CFS described as lack of energy instead of tiredness?

This morning l feel like hell, always feel rough on waking and that goes on for 2-3hrs, hobbling around doing minimul essential, which means feeding pets and letting them out, 2 cats l small dog, drink and breakfast biscuit for me, then sitting, music, tv, drained of energy achy and shaky with it. Lucky l know l do come round a bit in the afternoon,

and can function a little better, maybe very basic essential tidy up, jobs, but know house is getting grubbier, l cant even think of gardening hedge cutting when needed in spring, at present l cant give my small pond its annual clean up from leaves algae, and l do have fish and spawn in it that need clearer water, just one of many things that cause frustration. even studying about getting bin out to pavement tonight, and just rung chemist who are delivering, grateful for chemist and supermarket deliveries. Very difficult to pace when your on your own, and many gps not that empathetic to your dilemma. Although at least being on your own youve only yourself to worry about and your on mess to clear up, difficult in  different way for those with famililes, children to keep going in a routine, big help if theyve a good partner, how those without and children manage l dont know, will power when needed. So we do the best we can and keep learning from selves and others, more so on mbs than gps and officially.  l was thinking about those struggling to get benafits, how we see stories of some on them whove been filmed doing heavy lifting, house repairs, or playing footie. glad if they expose frauds, but try filming some of the people who your refusing help,  hobbling round their home trying to keep themselves and home going. l,d be quite happy to be filmed, and l dont even like my pic taking, so might blur out the face, but let those who dismiss it lightly be it gps or friends, public, see reality.

l near always wake 2-3hrs after falling asleep, need wc, drink, then awake an hour or so, then sleep late and wake feeling ............, So still trying to pace a routine that suits better, l guess trying to resist the daytime bed routine, be it l do fall asleep on sofa.  Strange how some days far worse than others, could envoiramental condition also affect

quite grey and smoggy here today, not a good day but live in hope for better ones.  Think lve wrote more than enough also, as my son used to say to me when seeing my letter writing `l7 pages front and Back`,

he,s a Homer tribute act.  lve laughed at myself, its a start for the day.

 

I too feel a wreck today and am in bed resting. I do get pain and odd symptoms that I put down to this condition and say I have cfs/me as I'm not sure what I'd call it. I just feel shattered and overwhelmed physically and mentally. This is because I had to go out to an appointment on public transport. The exhaustion is impossible isn't it?

Best wishes

Beverley

such a terrible feeling that defies description, i often wonder what is going on in my body to make me feel like this  - will you feel a little better??

regards

betty

Hi Betty,

Usually I feel a bit better after a while but, presently having a bit of a blip. I try to see things as temporary which helps.

Beverley

At least your showed up right away, not 7 days later, like my post. Not putting alink in next time.

Some days are better some are worse. But right now I think I know why I feel worse. Seasonal alergy season started and that always beats me down. The feel is different too. More aches and pains and weekness felt in my arm and legs. But it does mean I was only up 4 hours yesterday. (on my feet) I was awake most of the night.

Everyone rythm is different so each has to judge about their own. Here is my experience. I used to try to be up during the day. I was still working part time 5 years ago. getting up aroun 9am always tired ending up in bed in the afternoon and then up again evening/night. When I didn't have a job I realized that if I get up, I am not finishing my rest. So I ended up letting my body decide when it's ready to get up. It is around 2pm in the afternoon. From midnight to 2pm I rest, sleep, will get up to eat and wc but go back to bed. This way when I do get up I feel better. I still have the sloggishness right after getting up, but later I don't feel I need to go back to bed. Usually. Other times it's worse.

So I stopped worrying about what time of the day it is.

I am alone and that helps ..... and hurts.

People are dying around me from cancer and I barely live, and pointlessly.

I know the overwhelming feeling. That is pshycological, emotional, and draining. Less I have to deal with the better. I think we feel the unknown that we may ave to deal with and that things will be problematic. Pshycological and emotional sensitiveness seem to be a problem. Creates stress anxiety

Hi Laszlo,

Yes, we are all affected in different ways with This but, emotionally, physically and psychologically impaired are what we all share. The condition seems to enhance sensitivity to things-light, sound,food,pain,etc.

I think that you have found something that works for you regarding resting and sleep. It's such a balancing act but, worth it when things feel ok for a period of time. I know how you feel when you say its not quite life but, try to see it as temporary. Do you attend cfs/me clinic? It can be useful.

