Has the forum got M.E again ??

Well on a more lighter note......

Its half term for me this week and with no kids (only my own 2) I am looking forward to having some ME time!

The sun is shining, the birds are singing the washing ready to be hung in the spring breeze and I still feel like poo :cry:

But hey I am sat here in the sunlounge with the warm sun on me, the kids have made me coffee and I am just looking for recipies so its not so bad after all :D

My hubbie is having to go and collect the new car tommorow becasue the mental strain and excitment may just totally spoil my week and even though I may not be able to drive it just yet I can look at it from the window. My friend has a suzuki jeep and she loves it. She whizzes down to the stables in it and oarks it everywhere! Its not big enough to tow a trailer but she tells everyone its a fancy Range Rover in disguise.

Hey Katie, my neck and upper back is bad too at the moment! Do you think the cold weather plays a factor in it?

Donna

p.s Wolfe I havent forgot about you too. Hope you have not doing wheelies on your 125!!! Hey just a thought can you do wheelies with me n katie in the side car???????? GRAB YOUR SICK BAGS :run:

pps I have to change my user name for this posting becasue it wouldnt let me use donnadoolittle?????

Hi Donna & Katie

Donna youll have to post a pic of your new car when it arrives, i bet you must be so excited, i remember when i got my new car a couple years ago, i got so excited i couldnt sleep and ended up making myself ill, but now i do as much as i can even if i do get ill cause lifes to short to sit there wrapped up in cotton wool, and i agree with Katie, this cold weather doesnt help our symptons, but i do think though that the sunshine does make you feel more alive than the winter does, but then i think theres alot of truth about us all needing sunshine for certain vitamines

Went to hospitol today to see the Ear,Nose,Throat specialist as im constantly congested and my balance isnt great and a few other probs, but after the consultation ive now got to have a MRI scan behind my ear drums next month, so had to have my eyes X-rayed today as ive had metal in them in the past(which was clear) to make sure i had no metal left in them.

Anyway im closing in for the night now so ill catch up soon

Take care

Jay xox

P.S Ive got a Honda CB 600 now so im in the BIG bike club :lol:

P.P.S Katie your post are never boring 8)

Hi Jay, Hi Donna

Wow a Honda CB 600 - how fantastic is that! My only worry is that it can be adapted for a side car! Donna and I had just got ourselves geered up for your last bike. 8) 8) Mind you, now that Donna has gone upmarket with her 4 x 4 she might no longer be interested. :?: :?:

Yea. a picture would be really good - the only pics we seem to get on this site are of grotty wounds and gammy legs or of Dr Spock who seems to pop up everywhere!

Hope you get on alright with your Xrays and scans, Jay. I always feel very congested in my head, with ringing in my ears and feeling very unsteady - it's a really horrible feeling isn't it? It's almost like being on a different planet - to me it's even worse than the pain and tiredness.

Thanks for saying I'm not boring, Jay - that was very sweet of you! :oops:

Take care everyone

Katie xx

I have been out of sorts for a least eight years now i have had numerous blood tests which come back clear.i am tired in my body and in my mind nearly everyday and cannot remember the simplist of things,the worst thing for me is that i cannot get an answer from the doctors and just keep being supplied with antidepressants which work for the depressive symptoms associated but not for the tiredness, nausea and balance issues and brain fog i sometimes feel like i have cotton wool in my head.

I tend to have relapsig periods of illness but remain on edge for when it is going to strike again.I wish i could just be clear about this horrible illness and start to tackle it head on. Does anyone else ever feel like this and have bad depressive symptoms as they are so unsure as to what is happening to their bodies?

Hi Lisa,

Well all i can say is welcome to the M.E club !!

Everyone i know who suffers from your symptons have M.E including me, im amazed though that after 8 years (same as me) you havnt yet being diagnosed, The best advice from me is to get a oppointment with your local M.E group where they'll give you good advice and more importantly tell you if you do or dont have M.E

Jay

Hi Lisa.

My advice is to go and see a different GP and explain your concerns. I was diagnosed with ME last October but thankfully have a wonderful doctor who told me about this site. I have met some wonderful people who like you have concerns about their health and the possibilty of ME.

It sounds simliar to the symptons of ME and as described blood tests normally come back fine which is very frustrating.

Keep in touch with us all and let us know your progress.

Donna x x

Hi Lisa

You are describing symptoms that we know only too well!

I agree with what 'my mates' have said. You really need to find an understanding GP (there are a few around!), who will either make a diagnosis or at least arrange for you to see a specialist. I find women GPs (sorry Jay), tend to be more sympathetic. Eight years is an awfully long time to have suffered without knowing what your illness is.

If you scroll back through the various CFS postings (it does annoy me they won't call it ME!), you will find a very helpful listing of signs and symptoms that Jay posted a while back (thankyou Jay).

