Which is the worst time of the day for you

I wonder Beverley did you have sugar in your chocolate? Sugar can make you boom and bust. Just a thought.

Hi Beverley, Hope you feel better as day goes on, hoping l do also, yesterday for me not good, more general aches and pains, but l fell on Thursday which had been a reasonable day, so doing a job, actually carrying a bowl of water to swill doorstep, oops tripped, on the floor swimming in water, charming, l had managed to save myself so didnt feel too bad, maybe delayed affect, but had bad night Sat, 2-3hrs sleep,l really dont know if these new pains in my feet along with cramps is fibro, whatever, feels and sounds like murder, oo ah, in and out of bed, but its been suprisingly warm overnight, quite stuffy, but just felt wrecked Sunday, slept on and off till near noon, hate doing that,  Did go out as essential yesterday, just asda, saw son, so went for tea and chat, that was good, l think my son judges how well or not l  am by when l stop being opinionated, putting the world or uk to right, one of us and innie, one an outie, lol, but with respect for each others opinions, l dislike the drift towards disrespect insult and abuse for differing opinions in present times.  Looks nice day out, so hoping to pick up a bit today.  On bad days l dont know what l worrry about most, whether it wont get better, must stop looking on fb and seeing old friends in exotic or even in italy wherever wonderful, or the worry it will get worse, as it feels on bad days. l think Georgia one of the more seriously affected, l,d like Georgia to tell us how it gets to that stage, if very slowly but surely, little at a time, or sudden dips after being ill,  or overdoing it, if aware as its happening, or after weeks months. Hope you can talk about it Georgia. Bought myself a little rechargeable hand shear, light, cant do the heavy  hedge ones now, itching to get out and use my hand shears on rapidly growing hedge, bit at a time, or pay someone.   Well rambled on long enough, going for drink, tea, hope to improve as day goes on, as l hope you do and all. take care lynne

Hi Georgia,

Yep, I did have suger added but, have been doing more things this last week and have done alot of travelling so, this was the cherry on the cake I guess ! Today is an in day for me with the lightest of activities now. Hope your day is going ok.

Beverley

Hi Lynne,

I know getting worse is a worry I share with you. I know it's difficult to know what will be a trigger and thus am trying to be gentle by having the rest days. I feel I am generally worse than I was two years ago but, presently, through managing the rest days, I'm less slurrey and stumbling when I go out so-that's a bonus ! I did take the wheelchair to the new forest though, just in case I wasn't able to participate through exhaustion. I felt at least then I'd be able to join in mentally and let the physical rest. though ended up not using it, I feel that this started the domino effect from the busy weekend I had then to my day today. Everything is too bright and too loud and I'll be glad to have tea and bed again. Wish i could sleep for a week !!! 

be gentle to you and  I know how hard it is not to do things . Luckily I'm restricted from liifting things like a bowl of water, take heed of the fall... these things are sent to try us! 

Beverley

I was extremely healthy and happy when I was struck down suddenly with ME, to the extent that I've been virtually bed bound for 10 years.  At age 40 everyone told me I looked 20 years younger, that's how healthy I was!

A few things come to mind that may have contributed to my ME:

I lived in a rented Victorian house that had mould and I'd say sick building syndrome. (Environment)

An ex boyfriend stalked and frightened me relentlessly for around a year and made my life hell. Life would've been perfect if it wasn't for him. (Stress)

I went camping and woke up in my tent feeling extremely ill with the flu and was driven home. I had it for around a month, couldn't even make it to the doctor (viral)

Is this what you wanted to know Lynne?

Good I'm glad you're resting up Beverley! 

I'm having an average day I'd say. On a bad day I wouldn't be in here, I'd be sleeping and watching programmes on my laptop, which is on a table that swings over the bed (useful thing!).

Hi Georgia,

I don't have a laptop yet and type on my little phone when not good. Very rarely Can I sit at my computer for too long. I'm hoping to rest again tomorrow. such a balancing act resting and doing things.

Hope the rest if your day has gone well.

Beverley

I know what you mean; I don't think I'd be able to sit at a computer.

