Derealisation in CFS

What is level 12?  And what is stop method? Can you recommend a meditation tape!

l can so  relate to what you put dow as symptoms,l  guess many can, but ther  are so many affects follow or go along with the main fatigue pain posters dont always mention them, like your saying about reaching up for clothes rail or whatever, ditto, too much effort in shops, The weakness and inability is demoralising, makes me feel embarressed and  pathetic at times. l get heavy groceries delivered, pet food, detergents, spring water, they bring it to my door and its still an ordeal lifting it into hallway, to be packed away later, l try to have a cheery chat with delivery guy, but cant hardly communicate due to effort of moving items all of 4ft away, my sign on his screen thing is a dot, and its go away, shut door flop. My gp acknowledges fibro, but waiting to see rheumy, l need diagnoses and many wait a long time for them, part of me hopes its something different so l can have an op or pills to cure it, so l can do things, go places, l,m on my own, 2 sons, one a distance away see once or twice a year, other nearer once a week, and havent the energy to socialise and cant drink, gastritus, n enrgy for club,s , little  ive got goes on essential home pet garden, and not enough for that to do  it thorogh, but l dont have kids to be responsible for or clear up after, down side it is lonely, l feel l ,m now Eleanor Rigby, l also thought ld meet another partner, cant believe lve gone years and not done, but wasnt pro active, maybe wish l had have been now, before symtpoms got worse, now much harder, but l never give up hope on improving, finding a  good partner, travelling, 

l still crave chocolate, eat more than lve ever done, did put some wight back on, but despite amount of chocolate or minimul exercise lve not really put more or excess weight on, think l l ose a little at times.  At 37yrs your still young, might not feel like it, but youve time to improve, and meet someone, your children will keep you motivated even if hard work often, youll keep going for them, even my dog gets me up and moving in the morning, be slow stop slow go over 2hrs. My level of debility disability restrictions are farily new, 6months or so, after years of decreasing stamina ability, but manageable enough to pass for a normalish life, so after 6month still battling with trying to pace, trying to deal with it mentally, the fine weather is a present help, darent think about winter at all.  Others are worse than l am, although l do sleep l-3 times a day for an hour  or so, some can be bedfst for a day or a few, but do improve enough to do some things Some do art, some open uni, whatever it takes to keep coping and keep upbeat some of the time. Some will offer your advice on suplaments complimetry, having dealt with it years, so worth trying anything that might help, Try not to feel guilty about your kids as your doing the best you can for them. Practical help like home deliveries, to cut back trialing about getting tired, take help if offered, babysitting, try to ignore the cynics, society,s full of them, tehy cant see i t so it doesnt exist. If your gettin frequent uti symptoms and no bacteria on testing, it couild be interesticial cystitus, linked to fibro often, l,m sure others will offer advice, dont give up hope, best wishes.

Just read your post and can really relate to how you feel. Please don't feel like your life is over. That's how I use to feel but you can still enjoy things in life, it just means that your life will be different. There are a lot of things you could try which might help a bit. Am tired just now - away to have lunch. Will send you a longer reply later. Let me know how you get on at docs. xx

Dear Sarah,

You are not alone, as you can tell from these replies!

I completely relate to your post too! I found getting confirmation of diagnosis hit me hard, even though it was fairly obvious!

Any health condition comes as a big shock to the system and with chronic conditions especially, it really is like suffering a bereavement, which you are! Your usual life and anticipated future have been taken from you and it is so hard to imagine how you can ever continue. You just need to take life a step at a time right now - live just moment to moment if you have to! For every moment you get through is a positive step into your future and eventually those steps grow more and more and have become a minute, an hour, a day, a week and you'll gain confidence from knowing you ARE moving forwards.

Is there a specialist CFS/ME service in your area? Your GP may not even be aware if there is so worth checking with your local health groups.

I have found the most difficult part is getting those close to me to understand how ill I am! Realised that (like in most things) I am being my own worst enemy and made the decision to stop worrying about what others might think and listen to my body! All of those symptoms are warning shouts from your body telling you that you must slow down, take a break! Your priority right now is YOURSELF! Goes against everything you've ever thought or done , I know but it really is the mindset you have to get into.

Back to my point earlier - you are suffering a bereavement, what advice would you give a friend or loved one in that situation? Take that advice yourself. It takes at least six months to basically overcome a close relation death - there are all the stages to work through and, of course, everyone is different in how they cope.

