My Daughter and her M.E

Hi Sue

Thank you so much for your encouraging words. I'm so pleased that your daughter has made such good progress despite having been so very debilitated by the illness. I do hope that she continues to improve.

It was interesting to note that she unfortunately reacted to an adrenaline injection whilst having dental treatment - my dentist has advised me that there is a non-adrenaline alternative available, that all ME sufferers should opt for.

I have literally just posted extracts from an article in today's Daily Telegraph about how a new blood test for ME which is very close to being developed - quite an exciting breakthrough.

Thank you again for your best wishes and for taking the time to make contact.

Regards

Katie

Hi Katie,

i have since been told about the injection you mentioned, so will know for future reference.Buit to be honest i never thaught about an injection at the dentist causing any problems, which looking back was stupid of me since she as so many others react badly to medication etc. I think it was more a case of her doing so well and not reacting to other things the way she used to in the early stages of her M.E, that made me take too much for granted and not even think about it. I still feel really guilty for not thinkin but i cant change it now, only i will know better in future.

That blood test you mentiond sounds like quite a breakthru, and i think it will help to convince the many none believers there is out there. Its suprising what a difference it can make when there is something shows up in tests etc, aresult can not be doubted if you know what i mean.

I dont know about others on here but over the years we have come across more none believers who just dismiss the illness.We had so many problems with doctors, and mental health workers you wouldnt believe it, i'm so proud of how my daughter (Rachel) has come to tearms with everything that went on.

I have so much admiration for all M.E sufferers and wish i could do more to help.

Take care all

Sue

Hi Everyone

I just wanted to share another experience I had to day whilst training with other professionals!

We were sat in a circle doing a group activity and I was finding it hard to remember names - lets alone participate in the other activities! Anyways, we had to introduce you neighbour and a fact about them. I was SO prepared and guess what happened? Yep, you guessed, when it was my turn my mind was blank and I just sat there with the whole group watching me as I struggled and one member said "She's gone red" I just wanted to run out and cry. NOt only that I wouldnt of been able to run far cos I just didnt have the energy! The rest of the day went from bad to worse until.......

I was in the tiolets and a girl who was ateending said "I just wanted to say that my best friend has ME and I know how hard this must be for you". She went on to say "She in the best helath ever at the moment and feels ME free". Naturally, I asked what was the magic cure and her reply was "She's 6 months pregnant!" Oh well that was short lived.

I fell excited of the prospect of the future development you have read in the paper Katie. Once again we are back on track for evidence of such a cruel illness that shows no obvious outward signs.

I wish Rachel all the best on her road to recovery and hope she remain in remission whilst she enjoys some of the best days in her life! I have to admit that I am not effected as severly as Racheal but like many other my symptons often feel like they are holding me back in fulfilling what I remember as being a pretty normal life.

Best wishes to all ME sufferers

Donna x

P.S I ran to the pharmacy Katie when I read the STOP PRESS for my suncream!

Hi everyone

I had to laugh when I read your posting Donna - I had a similar experience on a wretched training course last year. :oops:

Luckily, I was let off the majority of courses (probably because I spent most of them nodding off to sleep in the corner) - but the First Aid course is mandatory so I had no choice.

I managed the morning classes fairly well with very little input, but the afternoon was the practical tasks. You'd think as a nurse (but now a bit past my sell by date!) I would be a dab hand at the old resus bit - but no way. Once again, they had changed the procedure and I just could not grasp or remember the technique that we had only just been taught. All my 'orrible colleagues were doubled up with laughter whilst I was grappling around on the floor with the damn dummy (making funny farting sounds - the dummy that is, not me! :oops: :oops: - promise!)

until the instructor finally announced that I had failed - and the dummy was well and truly deceased! OMG - I had killed it! It didn't help that the said instructor maintained that in all his years of training this had NEVER happened before! :oops: :oops:

As one does, I tried to explain that I suffered from ME etc etc but it fell on deaf ears - and anyway everyone else (except the instructor) was still laughing their heads off and tears rolling down their cheeks.

It's enough to drive you to drink!!! So yes, I do know how you feel, Donna.

Take care an speak to you soon

Katie xx

Well Katie all I can say is well done for trying to complete the course, at the moment I could not even get onto the floor to attempt to resus poor Annie. So well done you. I work or should i say worked :cry: in the nursing proffesion. The course is a nightmare at the best of times.

Hi Lou Lou

Well that First Aid Course pretty well finished me off as well - I had to go off sick for several days after that. I didn't really deserve to get the certificate. :oops:

It's years since I've actually nursed - since then they have changed resus techniques so many times - and as for the recovery position - well, that's changed beyond all recognition from my day so it's hardly surprising I get confused. :?

Since I gave up work a few weeks ago, I have made a decision that from now on if I don't want to or feel like doing something then I'm not going to. I shall do exactly what I want depending on how I feel - and if others don't like it TOUGH! I think we all try far too hard trying to please others and doing what we think is the right thing to do. I really think from now on we must put ourselves first otherwise there is not a hope of getting rid of this damn illness.

Sorry to sound off - but I'm feeling really cross today - probably because I just couldn't sleep last night.

Hope you are okay!

Katie

Sorry LouLou - I must sound a right old bag to you- I'm not really! Thank you for your comment to my earlier posting.

Katie

Hear hear Katie, I totally agree, but doing it is much harder than saying it. In my family the backlash of not going with the flow is far more exhausting than actually doing whatever it is I am being expected to do. :roll:

Putting myself first always seems to cause some sort of upset or argument.

I fully understand you Katie, it's so hard at times we all need to let off steam :steam: Family and friends get sick of our twists and they will never know how we really feel. So I say moan on if you need too as us fellow suffers are the only people who truley understand.

As you can see from the timeof my posting I rearly sleep, due to pain. I don't think we'll ever learn to put ourselves first.