Pacing is so hard isn't it! When I have a bit of energy I want to use it and even when I don't have much I push myself, like doing too much reading. I think overdoing thing's is common to most of us unfortunately.

My days going well thanks. Earlier the heat was getting to me a bit; I can't tolerate it at all, but the sun's moved to the front now and I can feel a cool breeze from the open window by my bed. Lovely! 

I Have luckily not had too much heat here and there' s been a good breeze all day. Rain this evening. I've still managed to do too much! Not by 'normal' terms but, we have this silly condition that throws things doesn't it : D

Glad your day has gone ok. Hopefully tomorrow too

Beverley

Yes hopefully! 

: )

Not been on computer and attempted to catch up on things. Mind really not here today. Just noticing comments about hot chocolate and sugar and making me think about how much weight I've put on. I got some summer clothes out and nothing fits me any more. Tried a pair of cut off trousers on the the button popped off!! Weighed myself and realised I seem to have put about a stone over the winter. Haven't changed my diet but have been less active. I eat healthy most of the time but know I've been eating more chocolate to cheer myself up. Still feel exhausted after my train journey at weekend and my husband is off this week and was hoping to get out somewhere but maybe will manage it later in week. Feeling frustrated, fed up and fat today!!

Not really what l expected, thinking your health problems were very gradual over many years, as seems to happen with many, but yours ws from healthy normal to acute , so have symptoms been at the same level for many years, l know youve some days better than others but does it vary month to month. Also wondering about if your circulation is affected, do you do exercises that help with it, l get cramps more so when in bed. l think l, like many, on bad days think oh no its getting worse, then on reasonable days, think its just the same, thinking you experienced a very gradual worsening of symptoms. All a mystery, l do think envoiramental factors cause or add to it, would be interesting to know how it varies from country to country, making alllowances that underdeveloped countries have even less chance than us of getting diagnoses. see if l can check it out.  My computer went crazy this morning, zoming in and out, pop ups, drives me mad, used to wonder about my sons when at home getting angry shouting and cursing at conputers, now l know. Half and hour messing and switched off, l switched off soon after, knacked, laid on sofa slept for an hour, it was blue skies sunny when l drifed off, woke to grey skies and rainy, as its been since, for this mid area at least, and usual wake up, groggy snuffly, hence late reply.  Just read one of yours, l cant pace, any energy used up, also love a warm day with a cool breeze, even when in bed, cant stand being stuffy or covered head to toe, arms free and a  nice breeze drifting in, same outside if warm sat under shady breezy trees. Well hope youve a good day tomorrow also. take care lyn

Hi Elaine,

Sounds like we're in the same boat re the weight and being less active. How was your time away? I'm still recovering, I think!

I'm not happy with my clothes not fitting either. Maybe this winter was just more restricting for a few of us this year, not being able to get out etc. I'm eating more salad to try to get back to where I was. Chocolate is my vice! Its not having energy to exercise that's a big problem.

Rest well and hope you do get somewhere nice later in the week.

Best wishes

Beverley

Hi Elaine, Glad you managed your journey without too many after severe affects, hopefully some r and r  should help over next few days, at least you went for it and had different experience, l look in on fbook once a week or so, see pics old friends have posted, from all the places l,d love to be, one good old freind doing Italy, touring, Florence, Sorrento, etc, oh how envious, lve never been interested in baking on the beach or pool side or karaoke, but so many interesting places l,d like to visit, Italy one of them, my sons have been to Egypt, l,d love to see the sites.theyve also been to  Florida, Oz, live in hope, a miracle, even l0mile into the city too much. l,m also a couple of stone oweight, with lack of activety its bound to happen unless starving yourself, lve been off my meals a bit lst few days, it happens go on and off food, but like you choc tempts, love toblerone. l and most l guess relate to how your feeling, not dreadful, just a bit frustrated and fed up, it happens,we feel better when a bit of energy returns.  l guess Brody was happy to see you, hope he,s doing ok. Weve had rain this afternoon grey skies, my niece in Scarborough rang, she said it ws hot there, think were in the band of rain, but see what tomorrow brings. Well, hope you feel more energised as the week goes along, take care lynne

I was OK on journey there and enjoyed the visit but was really struggling coming back. Train was late and noisy people on train - don't cope well with noise when I'm tired. Then second train was at the opposite side of railway station and my legs felt like they had weights attached to them by that point so took me ages to walk over. Got home, too tired to eat anything so just went to bed. Glad I did it though - at least it something different. I used to exercise a lot before I was ill and never had a problem with my weight but when I first got ill was in bed most of the time for about a year and put on a lot of weight, then had stomach problems and lost a lot, finally got that sorted and put it on again, went through really stressful time and lost weight again, then put it on again. I have fat clothes and thin clothes but now even my fat clothes are too tight. It's so frustrating as I can't exercise to lose it but if I don't eat enough I have no energy! Glad you are recovering after your break. Hopefully your energy levels will pick up again soon.

Hi Lynne, still recovering from journey. Was really hot here today so am drained with heat which is not helping. Meant to be hot tomorrow too so will try and find a shady bit to sit. Brodie is struggling with heat now so have been spraying him with water to try and cool him down. There are a lot of places I'd like to have visited too but know it will not happen. I'm not keen on just lying in sun on holiday either - used to enjoy going places where there were things to do and see. I have a friend who is away on a Mediterean cruise just now. Will be nice seeing her photos when she comes home but will also make me sad that I'll never be able to do anything like that. Have another friend who is going to Greece in a couple of weeks. I'm going no-where, a trip to the supermarket is an outing for me usually! I've always loved chocolate of any kind, always cheers me up but you've got to have some pleasure in life - will just need to try and cut back a bit. Having a total rest day tomorrow and will see how I feel after that. Hope you have better weather tomorrow!

Hi Elaine,

My problem is-I don't have any fat clothes! Most things are too tight. I actually bought a cord dress at Christmas time that looked ok, now I'm Billy bunter in it!

The lack of exercise kills me. I loved walking but now feel my legs are wasting away.

Public transport is hard work! The noise, temperature and smells are often too much for me when extreme. The bumpy ride and harsh braking on buses can be too much some days.

Sunshine here through my curtains today. Hop weather good with you.

Beverley

Gorgeous day today Lynn, not too hot, sunny, lovely breeze, just how I like it!

Yes it was sudden and shocking when I got ME but bear in mind that athletes and children get it too for no apparent reason. Baffling! 

I'm still virtually bed ridden and it's been like that all the way through but I've been improving some of my symptoms. I had mercury poisoning from my fillings and I had them out in Harley Street. I suffer from Candida but herbs and diet have helped my digestive system improve from that somewhat. I hardly ever get dirrhoea now; used to be most of the time!

It's not such a struggle to get out of bed to get food etc as it used to be. I'm hopeful. I'm taking courses and learning about complementary therapies and reading up on them.

I think my circulation is affected as I get sort of unpleasant tinging in my legs sometimes, I've got it in my right leg now, and I get restless leg syndrome.

It doesn't really vary month to month but over time I'm feeling better than I was, especially with that homeopathic remedy!

I can manage walking some days but not very fast and it took me years to build up to it and a bit gentle yoga occasionally. Used to walk fo rmiles, go cycling, jogging and do aerobics. Exercise used to give me a boost but now it just makes me tired and sore - so frustrating! One good thing about winter is you can cover yourself up and no-one can see what you look like - in summer the flabby bits are more noticeable. I'm about a stone and a half heavier than I used to be though am wondering if it's partly my age now as it's like all the fat is round my stomach now but no energy to do sit ups so will just have to buy bigger clothes! Although hate shopping for clothes now as I find it exhausting trying things on. I tend to go places in the morning when places are quieter as can't cope crowds and noise. Also can't cope with strong perfume smells. Cloudy here just now but sun trying to come out. Husband is clearing out shed in grumpy mood so will keep out his way until he's finished! Might try and go somewhere tomorrow in car - will see how I feel. Hope you have a good day.

Just curious Georgia,

Were you eve tested for Lymes desease as you said you were camping when you woke feeling dreadful.