Family and friends will be feeling just as stumped as you are, although you just want someone else to do something, if they've been used to you doing all the coping/managing etc it is just as hard for them to know how to do things! I am beginning to get more used to telling my husband what I want and need him to do but it isn't easy. It increases my anxiety which leads to increase in symptoms and so I feel worse but gradually he is learning and doing more without prompting!

It is a cruel reality that, for most (if not all) sufferers of CFS/ME, a big factor of developing the condition is because we have continuously overdone things and not put ourselves first! This means we find it so much harder to ask for help and support which increases our symptoms while all we'd like is the other person/people to "just do" what we find easy!

Must stop rambling on! Hope some of this has made sense and might help you in some way!

This forum is excellent for support. Keep posting or feel free to PM me- you are never alone!

Big hugs to you x

Hi Sarah,

I'm a single parent too and I know it may feel you'll never meet someone else but, I met someone online before my diagnosis but still while I had symptoms. Don't give up hope of finding someone. It pays to be honest but also, cfs /me doesn't mean you can't socialise, just be aware of your limits. If you do end up going on dates, and an hour is all you can do then, just stay an hr.

I know on bad days our confidence in ourselves can take a battering, remember that Is just temporary, I bit like the weather.

Best wishes

Beverley

Hi Sarah - I see you've got loads of good advice and support here already. You haven't had your symptoms for that long so there is still a chance you could improve or recover. Even if you don't that are lots of things you can try. You could ask your doctor to be referred for CBT which I had and it helped me a lot with coming to terms with being ill. You could see if there are any other local resources which offer counselling of any kind (sometimes it free). I did this too and it can help to talk things over with a stranger. You could possibly meet another partner on online dating service. Even if your symptoms don't improve there could be someone out there just like you waiting to meet you. You could see if there are any local self help groups you could attend - I did a Positive Thinking course (only managed 3 out 6 sessions) but got something out it and even better met a woman there who had mild case of CFS and depression who I really got on with and have been friends with her now for nearly 10 years. Not sure how old your kids are but could they maybe help you round house in any way even just putting toys away/keeping room tidy? A simple healthy diet can help too. The things I've found most helpful are listening to relaxation CDs and doing yoga. When I say yoga I don't mean bending yourself into weird positions strenuous yoga - I do remedial yoga most of which I learnt at a class which is mainly floor based breathing and stretching exercises. If I do yoga then rest I'm OK - just a bit sore but if I push and do other things it sets me back. It's about getting the balance right. I also keep a diary with brief history of what I've done so I can see what I've done that could have set me back. I always try and write down some positive things too as it lifts your mood eg today I managed a 25 min walk and enjoyed sitting in garden in sun. Don't lose hope. Be good to yourself. There is plenty help and support out there is you look for it. x

Hi all, things are really bad but I just wanted to sat thanks to all who replied to me about CFS. I keep trying to convince myself I haven't got this but it's not working. I was afraid to come on here because each time I got a prompt by email about other threads I was spooked at how much they all sound like me. I just don't have the energy to tackle this. It's like a slow and painful death and I am ashamed. I am failing everyone around me. I usually push myself to the edge and keep going and always pick myself up again. But not this time. I feel like I am in a cage or a tomb. All the things that I want to do, all the places I want to go and people to see....it's all impossible. There is no-one to help me. There is no-one there for me. In my utter despair and confusion of the last three years I pushed everyone away. I have kids relying on me and nobody to help. I've tried to rest as much as possible, I've tried to ignore it and carry on, I'd tried to do little things only (pacing), nothing helps.

I have an appointment with 'Psychiatry' 'Chronic Fatigue Department' for about a month away. I don't understand this. I mentioned to the GP that I was worried I was crazy, in that I went through abuse and came out the other end and now cannot form personal relationships with anyone. I used to be clingy and desperate but now it's like i've gone the other way, completely detaching myself from all humans except my mum and two kids. I'm just scared of everyone. So....why is this CFS team in Psychiatry? I was told i'd get a referrel to psychiatry and also to CFS team.... I don't get it. Are they saying they think it's all in the mind or stems from the mind? 

