Reality Check - Brain Fog

Hi there Jay (and everyone else)

I really can understand how you feel, and it must be hell for you to have had this illness for so long, particularly as you are so young. Life is so unfair. Until ME is officially recognised by all, I honestly don't think people will ever really understand how we really feel. The times I have wished that friends and colleagues of mine could just experience - even just for five minutes - EXACTLY how ghastly we feel. They have absolutely no idea how distressing it is not to be able to lead a normal life.

I get so tired of people saying 'Oh, are you still ill'?. I've given up mentioning how I feel now, it's just not worth the effort - I just haven't the energy any more to be bothered.

Next week will be my last week at work - I'm taking a career break for six months as I just can't manage . Some how I don't think I will ever go back. It's a job I've been doing and loved for the last twenty years - but with my foggy brain and constantly feeling on another planet I just don't feel I am safe doing the work anymore. Doing it this way means that I can avoid a big farewell 'do' - which I just couldn't cope with - I can now just fade into obscurity. ( Blimey, that sounds a bit dramatic!!).

But various people's reactions to my break just show how little understanding there is - "Wow, so what are you going to do with your break? Are you going to go travelling, you lucky thing!". Like hell, I am.

Just going to the local supermarket is like climbing a flipping mountain".

I can completely understand what you mean by brain fog numbing the senses, Jay, and that sometimes it may be a good thing, but I just hate the fact that I am no longer in control of my mind or body.

Hey ho - so, as I'm alway saying - we just plod on!

Gosh, this is a miserable posting this is :cry: -I'd much rather have our light-hearted ones!!

Take care and LOL

Katie xx

Hi Katie

Sorry to hear about your career break, it must be awfull to have worked so hard for 20 years only to have to give it up, my fingers a crossed for you to be able to return in the near future, i gave up my 18 year career 2 years ago, my doc eventualy realised that it was making my illness worse by working 40 hr weeks, but the only thing i wish i had done was to try and do some sort of exercise course at my own pace, otherwise you can just fade away.

Yes i do agree this is a miserable post, but if all our post's are light hearted then i dont think ppl will take our illness seriously :lol:

Take care

Jay xox :lol:

Hi Guys!

My biggest problem is that people just dont understand the complications with brain fog too! People just seem to think am just dizzy! :shock:

I try to explian that its like having asome of your vocabulary there in your head but It just wont come and and when it does it can often be mixed up. My family and some friends understand now when I say to them "Hang on it will come out" and they wait but there are times when it just wont and I forget what I am going to say. I'm not sure this fully a brian fog issue but equally a memory loss problem too - which is associated with ME too.

I am also experiencing for the first time some aching under my armpits - i think you can have some kind of glands there???

Also my fibrolmyalgia/ME is still active!!!

Any advice or experiences with this

Donna

p.s one of my posting has dissapeared - the one bout the sales garage :?

Hi folks (That's me trying to be cheerful!)

Thanks for being sympathetic about my career break, Jay. At least I can have some long lie-ins and not have to prise myself off the bed on work mornings!

Donna - yes we have lymph nodes in our armpits and it is well known that this can be enlarged and painful with ME. They can also be enlarged in the neck and groin. :oops:Yes, my fibromalgia has been really awful the past few weeks and I'm now experiencing tingling in my hands which is equally horrible. I don't really think it's much use taking painkillers as the condition is systemic and does not respond to anything, I find. (Although a large glass of wine in the evenings helps, but then I pay for it later!)

I'm still intrigued as to why your posting about your new car (and the petrol disaster!) has disappeared - also my answer. What have we said to have it obliterated!!? How does one find out from the moderator? When you see what some people have written on some of the other sites, it can't have been offensive.:? :?

Well, yet another Saturday evening in. Just had a thought:idea: - it would really help our cause if a programme like Casualty featured someone with ME and the staff were all very sympathetic and showed it to be a genuine illness. Maybe I should write to the Beeb .........

Take care both of you.