Sunny with breeze here so not too hot here either-which Is good for me : )

Beverley

Hi Elaine,

I'd love to be able to do some exercise without the payback. I still hope to get Better from this and be able to walk again like I used to.

Had squares of rum and raisin chocolate for breakfast and early lunch of salad and frittata. Am hoping that I can make a decent meal at teatime. When i lost weight before, I felt proud of myself but was swimming and doing yoga and Pilates. Only 15 mins swimming. Still, I could do it then. Hope to try It again.

I don't like trying clothes much now either, I get overwhelmed when i can't get them back off!

Hope you manage get somewhere nice tomorrow if you do get out.

Beverley

I haven't been tested for Lyme's disease. I've heard a bit about it; it's a bite from a tick so I hear. It is unusual the way I went to sleep feeling as fit as a fiddle and woke up feeing like I'd been run over by a truck! The flu usually comes on a bit more gradually than that and does't last for so long.

I can't manage to get to my doctor; I'm in a village and he's in town but he's started sending a nurse to take blood regularly so I'll ask for the test next time.

Thanks for reminding me about it! 

Curious Elaine, do you eat wheat and gluten?

The reason I ask is that I'm thin but when I ate them my stomach would get bloated, and since I've cut them out it never does. My stomach's flat and I think I've even lost a bit of weight but not too much.

Hi Georgia,

That's a shame doctor is a trek to town at least nurse comes out to you, I guess. With Lymes, I didn't realize that it was in the UK until recently and such similar symptoms to cfs/me.

Glad i reminded you, I hate the memory stuff with this condition! I never had such a blank mind before. Things seem to disappear so easily, then it's months later I think "oh!"

Hope you can enjoy this cooler day. I thought about sitting on my step earlier, that may be my challenge for the day : )

Beverley

Elaine if I had squares of rum and raisin chocolate for breakfast I'd be useless for the rest of the day, if not 2 or 3 days! All that refined sugar in the chocolate. I can handle raisins and banana  in porridge though, my body likes that.

Your breakfast would give me a bad Candida outbreak too. How can you handle it and I couldn't?

Sorry I meant Beverley! Oops 

Firstly I have a beautiful garden (well if you could call an over-grown jungle beautiful) Lol but I rarely get out there so I understand it being a challenge! I do get a gardener in once or twice a year but they're so expensive.

I have such a good doctor; took me changing several doctors and surgerys to find him. We have phone appointments because he understands the extent of my debiility.

Blank mind, oh heck! Each time I read something about Lymes disease I think I should find out; I even write it on a piece of paper sometimes but I lose the paper, or just forget about it.

If you could I'd be really grateful if you'd not let me forget this time.

In fact I'm going to ring the surgery now and ask the receptionist to make a note of it for the next time the nurse comes. Do doctors test for it or do we have to get a private test and pay?

Yes, a lot of it's about ruling things out isn't it. Phoned and the receptionist is going to send a message to the doc to test me for Lymes.

I'm very grateful to you for giving me the push to finally do it! 

Hi Georgia,

It was me with the chocolate : D I only eat dark chocolate and prefer the bitter 85% stuff when I can get it but, this stuff is yummy!

I don't eat diary, wheat, fish or meat and don't eat alot of sugar. Nor caffeine. I look like an egg on legs at present! I do drink alcohol though and at the time feel normal again briefly.

The balancing act to gain energy even just brain clarity, can be hard. food can help but sometimes, I truly give up!

I think the whole thing about what each one of us can tolerate is interesting. Chemicals floor me, incense, som essential oils

No worries,

Darn phone sent my message before i finished! Anywho....think the condition just makes us more sensitive to things on an individual basis.

Beverley

Very interesting Beverley!

Chemicals floor me too, I've ran outside a shop in town and doubled up feeling like I'm going to collapse from standing in a queu breathing in people's perfumes. But I love good quality essential oils, although cheaper ones have give me a bad reaction.

For an occassional treat I like Green n Blacks dark chocholate but a bar will last me around 2 weeks. Sometimes I have the ginger version.

Here's where we're different again: I couldn't survive without meat and fish. But I can't eat beef. I'm naturally thin and prone to anemia and I'm sensitive to many foods so I need as much protein and good fats as I can get.

My therapist tells me that our brains need good fats to thrive. Sugar is the far worse culprit in making people sick or sicker.

 

Hi Georgia,

Glad I've helped with reminding you about the Lymes test and that they're going to test you next time. Good result! If I remember things like that now, I tick it off in my diary : ) I feel quite proud sometimes when I achieve such things.

I wish I had a garden, just have pots but, I live near the canal and river so can always go there for some nature. Am sat on step now, sun on my legs. And a rooibos tea to hand. Such a good breeze here.

Re meat, not eaten it for over 30 years now. Never liked it as a child, the wheat and dairy, I had to give up 20 years ago as was giving me an awful rash. I believe its the protein in the two, not the lactose or gluten that affects me.

What a beautiful day out here! Wish I could manage to get to the canal today but, I need any energy for tomorrow when I have to go out.

Darn silly cfs/me! So restrictive. I'm taking heed and although I feel a craving for the chocolate with my cup of tea, I'm not going to have any and see how I feel later.

Seed heads flying everywhere here! We used to call them fairies : )

Beverley

Hi Bev, I tried a remedial Pilates class once and was struggling even doing the warm up. Instructor kept going on about sucking in stomach and made me feel sick and dizzy and took me weeks to recover - never again! Seem to find yoga easier but probably not so good for toning stomach. Went out a little while this afternoon and bought a tunic style top I liked which will cover my wobbly stomach so that cheered me up a bit. Didn't have energy to try any trousers on but it's a start. Decided I'm doing no housework this week - will pretend I'm on holiday and use energy for other things. If I sleep OK am definitely going to try going for a run in the car tomorrow. Even if it's raining will still go. Bought an apple turnover in bakers when out as a treat, really enjoyed it but tired now as sugar rush wearing off. Always end up eating more junk when husband on holiday! Am going to make sweet and sour chicken with brown rice for tea. Definitely going to try and cut back sugar next week!

Hi Georgia, I do eat wheat and gluten but was on an elimination diet at one point in the past when I cut them out but it didn't make any difference to the way I felt or my stomach. One thing I know that makes me bloated is salt which I've really cut back on. I generally eat a good diet, some fruits (some don't agree with me), loads of veg, chicken, (don't eat red meat), whole meal  bread and pasta but I know I have too much sugar in my diet. Think I drink too much fruit juice too as often have some for a quick boost before I do something and always have my chocolate fix at night when watching TV. Have another bad habit of carrying a mini chocolate snack with me when I'm out for a quick boost if I start to feel exhausted - need to think of better option than that!

Funnily enough cutting out wheat and gluten didn't seem to make a difference to me. Over the years I've tried different things and I tried cutting out wheat and gluten a few times before without noticing anything.

I put it down to that I was just too ill back then for anything much to make a drastic difference. It's taken years of hard work to get where I am, as in cutting out wheat and gluten makes a huge difference now. 

Splutter! You've really made me laugh with 'silly cfs/me. It's really tickled my funny bone! I could say 'You silly thing, go away! Lol

My doc phoned and said that it's unlikely to be Lymes disease because the symptoms don't come on so suddenly and 85% of people who get it have an itching, red rash, which I didn't have. He also said that he's had it! So I think he knows.

Right then, that's something eliminated; always a good thing to do.

Thank you again! 

Hi Elaine,

Sounds good that you managed to get out to do a little clothes shopping today. I''ve taken it easier today as I need to go out tomorrow. Hope you manage your trip out tomorrow too.

Good luck with cutting back on the sugar, I'm going to try with chocolate.

Beverley

Going out, and clothes shopping, Wow I barely remember what that's like.

I think you lovely ladies should realise that you don't have ME that bad, which means that you can probably get better with the right diet, herbs and things.

I hear that you're feeling horrible but when I read that one of you boiled a kettle to wash the outside step I went into meltdown!

I'm on my own and my home is beyond dispicable and my personal hygeine is virtually non existent. The lady from the local ME group, who's my therapist now said I have the worst case of it she's ever seen.

So, me hearties be happy and grateful that you can go out and do things and that you will get better if you decide to! So will I by the way; it just takes a while. 

I've had M.E. for 21 years and have tried loads of things over the years to help myself. Was bedridden for a year to start with like you are now but very slowly improved to where I am now but know I will not get any better than this unless someone invents a cure. I've just learnt to live with it and manage the best I can - I am just thankful for the good days and accept the bad. I wouldn't give up hope that you won't improve through time - you just need to find out what works best for you.

Unfortunately with M.E. you can't just decide to get better. Some people improve and some don't, everyone is different and what works for one person might not for another. They don't even really know what M.E. actually is yet so there is nothing guaranteed to cure you but it is possible to improve.

Hi Georgia,

The nhs states there's three stages of cfs/me. Mild, moderate and severe. I'm classed as moderate to severe by the cfs/me service I attend, you're obviously at the severe end of severe. I can't work and often barely function beyond gibbering wreck. I have a cleaner because I can't do that now and would love to kick the cfs/me in to touch! Our goals are all the same I feel to that end. My plan this year is to get some personal development out of the way. the condition fluctuates anyway so, that's this year and gradually build up to doing some yoga.

It sounds that you were hit so incredibly hard at the beginning by this and have managed it and are able to do some things now that were difficult in the earlier stages. I feel I've got less able and am trying to remedy this with more resting.

I've managed with no more chocolate today and although I still feel that permanent feeling of unrefreshed sleep, I'm not feeling as bad as I was Sunday or as I did last weekend when I felt hit by a truck that was still hurtling along! I long for a day where I feel fine again. In the early days, I did sometimes have them then I'd use all the energy doing something I didn't need to!

Such a strange condition and very individual. My friend who also has it, often struggles for breath and has excruciating pain across their chest. I don't get that, but I do get severe head pains that they don't.

If you had a day ME free what would you do with it?

Beverley

I was classed as severe at the beginning and am now moderate. I also struggle with cleaning, only manage bits and my husband does the rest. If I was on my own I'd need a cleaner too. Well done for managing without chocolate - don't think I've ever gone a day without it!

I am at the severe end of severe but the ME consultant put me in the moderate to severe group so I haven't had as much help as I should. I'm alone dealing with it and I'm grateful because it's making me as strong as h*ll.

In other words I'm finding my own ways to make things better, standing on my own two feel metaphorically if not actually and I won't stop until I can go running again!

Hi Elaine,

Thankyou, Yes, I'm mildly impressed with my achievement : ) cant say I'm going to stay choc free tomorrow but, it was good to challenge myself and I need to definitely cut down. I also had Brown rice today and just need to think a bit more about how I'm eating.

Hope tomorrow goes well for you.

Beverley

Beverley sugar makes brain fog worse! Please don't tell me you enjoy brain fog?

Hi Georgia,

I'm hoping that your fighting spirit does indeed get you through this and you can run again. Its such an odd journey we are on and as you stated earlier in the post, it seems your mind and body are now more ready to accept the challenge? Now changing to wheat free is helpful you mentioned, whereas before it wasn't. maybe its if/when are bodies and minds are ready.

Beverley

No Georgia,

I don't like brain fog but, I sure do like chocolate : D

It's taken me a long time to realise that sugars make my brain fog worse. I love fruit but I have to limit it a bit and eat it with plain yoghurt.

I was putting agave nectar in my big daily tube of yoghurt but I had to stop that. Now I squeeze a fresh lemon in it instead, love the zingy taste and lemons alkalise the body. Do you like lemons?

I heard of a mother and daughter who had a similar illness to ours and they claim that alkalising with lemons got them better. They do help me.

Hi Georgia,

I do like lemons and limes but am allergic to oranges! No idea why.

I'm more a savoury person apart from the chocolate. And like lime juice on salad. One thing that I still have issues with is chillies. I'm ok if I have them once maybe twice a week but more than that and I'm left itching, I read ages ago that this kind of thing happens when you are intolerant to certain foods, that other things can cause reactions too.

A voyage of discovery food wise

Beverley