I am currently finding it hard to think straight. Or do anything. I've been signed off for two months but what if it's not gone by then. I can't even job hunt or sign on or attend meetings and courses that they put you on. I am so scared. How can I work? I can barely get through a day. I've tried three different jobs in the past two years and each time have just fallen apart with exhaustion. I wouldn't care if it was just me. But I feel bad for my kids. My sister and her kids are living this amazing life of wealth and comfort and all the trappings of success. We have no money, live in a flat and I haven't had one holiday in 7 years, not even a day trip. How can I ever improve from this??? I am 40 years old. If this had struck earlier I would have been able to at least believe that I could get my health back. But my kids drain me all the time and I give what little energy I have into loving them. That's all I can do. Help,

hISarah, l,m sorry to read how bad your feeling, much of what you feel and experience happens to others with chronic disease that makes them feel so bad and puts such restrictions on their lives, and it can get you that low with anxiety and depression, more so because due to it you lose contact with family old friends, new friends, one way or another many push them away, in part because we know how difficult or impossible it is to be reliable as a friend or with a social life, so feel your letting people down, and they you through most not understanding or seeming to care.  What makes it even worse  is when authoraties be it gps, or dwp, jobs clubs, dont understand, and we all know that many dont, all been there. Natural you feel guilt over your kids, most parents would when affected so badly, and your kids wil be affected to some extent but kids are resilient, as long as they know you love them and are doing your b est, l,m glad your mums there for you and the kids. But you do need help and support beyond them, although some gps are cynical many do understand that cfs fibro other conditions do affect badly phycalogically, bound do due to affect on lifestyle, more so for anyone who,s not much support, your also worrying about finances, and that is very real, l read others sick with worry over if they can get pip dla knowing theyre not fit enough to work, and also knowing with cynicism and cut backs it wont be automatic they get it, that just adds to anxiety already there, but try not to worry about it till it gets nearer end of sick not, when youll be seeing gp again, but are there any support groups in your area, c.a.b, cfs, mind, or even church groups for support. Forty isnt that old, you do have time for medical research to find a cure, so yuo can get your health back in time, dont give up on yourself or your dreams and hopes, Your kids are growing up, presumably, maybe in future theyll be able to support, and help you, or the help might come from elsewhere.  l,d cut and paste your post print a copy and let the gp see it, or any others who might  help, let them see your despair,  not in a month but sooner, Dont give up hope, things can get better, you cant see it now, but it happens.  l really hope you find the strength and hope to deal with it.  Best wishesx

Hi Sarah, am really sorry but never read your post last night as was really tired or would have replied right away. Am not fully awake yet . Will send you     PM later with details of website you might find helpful. You are not alone. x

Hi Elaine,  Ditto the tiredness, lve felt knacked the last few days, not even been on mbs much, too much sleeping sorry to say. But saw Sarah,s post and had to reply due to how desperate she sounded, in fact because it was hidden in midst of this thread and not easily seen, l pasted it onto new thread, so she might get more responses to support, l knew you,d answer when you could, to support her.  Weve had a lot of rain last couple of days, very grey out, maybe adds to the tiredness, even the dogs sleeping more than me, and l,m sleeping more than enough.   Guess your recovering from your weekend away, it happens. lve not been out for two days, will try to motivate tomorrow, script to pick up,  saw dr for the good it does, but at least a pleasant one,   l, didnt even realise it was bank holiday till heard on tv today, they soon roll around. think its forecast for better weather over weekend, Hope Brody,s ok, and yourself. take care lynx

 

Hi Lynne, sorry you've not been good. Think the bad weather does make you feel worse. It's been raining here today most of day and freezing cold - it's like winter's come back again. Have been lying on settee most of day with blanket on me and heating on, watched a bit TV and fell asleep. Had lovely run in car yesterday with my husband who's off this week but really paying for it today. Knew I wouldn't be good but feel worse than I thought - feel like someone's beaten me up and all energy totally drained from me. Will just have to have another rest day tomorrow and see how I feel. Brodie is not good either. My husband took him out front and I watched from window and felt really sorry for him - he was really struggling walking, the cold and damp don't agree with him at all. Hopefully we will both have a better day tomorrow!! 

hi elaine, Could be the damp and allergens aggrevate, l also had that hit by a bus feeling and felt cold, heating put on, but tonight feel stuffy and warm, weird weather, seems to warm up more at night, ive slept more the last two days, tired from waking and battling not to go back to sleep, manage it for an hour or two, seem to fall asleep watching judge judy, which l like, but wake up and its finished.  hope you enjoyed your trip out in the car, something l miss, if l was anything like we,d set off, local, countryside, coast, just a change, does you good, a rare event now. l  saw Sarahs post to you, felt bad for her, weve all been there, hope she,s feeling a bit better.  l,m really sorry for Brodie, you do feel for them, l have when mine have got older and its affects. You can tell yourself theyre old and had a good life with you, should make it easier but it doesnt, part of your family. But they can be creaking gates for quite a long time, like us l guess, lve a cat at l6yrs of age, lve had her dying off for the last 2yrs, but she keeps rallying and still troughs her food, can still stick her claws in as well, sometimes l lift her up when she wants to get to a surface.  l,m sure theyll feel better with some sunshine, as we do, well l think it is forecast for a brighter day tomorrow and weekend, hoping.  Take care lynne

