Has the forum got M.E again ??

Welcome back Jay!!

So pleased you are feeling a little better - Donna and I were imagining all sorts of things!:shock: :shock: :shock: :wink:

Speak to you soon.

Katie xx

Happy Easter Everyone!

I cant believe I have been SO silly! With all my good health yesterday I invited friends round for a "Games Night" - thinking that I could just sneak off to bed if things got too much. Well silly fool me.....I am exhausted before the party has even begun! :? And soon to be retiring to bed! I have made the biggest meat and potatoe pie ever and we are expecting around 25 guests! What have i done :?

Oh well it seemed a good idea at the time :idea: but with being such a perfectionist I dont think I will get much sleep when I do get to bed becasue I will be worrying I have forgot something! I can see its gonna be a long week for me too!

Glad to hear you are getting better Jay - is it common to be suseptable to such poor health when yyou get a virus or infection? Touch wood I have been free of such illnesses just my usual ME. :wink:

Anyways my bed is calling me

Donna x

Hi Donna (and everyone else)

I don't think we have "Games Nights" in the South - what do they consist of - the mind boggles :wink: :wink: Or is it just some sort of massive Easter Egg Hunt that you've organised? Sounds good to me - as does the huge meat and potato pie - count me in !!!

Yawn - well I too have entertained today. Luckily my guests left around 5ish (I think they were fed up with me continually yawning) - and I have just been out for the count for the last too hours. In fact, when I think about it we did play a game or too. They spied my redundant pink hula hoop in a corner and all had a go. :roll: :roll: Great hilarity - especially after a drink or too.

On a serious note, that's the problem with ME - when you have a good day you think you can cope with absolutely anything - when will we learn?

Take care everyone

Katie xx

Hi all,

Really hoping someone may be able to advise me how to go about getting diagnosed privately and how much it may cost. As I mentioned in previous posting my GP has referred me to an ME clinic for assessment (whatever that means) and I have now had a letter from them advising me I will be placed on the waiting list but they are currently starting to see people referred in November and their clinics are booked up through to July. This sounds like I'm in for a pretty long wait and in the meantime GP isn't doing anything to help apart from dose me up with tablets to help with headaches/migraines. The tablets don't seem to have any effect on the headaches but make me drowsier (didn't think that was possible :!: ) and dizzier. I really want a definate diagnosis - it may make people realise I'm not just a lazy hyperchondriac - and maybe I could start some sort of treatment. I have heard that earlier diagnosis makes for better chance of recovery. The problem is I have no idea where to start and i haven't had any success 'googling' privately diagnosinf me/cfs. I noticed some peoples previous postings make reference to getting diagnosed privately and I would be grateful if anyone could point me in the right direction.

Hope you are all doing ok at the moment (or as ok as ME allows anyway :roll: )

Thanks

Michelle

Hi Michelle,

Your proberly not goin to like what i say in this but its my experience to your questions, Ive found even with a definate diagnosis ppl still think we are all lazy, i being told it by both the public and professinal ppl that i am, so although the diagnosis will confirm your illness thats about all it will do, secondly theres still no known cure for M.E so theres no tablets to take, i havnt taken any pills for a long time and have found my consentration a little better so i tend to stay away from them, unless theres one for a miracle cure, i got diagnosed after 2 and halfs years of pestering my doc who had sent me to a M.E clinic, which i would advise sticking to as they will help you cope with it alot better, Sooo diagnosis from a private clinic will only answer your one question as to weather or not you have it.

Sorry if this sounds a little rough but unfortunatly for us its one of them illness's ppl dont like us to have.

Hope you get your answers soon

Take care

Jay xox

Hi Michelle

I've just written you a long answer to your question re. diagnosis and the damn thing has just completely disappeared off the screen :shock: :x

Is it ME or does this happen to anyone else??

So I'll make this reply brief!

I spent £250 for a private diagnosis - waste of money (specialist turned out to be a psychiatrist, of course so the whole visit was more of a psychiatric assessment - great!)

As Jay says, having a diagnosis doesn't make one ounce of difference - most folk still seem to think that we are malingerers and should be able to pull ourselves together - makes me cross medics refuse to call it ME - would someone with Alzheimers be known as having Chronic Forgetfulness Syndrome! :evil:

I would suggest that you wait for the NHS diagnosis - and save money. I would much rather have put that amount towards massage or reflexology.

The ME clinic will probably offer you Cognitive Behavourial Therapy which may help you learn to live with the ilness and pace yourself better. They may also suggest treatment with drugs - usually antidepressants - suits some, not others. Helps me with fibromyalgic pain and sleep - but may also be the cause of my dizzyness - but had that already! Everyone is different.

To be honest, the best souce of help for me has been this forum. Just to know that others understand how awful you actually feel, really makes a difference.

Hope this is of help to you. My first posting was much better ........ :roll:

Regards

Katie

Katie, thank you. I didn't think anyone would reply.

Well the HRT has gone out the window already. The headache was ridiculous. I'm not living with that. I'll just have to put up with getting old. :roll: I am very intolerant to drugs, medications and alcohol and my consultant told me this is very typical with ME. I have certainly found this to be the case.

You are right, a clinic cannot change things but it does help to remind me that I am not alone. The first time I walked into the waiting room and saw all these men and women who looked absolutely like I feel, I felt so totally reassured that I was not a) going mad and b) making it up. The clinic is also good for teaching coing strategies and has a physiotherapist and occupational therapist, but I wasn't offered the clinic - I had to ask for it like I've had to ask for everything.

I have now been discharged from the ME clinic back into the endocrine clinic because I have stabilised at the level I am at and they have done all they can. but I can telephone at any time and I still see the psychologist.

I had not heard about a blood test, but part of me feels worried that now they will be able to prove I've been making it up all this time :roll: I have been accused of malingering and making it up so often that I am just waiting for someone to prove that it is true. despite the fact that out of the 8 point criteria used to diagnose it, I had all 8 :shock:

Thank you for the welcome. It is nice to have someone to sound off to. :D

I am glad to see that others do this too - the overdoing I mean, not the hula hooping :lol:

I recognise a lot of myself in these posts.

I went to the National ME Centre in Romford and paid for my diagnosis because there was absolutely no services for ME patients in my area at the time. It helped me to have it on paper but it didn't help with anything else as it was too far to go to take advantage of their follow up treatment. Just the train ride to London and back creased me up for days. But at least my doctor couldn't argue with it and when I asked to go to the ME Clinic at a hospital in my area he agreed and I got funding to go because it is out of my PCT area.

I have been taught to manage the illness and sometimes I do and sometimes I don't, but I was still very much on my own and coasting along. I have never had anyone else with ME to talk to. I wish I had found this forum months, if not years, ago.

Jay, I have found that the best advice and support can come from the Citizen's Advice Bureau. I would not have got my Disability Living Allowance at the 2nd attempt if they had not shown me where I was going wrong with the application form. It is so exhausting and confusing, all this bureaucracy, but they will step in and take the effort out of it and they have access to so much information that is always up to date and correct. And they don't charge for the service.

Alicia x

Hi there Alicia

Yes, folk are very good about replying on this forum - - I suppose its partly because with this wretched illness we aren't out and about doing all the activities we would have been doing. :cry: :cry: (At this precise time I would have been doing an hours extreme spin class at the gym ... :cry: )

Think I'm finally going round the bend though! Started reading what I thought was your posting - and it turned out to be my last one!! All the time I was reading it I was thinking 'Oh, she's so like me' OMG! :oops: :oops:

I'm sorry the HRT turned out to be a non-starter. Some sufferers are unable to tolerate drugs and alcohol as your GP says - funnily enough, I seem to be okay with both (apparently there are 7% of us who are!) - so I am lucky enough to enjoy the occasional tipple! :wink:

From what you say, you've actually had quite a lot of helpful advice from your local NHS authority - but at the end of the day, it is really down to us

to do what we know we have to do - and that is to pace ourselves. :roll: :roll: - boring!

I know what you mean about a diagnostic blood test - wouldn't it be just typical if we all came out NEGATIVE. That would be just our luck!! :shock: :shock:

Take care

Katie

Hi there everyone

I've been meaning to ask this question for ages!:?

Does anyone or is it just ME - have problems when using the phone? 'Cos I sure do'!

I find that if I have to spend more than a few minutes talking to someone - my brain becomes completely frazzled and I feel even dizzier that usual - in fact, quite unwell. Oh, and my eyes get even more blurred. And, I start talking rubbish ... :oops:

I've now got to the stage when I dread certain friends phoning, simply because they are chatterboxes - as I used to be! Perhaps it's something to do with the signal or how ever it works, affecting my poor, battered brain.

Thank god for e-mails!!

Katie

Just interested to know if anyone can shed any light on it. Or not!:?

Hi Katie,

your not alone, I too find phone conversations a nightmare, especially with chatty people. My brain can't seem to keep up with the conversation especially if there is anything else going on around me and it seems to drain all my energy trying to focus and keep track of the conversation. I hate admitting it - in fact this is the first time I have - as it seems unbeleivable to be unable to cope with a simple phone call and I feel I would probably cause offence and be seen as just plain rude. Sometimes my phone conversations are full of long silences (from me) until the caller eventually gets off the line but even then I end up babbling and trying to make excuses for my ignorance. Its so frustrating to have such a battle with such basic things in life isn't it.

Take care

Michelle x

Hi everyone,

thanks for all your advice, I have taken it on board (albeit with a heavy heart! ) I contacted my GP surgery today and was unable to speak to my regular GP but lucky for my the Dr I did speak with claims to have a special interest in ME - I won't get my hopes up just yet. He told my that effectively the letter I received from the CFS/ME clinic is advising me they will not be seeing me anytime in the near future :x He also advised there is no private ME clinics but I can see him on Thursday and he promises to help me - he says he has a number of ME patients already and would be happy to work with me too. I'm not going to allow myself to get my hopes up as its too draining when you get kicked in the teeth again but I will let you all know how I get on. Again thanks for the advice and encouragement. Hope your all doing kinda ok

Take care

Michelle

Hi all,

although I usually avoid caffeine I have been considering trying something like Pro Plus to see if that helps me get through the day awake. I was wondering if anyone else has tried anything like this and what success of side effects this had.

Yours desperately and hopefully :?

Michelle