Best wishes

Beverley

Hi, l thought youd been cursing on your posts and they censored it for a week.  l also get allergic rhinitus, had that for many years, also seems quite common for many people generally, more so those with immune conditions. My time is def worse on waking in morning, even after sleeping in, today a bad day, it feels so bad it actually worries me l,m deterorating, its only knowing l come round a bit in the afternoon that makes it tolerable. l also dont go to bed early, partly because l do feel a bit better than in the mornings, also knowing l wouldnt go to sleep or wake on and off all night. l know l,m on my own and its advantages in having no one else to take care of or worry about, only yourself, but it is very lonely at times. l know what you mean, near everyone l seem to know in the last year months have serious health problems, l know its part due to age, but l,m not 80yrs, and those l know are in their 50s 60s, few l know from past gone recently, and it does affect and make us sad. 

l too have times it feels like an existance, it is a constant battle, but l live in hope for improvement, whether realistic l dont know, but it helps, as does having a little dog as company comfort and she,s funny and can make me laugh, spring is nearly here and l love my garden, cant garden now, but can look at it, and the computer does help, people on mbs, l also check in on healthunlocked site, have a look in, its good also.

l even head on to news polatics mbs now and again, wind myself up, but bit stimulation, and will enjoy watching the olympics, cricket, small fish,but whatever.  Your not being pointless posting, others like to read your posts and how you cope. your routing advice, we all give advice info, Bev and Georgia adviced last week about help from the sad lamps, so l,m presently looking for one to try,  Keep posting and let us know how your doing Best Wishes. x

Thanks, no clinic, I am a bit jaded and stubborn, so idle talk "you get better" , is useless, not really a support. Conversations are good, empathy is good, but it only goes so far.

There is this young woman in my building, in a wheel chair. She has some kind of cancer. (lower body) I am afraid to even ask ow she is because I know she is looking for answers before her time runs out. So I know the question. I would love to help but I dont have answers, so the conversion stops before it begins.

After 10 years, I am starting to accept the situation, which is not the same as giving up, but I think life is just a way to pass time. (I just tought of this last night)   We all are passing the time the best we can. then we die. Is this the meaning of life I've been searching for all my life?!

thanks, if my xperience benefits someone that's great. That is why I am writing it down. advice is a bit different as I have leanered that with the best intention we can leed people into useless exercises. At least in this condition it can't make things worse. (actually I take that back because pills can do that)  Everything else is just a discussion.  About sleep, about feelings, situations. Opinions that everyone has to judge for themselves as the consequences only effect them.

For example this young woman with cancer. I know everyone says fight, don't give up, and that may mean strugling to be up and be active. From my experince, I would tell her to rest, becuse her body might be fighting the illness, and she is putting more pressure on it by trying to stay up. she don't know, I don't know, doctors don't know because then we could cure all these.

I don't sound very positive , I was always a realist.

So you think conversations are good, positive ones yes, ones full of negativity are not so helpful, I try and keep mine positive, right or wrong, you tell me.

I always find it interesting when people know what other people are thinking as yoou do with the young woman in a wheel chair, maybe she would love you to ask how she is jusst to have someone to talk to, no-body has the answers so nobody would speak to her, sad thought, you may help just by talking and smiling at her, let herbe the judge of that!!

Let me know when you find the meaning of life, methinks it is just to gt through it, andthen??????

I've had it for over 10 years too and I'm starting to accept it, but not without some hope. The spiritual side of life is very important to me, always has been and it's even more important now. It keeps me optimistic and upbeat. 

l think l,m very much a realist, which l dont think means either pessamistic or optamistic, l see reality only too well, my own and others, society, and at times l despair with it, but l personally have to try and get past that for my own sake, and even my pets, sometimes l struggle and fail, sometimes l can drag myself past the negs. But your right as individuals we judge for ourselves and deal with whatever consaquence

l would think the girl in the wheel chair is doing the same, we can all take advice throughout life but ultimately do our own thing even if we learn the hard way, most of us do.  l think there is a lot of cliche,d  trendy responses to many things in life, including cancer, `l,ll beat it` `l,m a fighter` etc, it does help to be posative, but if people think theyve the power to decide outcome l think theyre deluded, lve known a lot of people whove died with cancer, and ones whove survived, little do do their character, lve known the strongest toughest battlers whove died, and some not so battlers whove survived, more to so with type where and how soon diagnosed, and the mysteries of responding well to treatment, who and how.  As for chronic disease and its affects, depends on how badly it does affect and lifestyle, personal choice to some extent, l think the more affluent west put pressure on people in having high expectations of what they  should be doing with their lives and how to live it, `get a life` etc, many now driven to go to all corners of the earth and experience everything climbing everest, bungee jumps 

snorkelling gt barrier reef, eating all foods known to humans, great if your able to, and some think anything less isnt a life of worth, well what does that say about millions of africans asian, or our ancestors, most lived a quiet life locally, but loved and worked and felt fullfilllment and happiness, perhaps far more than the be all done all worn the tshirt

`had a life`, doesnt mean their lives have been happier or more fullfilled than a peasant working the land and enjoying family nature. Scuse my long ramble, think it means none of us know the meaning of life. lve not experienced this level of chronic illness and its affects on my life for ten years, l cant imagine how that feels, l guess for me decline over a couple of years and just worse and seriously restricting over a few months 6, so l dont think l have accepted it  as permanent, so in a different place to you, and not quite as advanced, so who knows how it will go. Think l,m also fairly spiritual and do live with hope, `live in hope die in despair` they say, hopefully not, but your right in were living life passing time best we can `then we die`, realistic and sounds like a John Lennon quote. Good youve still humour and irony, and have stimulated a discussion on it, and that is good, bit of stimulation is of worth. Best wishes.

Just had a thought, l guess your the john lennon character laszlo, l and Georgia George Harrisons, Betty and Val maybe Paul McCartney,s or Ringo,s, in responses in a jokey way. 

I'm definitely a George Harrison Lynne! Love him. I'm from his neck of the woods and my dad usd to drink in the same pub as Paul McCartney. 

As for having ME for over 10 years, I was telling my mum on the phone this morning that it's character building, I really believe that. I've found that I have all kinds of inner resources that I didn't know I had.

And I'm really happy a lot of the time, even living alone and being virtualy bed bound. I do things I love to do, like I'm studying for a degree with the OU, I've studied herbalism and other complementary health courses, I'm going to do Reiki or Kinesiology next.

When I finish my degree I plan to write a book; it's been writing itself in my head for years.

Life can be amazing, even with this horrific disease. I know it's cliche but life really is what we make of it. And my upbeat, positivity isn't forced or, patronising or made up, it's real and it's how I am, optimistic. 

So I get a bit down, and even angry and frustrated sometimes but I don't let it keep me down for long. It usually just means I need a sleep.

hi Georgia, its great youve found the inner recources to make your life happy and fullfilled, still a work in progress for me, but managing so far, early days for me.

l loved the Beatles from l4yrs of age, and big fan of George in his Beatle days and after. As a teen l sent him a 21st bday card, and was so annoyed when he married Patti boyd, dont know if l should own up to this but when a star struck teen l,d dream of having a secret affair with George, and of course l had a secret child, who looked just like George, and guess what she was called, Georgia, we met up later and got together, lol, lve actually read patti boys books about George and Eric, she was just greedy, but actually comes across as likeable, and her life wasnt all heart and flowers either.  What birth sign are you, sagattarius by any chance. Still miss the lovely George, and John, glad paul and ringo still with us.  

Lol, but of course she'd be called Georgia!

I know what you mean about Patti, it just wasn't fair that she had both of them! Sheesh 

Now I'm interested in reading her book. I'm a Pisces like George. 

Hi Laszlo,

The clinic I attend I feel Is useful just a bit far travel wise which is a pity. its hard not to think about another's suffering when you aren't well either, as in the way you feel in the case of the young woman you describe in the wheel chair. Compassion, understanding and empathy are all great qualities to have but, are just like every thing else with this condition, impaired. You can't be the great shoulder to cry on when you need one just to rest your head on. I don't believe people think less of you for saying "I'm sorry I can't be of more help" I really believe this condition can teach us more compassion. We have to be more compassionate towards ourselves for sure.

Best wishes

Beverley

Maybe it's guy thing?! If I can't do anything useful ......

I also can't pretend to be happy when, as you say, I haven't got my sheet together. I did speak to her, but when she is in pain and not good mood, I can't gauge her answer. She doesn't want to speak to me or speaking hurts, or just showing how she feels.

And people who are terminal, doesn't they want to be treated like anyone else instead of pitty? That's been my impression.

I don't know if I am John, but he was a thinker ... and I am an over thinker

You two can fight over George. I just want to listen to the music.

George wrote probably my favorite Beatles songs. My guitar gently weeps, and Something in the way.... here comes the sun.

I could tell you...but I can't as I am trying to be supportive ........so is this communication ?!  

If we wouldn't "know" what others think, everyone would be a stanger. Sure, we are not always right, but prediction is just part of life.

I did talk to her btw just not much or meaningfullly.

Accepting how it is today is just means you are dealing with it, managing it. Not that you giving up, I haven't given up, but stopped trying to compare myself to others. Accepting what your life is today just gives you some peace. I don't mind other living their fastpaced life if that what makes them happy. I don't mind if others drive fancy cars and I don't have money. But the expectations are there in today's society as you say. Unfortunate. I think people are putting this on childer as well.

We sure got away from the topic

Hi Laszlo,

I think alot of people struggle with the need to do something, gender apart. I guess I was trying to reassure you that it's ok to not feel you are in a great position to respond when Cfs/me is affecting you. My contribution was meant to help you not feel unhelpful as thats what I thought you were feeling. It seems you're doing all you can, when you can.

I don't think many people like/want/need pity. Compassion is different. Like empathy and sympathy. To put yourself in someone else's shoes is hard. Whether the shoes belong to someone with a terminal illness, a bus driver, a 5 year old kid.

Today It is raining here and I'm enjoying listening to the sound of cars splashing through the water on the road. Others may be annoyed because it is wet and grey, or giddy because they can splash in puddles, or sad because they just ruined their new shoes etc etc

We're all different. We all feel our lives differently.

Hope that helps

Beverley

Hi, Well l,m trying to deal with it, as all know it can vary from week to week or day to day.  l wouldnt say l have peace of mind though, very few have, a lucky minority, most of just endure and put on a bit of a front, make the best of it, not just those with chronic health probs, society generally has become that way, fb shows that more than anything in being  more of a superficial society, jumps from love to hate compliment to insults in a flash almost.

Being older l grew up in more realistic times, more family and communal times, not overly pretentious and gushing, nor as insulting or abusive, 

maybe expectations not as high, not as much hype marketing or media,  people content easier, laughed easier, So the times are tougher, having chronic health probs on top make it harder in a big way, but not as competative in other ways, makes us more self sufficient, as much as poss. not than ld turn down a slave, cleaner gardener massuer.chauffer,

Last few days lve experienced acute pain, bit of a shock on top of the chronic tolerable pain and intoklerable lack of energy,  if someone had offered me a wacky fag l,d have taken it, had to settle for gel and patches,  Just  ordering online and getting a new microwave as an essential in life for me, well the packaging, who,d have though opening taped stapled box,s would be a challenge, but now up and working, yay.

lve sure gone off topic, but a bit of stimulating chat is good, wakes me up mentally.  best wishes

 

Brian Epstein said John was the head, Paul the heart, George the spirit, Ringo the body and flesh, l think that was basically true, and John was the big thinker, innovator, but could be a bit caustic at times, and did stimulte responses. Yes much of George,s music has remained classic, he said `Well if john and paul can do it, l,m sure l can`, in that  scouse accent, and he did.   

Hi Lynne,

Just wanted to comment on the slave, cleaner, gardener, masseuse, chauffeur and box opening. For the 1st-sounds great, if you get one let me know : D and on the 2nd-it feels like I'm wearing oven gloves when I try. Amazon changed the tape they use and and It's worse for me now.

Beverley

Yes briliant songs Laszlo! I told my son I want 'My Sweet Lord' and 'Here Comes the Sun' playing at my funeral, both really beautiful songs. 

If only, l,m lucky if l can  find a handyman, diy, gardener to do just a few basic jobs, half to an hour fortnightly, l,d pay, but it seems 20-30pound for hedge cutting, or pond cleaning, or fence mending, whatever l,d have done myself in half an hour moderate labour, but not much interest unless its over a hundred pound, all the young unemployed, say no more. My parcel was from argos, about time they offered service of delivery men coming in and unwrapping it, staples now, tape, polystyrene, l,d to use the bread knife with a break inbetween. l,d really like a new fridge freezer, frost free, labour saving, but  the thought of a big  box and tape, not ready for that, sometime maybe. Most people have no idea, sometimes l struggle getting into child proof things,duh, , oh well l can still manage a paper bag and chocolate wrapper.  

H Lynne,

Yes prices can be ridiculous! I don't have a garden, though its wonderful to sit out in one on a summers evening and I miss that. I used to love gardening. Going to bed with images of pulling out dandelions!

I sometimes get cards through the door saying handyman no job too small, maybe check If anything in local shops? I have a cleaner now, that took lot for me to do. Pride etc. But, it takes a bit off my mind.

In regards new fridge, you could see if they can deliver it and unwrap it maybe? If you say you can't due to a health issue as you'd need them to position it for you I guess also. Some places take away your old appliance too. That's just reminded me that not too long ago I was lugging my old appliance to the recycling centre, madness! Hope the new microwave is working out ok after the adventure getting it out of the box-i 'm a bread knife box opener here too : )

Best wishes

Beverley

Also...me too re child proof things, even shower gel bottles but, yes, so long as I can manage a chocolate bar, I'll be ok : D

B

Yes l think some would oblige if we asked, as you say it takes quite a bit to ask for help, l probably will ask about the fridge freezer , good idea, as it is a big job to sort.  l still make effort to recycle, just tins and plastic into the recycle bin, sometimes thats a drag, but manage. My son said to me weeks ago, do you think it would help to get a wheelchair, no, l think he meant a scooter thing, but not even ready for that, but great for those that use them, gets them out a bit, but practicals also, steps, thieves if outside, l do love the garden and  mild summer evenings, preferrred to hot summer days sat in it,but, in shade good.  Cant recall if its you or Mike, one of you l recall lives near waterfront, which is also good.  There was a news item on mbs about how to easily break off lge tolerone pieces, bend them inward apparently, unbelievable, info on that. l can certainly manage to break even giant size pieces off, got to get prioraties right, l shouldnt have thought about it, cant get one for now.   

Hi Lynne,

I live near a river and canal which I love. Just at the end of the street. I also recycle and am lucky to be able to do glass, cans, paper and plastic bottles. We even do food waste here. I miss not being able to take my cardboard.

Chocolate is a priority here too. A lovely treat : )

Oh I got what you were saying, but it is not up to others to say I done enough. can't accept it from others. Always up to me. I am the unsatisfied one about that.

Want to do more, but not want to get in too deep that I can't handle. Tricky.

I don't know about tape. Usually I just cut it. Staples are a diffferent story, but they don't always put those on the top, Bottom yes. Plyers help.

If something is hard to open, always look for a tool. and wear gloves so you don't hurt yourslef.

 

Yeah that one too. That reminds me. Since you are in the UK, any Barclay James Harvest fans here?

I heart my back 3 days ago. An old injury. And all I did was leaned forward.

Rested on my back for 8 hrs. Next day better and today it was gone.

As you say, all these things with age or old injuries, many people have, but on top of CFS, and it becomes so much harder.

At least my CFS is moderate. I was out for an hour walk today, shopping, window shopping, up and active for 10 hours. This was a good day.

Hi Laszlo,

Getting the right balance of being there and not getting too involved is tricky, you're right.

B

l thought you,d said at first, always look for a fool to do the job for you, l,ve looked but cant find one, so will try using a tool for next big parcel

The weather in the uk is just starting to imporve, more spring like, it does help a bit, and those good or reasonable days do help, make life a bit more tolerable.  l was also out, a little walking, a lot of looking, birds, squirrels and swans also enjoying the spring. Yeh, good day for me als

So are you not in the uk, l thought you were in london for some reason,

enlighten us, but dont say if its anywhere exotic and sunny. Georgia will know the rock bands, she,s more rock and roll, a biker, in the day. Probably be a day of sofa tomorrow, l ws thinking lve spent more time of the sofa in the last few months than lve done in decades, Live in hope for another good day,,  

Hi Lynne,

The fool/tool made me smile : D

Me too re resting, had to go out today so, have to take it easy tomorrow.

Rest well

Beverley

Hi, Bev, Think everyone and his dog went out today, sun shining, l enjoyed it be it brief, and l,d poor night last night, never good any night, restless disurbed, last night worse, l dont know if its me or something else, but l get bad cramps and spasm, foot and sometimes hand, strange feeling. See what tonight and tomorrow brings, like a voyage of discovery, but not a med cruise, more like Jason and the argo, Sleep well and  all.  lyn

Here's to hopefully a decent night with little adventure Lynne

I read it twice before I got it but it was good because it wasn't easy

Sunny this week, but it have been rainy. Nothing new, it is a bit of a rainy area. Had shorts on today   Vancouver BC area, we have the same queen Like little George too..... yet another George

I heart my back? lol does gonna let things like that pass? You are too forgiving........there goes the language

Wow, not exotic exactly but spectacular, from pics lve seen, but do get Vancouver and vancouver island mixed up but guess theyre simular, l thought it was a snowy area with mountains, But must be warm to be doing shorts in april, but just warming up here, and the men are soon into the shorts these days, far more than women. Never saw my dad in shorts, theyd have had to hold him down to get them on him. Times have changed, definetly cooler.  lve cousins in montreal toronto. were nearly related. l know youve problems at times getting your posts posted, but if you can do it would be good to see pic of Vancouver.