Coping with long periods in bed

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 6/11/2015 7:51 PM (GMT -7)   
Hi everyone,

Sorry if I'm posting too much on here, just trying to cope and it really helps to hear how others deal with certain things. I was wondering how you all deal when you have several days or longer when you can't really get out of bed? I never realized or appreciated how active I was before, until I got sick! I am one of those people that needs to feel productive, even in some small way. I tend to get pretty down when I can't get up and do things, even if I'm working from home I still don't feel like I've done anything, which is rediculous! I've been writing for a long time, and finally started a blog, which does help. I just get sick of watching TV or messing around on my computer. Anything that helps you cope? Anything that makes you feel less bored? Do you find that you can accept it when you are like this, or is it a struggle?
~Louise

My Blog:
http://beautifullybrokenbodies.blogspot.com/

Fibromyalgia, Chronic Fatigue Syndrome, Interstitial Cystitis, Chronic Pelvic Ahesions, Ovarian Cysts, torn & herniated discs, Arthritis (lower back), Pelvic Floor Dysfunction, Hypoglycenia, Chronic Pain, previous Endometriosis

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 6/11/2015 9:54 PM (GMT -7)   
Louise, I am sorry you're feeling so bad. I do understand what you're saying, I'm the same way. I love to be acitive and my mind is still very active, but my body has completely given out. I was sleeping days and staying up at night until the last month or so. I changed my hours of sleeping and now I feel so much worse physically that I can hardly believe it.

My pain is more than double what it was before because of the added stress of trying to do a little more around the house. And it's just a very little that I do. I cook a meal about 3 times a week and most of the time I just watch tv, use the computer or read.

My husband has been trying to do some things around the house, repairs and cleaning that had been put off due to my sleeping hours, and he is very glad I'm up in daylight hours. I just don't know how long I can go on like this.

I am getting the same number of hours of sleep so I really don't understand why I feel so much worse lately. I want so much to get things done around here but I seem to have hit the wall this week!

I have CFS, FM, MCS, Diabetes 2, Low Thyroid, OA, Pelvic Prolapse,
Ocular Migraines, Degenerative Disc Disease,Hypertension, IBS, Tremors, Curved Spine, and lots of dental problems.

I'm almost 75 years and I've had CFS/FM for 35 years. I wish I had some answers for us but I guess we'll just have to hang on and encourage and support each other. Hope you feel better soon.

Post Edited (memaw12) : 6/14/2015 12:54:10 PM (GMT-6)


MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 6/11/2015 10:23 PM (GMT -7)   
Memaw,

Thank you so much for your reply and or sharing what you're going through! I'm sorry to hear that you're feeling even worse right now. Even without answers or solutions it really does help just know I'm not alone. It means a lot to have someone care enough to take the time and share like you have. So glad we have each other on this board! Take care and be kind to yourself! And I will try to do the same.

Hugs,
~Louise

My Blog:
http://beautifullybrokenbodies.blogspot.com/

Fibromyalgia, Chronic Fatigue Syndrome, Interstitial Cystitis, Chronic Pelvic Ahesions, Ovarian Cysts, torn & herniated discs, Arthritis (lower back), Pelvic Floor Dysfunction, Hypoglycenia, Chronic Pain, previous Endometriosis

Dancing Dawn
Regular Member


Date Joined Feb 2015
Total Posts : 87
   Posted 6/14/2015 8:46 AM (GMT -7)   
Hello Louise, I've actually been dealing with the same thing as you are
these past couple of weeks. The only difference is, I spend time on
the couch. (ha, ha ) That's because my tv is in the living room.
Now, that the summer season is here, well, last night for instance
I had trouble finding much of anything I wanted to watch and ended up
watching some crime shows which usually don't appeal to me.
As to how I cope with this. I go back and forth. If it's several days that I'm like this, no, I'm not happy about it. It feels like I'm 'wasting time' and not getting things done which I'd like to. Most of my life, I was very active. One thing I do miss is hiking. I'd much rather be out in nature hiking when the weather's beautiful like this. I'd rather go on a trip or visit friends. Many things.
On the plus side. I do take long walks. I can still do things I like. However, I have to pace myself. I have to do them when my energy is 'up'. And it's not always predictable.
I'm embarrassed to say actually how much television I've
watched this past week. A few days in a row for sure. I do mute the commercials. I do read. I do talk on the phone. I do go to the store. I try to break it up as much as possible.
Today I'll be getting out. I don't know if this is helpful or not. I just know 'it is the way it is' and I try not to be hard on myself because I feel I'm doing the best with it that I can.
p.s.
There's another support site, www.dailystrength.org or .com I believe it is and they have some very good posts on there under 'chronic fatigue' as well.
I like both this site and that one. I figure it's good to 'get all the support we can with this'. good wishes to you. hugs.

