Hi
My name is Holly and i live near penzance, i was diagnosed with ME in december and i am still trying to get my head round it.
I think i might have had this for longer but it was put down to me having anaemia, so i am glad that i have finally found the answer.
Would love to hear from everybody and any advice would be welcome.
Holly
(15-03-2010 01:38 PM)hollys Wrote: [ -> ]Hi
My name is Holly and i live near penzance, i was diagnosed with ME in december and i am still trying to get my head round it.
I think i might have had this for longer but it was put down to me having anaemia, so i am glad that i have finally found the answer.
Would love to hear from everybody and any advice would be welcome.
Holly
hi holly, my name is darren and i live near truro. i've just recently been diagnosed with this too. and it is difficult getting your head round it, i have a couple of friends both have had it 5 yrs+. I realise now what they've been going thru all this time, you never really know how uncomfortable another persons shoes are until you've walked in them. At the same time i do get strength in knowing that they have got thru this for all that time, so can i.And so can you. one day at a time. God bless. darren
Hi Holly (and Darren). Bad stuff first.........I was diagnosed with ME/CFS two years ago and it has been very difficult. I have always led a very busy life and it felt like everything was taken away from me. Work were fantastic and let things 'run on' far longer than they had to, but they eventually laid me off in March so I have lost my nursing career. I have had endless battles with my ESA assessments having to go to tribunal etc. I have had long periods stuck in bed and months at a time stuck in the house, but have survived it all.
Better stuff....... I have learnt to enjoy my own company, it's not so bad after all. I have learnt to ignore jobs I 'should' do to save energy for things I want to do. My husband is a star and does all the things I cant do as well as working full-time. Having finally learnt how to pace myself I rarely have to stay in bed now although I only get out of the house a couple of times a week. I am starting the expert patient programme soon and hopefully, in the future, will manage to do the training to become a volunteer tutor on the course. Initially, I spent all my time on the Internet trying to find reasons why I had got ME and looking for ways to get rid of it again. I found a lot of information, some very good, some decidedly dodgy, but unfortunately none of it helped me get better and all I did was wear myself out. Eventually I have realised that the NHS approach focuses on managing the condition for good reason. I have wasted my money on 'alternative' methods and and become very frustrated at times which just makes my symptoms worse. The local NHS CFS service is great but they are massively underfunded, understaffed and overstretched so cannot currently provide the ongoing support they would like to. At some stage, I am hoping to use my nursing experience and qualifications (and my own personal experiences), to work from home, very part-time, helping others with ME.
Basically, be kind to yourselves, rest as much as you need to and if there is an easy way of doing something ... do it. I have bought new Dr Cook pans with easy grip handles, (my husband thinks they are great too), a speech recognition program for my laptop, suction grab rails for the shower and have a perch stool in the kitchen. I buy frozen veg so we don't have to prepare them, etc, etc. Such simple things make a massive difference.
This weekend I have been to London with a very good friend we paid for our hotel with Tesco vouchers, I have a disabled Railcard so we had cheaper rail fares to get there, we got discounted disabled rates to go to see Mamma Mia and Phantom of the Opera, we ate at Marco Pierre White's and Albert Roux's. We had a fabulous time. We took things very gently and didn't pack in all the stuff we would have a few years ago. Not so long ago I would never have thought this possible, yes I am suffering for it this week but so what! It was the most excitement I've had in ages!
So, keep the friends who try to understand and make you feel good, dump the friends who don't, do things the easy way and don't feel guilty about leaving the stuff that just wears you out. Most of all keep some energy for doing things you enjoy. All the best to you both.
(12-05-2010 12:03 PM)Lynne H Wrote: [ -> ]Hi Holly (and Darren). Bad stuff first.........I was diagnosed with ME/CFS two years ago and it has been very difficult. I have always led a very busy life and it felt like everything was taken away from me. Work were fantastic and let things 'run on' far longer than they had to, but they eventually laid me off in March so I have lost my nursing career. I have had endless battles with my ESA assessments having to go to tribunal etc. I have had long periods stuck in bed and months at a time stuck in the house, but have survived it all.
Better stuff....... I have learnt to enjoy my own company, it's not so bad after all. I have learnt to ignore jobs I 'should' do to save energy for things I want to do. My husband is a star and does all the things I cant do as well as working full-time. Having finally learnt how to pace myself I rarely have to stay in bed now although I only get out of the house a couple of times a week. I am starting the expert patient programme soon and hopefully, in the future, will manage to do the training to become a volunteer tutor on the course. Initially, I spent all my time on the Internet trying to find reasons why I had got ME and looking for ways to get rid of it again. I found a lot of information, some very good, some decidedly dodgy, but unfortunately none of it helped me get better and all I did was wear myself out. Eventually I have realised that the NHS approach focuses on managing the condition for good reason. I have wasted my money on 'alternative' methods and and become very frustrated at times which just makes my symptoms worse. The local NHS CFS service is great but they are massively underfunded, understaffed and overstretched so cannot currently provide the ongoing support they would like to. At some stage, I am hoping to use my nursing experience and qualifications (and my own personal experiences), to work from home, very part-time, helping others with ME.
Basically, be kind to yourselves, rest as much as you need to and if there is an easy way of doing something ... do it. I have bought new Dr Cook pans with easy grip handles, (my husband thinks they are great too), a speech recognition program for my laptop, suction grab rails for the shower and have a perch stool in the kitchen. I buy frozen veg so we don't have to prepare them, etc, etc. Such simple things make a massive difference.
This weekend I have been to London with a very good friend we paid for our hotel with Tesco vouchers, I have a disabled Railcard so we had cheaper rail fares to get there, we got discounted disabled rates to go to see Mamma Mia and Phantom of the Opera, we ate at Marco Pierre White's and Albert Roux's. We had a fabulous time. We took things very gently and didn't pack in all the stuff we would have a few years ago. Not so long ago I would never have thought this possible, yes I am suffering for it this week but so what! It was the most excitement I've had in ages!
So, keep the friends who try to understand and make you feel good, dump the friends who don't, do things the easy way and don't feel guilty about leaving the stuff that just wears you out. Most of all keep some energy for doing things you enjoy. All the best to you both.
hi lynne, thank you for your mail to holly and (me) lol. i found it really helpful. i started to look into things about m.e. but have found, as you have said it doesnt make me feel any better. I am going to look out for the voice recognition program and the saucepans as these would be really helpful. i have been looking at those amazon reader tablets too, because they have an audio readout function, providing the book also has this function added to it. I also don't do a lot and am getting past the stage of not inviting my friends round because its untidy and being embarrassed by it. I'm glad you visited london and had a great time, my mum lives there and she's 87 now, i'd like to go up but dont think i'm able to yet. But you have given me a lot of hope for the future. thank you. regards darren09
Hi Darren,
I have got dragon naturally speaking standard 10, which is on offer at amazon for £37 at the moment (less than half price and well worth it). The pans are also great, much less strain on your wrists and really good quality. Do look around as I found them at a pretty good price too, I think I paid less than £70 for a set, they are almost £90 on the dr Cook site! Sainsbury's and easy life uk have them under £70 at the mo.
There are so many things I have found to make things easier for me. It depends what your main symptoms are really. I have more trouble with pain than tiredness which has put a stop to lots of things I used to do to relax! Even reading is often an issue as my hands get sore very quickly holding books (or phones, or knitting needles, etc, etc). I joined audible.com so I could get audio books on a subscription, they are very good if you want new releases but I have since found calibre........they were initially set up as a service for the blind but now lend audio books to people with any kind of disability that makes reading difficult. It is free (but obviously they appreciate donations) and works like love films etc, where you make a list of the books you fancy, they send them to you randomly depending what they have in the library. Postage is free, you can have 2 at a time and they send you another book as soon as you return one. They have a really good choice.
The internet has been a real Godsend for me...I don't know how I would have coped without it. I do most of my shopping online. I have all the birthdays/anniversarys set up on moonpig to remind me 2 weeks ahead of time and use amazon for most presents so they can be sent directly for free.
Am sure you have found plenty of ideas of your own but basically if you have a problem, type it in and see what comes up!
All the best,
Lynne