Hi Lynne, hope you've had a better day. I've felt slightly better today but still very tired though I managed to stay awake all day which was encouraging. Brodie seems a bit better today too. You sound like you've had a bit of an animal sanctuary over the years with all your stray dogs and cat. My mum ended up with a lot of other people's animals over the years - at one point she had a dog, 2 Guinea pigs, 2 budgies and a cockatiel. Was like staying in a zoo! I love animals though. I used to have a Sat job in pet shop when at school (long time ago!) and really loved it. Used to play with puppies and kittens. Had snakes in at one point and I even held one though don't think I could do it now! Damp and cloudy here today. Marathon with 16000 people running past my house all day on Sun (no I'm not joking unfortunately) so no quiet weekend for me. Hope you enjoy your weekend and get some better weather!!

HI Elaine, Glad youve felt a bit better, it helps, keeps you going. l woke up with usual hell feeling, like climbing a small mountain every morning, doent seem to make a difference whether l get 3-4hrs sleep, or 6-7hrs, same feeling in mornings, sometimes wonder if l were able to stay awake all night if l,d feel better for it.  Anyway l did come round slowly, and did manage a tidy up, who,d have thought a half hour tidy up would be a big deal, at least its doing something and looks better for it, l even managed half hour hedge cutting, just a bit and slowly but did it, left shaky after it. l sort of recall you mentioning stomach probs, and know these conditions can affect all systems, but last year l started with daily nausea, quite severe couldnt eat with it, moving made it worse, got bloated discomfort also, went on months, that is a very miserable feeling, anyway finally scope showed bit of gastritus put on omprazole, which they actually sell at chemist as nexium, and loads on them, all those months of miserable nausea, gps again, as if they couldnt have tried them at start, as they did settle it 90percent, but also changed diet to small plain meals, no processed, no tinned, off lactose, basically just pots, pasta, rice, any veg, bit of chicken or fish, but can eat fries but bake everything in hallogen, today was the l0percent when it comes back, maybe something l ate, maybe lettuce, it happens, so added to it, but did go to supermarket as had to pick up script on way, by taxi. So not too bad now. My home as always been like a zoo, not as much now due to age and health, still got my little dog, and 2 cats, fish, o l also give the dog a bath today, quickie, ruthless one, soapy water sponged on, then swill off with clean water, she rollls on her back and gets dirty and smelly, rolls on whatever,  The dog is hard work and l,m not fit enough really, but she was here before it got bad, and attached,plus she motivates me, funny naughty little dog. Glad brodie as picked up a bit, he,ll wonder whats going on when runners go by, hope he doesnt bark at passers by, be non stop.  but l guess it will take an hour or so from the first to the last to pass by, just one huge crowd in an hour. l think its forecast for reasonable day, as is saturday, should be after all the rain, youll be hoping it rains on sunday, but theyll still run, How odd lookingout your window and seeing masses passing,  Well have a nice weekend, take care lynne

Hi Lynne, hope you are having decent weekend. Went to supermarket this morning and rested later. I had stomach problems for years, loads of different tablets, endoscopy,etc and eventually they discovered it was due to a bug called helicobacter pylori. Have you been tested for this? Took course of anacids and antibiotics and was much better. Still need to watch my diet like you, mostly have plain things. Eat lots of veg but some fruit doesn't agree with me. Am allergic to oranges and kiwi fruits, pineapples and plums not great with me either. I find it easier to digest cooked vegetables, raw things like salad give me indigestion. Peppers didn't used to agree with me but saw on TV programme that the skins are hard to digest so now take the skins off before I cook them and am fine with them now. Pepper added to things doesn't agree with me either and is in most ready meals, etc so have to cook my own things most of time. Last time I had bad flare up was trying pumpkin seeds trying to be healthy - had awful pains in stomach and nasea. I find yakult drinks help too. Marathon tomorrow involves 16000 people running past my house and back again for about 5 hours. Roads shut everwhere, loads of people and noise. Am looking out my window at tents, barriers and portable toilets now. Don't mind seeing the proper athletes at beginning but it goes on for hours. Think the weather is meant to be better tomorrow so if it's nice can sit out back so can't see them when am getting fed up of it but will still hear noise. Last year there was band playing steel drums playing same tunes over and over again really loudly - drove me nuts. Maybe they think if it's a really irritating noise people will run faster to get away from them! Hope you enjoy the rest of your weekend.

