Am I talking French? M.E. and communication issues

Hi Mazpaz,

It is interesting hey. From what everyone is saying, including yourself, Its very clear now that this is a M.E. symptom. Thank you for replying : Im so grateful to be  able to post concerns on here- you tend to think youre going slightly insane if it wasnt for the support of folk on here.    

Hi Pat, thanks for replying. Its good to know we are not alone hey with this and it is a M.E. thing, even if it is a very frustrating symptom to have to cope with. It can make you feel stupid hey and also vulnerable but we are ill and our brains are not functioning properly so its not our fault.

I completely relate to the difficulty in getting my own meaning across!

It really does seem as if I am talking a completely different language to everyone else! In my head it all sounds perfectly ok to me but the expressions on peoples faces tell me otherwise!

On better days I find this quite humourous but it does worry me a lot on the "not so good" days. ;-)

Hi JK, I like it! I will use your phrase now " "I'm sorry but I can't listen as fast as you can talk"- it describes it perfectly :-)

Hi Beverley, Thanks for replying. I totally relate to everythign youve said. Its almost comical really, the way we are (I do chuckle sometimes at myself), but also very frustrating (ie. the way we must appear to others). Such a confused world we live in with M.E.hey.

Hi Beverley, I enjoyed reading your input as I can relate to all you said. Very well put! It's like we all speak the same language on this site, but no-one else can understand it. I find it very frustrating the way M.E. mimics other conditions. When I relapsed in 2010, it took the form of passing out momentarily followed by 6 hours of vertigo and emptying my body at both ends. I told the doc it was just the M.E. but she said she had to send me for tests just in case. All I wanted to do was rest it out but I had to go for tests for my heart plus MRI scan to check I didn't have a brain tumour, etc. she is a good Doctor, very supportive and sympathetic. Every specialist I meet seems to want to diagnose me with their particular illness/disease. Most simply don't believe in M.E. I was recently diagnosed with severe depression by a psychologist! My doc said that he hadn't taken my illness into account. He obviously didn't believe in it but he genuinely wanted to help me and he really did. The pain management course was extremely useful to me. I learnt some good coping strategies. I'm sorry this has been a long input, (I know they're hard to get through), but I'm relieved to get it off my chest. Thank you.

Thanks for your post Jk1952 - it sums up my own thoughts very nicely.

I also found agreement with Beverley01 in the way our behaviour seems to change in different situations, depending on if we are having a better or worse day!

Hi JK,

No need to apologize, it didn't seem a long post. I think what you said about us all speaking the same language on here that no one else seems to understand is a good way of looking at it. I go to cfs/me clinic and I really feel understood and heard there but, that's their specialism. Its so odd how other specialists knowledge isn't that great. I saw a neurologist recently who said "what's cfs/me?" As I explained the symptoms that I was coming to see him about, it was like I was speaking to someone who had no idea about why I was there. Yet others on here have had cfs/me confirmed by neurologists!

Today is a rest day as I went to a local cafe with a friend yesterday and am paying the price now. I don't know if we are lucky or unlucky in that we have been friends a long time and both ended up with cfs/me from different triggers a couple of years ago. It means we can at least understand each other even if we can't always meet up and can even laugh at the absurdity of our symptoms. Watching someone else talk gobbledygook etc can be also strangely reassuring!

I think we all deserve a medal for managing this truly awful condition. Often with little support and help. Sure, there are bad days emotionally for all of us. Which I feel is totally understandable given the stuff we have to deal with.

Hope your day goes well

Beverley

Hi flowerpotlady,

It sure is! I think that there is definitely a problem with conditions that have inconsistent symptoms. If you're out cold one day, then the next you're able to be up and about, most people can't understand it as the brain can be quite lazy and looks for patterns to make its job easier. There is no pattern often with this condition thus, maybe its not as bad as we say it is or we must be making it up! Sure can be a hard ride. Hope is a must with this. Hope that we recover, hope a cure is found, hope that there's more understanding for this condition in the future.

Are you in the UK by the way? Just wondered with the bus pass thing.

