Staying in bed

[Bunnytwo]

Dear all

I have been going to bed or staying in bed since 2013. On a bad day I would stay up as long as possible but would be in bed by 6pm.... Since March 2015 I have been in bed at least 3 times per week. At first this seemed due to the tramodal side effects.. Overwhelming me. Since I stopped taking them I have spent days up busy and then bed for a day.. I am not sure if I should fight the urge to stay in bed or accept that I need to rest? Not sure if it's a physical need to rest or a psychological need or just being depressed . I am in bed today and missed out on things I could have done but just felt too exhausted . Please advise as I want to fight this if its the depression and not the fatigue of pain ? Thank you

[Bevvy]

As a long term survivor (amongst other things) with ME/CFS. It sounds to me that you are on a roller coaster and need to pace yourself more.

Do a few or one thing on a good day then rest (not necessarily in bed) the rest of the day. Sounds like you are trying to do so much in one day that it going to be difficult afterwards.

[Bunnytwo in reply to Bevvy]

Thanks Bevvy

I will find this one hard to do but I guess it's all about redesigning our days .. I have two dogs and a horse to look after so I will need a time table me thinks as I totally agree with what you say. I am just thinking out loud but may be I have gotten into a mind set of hell for leather .. I shifted 5 barrows of horse muck amongst other things the other day which was a lot for me to do when I was fully fit ! knowing that I have a day in bed.. This Peter P ( my new word for Pain) is so complex .. thank goodness for this site as we are the only ones who can figure this out.. I play catch up on my good days .... life would be more balanced if I got up earlier for a starter ....

[JennSp in reply to Bevvy]

Yes very Good advice to Pace yourself, I know it is hard when you feel good today, but we have to remember that tomorrow, we may feel wiped out...I've been thru this whole scenario.. So Now I plan a day's rest after a day when I've been out n about or busy in the house....by busy I don't mean, vacuuming the whole house. Just a few bits and pieces here and there to keep the place tidy. I have bought a reclining chair also, so that I can rest on here, and maybe watch a bit of tv, in this way I'm up n about, and dressed, not just in Pj's all the time, because of being in bed mostly. This makes me feel less lethargic. at least for a while.

[Bunnytwo in reply to JennSp]

Hi J this pacing yourself is hard I have done it again! felt better and did too much ... I must work harder at doing less.. lol And keep busy doing nothing..

[JennSp in reply to Bunnytwo]

Yeah we all do it wrong quite a bit....I have done too much by the feel of it...Had my grandson 2 yrs sleep over on Sunday night then get picked up by Parents at 2pm on Monday...I did nothing that appeared too strenuous for me...but i guess it was...as today have got hardly any balance at all, good job I planned a day in...as can't walk in a straight line.....Will have to take my own advice more seriously xx

[Hidden]

hi Bunny two now wonder your in pain if you been in bed since 2013, i bet you back and lower parts are stiff as a board, joking aside its not easy when your in so much pain you wonder how do i carry on, well you can i know ive answered some of your post, but let me just tell you this now your on here with us on this forum you will have plenty of new friends to help you cope, i've been on here since march this year, and the amount of new friends i've made is unbelievable its helped me and now we can help you take care your crackpot friend Alan xx

[Bunnytwo in reply to Hidden]

That's a great message I have read it a few times thanks Big Alan x

[Hidden in reply to Bunnytwo]

hi Bunnytwo i know its not easy having a life full of pain and i hope by my joking about put a smile on your face, if we didn't smile now and again i think we would just crack up and that's it. its nice when you speak to people you've never met, but can help to life you up even if its for a short time and knowing that they are there when you need them and well i'm here all the time to either help someone or someone helping me, that's why we need each other, true friends always stick together take care big hug from your crackpot friend Alan xx

[JennSp in reply to Hidden]

Always good to have someone to talk to.....who are not your family...as we don't like to burden them with our moans & groans...So yes feel free to Moan to me...I won't take it to heart. Cheers

[Hidden in reply to JennSp]

hi there Jennsp many thanks for your reply, my family don't speak to me now for 14 years, but the its nice to know that i have friends that will listen and its very rare i will moan but its nice to meet you i'm Alan xx

[JennSp in reply to Hidden]

Oh dear sorry to hear of you family feud...You're not alone !!! I too had a similar thing happening to me....So I know whats its like also...kindred spirits eh.....Unless we talk to each other, We think we are the only ones going thru this, and when we realise we're not the only one....then it helps...just a little....Keep smiling...and ya know, a smile does rub off a people...and hopefully it will work for you, on the inside out....if you get my drift... xx

[Hidden in reply to JennSp]

hi Jenn i know what you mean its nice when you meet people like yourself that are in the same boat, and yet we pull together and are there for one another, you sound like a person i would like to get to know about, may i ask if its not to rude where are you from, are you married, i'm not been divorce now for 14 years and still on my own me and my illness, but with some lovely new friends from this site and to this lovely person i'm talking to. i hope your days has been a good one, the weather here is very windy, i'm from worksop in Nottinghamshire. anyway with you ending words you have put a smile back on my face, take Jenn speak to you again hopefully Alan xx

[earthwitch]

Have you ever considered a course of CBT? (cognitive behavioural therapy - a type of psychotherapy that is really useful for people with chronic illnesses). That might help you get your head around how to pace yourself and deal with any depression that you might have around living with a chronic illness. Another thing you could try is signing up for one of the Arthritis Care UK "living with a chronic illness" self management courses. They aren't just for arthritis, but can be a really useful way of coming to terms with your limitations, but also finding ways of making the most of your good times, and you also get to meet other people who have the same issues. You just have to contact Arthritis Care, and they will then let you know when there is a group happening in your area..

[Sazntef]

For back pain too much rest has quite a detrimental effect. I went through the pain clinic (you can get referred via NHS) who take you through pacing and low intensity stretches that will help keep your back mobile. I know how you feel when you get a slightly less bad day though, the temptation is to do as much as possible. Plan a small amount and then no matter how you feel mentally do that small plan and no more. One of the main things I took away from the pain clinic, do what you plan, not what you feel. I hope it helps and that you are able to overcome the depression too.

Sarah

Xx

[Bunnytwo in reply to Sazntef]

Hi Sarah

Thank you so much for your input . My pain is in my face and head and often I feel that I am best to stay still ....However your comments have made me move forward .. I have my Action plan to make a time table.....suggested my another member of the community..... and included in that will be in BIG LETTERS DO WHAT YOU PLAN .....NOT WHAT YOU FEEL LIKE ..... Because my Peter P is in my head and face I seem to have become so incredibly self-obsessed and totally based on feelings -- its like my life has become an emotional blob!. You have given me another plan .. when I need to physically rest I can sit in front of the computer. Thank you so much for helping me xx

[JennSp in reply to Bunnytwo]

Mmm I also like that statement DO WHAT YOU PLAN---- NOT WHAT YOU FEEL LIKE DOING I too, am gonna put that on a Post it, on my cupboard door.....cheers everyone...jenn

[Sazntef in reply to Bunnytwo]

I'm so glad that this is helping you and that you have a glimmer of light in this previously dim tunnel. I would love to hear how you get on with this part of the pacing and if you continue to ward off the depression. I know I always feel better if I'm able to get on with some normal parts of life rather than being controlled by the pain. Reassures to be able to take a little control back from it.

Sarah

Xx

[johnsmith]

Good question? Only you can answer it. You must do work on studying and experimenting on yourself to determine if it is true or not.

I have days where I am in bed nearly all day. The symptoms of a depression yes, but what i have is not depression. It is plain exhaustion of the brain. I am constantly monitoring what I do because of my physical condition and chronic pain. Certain parts of the brain are working close to overload. There comes a point when the brain has had enough and the part of the brain being overloaded has to stop and recuperate. This may be your situation or it may not. Only you can investigate and determine this.

Tools for doing the investigation are meditation and mindfulness.

Hope this has been helpful.

[JennSp in reply to johnsmith]

'Tools for doing the investigation are meditation and mindfulness'. HOW Ironic that I learned these as part of a process to offer much more in my Holistic Practice than just Massage, for relaxation and stress relief...AND now I need all the resources I can muster.

[Bunnytwo in reply to johnsmith]

Hello Johnsmith

Yes you are right only I can figure that one .. I can relate to what you said about your brain feeling over loaded and needs to recuperate ... Please could you tell me more about what type of meditation and mindfulness you have used to investigate this ? Like you I don't feel that I am really depressed as such but more sad that my life has been reduced to being controlled by pain. I also feel angry .. but cant do angry any more as it gives me a headache or a bigger one than I already have! Sending you good coping vibes....

[johnsmith in reply to Bunnytwo]

Thanks for the reply.

It is difficult to describe the type of meditation and mindfulness that I do. I learnt the basics and over the course of time (20 years & more) I have adapted it to the situation of health disability I have. The meditation and mindfulness has been tweaked by the in depth knowledge of Alexander Technique and Tai Chi I have. The chiropractic treatment I have been having has also modified my practice of meditation and mindfulness.

Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf

amaravati.org/dhamma-books/...

Gives a great deal of information on meditation and mindfulness and body posture. It is a free download.

Find a group of people to practice with. Practising with a Buddhist sanga makes a difference.

You will need a physical discipline to enable you to become aware of how you move. You need to give yourself time to allow yourself to learn the subtleties. The process cannot be rushed.

"Human Motor Control" 2rd edition by David A. Rosenbauum has lots of useful information on how muscles work and are controlled. I got my copy on Amazon.

Hope this helps.

[Bunnytwo]

Thank you so much for the information x