do you have a friend or relative with ME watch this video

So sorry rubylady - I've just seen your new post. I will follow that one now to keep up with any news. Sending warm hugs and - your dad may be right, it might help xx

How did Saturday go rubylady - I was thinking about you Did Dad enjoy the bubbles?
Regarding your DGS - try not to worry, children seem always to find the energy to deal with these evvents and I'm sure he was excited as well. If he's grumpy because he's tired - well, they will have to deal with it

I really hope you can find some peace with this situation and begin to concentrate on your own well-being. You have enough to deal with, I know from watching my own DD how important it is to focus on those things you can do something about and conserve energy to help you through your days
All good wishes to you X

Just to add - does anyone else think my DGS will be tired out tomorrow when he started in reception class this last week, I think his first experience of schooling of any kind as my daughter was against him going to a nursery. Surely if he has done something so different all week and I remember mine being tired after that first week, then he is going to be shattered and his parents are going to be getting married and expecting him to be in a good mood all day, poor lamb. But as it was the day they started courting (and moved in together may I add!) then that is the day they had to get married on, regardless of what their little son had done the week before. Surely he should have come first and as he wasn't at school for the weeks before, they could have booked it in any time then, giving him this weekend to recover for Monday. But that's just me.

Thank you ladies. I've ordered a little bottle of champers and taking it, along with a picnic tea (egg mayo sandwiches, no "do" is complete without) to my dad's on the wedding day where we will have a "reception" of our own and a toast. My dad would probably have been too unwell to go too, and he says he has never had champagne before, so it will be nice anyway. I don't know if she has invited the rest of the family, my siblings or my mum but shameful if not.

Yes, I have tried to explain to my son about how I am affected but he doesn't want to know. I started getting worse when he was about 10 years old so he is probably fed up of it now. Plus he did look after me a lot in the early days of it affecting me. Now he drags his feet if I ask him to do anything. Never mind, he's back at college on Monday so I'll have some peace after him being off for seven weeks, which is far too long in my opinion at teenage age.

Anyway, I hope you all have a lovely weekend and the sun continues to shine.

Ruby with so much pressure no wonder you feel unwell. How complex families are and how sad you must be right now. Sending good wishes and my hope that there can be some space for you.

Oh flip ruby - so many things in your post are not helping your health conditions. Perhaps your son does not understand how you feel, it can be difficult for people to get their heads around an 'invisible illness' - have you tried to talk to him about it?

I'm so sorry that you will not be there to see your daughter get married and you also have the sad task concerning your baby brother Just one of these issues, never mind all of them, will add stress to your life and exacerbate your health issues. MiniMouse seems to be getting some positive results from her yoga nidra - do you have anything similar close by that you could join?

You are not alone xx

jogginggirl and MiniMouse Thank you for your lovely words of encouragement. I do have my son at home, but he won't go with me and probably makes my condition worse as he can be verbally abusive which leaves me dumbfounded and in tears.

I am having a bad week as my daughter gets married on Saturday and I am not invited due to me wanting to have a part in it and being told where to go (she's paying for it apparently so she gets to choose who is important), even after I was a sole parent most of her life, so that's not helping. Also, next weekend I will be visiting the grave of my baby brother who lived for 12 hours.

I do think dealing with these sort of things (and a dementia dad) and no support or someone to lean on makes this condition worse. I'm ready now for my son to leave home and then I can maybe start to get some sort of better but he is at home for another 12 months yet to finish college. I really will need you all during this time. Thank you.

thank you jogginggirl, same to you for your DD. mine has a very difficult [autism] child to deal with, as well.She also gets the tingling, mini stroke feelings and also has terrible migraines.

That's interesting MiniMouse. I'll look out for that type of yoga. Used to go to a class especially for folk with any type of illness or pain which was both gentle and helpful. Can't find one in my present location and a bit scared of a more robust class. It used to help. I'd love to try again. Agree with you about The Lightning Process. Not for me but as we're all different it may help some. Think I'd try other things first though.

annsixty I read up on it a few years ago and was not impressed!!! Very expensive and hyped up and the reviews at that time were off putting! Perhaps it's horses for courses and works for some people.

I admit to not reading all the thread so apologies if it has been mentioned, and by that I mean The Lightning Process. My GS has CFS and a friend told us about this programme. It is or was expensive and my D was reluctant to commit to something without knowing more. Has anyone tried it or has experience of others trying it?

cornergran That's interesting that you've tried mindfulness because I go to Yoga Nidra which is very gentle stretching, proper breathing, followed by mindfulness meditation. I emerge from practice completely zombiefied (is that a word?!) which lasts for a couple of days, but it definitely impacts my body in a very positive way - it's as though it releases something, if that makes sense. Acupuncture and cranial osteopathy are also brilliant, but I can't afford to do them on a regular basis!!

vq What a dreadful way to be treated by a consultant I know that I was very fortunate to have been referred to a more enlightened neurologist, even though it was 1997.

That's really interesting Vampirequeen, I get the tingly lips and often my whole face tingles. Thought it was just me! Sorry you had such a time with the consultant, thank goodness for the GP. I found early on that I got angry with the term 'ME' - this horrid illness isn't me - I am more than it. Just an odd thing I know, not clinically accurate maybe, but it helps me see past it. Currently Mindfulness helps me, as does homeopathy (NHS consultant) although I know it's controversial, also lots of Vitamin C, pacing is essential. It's such a complex illness. Worth keeping an open mind, I try anything that won't do me harm!