Best wishes

Beverley

Hi Beverley, You are so right -"hope is a must with this. Hope that we recover, hope a cure is found, hope that there's more understanding for this condition in the future". We have to have hope else all is lost. I think the worst thing with this disease is the lack of compassion from others- but also like you I can undertand why they dont get it either.  Yes, Im in the UK- and you?

Hi Beverley, l think most so relate to your post above, can feel the realness of it. l woke this morning feeling like hell, usually do but in degrees of severity and coming round, 1 to 3hrs, still waiting fatigues, aching, sore eyes, body heavy. The neg sets in, where is the bottom line on how bad l can be and feel, have l reached it, l know others on here worse than l am with debility. Then its, `the gp is useless, either dont believe or not interested, or cant do anything about it`, casually. 

If it gets worse how will l manage, how can l care for my little dog, cat, home upkeep, omg, cant get out as l,d planned to, just to the shop, never make any plans appt in the morning for the morning. Get a grip, can manage to go on computer, do it, Come on here and read posts, comforting, inspiring, funny, its like my unreality as now become a reality in line with others unrealities that are happening to them, its given me a little kick start. Yes hope is a total essential and a sense of humour some of the time.  l said to my son on him visiting, `l,m fed up of hearing this news story, its always on`. He quietly replied, but mum youve got news 24 on, oh right, lol.  Its just background left on even when not watching. l,m sure he thinks lve alzehimers, think it myself some time, but the physical endurance belies it, not making light of that, but most are physically fit and can often walk miles. But so glad l managed to walk a few paces to the computer to read the posts. 

Hi flowerpotlady,

yes,am in the UK too. in regards communicating Me and a friend, also with cfs/me, were going to do a sign launguage course so that at least we 'd still have some form of communication ; ) they get to a point where it hurts to talk and get chest pain at the same time on bad days. 

hope your day goe well

Beverley

Hi Lynne,

it's strange with this condition how the neg's set in. sometimes when the symptoms aren't as bad as other days? today, its a feeling of no sleep, weak muscles and on autopilot with pain thats not hugely disturbing. I can't go out as it would be a big mistake to my energy and know I 'll need to bed rest. I don't feel so negative, infact, I must admit, I feel slightly happy. yet, I have had other days like this where I too fear for my future and end up feeling tearful and a little scared. Not all day. it will be for a while though. I feel this is why it can often be mistaken as depression. I know I'm not depressed. I feel my fear and subsequent negative thoughts are justified given the condition but, its important to go back to hope and remind ourselfs that its ok to get upset about it sometimes. 

I'll be honest, this is only the second time I have used the computer to reply to messages. I find it harder than my tiny old fashioned phone. I can also turn down the brightness on the phone so, even though the screen is tiny, it's advantages outweigh the disadvantages. I'm thinking of getting a laptop for my rest days. 

I 'm hoping that by resting more I have a chance to recover in the future. I have to go out on wednesday and know that if I were to be silly today, then I will be no good then. Such a delicate balance. I'm even pleased that I have an extra day to recover as tomorrow is tuesday ! 

be good to you 

Beverley

Hi Bev, l,m just starting to come round a little, a new record, near 5hrs, and with an hours sleep thrown in. l too know whenl feel half reasonable my mood lifts a little with it, as does my anxiety for the near future, always believing in live for the day, not to worry about things till they happen, just a waste of emotional energy, but on bad days its a battle, but think times of anxiety are justified due to how it affects and the restrictions on lifestyle, l suprise myself l have become stoic and can joke at times despite it, guess due to past experiences and hope.  l did do two days running of an essential garden job, just an hour moderate labour when it was warm last week, the alternative was the fish in my pond would have died, so went for it, knew when l was doing it l was taking a risk, so maybe thats catching up, time will tell. l use desktop, do have laptop but find the keyboard flat hard to use. l also at times think, tomorrows a rest day. yay.  l, touch wood, never lose hope, and do try to keep humour when poss. l,d to go to docs other day, aft, but still feeling really rough, got a taxi down, Asian driver said to `how are you`, l said `l,m dying`, my sarcasm didnt translate to Asian, he took it literally, sharp look at me, saying `NO` near swerving the taxi in the process, l said to him, well no just feel as if l am, he then laughed and patted me on the back, he might have felt like slapping me instead, but we both laughed.  Thinking how good youve a freind with same condition, and can empathise, just sit quietly if feeling that way, without any awkwardness or chat in m e style, then you saying you might need to learn sign language, l,m thinking you could also use pre printed card signs, you could have a laugh at passers by looking and wondering what your doing.   It is a balance, but glad your feel happy today, l,ve come round a bit and now ok, emotionally at least, just still a bit off it  physically,its partly due to time but also looking in on mbs helps lift body and spirit.