Hi ELAINE

​Sorry to say my bank holiday weekend hasnt been rivetting, weathers been decent enough, but not really been anywhere.  plus  my nausea kicked off last few days, on and off, worse today, persistent, then its what have l eat thats aggrevated, please let it settle down, its miserable to feel nausea, mines worse on moving about it, adds to it, as if the rest isnt restrictive enough, praying it settles overnight, so no appetite today, l think they tested for pylori,ive read about it, what a shame its left you with problems after, but many things seem to.leave after affects, my health probs started years ago with csection sterilisation, never as fit after. My computer got worse, unuseable, sent  mad trying to get it right, so did go into town today, just to argos, walking slowly to keep nausea not worsening, bought a net book, using now, struggling, smaller keyboard and windows l0, anything new is a major struggle, not the patience,but getting tthere.   Sunday the best day, in this area, so guess marathon was busy, lol at steel drums, smalll doses of it ok, but l guess it going on hours a bit much.   Could beworse, could be rapping,  ear plugs out, i guess your back with your own company tomorrow, seem quieter all round.  Well take care lynne

 

Hi Lynne, sorry you've not had a great weekend. Mine not good either. Supermarket on Sat and noisy marathon on Sun. Really couldn't stand noise, went for walk different route and struggled getting back to house. Totally shattered. Today have really bad toothache so having to go to dentist tomorrow. Hate dentists - have phobia about them. Not sure if he'll do anything tomorrow or will just have a look and I'll have to go back as last minute appontment. Am dreading it. My husband was off today too but is back to work tomorrow. He has pulled something in his back so has been hobbling about like me though seems to be easing a bit now. He was going to help me with a bit housework before going back to work but hasn't been able to so house like a tip now. Brodie has not been very good - he is not eating his dinner though still eats biscuits. He has sensitive stomach so am limited as to what I can feed him. He wouldn't eat anything this morning so couldn't give him painkillers so he's been terrible all day. Quite upset earlier as if he doesn't eat or get painkillers we can't keep him going. Had tin of dog food in cupboard he used to get so that tried that tonight and he ate it but don't know how his stomach will be. Found out at weekend that dog nearby about the same age as him had to be put to sleep last weekend which upset me. Feel drained with stress and worry. Not a good week so far. Really hope you are getting on better than me and get some nice weather to relax in. 

Poor brodie, lve an old cat and its digestion is funny, and can throw up, its aproblem, hope he improves, it is hard seeing it happen.  lve felt shattered today, not bad weather though stormy and heavy atmosphere later in the day, probably added to tiredness, dropped  off twice today, woke groggy,, rang up and arranged for gardener, given in to being able to do it all myself, have to accept it, still doing bits of jobs, did this aft, knackered whilst doing it, how tomorrow will be who knows,  but not going out at all, l,ll watch gardener, or probably not, as l,d be interfering, as l can. we like things our own way, but cant always be.   Did go into supermarket, went onto auto pilot,  quickie, though not in pace, l seem to do everything in slow motion, certainly teaches you patience, and l havrnt a lot of that.  Be a shock for you husband going back to work, hope his back ok, and you getyour  toothache sorted, hope you have a quiet day of r and r tomorrow and your no longer hearing steel drums in your head. Well into june, they say it will be aflaming one,believe it when l feel it, take care, big hug for brodie,

Hi Lynne, unfortunately yesterday was worse than I thought. One of the worst days of my life. Didn't make it to dentist. Brodie collapsed and died in house before vet could come out. Am absolutely heartbroken. Still can't believe he's gone. Can't stop crying. Sorry to give you bad news.

hi elaine, really sorry and sad, same happened with my old dog a few month ago, he l4 and had been failing a bit for a while, saw vet got a jab and took him home, and wo days later he just collaped, guess heart attack, its horrible, l stroked him for a minute and he went, devastating.  l think you must have had subconcious idea it was coming by your post the other day.  but still terrible shock and grief, l was same, teary often, try to tell yourself  theyve lived to old age and had a  good life, but it only helps so much, your still grieving, and your husband also. lve felt really rough today, fatigue aches and pains so not been on net or done anything at all much, just switched on 20min ago, and saw your post.  Really sorry for you both and hope you feel a bit better soon take care lynne

So many symptoms as my daughter, been to no less than 30 doctors. Syncope, severe GI, endo, hematology finally find I tested positive for GAD65 and encetholopathy auto immune. 

My daughter is 27 and on disability from all of the prob caused one event or a series of events. It sucks! You are not alone!