You may think Jay, Donna and I mess around a bit on this site! Well, yes we do but it really helps us cope with this awful illness and not feel so isolated.

Let us know how you get on.

Katie

Hi Katie, Donna and readers

I will appologise for being a missery at mo but im so fed up with "not my life or illness" but ppl around me. When i or anyone else contacts a friend or family and they ask "How are you" is it a sentence opener or do they really want to know "How you are"??. Alot of the time i feel when i start to reply i can tell they wished they had never asked. For once i would love for them to phone me up and actuall listen to what im saying, somedays it would be nice to get abit of sympathy of them too, to make me feel emotions again, as i feel so "empty" inside, lifeless, somedays i feel im screaming from the top of my lungs that im here and suffering, but no one is listening (apart from sites like these) but its my family who should be listening to me, (or am i being sellfish) ??.

I do hate to ask for help as ive still got my pride but the amount of hints i drop like, i really struggle to go shopping once a week, its like im on a roller coaster when im there, every noise is duplicated 10 fold and the lights are blinding, but never have i had a offer from someone to help me, theres to many others to list but im sure you can understand where im coming from.

Some ppl i know who get a sniffle and everyones running round after them, which makes me often wonder if anyone actually believes were all ill ??

Hope your all ok and spk soon

Jay xox

Hi there Jay, Donna and everyone else

Oh Jay, I wished I lived nearer to you and then I could come and give you a big cuddle . I know exactly how you feel and anyone else with this horrible illness will understand too. It's just the OTHERS that don't:x , or last least don't wish to understand. When folk ask me how I am I just say 'Yea I'm fine' or 'Still ill' - sometimes I really can't be bothered to talk about it, because as you say, they're not really interested, and invairably go on to talk about their non'-existant health problems.

I know what you mean about shopping - I find it real torture to go into a shop with the lights and the noise (I have to wear dark glasses - sometimes I can't even see what I'm actually buying! Most times I just crash around with my trolley as fast as I can praying that I don't see anyone I know, cos to have to hold a conversation as well would be just too much. Even at a checkout I have to lean against something whilst I'm waiting. I'm very lucky to have a very understanding husband who takes over if I can't manage (though we do end up with some very strange items of shopping!!), but never mind. I do wish I could be there to help you Jay, - we could take it in turns to push each other round in the trolley and run over anyone in the way!!

I'm sitting here in my dressing gown with my hair standing on end typing this (not a pretty sight!). I feel feel particularly awful today, and could just go back to bed - maybe I should have tried to carry on with work to at least motivate me. It's grey and cold outside and that doesn't help. As you say, Jay at least we've got this site to vent our feelings - however miserable. I shall try and come up with some good jokes for next time. :lol: :lol:

LOL

Katie xx

Hi there! It's me again

I've just had a bath and got a glimpse of myself starkers in the mirror - and have come to the conclusion - I am getting FAT:shock: :shock: :shock: . Has anyone got any bright ideas of what is the best way of exercising when you have ME? Can't jog, can't run, can't walk very far - let alone lift weights. Have tried swimming but by the time I had shoe-horned myself into my cozzie I was too exhausted to even think about going in the water. :cry: :cry:

I just can't believe that two years ago I was one of the fittest members of my gym and was booked to do a spinning instructors course, cos I was so damn good at it and often used to take classes when someone was sick - and now look at me My once washboard stomach is just a mass of rolls of revolting lardy fat.:shock::shock::cry:

I feel so envious when I see people jogging (and there's loads of them at the moment training for the London Marathon). I do wish they wouldn't jog down my road - one of these days I am going to be tempted to lurk in my front garden and stick my foot out:twisted::twisted:That will teach them!

Right, that's got that off my chest! Think I am turning into someone who is not terribly nice. Do I care??:x :x

Katie (in a bad mood!)

WELL...

I have the answer! My new motor! Black out windows, room to get comfy, air con, volume control, free diesel and more than anything else we can all sit and moan together :wink:

Bet you are sick of hearing bout my new car.........

Joking aside I am on form at the moment. I went to my local supermarket and managed to be in and out in 20 mins. I find myself doing a supermarket sweep because I cant bear the thought of getting so far round and unable to do anymore. I panic somethimes but as previously mentioned I find that no matter how hard I try "pacing" is almost impossible for me with me working full-time and 2 demanding kids. It got to the stage when my hubbie started to do the shopping and I felt I was losing my independance AND he only was buying the bare neseccities? So now I grab as much as one can and at the very back of our store is the wine and clothes section so I know there's a treat waiting for me! Its almost like dangling a carrot! I can almost guarentee that I have a bad throat by the end and thats when I know I have to give in.