Post Edited (Dancing Dawn) : 6/14/2015 6:26:40 PM (GMT-6)


MsLouise
Regular Member


Date Joined May 2015
Total Posts : 55
   Posted 6/15/2015 4:51 PM (GMT -7)   
Thanks Dawn! Yeah it's rediculous how much TV I watch these days. I hate it. I feel like a useless lazy bum! Really trying to work on not being so hard on myself about it. That's something I struggle with in general. I think I overdid things this weekend, and now my body is super sore and I can't get out of bed today. Tomorrow I have to drive a lot and go into work, so I'm trying to tell myself that it's OKAY to just rest today!

Thanks for the info on the site, I will definitely check it out! Always looking for more resources!

Thanks again,

Louise
~Louise

My Blog:
http://beautifullybrokenbodies.blogspot.com/

Fibromyalgia, Chronic Fatigue Syndrome, Interstitial Cystitis, Chronic Pelvic Ahesions, Ovarian Cysts, torn & herniated discs, Arthritis (lower back), Pelvic Floor Dysfunction, Hypoglycenia, Chronic Pain, previous Endometriosis

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/19/2015 7:58 AM (GMT -7)   
Louise, wow, we all sound the same, I could have written any one of these posts. I spend quite a bit of time sleeping & the rest of the time I spend mostly on the couch watching TV or on my computer. I like to play games on my phone, read my book, study my bible. I live with my daughter & my grandkids so I like to visit with them when I have the energy. about once a week I get out of the house, it may not be much, just a trip to the grocery store but I like to socialize a little bit. It makes me feel human again & like I belong & feel normal. Sometimes I overdo it like I did the other day when I decided to clean house & really pushed myself, boy did I crash. I hate that I can't spend a few hours a day working without paying for it, then I can't even be on my computer, I can only listen to the TV. Wish I had some answers for us but I have none, just pace & don't overdo it. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 6/19/2015 11:56 AM (GMT -7)   
I was hoping someone could tell me how to post the signature line at the end of my posts. I used to know how to do it, but I've forgotten! Thanks. Memaw12

healerme
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/19/2015 12:47 PM (GMT -7)   
memaw - go to your profile page and click edit profile - I've just done it!

Louise, have you tried colouring? I had CFS for 6 years and after 2 years of being very immobile a friend came round with her coluring pencils. I refused to pick them up at first but when I sat on the settee and created a doodle it changed my mood. I tried to spend the little time I could up even if it was 5 minutes doing something that really inspired me. That might not be seeing people because that can be exhausting. It certainly wasn't housework! Try setting yourself a small artistic or creative project and just do it 5 minutes at a time. it is good for your soul as well as your body!
http://healers-story.com

Inspirational, insightful but most of all real!

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 6/19/2015 12:58 PM (GMT -7)   
Thank you healerme. It worked!
Chronic Fatigue Syndrome and Fibromyalgia since 1978. Also, O.A. IBS, Hypertension, Hypothyroidism, Pelvic Prolapse, Small Brain Cyst, Tremors, Type 2 Diabetes, Chemical Sensitivities, Sleep Disorder, Allergies,

healerme
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/22/2015 4:11 PM (GMT -7)   
Good! If you want some more inspiration you could follow my signature link to my blog and there you'll find my story to help my 7 year old recover from chronic fatigue and also a link to my website called 'Creative Journey Work'.
http://healers-story.com

Inspirational, insightful but most of all real!

Carenpolar
Veteran Member


Date Joined Mar 2007
Total Posts : 672
   Posted 6/23/2015 7:07 AM (GMT -7)   
I sleep4 hours each day

healerme
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/23/2015 3:53 PM (GMT -7)   
Do you feel you're getting better?
http://healers-story.com

Inspirational, insightful but most of all real!
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 11:08 AM (GMT -7)
There are a total of 2,906,469 posts in 318,960 threads.
View Active Threads


Who's Online
This forum has 158300 registered members. Please welcome our newest member, sarahjaye.
299 Guest(s), 8 Registered Member(s) are currently online.  Details
LymeSick 🌟, countess18, Progressing, Saipan Paradise, garyi, k07, Bugleboy, halbert