on the rubber plant.
...Each sign of new life, reminding me that growth is natural, and things can change.
...The sheer beauty of a leaf.
...The reminder that patience is needed. Just as it would not help to try to unpeel a new shoot, so we have to allow time for our new creative thoughts to unfurl, without us trying to force things to happen. New life will come.

ME/ CFS Pastimes 4

Appreciation of Beauty Living With Chronic Illness

drop of water

My world for 4 years was my bedroom, my carers, and the occasional visitor. For the following 10 years it widened to include the garden, my stationary car and the passing people.

There was a source of perhaps unexpected beauty that I found in my life in a room:

Water.

I drank a lot of water whilst ill with CFS /M.E.. It helped keep the headache a little more subdued, and reduced the poisoned, flu-like feelings that circulated in my body.

I could not drink as much as I liked as it was significant for me to lift a glass (I used a straw to drink), and a significant movement for me to get onto the commode.

Perhaps this restriction increased my appreciation of water.
I find it amazing – how essential it is to our life.
We drink it.
We wash in it.
We rely on it so much.

I would look at the water in the glass by my bed.
I would savour the taste of it.
I would watch it splash over me when I washed in a bowl on my bed in the mornings.

Water also has a spiritual significance. It is often used in spiritual metaphors as in the ancient text of the Tao Te Ching:

“your true path
like water flows,
dissolves, dances,
falls, rises,
is one with everything”

ME/ CFS Pastimes 5

Shoulder Dancing - How To Dance When Too Ill To Dance

When well enough I was known to do a little shoulder dancing! You can move as much or as little as you like and imagine when you were able to dance.

If it upsets you to remember how you used to dance before you had CFS /M.E., stop shoulder dancing. Really allow those feelings and allow yourself to grieve your lost health.

Shoulder dance  again another time. If you still feel upset, make a decision whether to go through the same process, or whether to decide this is not for you.

It is great if you can find forms of exercise you can maintain even if you have severe CFS /M.E.. You can use them to simultaneously imagine yourself doing more.
Research shows that exercise in your imagination has a positive impact on muscle strength.

If you want help in learning to feel your feelings, I recommend the Journey process by Brandon Bays.

ME/ CFS Pastimes 6

Sing As A ME/ CFS Pastimes

I sang along for the few minutes I could listen to the radio. I set out to learn lyrics of inspiring songs so I could sing them to myself in the necessary quiet times. I didn't end up learning many complete songs, but I knew bits of many. Hymns were particularly meaningful to me in the final years of illness.

Also very useful was a fantastic singing tape of overtone chanting by Chris James.
Singing was a form of exercise I was able to get away with as a ME/ CFS Pastime - making a noise involves physical exertion. And singing encourages us to breathe deeply.

Singing is wonderful at focusing your attention away from symptoms and pain.

(I have contacted Chris James, and unfortunately this tape is no longer available. I will keep my ears open for a wonderfully fun sing-along tape that I can recommend.)


Where Can I Give My Advice On CFS Pastimes?

Please let me know the ME/ CFS pastimes you have found - also those when living with other chronic illness /sickness.

The CFS pastimes above answer the questions:
- Pastimes when too ill to do anything?
- Pastimes when living with severe ME?
But feel free to share pastimes which require more movement.

Share your advice for CFS pastimes in this CFS forum.

Other Articles Relevant To CFS Pastimes

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