My GP suggested it may be benefical to see an occupational therapist and at that time I refused but I am seriously considering my options now becasue my body appears to look like I have muscle waste. Also I dont know where to start with excercise becasue no matter what I do I pay for it

As for you Jay & Katie, I truly understand your feelings when people ask how you are? I will be thinking of you both x

Donna x

Hi Katie, Donna and every one else

Thanks for your kind words Katie and Donna, its so nice to speak to ppl who actually understand your health and realated issue problems.

Donna id never get bored of you talking about your new car, i love motors myself so know how you feeling are over it, when i got my new Focus ST i couldnt stop dropping it in every conversation, i hope your still enjoying it and weres the pic ?

Katie i know how your feeling over your fitness issues, i used to do boxing, Ti-Chi and mountain bike riding, but now i struggle to walk, havnt ran or jogged for years and my 6 pack is now a barrel, my mussles too are wasting away, i used to be quite vein but now i dont like what i see and my confidence has dropped through the floor.

Got really bad insomnia at mo hence its 3.52am, i go through stages were im up all night and sleep during the day, but like a light switch being turned on ill be up during the day and sleeping at night, my body clock has stopped working and i have no control over it.

Hope your both ok and spk soon

Take care

Jay xox

Well I should of known better than to brag about my short spell of good health.

Not feeling my best right now with typical M.E symptons and a terrible attention span and memory problems. I had some post return to work - it was highlighted with mistakes - bet I felt good It was only a letter I have posted to all the local schools Thank the lord it came back to my office and not the boss. I feel so embarrassed and ashamed as I am such a perfectionist when it comes to writing letters and people come and ask me for help. This has really got me down - I feel like a failure. It is at these times that I start panicking about my future and wish this illness would just go away and pick on someone else!!!

The Fibromyalgia is kicking in BIG time and I feel as though I am carry a ten ton weight on my shoulders - I ache so much. I am in pain when I wake up in a morning. Not only that I have now caught insomnia off Jay! I keep waking up with awfull night sweats - I am wet through! I wonder what makes us sweat like that especially in the night? Any ideas??? :oops: I thought I was going through the change - but I'm only 31?????? :oops: :oops: :oops: :oops: :oops: :oops: :oops: :oops:

On a better note I have lost 3 lb in the past week - only to go and find some chocolate to make myself ffeel better :twisted: :twisted: :twisted: :twisted: :twisted: :twisted: :twisted:

Haven't heard from you all for a while so I hope you are feeling better?

Thanks for the whinge :cry:

Donna x x

Hi Donna,

Im really sorry to hear your under the weather of late, Sounds like sommeones being over doing it what with the new car and work loads, and im even more sorry i gave you my insomnia, waking up with night-sweats is not nice but after some research a few years ago my reasons are: With mixed M.E and insomnia symptons and the reason why you ach so much in the morning is because your not getting into deep sleep state, for some strange reason we stop at the dreaming stage, its not the part were your body repares cells or converts short term memory into long term memory, hence memory lose, and the sweets are because we dream for so long and there real like we've just watched a dvd about it.

Im similiar to you regarding work, much a perfectionist, which when i was working really drained me as i found i was having to raise my concentraion levels dramaticly, and especially when i was deprived of sleep made it nearly impossible for me to do my work safley and correctly, i know how hard it is but i found reducing my goals a good help too, i even set goals about doing general house work every day now, as were as before it was about promotions at work and improving my life style.

On a different note i had my MRI scan yesterday on my head, which was aan experience as i was fine about it untill i got to the hospitol, ppl there were asking if id had one done before as they were really aprehencive about what to expect from the test, which of course started panicing me, it turned out to be OK but i did have a panic towards the end because of the noise effecting my M.E. so just waiting to hear from them now :D

Not a bad week, my sleepings being kinda ok, but my aurticaria has kicked of big style, got rashy, itchy, hot, swealy bumps coming up all over and there painful and driving me insane, got this the same time as M.E, but after a year of treament to control it i stopped reacting to the drugs so now i just have to put up with it

Donna hopefully with the prospect of summer just around the corner lets hope we all have and enjoy this summer and try and have a little more time out just for you :wink:

Take good care of yourself

Jay xox

PS Spent more time correcting mistakes than writing this !! Argg

PPS And remember more time out for you !!

Hi Jay, Hi Donna

Have just read your postings (with great difficulty as my eyes are almost crossed today, and everthing is one big blur!).

Will be in touch again very soon when I can actually see what I am doing - I know what you mean about spending more time correcting your posting than actually typing it, Jay!!

An interesting point though - I, too, am a perfectionist - and from what I gather many folk with ME are high achievers and perfectionists! Perhaps some research should be done into this - far better than us all being lazy slobs though I suppose!!

Have a great weekend, despite all!

Katie xx

Donna, my fibromyalgia is awful at the moment too. I feel as if my neck and shoulders have hot irons sitting on them.

It's taken me about half an hour to type this and I now feel exhausted. God, this illness is a pain!:cry: :cry: