Does anyone know anything/suffer from M.E?

[Chocol8]

Doc thinks I have it and is sending me to the ME clinic in London. Any comments welcomed.

fefifofum and 80sMum - Hi. I don't normally click on links so could you give me the website address, please? I usually Google things and look to see what it brings up before I decide whether to click on things or not. I do this because I am IT illiterate and very cautious. Sorry to be a nuisance.

rosies - I haven't made that appointment yet, but I haven't completely forgotton. I will do it soon. If I'm lucky, the lady might do home visits as I don't go out unless I really have to. I do the basics such as the school run, grocery shopping, taking ds to football, etc, but that's it.

Chocol8 - How are you atm?

Aww, thanks for thinking of me Tiptop - not good at the moment. I was doing ok til the Friday before last then suddenly my glands were up again and felt like poo.

Then just beginning to feel better to be hit with a STINKING cold (and glands) again yesterday. I made it into work today - but only just.

I don't know what to do with myself! I have to get up every day for my ds who is 7, but I must admit to staying in bed til 9.30am on Sunday! Bit of a lie in for me, but it was bloody hard getting my carcass out of bed! It's like fighting a battle both mentally and physically isn't it?

How are you Tiptop?

If you hold your mouse over the link the website should show up in the bottem left of your screen...in this case www.25megroup.org

Rosies is longer and I'm too lazy

Hi Tiptop - sorry I didn't look in on this thread yesterday so missed keeping my fingers crossed for you! How did it go? What did he say?

I don't have any follow up appointments made at all, should I have? As far as I know, I am to wait until I get an appointment through for the ME centre....! I have been quite ill twice now since I saw the doc a fortnight ago, but I haven't the time or the energy to keep trotting up the docs everytime I feel bad.

How are you feeling today? x

Oh Tiptop! Surely they can't do that?! As you say, ME is considered a disability. When I spoke to my HR, she told me that the company (which is a charity) would have to ensure that I didn't do too much and I would be considered as disabled (she was happy to include me as their first disabled employee - looks good for the numbers).

In fact, she said that I should not worry about my job as actually this put me in a better position regarding my post and they are really hot on that sort of thing.

They surely cannot DISMISS you? Especially with an excellent work history behind you?! I would speak to the CAB or as you say, a solicitor immediately. This would not be considered looking after their employee and is more putting undue stress on you, surely making you feel worse.

I came home early from work today as I seem to be getting worse - it's going onto my chest and is really painful. I will try and make a docs appointment for tomorrow or Friday. Your doctors sound scary - you can't see your own doctor til near Christmas??? Ridiculous. Oh poor you Tiptop, so sorry you are going through all this. (((hugs))). x

I'm sure that your friend will be only too willing to help you out in this situation Tiptop. I am most disgusted about this situation the more I think about it. There are rules and regulations which must protect you against this sort of scenario and your friend will probably know them.

To make a monthly appointment sounds like an excellent idea, especially as they seem to be over subscribed. Let us know what your friend says Tiptop - good luck, though I am sure you won't need it - the law must be on your side, I feel sure. xx

just a quick message tiptop, came on to see how your meeting had gone. Sorry it was so foul. Thinking of you

Hi Tiptop - sorry I didn't see your message earlier - I'm sure that someone can help you, this is a ridiculous situation and not at all welcome when you are feeling like you are!

I'm glad you have the support of your gp - that's good news. Not so sure mine would be so helpful tbh.

I was just beginning to feel better again for two days but been stuck down with ANOTHER cold. Last time - 3 weeks ago, the doc looked down my throat and said that it wasn't very red. The reason i'd gone was because I was in agony with my chest. He didn't listen to it and was very dismissive. Felt a total fraud when he told me to go away and gargle with anticeptic mouthwash . No sign of an appointment for the London clinic yet.

Let us know how you are getting on Tiptop. Thinking of you. x

Tiptop, long time no hear, sorry!

How did Christmas go? Were you ok?

Mine was pretty quiet, so no probs there. Is there any more news from work yet? I had a look at my contract recently as the doc wanted to sign me off for 6wks for treatment of my "chronic skin condition" (nodular prurygo). I'm sure I noticed that I would be let go after a year of being off, will check it out further.

Spoke to doc about several things last week and asked if my appt had come through at the clinic but she said another woman had received a letter to say that they would have to apply to the PCT for £200 just to be seen. Will call them next week to see if they are willing to pay for me - if not, may not go as haven't the energy to fight.

tiptop and choc,

i havent been onto this forum for awhile, but i was wondering how you both are, having read through the post again.

dod either of you get round to trying any complementary treatments? i know you have other stuff going on for you, but really do try something... it may give you that extra energy you need to cope with the other crap.

best wishes.

I stronglt reccommend Reflexology as well - it has dramitically improved my life (no exageration)

hi tiptop,

thing is, although yes, its money on yourself, if it is helping you recover and gain health, it should not be seen as a luxury, should it.

i'd always recommend 3 - 4 weekly treatments, see how you feel, if you are benefitting... one evry 6 years is just not going to cut it .

IF its helping, try going for one a fortnight, see how it goes and cut down to one a month. we reflexologists are very flexible and are there to aid... we want to help.

where roughly are you... i know lots of good therapists around the country.

I've had once a fortnight for the last 2.5 yrs - it's so not a luxury.....I need it physically & emotionally I feel uplifted and calm after each one and by about day 10 I am waiting/looking forward to the next one.

BTW my Health Ins (like HSA) pays towards it

HSA pay for it? wow they have come on since i was a member.

i'm glad you have such a positive time and enjoy your reflexology.

Sorry I just meant it was like HSA - it's called Health Shield and it's really good

I asked for some of my posts to be deleted. I had a good reason for this, but don't want to go into it further. I hope no-one minds.

rosies - I've heard back from the reflexology lady and I hope to have an appointment next week. I will take your advice and I'll have an appointment once a fortnight to begin with. I hope to find a herbalist locally to see if that will help, too. Oh, and I think you live far away from me - most people do!

KatieMac - I'm glad to hear that the reflexology really helps you. I'll let you know how I get on.