Take care  Lynne 

Sign language would be a great idea if I had the energy to learn it!! I have friend with M.E. who is housebound so we often talk on on phone and I sometimes visit if I have energy but she loses her voice altogether if she has done too much and sometimes can't talk for weeks at a time so we write letters to each other (she can't cope with using computer at all). We always know when we are overtired talking to each other as we both start talking nonsense but at least we can laugh about it - other people just look at you like you are stupid! Not good today at all, body aching from head to foot, very poor concentration. Met friend for lunch on Sat and went to supermarket yesterday - done way too much - really paying for it now!

Hi Elaine,

Sorry you're feeling it today too. Mine is from meeting for coffee yesterday and MRI scan friday i think. But, would rather do the meet up and 2 days rest than not meet at all. Writing to each other is a good idea : )

Rest well today

Beverley

Thanks. It's so frustrating - felt like I'd picked up a lot last week but back to square one again. Will just need to rest and pace and hopefully will pick up again. Weather rubbish again anyway - there are bits of snow outside now! 

 

Hi Elaine,

i have learned some sign language. I knew it would be difficult at first so I started with an intro course. It was enjoyable. Within an hour we could all do alphabet, introduce ourselves, and ask what the person's name is. I soon made friends with a couple of others. We met up occasionally to practice. Because my father is profoundly deaf, and I have hearing aid in one ear, I decided to make a start just in case. I'm afraid I haven't kept it up but the basics have made it into my implicit memory so I can communicate with a deaf person.

Hi Elaine,

It's been so cold here too today, I've been in bed resting with two quilts, fully clothed, scarf and fingerless gloves! I just couldn't get warm! I hope we both pick up a bit tomorrow.

B

The mind boggles. I am trying to imagine. It does'nt seem to matter what you cover up with you don't seem to get warm. So is it when the body is cold from the inside no matter what you cover up with you stay cold.

Hi - still not good. Fell asleep this afternoon lying on settee with blanket on me. The cold doesn't agree with me at all. Joints really sore. Mind not good today either - struggling thinking straight to type this. Just need to keep resting and hopefully will pick up soon. Hope the weather does too!

Sorry really late reply. Not very good today. Some basic sign language might be useful - might think about trying it if have energy. Hardly energy to speak today - forgetting words, can't think straight at all. Well done for learning some!! 

Hi retriever,

Yep, once I've gone past a certain point, hard to get temperature back up. It's been such a crazy weather day here. Hailing, thunder, very dramatic sky. Been an in day anyway for me, still resting,

How are you?

Beverley

Hi Elaine,

I've been In bed most of the day here. Am hoping this will help as have to go out tomorrow. what weather here today! Such dramatic sky, thunder and hail.

Hope tomorrow is brighter for the both of us.

Beverley

Hi just to ditto what your saying.  l felt usual lousiness on waking, but did come round a bit later, tidied up a bit, needed. But then faded to fatigue, fell asleep tea time sat on sofa, for an hour or so, woke as after nap yesterday,chilled, also groggy, to study what time and day it is even, its horrible as if drugged,  Feel heavy aching sore eyes, wanted to type letter, didnt know if l could do it clearly. Maybe envoiramental conditions add to it for some. allergens, whatever, just not a good few days for many it seems. Your not alone, so maybe an early night for me and hopefully a better day tomorrow for all of us. Goodnight

My mind has woken up now but body wants to go to bed. Good luck with going out tomorrow. I'm having another rest day tomorrow but am hoping to manage to go to local shop on Thurs but will see how it goes.                                 Sleep well.

Now my mind is awake but body exhausted. I know it effects my sleep at night if I sleep during day but just can't stay awake sometimes. I always feel awful in morning when wake up - never really feel good till late morning. Usually have most physical energy between 11 and 3 on a better day. Today just felt rubbish all day. Know always feel worse when cold. Just need to keep resting till pick up again. Hope you have a better day tomorrow!

You too Elaine, rest well tomorrow.

B

Sounds lilke me, wake up, and cant explain, but you and others probably know, like dragging yourself to function,  dress, get to kitchen for a drink, usually 1 -2 hrs to come round, on good day,  yesterday not too bad, tidied up a bit, today back to fatigue, plus serious aching in shoulder and wrist, used gel and heat patches, too hot take them off, good job its left side. Like you and Bev had planned to get out a bit, so going to get sandwich, tea, and live in hope.weather changeable, not quite as cold and damp, it does help to feel warmer.  l hope you and all are having a better day today, keep us posted, interesting to see if there is any uniformity on bad and good, or reasonable days. 

Am bit better today. Felt rubbish when got up but little boost of energy after lunch and managed to walk to shop so don't have to go tomorrow. Did relaxation CD as soon as got home then managed to phone a friend. Am resting in garden now - quite warm in sun in sheltered bit. Heat helping my muscles. Seems to be helping my old dog too - he's rolling on his back barking now. Yesterday he could hardly walk (like me!). Hope you are having a good day.

Glad your having a better day, l woke with usual fatigue  but came round a bit, but had bad pain in shoulder and wrist rest of day, but like you managed short trip to local shop, hailing at that time, though weve had some sunny spells. We can relate to our pets at times, apart from rolling on our backs, my dog does it, and the cat, horses also, seems to be the ultimate sign of them being really happy. totally lacking inhibition, l think the heat does help, guess that why those that can afford it retire to a sunny country.  Glad yuo enjoyed your day.one at a time,

Glad you managed to get out too.  My dog is 14 but still has the spirit of a young dog - he's so determined to do things even though he has really bad arthritis. Still plays in the house even though can't walk far. I find animals really cheer me up. I managed to stay awake all day today but am tired now. Off for hot bath and bed. Hope you sleep well.

Ive always had dogs, love them, and they often do get athritic in later years, l,d a gsd with hip displasia in later years, she battled it a few years, she was lovely, if l could have picked her up and got her going l would. 

lve a terrible terrier now, always had big dogs, decided due to age and heatlh to get smaller dog, easier, so l thought, harder work than the big dogs, but yes she does make me laugh, so naughty, wouldnt be without. i,d really bad shoulder and wrist pain yesterday,worse by night time, didnt know what do do with myself, felt ill, threw up, but then able to go to sleep, restless, but got some sleep so pain eased today, usual drag in the morning, like trying to get a ton weight upright and moving, again its part to dog that motivates me to function, feed and into garden for her.

then my food.  Hopefully get into garden when nice. Hope your day goes well, we never know till we come on and read what sort of day everyones having, l know you and Bev plan an outing today, good luck with it and hope all have a decentish day.

I've got a golden retriever. He's been a great dog and really helped me cope with things over the years. My husband used to take him for bigger walks and I walked him as best I could. I stay very near a beach so often just took him over the beach so he could run about and I'd sit and watch him but sadly he can hardly walk at all now. I'll be lost without him. Might think about getting another one when he's gone but don't know if it would be practical to get another big dog as I'll be 50 next year and health worse now than it was when I got my current dog. That's a shame about your shoulder and wrist pain. Have you seen a physio about it? I had 2 falls - one when I hurt my neck and shoulder and another when hurt my wrist and saw physios for both. Good shoulder exercises are shrugging your ears up to shoulders and letting them drop and also let arms drop to sides and do gentle shoulder circles. With wrist I was given some exercises to do one of which was squeezing a ball (like stress ball). Also wear wrist support when lifting things. At christmas got a magnetic bracelet which I think helps a bit. I also use plug in heated pad for pain which I find really helpful. Hope you have a better day.

hi, its eased a bit today, was horrendous last night, felt sick with it, its  something got worse over last couple of months, put down to fibro, but will make effort to see docs, hate going. l just did the shoulder thing sponteneous on reading it, lol, and think a wrist support might be good, felt as if l needed some thing like that. lve used heat pads, might look at elec ones, the thinks l buy from ebay, supplaments and herbs last week after reading Georgia,s, post.  Golden retriever are lovely dogs, great temprament, big teddy bears. l prefer big dogs but had to be realistic due to age and health, there are some nice smaller ones, spaniels are nice, my friends a king charles, another shows pappillons, collie,s nice dogs, l,m sure you wont be without a dog when time comes.  When l couldnt walk as much l, d also sit in nice area and thrown a ball or stick. 

Coincidentally, poster Retriever as a retriever that doesnt retrieve, just looks at the ball and waits for him to bring it back lol, dogs decide for themelves what theyll do. Below my cross collie gsd, she was also a lovely big teddy bear of a dog, got hip displasia, but lived to l5yrs, not bad for displasia dogs.   Dulled in a bit, but might get out to garden yet. Hope the day goes well for all.

Hi Lynne,

I went out yesterday and its floored me. Such headaches, my ear and cheek are burning too. I had a bit of a cry earlier then back to bed. I hate cfs/me some days!

We have guinea pigs here and animals are pick me up at times.

Hope your day goes well

Beverley

Your dog looked gorgeous. 15 is a great age for a big dog. Mine's needs his coat on all the time when he's out - has bad arthritis in back, hips and knees but all the kids say he looks like a teddy bear! Golden retrievers are my favourite dogs but are big. Like cocker spaniels but my neighbour has one but she seems very lively all the time. I really like King Charles spaniels so would also consider one of them They look like they have good nature and look like happy little dogs. It's very cloudy here now - going to take dog out front before it rains!

hi Bev,  Hope you feel better after a rest.  l had a really bad day yesterday, its when youve severe pain on top of the fatigue, for me shoulder and wrist, l also get the flushes with the pain, by evening felt clammy and sick,

rang son up, late, something l  rarely if ever do, just so freaked out with it, l was on phone saying, the pain is really bad, oh, l feel sick, ugh, at which point l did throw up a bit, still on phone, omg, l rarely do throw up with or without pain, but whatever reason l did last night, l hope he didnt record it, today l can lol about it, Thankfully, although l still had pain l didnt feel so  ill with it, and was able to drift off to sleep. Today despite restless night the pain is more dull and bearable.  Guinea pigs are nice, sometimes think were like guinea pigs, l love my dog. Hope you wake up feeling improved,  lyn

 

She was a lovely dog, strange they get athritus, and have those heavy fur coats, mine had a double  coat, near impossible to bath her, water just rolled off her, and she shed fur balls.  l had a neighbour with a retriever, seh was gorgeos, theyd a 2yr old child who just rolled up with the dog, who was so patient. lve had a neighbour with cocker spaniel, they look placid, but think they are quite lively. My old friend loves cavaliers, had about 4, always gets one when the old one dies.Dull here also now, i,ll go and do something, 

 

Hi Lynne,

strangely I had the shoulder/wrist combo for a few days this week. Although i got out wednesday, I ended up feeling so ill with headache and nausea that I went to my bed at 5.30. Luckily, my lovely daughters made tea but, I felt so,so ill and couldn't manage a dvd with them. by thursday morning, exhausted, which seems my norm : ) and in pain i ended up sobbing and saying how much I hate cfs/me ! my crime this week was cleaning a window. Even though my wrist was killing me, i decided I couldn't deal with seeing it so bad and am hoping to get some decorating done soon so, with a small amount of energy-i made the mistake of forgetting how this goes. I rested straight afterwards and it was another day where the girls cooked tea so, I really thought I'd be ok. 

Yesterday was just awful and this is because I had a few drinks thursday evening! so, another bed day. not really come around yet. It can be so frustrating can't it? I never had health issues before like this and feel that I do moan a bit now but, truly believe that its better out than in. I also feel the pain is so intense. I've had four children naturally without pain relief but the pain you get with this is unbelievable. I get quite annoyed with professionals who say that its me whose seeing it more intensly but, I've had it so bad I've felt I'll pass out. Thats not psychosomatic. today, no pain, just the exhaustion and feeling wobbly. How about you? 

Guinea pigs are great. we have two boys, one cheeky and the other more reserved. We all squeak at them and the squek back, quite funny really. I had them as a child and they were very friendly creatures but, back then, I didn't know about giving them lots of fresh veg. We had a garden and they'd get leaves sometimes. But these love salad, leaves, tomatoes, carrot, pepper, cucumber. I end up making it like its an extra setting at the table !

I have ended up with a very sensitive back and thus couldn't have a dog. its if it pulled on the lead I'd be scuppered. I think I'd love the walking companion and near here there's the canal which would be lovely for the exercise. When I'm better I'd like to start walking again.

I hope today is gentle on you. We had snow here which was nice to see but, I consider a bit late in the year although my sister asked if I remembered it snowing in May in the 70's ! 

best wishes 

beverley

Hope today is  a reasonable one for you, l,m just tired, same old as they say, woke early, decided l felt ok enough to function early also, so went off to supermarket 9.30am, 45min came home drained, now doing nothing much, weather usual, grey and rainy, few sunny spells. lve always had long standing pelvic pain, lower back hips under butt top of legs often worse overnight, thought not every night, but eh shoulder wrist pain, as started in last few weeks along with the increased fatigue, took me by suprise l didnt know shoulder pain could hurt so much, and odd in middle arm not bad, then severe in the wrist, didnt know where to put my arm, darent put pressure on, darent sleep on the shoulder, then felt flushed clammy sick, rang my son bit of a panic thought l was going to pass out, talking to him on phone 10.30pm and was sick, charming, but felt better for it, pain still bad, but dropped off to sleep, maybe the colder air aggrevated, who knows whats going on with us and far too many others. l pm Lillian, who posts, as she,s had same, and ended up needing steroid injection in her shoulder, and still got some pain, but also steroid side affects, quite bad for her, and now many people on here having tests for lupus, lve also come up in a face rash in last few weeks, never before gp said pimples, oh right, about 60 of them and red down cheek, but not butterfly rash. l,m like you had 2 chldren, csection,s infection, hysterectomy, gall bladder, had cancer many year ago, with chemo and radiot, got through all quite well and never felt as bad as over last few month, always kept going and able to travel distances, walk a few hundred yards at least, get up well do gardening, decorating, l think drs, surgery,s are overwhelmed with the amount of people of all ages with chronic health probs, more so the immune allergy type,  not enough consultants and clinics to deal with all, so fob a lot off as long as they can, l,m waiting to see rheumy had to have a stroppy phone chat with practise manager to get that, she more than me, officious, l dont know how long the wait is. But yes l,m glad of my dog, they are company and comfort and funny, but l could run of trail after it if it escaped, just try to bribe it with treats, put a heavy collar on it, l got it before symptoms got so bad, what could l do, if l,d known l might have thought again, or get tiny slow little dog, chicawa?, yorkie,westie,

Guinea pigs are cute, easier than rabbits, who often get neglected.

They had a thread on another site about tremory wobbly as many do get, l think its tiredness and weakness and pushing yourself when feeling like that.  l felt really fatigued, but my son asked me to go on run out, local nature reserve l love, l couldnt resist, l cant walk round the big pond now, but walked 200yds with rests, he let me use his new expensive camera to take pics, l couldnt hold it still, shaky, he was shocked, dont know if for me or the camera.  Strangely when you said you,d tears the other day, so did l, and its quite rare for me, even when down, but that day too much, but if we can express on mbs where can you, no one much else wants to know or listen, l rarely mention it to anyone, even gps dont want to listen at length. l see old friends on fb going here there doing this and that, try to be gracious about it, this morning saw my next door neighbour setting off in their caravan, again, have a good time.  l try to think some are worse off, and of course never give up hope.  Well Beverley, think lve rambled on more than enough, so hope you and others have a reasonable day and weekend. Take care lyn

Hi Lynne,

My shoulder issue often feels its dropped out of place? Awful pain but it subsides If I lay down a while. Such fluctuations in symptoms and pain levels- makes no sense.

Re the animals, we had a lovely rescue rabbit before and we had him out every day but, he had Issues! Gorgeous to look at, hard to pet as he'd get amorous and also bite and try burrowing, poor him and frustrating for us. A little dog would be good just so much harder to keep happy.

Hope today has less symptoms for us both.

Beverley