Katie xx

Hi again folks

I've just had another idea. :!: (There's nothing on the telly so here I am scrolling through our various pages of musings) - when suddenly I thought ..... :idea: :idea: when we've accumulated a bit more material -

we could get them get them published into a book! When you think of all the rubbish that is printed I reckon we're onto a winner - a best seller in no time. I reckon publishers will be falling over themselves to offer us a hefty advance in no time. 8) 8)

I can just see us all now at the book signing - Jay arriving on his brand, spanking Harley Davidson, clad in black shiny leathers (having bought it with the advance) and Donna turning up in a top of the range 4 x 4 with leather upholstery and gold trimmings and me, well, I've always fancied myself in a Merc. convertible. 8) 8) 8) 8)

Oh well, we can always dream. You can tell I've had that large glass of wine! Hic!!

Katie xx

Hee hee

I dont know what happened to the posting! I think you might be right - maybe the moderator has taken some of our funny comments to the pub to share with his/her friends OR possibly getting us a deal right as we type! Either way I have no concerns as to what I put because it wasn't offensive - well at least I dont think so????

Yep I can see us all now turning up in style, half asleep, unbrushed hair, stiff, looking confused :? and 2 birds squashed into Jays sidecar! hee hee hee - oh and a glass of wine in Katies hand :lol:

Its not uncommon for me to feel like I have a BIG throat but under my arms??? WHat is ME coming too? And as for the groin area - no comment :oops:

Like you nothing on tv tonight so my hubbie and me have started to pull tiles off the kitchen wall. I have managed all 15 mins and sheepishly retired :?

As for your career break that is something thats been playing on my mind for a long time now. I would like to become self-employed this year but with a horse trailer to buy now I might need to stay in some job security a bit longer.

What ever happened to Lisa?

Take care everyone and watch the wine Katie :redwine:

Donna x

Katie love, I sympathise. I eventually gave up a job I loved and was good at. My boss was brilliant, she accomodated me and cut my hours and cut my hours but in the end I felt I was just not being fair to her - a month on and a month off, she couldn't rely on me.

I went to my disability employment advisor and got upset but, she said, I wasn't doing anything well. I was a poor employee, an inadequate wife, a bad mum and grandma and a lousy person. Something had to give and it had to be the job.

I have actually improved a little since work went out of the equation to the point that sometimes I think of trying to go back, but as my husband says, we would then go back to square one, but I do miss my work, it gave me my identity and purpose.

I do sometimes wonder what is the point of me now?

Can't find a button to edit my post so here's a post script

The daytime soap 'Doctors' once featured a patient with Chronic Fatigue Syndrome. It showed a youngish woman trundling round on a mobility scooter and lying on the sofa looking waif like a lot whilst the doctor paid her house calls.

It was so out of touch with reality that i nearly wrote to the Beeb but was too tired to bother :roll:

Hi Alicia

Thank you for your kind words.

Yes, it was a very hard decision to take a break from my work - my employers too, have done everything they can to reduce my hours and my work load - but I just didn't feel it was fair to carry on as I was - and I was so afraid of making a ghastly mistake.

Your so-called Disability Employment Adviser could do with a break too, by the sound of it - a very long one ...........

I'm not missing work at the moment, but I know once the spring and summer is over I shall be wanting to return - but I have a feeling my husband will put his foot down. I'm sure your husband is quite right that you would be right back to square one.

It's hard to admit defeat, but we really have no choice. I think it's so vital that we all try and remain as positive as we can - and that's where this forum is so brilliant in that we can support each other. A friend of mine was diagnosed with motor neurone disease just before Christmas and when I think of what she has got ahead of her I feel really ashamed to keep moaning about my lot.

Sooooooooooooooooas I'm always saying - we just plod on!!

Take care

Katie

Oooops, I think I was misleading there. :oops: My DEA has been wonderful, she did not say those things about me, that is how I was feeling because I was overloaded and because I have poor self image anyway.

I don't see the DEA now because I am not in the running to go back to work now. I expect once the govt decide to stop all our benefit and force us back to work I will see her again :roll:

(Do you really think they will do this as they keep threatening to do)

hi iv just been dignosed with fibro and find my self also forgetting things like brain fog I find my self doing silly this for instance iv put my kettle in the fridge and silly tiny this gs but then when I realise it freaks me out feel as tho I'm going crazy