How to Get Through The Tough Times The Old Style Way.

GreyQueen

mardatha wrote: »

I wonder why so many people are getting ME. I asked my doc if she thinks it might be something to do with pollution in air or food etc and she said who knows. Two new reports out on ME, one UK one says it can be treated by "exercise and counselling"...( aye like hell it can !!! I hope they all get it and then see what they say !) The second US one says they have isolated certain proteins (or something lol) in the spinal fluid of people with ME and MS which are not present in normal healthy people. So fingers always crossed for a breakthrough one day.
I just live around it, if I'm having a bad day I sit on the couch and surf or read or nap,. and I dont feel guilty at all. When I feel better I make up for it.
We have gales and sunny spells, I wish I had some washing to do so I could hang it out but its all done. The RV is being a real pain in the neck going on and on about the cost of petrol and living in general. Moaning doesnt help, I wish he'd shut up LOL

I've had ME since 1988, Mardatha, got glandular fever and never recovered properly. Have heard so much BS over the years that I could strangle people.* Spoke to a counsultant neurologist once and she expressed her opinion that ME/CFS is not ONE illness but MANY that are poorly understood at present, which might explain why some people respond to some therapies and others don't. I, too, have a "mystery virus" in my blood, as identified by a top London teaching hospital, initially gave a false-positive for Lyme Disease but is not that and they don't know what it is. Who knows, but I wonder if we ME-ers are like the canaries in the coal mine, giving early warning of environmental pollution?

* Typed that in a tearing hurry and later re-read it and it didn't come across quite as I intended. I didn't mean to strangle (metaphorically) anyone who would offer useful suggestions here, but was thinking of a bl**dy useless tool of a GP and various pundits and quacks who take advantage of the desperation to get well which I and so many others have felt. Have wasted money I couldn't spare and have felt taken advantage of....Hope I didn't give the wrong impression.

happierdaystocome

Thanks Maya for the link I will have a read this evening.

Kittiei think your right Im just going to have to look at what are the important things for me. As a lot of my OSing isnt about saving money (although when I was a single parent this was the main focus) but the pleasure and sense of achievement I get from it.

catznine wrote: »

So sorry you have me/cfs (((hugs))) but managing the symptoms is possible. I find it hard to get the balance sometimes but am getting better with experience. Pacing is what really helps, just do a little every now and then and rest inbetween! For instance if I want to make a veg soup, I wash and peel a few carrots, go and sit down, get up and wash and peel some potatoes, rest, then the onions and rest, it is frustrating at first but it gets better and you should have a lovely hm soup at the end of the day!

Learning to recognise when you are in danger of overdoing things and resting helps. I get numbness on one side when I have done too much! Don't let it get that bad! I read a lot of info and then do what I can when I am feeling well. Must be much the same with many other illnesses.

Thank you Catzine I know that Ive been ignoring the warning signs and then have found myself unable to move out of bed for days

De1amo sorry to hear about your DH but I hope your remembering to make sometime fro yourself to ensure that you have the energy to offer her the support she needs at this time.

mardatha

I sort of think it is that (pollution). I had glandular fever too, was very ill, got better slowly, then 10 years later I found one day I could hardly get out of bed I was so tired. I am still bloody tired and that was in 2002 :rotfl:
Question for you all - I have no spices, I never use the stuff. What spices should I have ? Ones you use most of ?

LannyLee

Greying_Pilgrim wrote: »

Morning all! Could I just piggy-back on the coat-tails of Squeaky's positive start to the day, by just thanking (again) 7 day wonder for posting the 'food co-operatives operating in the UK' linkie.
Greying

Can some one please re-post the link, as I seem to have mis-placed it!:p

de1amo

My inactivity is legendary!! its my wife that does the 12 hour days and carries the household--i help where i can but due to not speaking the lingo makes me a bit helpless- she enjoys work and feels happiest when she is not allowed to think quietly--so she says!--she tends to cry when she is in the shower for some reason--she internalises everything and not even her best friend and business partner cant get through to her(she is a trained psychologist as well but cant help my wife!!)--they have a silly theory here that highly intelligent people seem to have a high incidence of this type of feeling--stupid as that sounds!

i am still in my pjs-- SD has just got in from school and is dancing in her bedroom--so no chance for me to get to the gym again!--i seem to think that my wife will benefit from getting back into the gym and jangling the endorphins--the doc this morning said my wife has a lot of muscle and shouldnt do any more weights work and should just do cardio---it has always been the opposite in her exercise regime.

i am mouching about the web for a bargain seaside place to buy here--yesterday i saw a 4 bed villa with sea views and 150metres to the beach for about 45000 gbp--it looked too good to be true!--just getting DH to stop dismissing everything i want to buy for a future because she has become fixed on there just being a now!

zarazara

re ME if you take a look at Dr Sarah Myhill web site [Google her] there is some very interesting stuff, also tyroid stuff too.

Greying_Pilgrim

Lannylee - until someone more techically whizzy than me comes along, the link is on post #644 (pg 33 I think) HTH

Greying

dollydaydream07

zarazara wrote: »

re ME if you take a look at Dr Sarah Myhill web site [Google her] there is some very interesting stuff, also tyroid stuff too.

Is she the one who does alot of work with the pernicious anaemia society?
i'm sure i've read about her on there....... but then my b12 jab is due so my memory isn't up to scratch at the minute lol

mrswive

Just wanted to say I'm glad we're back after such a short time - thanks for that. I find this thread really useful.
Where else can you get advice about all aspects of OS living, gardening and health issues, get things off your chest and have a good laugh?

zarazara - I have a thyroid disfunction so will definitely check out Dr Sarah Myhill site - thanks for that too.

lora

GreyQueen wrote: »

I've had ME since 1988. Mardatha, got glandular fever and never recovered properly. Have heard so much BS over the years that I could strangle people. Spoke to a counsultant neurologist once and she expressed her opinion that ME/CFS is not ONE illness but MANY that are poorly understood at present, which might explain why some people respond to some therapies and others don't. I, too, have a "mystery virus" in my blood, as identified by a top London teaching hospital, initially gave a false-positive for Lyme Disease but is not that. Who know, but I wonder if we ME-ers are like the cannaries in the coal mine, givign early warning of environmantal pollution.

About 1988 DH was told he had ME---his whole system seemed to be closing down and he was becoming a zombie(my description). One of our GPs' speciallity was food intolerances. He tested DH and said he was allergic to a number of foods--main ones being potatoes, cane sugar and sunflower oil. He recovered to return to work. DD at age of 11 tested positive for another group of foods--eg red meat, grapes,chicken. Boxing Day was always miserable!! DH's neice had lost sight in one eye amongst things and was also tested posted for food allergies. DD at 27 was told 98% likely she has MS (which is more prevalent in young women born in Scotland even if have only spent short time there). Dgs is autistic at 4. Please do not shoot me down in flames if I make a slight suggestion, that some illnesses are food(or what is done to food) related.