I didn't realise so many of us have, or know someone, with this debilitating illness.

I was diagnosed in 1996 by a psychiatrist that the neurology dept at HRI had insisted I see. The policy of the department at that time was that ME did not exist and therefore refused to accept the diagnosis. The consultant discharged me. It was at this point that I asked him if, when he qualified, he had sworn the Hippocratic Oath. He replied that he had. I then told him he was breaking his oath as he had sworn to help sick people and that even though I was obviously ill he was refusing to help me. Needless to say this went down like a lead balloon. He wrote to my GP complaining about my attitude. Fortunately my GP believed in ME and believed I had it so, apart from asking me to be a bit careful in what I said to consultants as I might need to be referred again at some point, she took over my treatment such as it was. Basically she signed me off sick for about a year in all as I rested and recharged.

I'm fortunate in that not only did that help but I discovered that when my energy levels are dropping my lips start to tingle. This gives me to chance to act before they drop too far. Doesn't work every time but definitely helps.

I do believe attention to diet helps roses - my DD does her best but with a six-year-old and trying to work - there is often little energy left for much else at the end of her day - I know you will understand that. I agree on the 'rest days' - and try to encourage them at all times! Best wishes to you and your DD

My DD is on a wheat and gluten free diet and drinks no tea or coffee, she says this does help, but of course not everyone could bear to do this!
if she has had a busy day, she needs a couple of resting days afterwards.

I'm sorry, too, rubylady It might be an idea to write a list of your symptoms and take it with you when you visit your doctor - it's easy to forget things, especially if you're at all anxious and in pain!

So sorry to hear of your pain rubylady - if you can find the strength please do look into this - do you have someone who can go to the doctor with you...? Having a friend/relative alongside might help if it's difficult for you to explain your symptoms. It did take a while for my DD to get diagnosed but along the way, many other conditions/illnesses were discounted, e.g. M.S., Thyroid problems (although this is still a possibility); rheumatoid arthritis, lupus and others. I hope you find the strength and energy to start the process xx

I'm going to look into this further. The symptoms seem familiar and I keep thinking "if I just get some more rest" or "if I lose some weight" or "if I ate such and such" but nothing is making a differnce. I'm in pain now, waiting for tablets to take effect so that I can sleep a little. It needs investigating, if I have the strength to fight for it.

Some lovely, thoughtful and helpful posts on this subject of ME/CFS/Fibromyalgia. I am storing it all and hope to be able to help my DD with what I am learning. Thank you all xx

My DH was diagnosed with ME about 23 years ago and eventually gave up work as he couldn't cope anymore. It was a very traumatic time and I have every sympathy with all those who suffer from this dreadful life changing illness. I realise each case is individual but to try and give some hope to those who are suffering I would like to say that my DH and I have a good lifestyle now. Whilst never regaining the full mental and physical health he had before, we have adapted and enjoy a slower pace of life now. To all those who have ME do not give up hope, life can still be worth living and time can bring considerable improvement.

Yes, I'm sure organic foods are beneficial, too. The fewer pesticides/chemicals the better!

I've recently gone gluten free as well to see if it helps. Too early to be sure, but I do seem to feel brighter somehow.

As you say, adapting is the order of the day!

Diagnosed with M.E. 25 years ago with fibromyalgia added three years later. I have experienced the life changing symptoms others describe to a lesser or greater degree since. I think I've been so lucky. My employer at diagnosis was so supportive. My already part time hours were made totally flexible. If I could only manage an hour that was fine. Lifts were arranged. I owe them a lot. As time went on my profession supported self employment so I could be in control and pace. Medical care has mostly been supportive and informed. My head knows that overdoing things and not pacing will trigger a difficult several days. My heart says sometimes I just want to do something and now I've retired I can - and rest as long as I need to afterwards. Environmental factors are highly significant. Friends know to remove air fresheners before I arrive and I am excused decorating. Gloss paint and sealant trigger relapse. Organic fresh food helps energy, when I eat less carefully - and sometimes I just 'want' to - I do notice. I have found support from a nutritionist invaluable and still see one when I have a relapse. It's a still misunderstood illness. I wonder sometimes if there is shame attached to it. An invisible impairment much of the time which has benefits but can make others 'forget' we have to manage things differently. As has been said we manage it, adapt and live to the best of our ability. for everyone affected. Whether we have the illness or support someone with it life can be a challenge. I'm lucky I can do most of what I want to by adapting how I do it but I know many are more seriously impacted.

My husband had to retire from full time teaching 26 years ago with ME. At its worst he was bed bound and could not even lift his arms to hold a pen or put his own clothes on. In a way he was lucky because it was diagnosed quickly. Unusual at that time. Fortunately he made a gradual improvement . Several years later he was able to return to teaching for two days a week ...admittedly at a very easy to teach at school. He could not do much for the rest of the time as he was too exhausted. He retired fully a couple of years later. He still does not have the energy he used to have, but then he is much older now!

We feel that his improvement owed much to going totally organic and also taking Selenium ACE supplements.

Our garden borders a field and sometimes after spraying the flu like symptoms reappear for a few weeks. (Luckily he does not seem to spray as much now).

The ME has also seemed to trigger a lot of food intolerances so every packet has to be carefully scrutinised.

Just thought I'd post because the organic and the selenium might be worth trying for anyone else suffering.

Yes, I think you're right rosesarered It seems to constantly slip under the radar. Very little research done until more recently. Makes me wonder, being of a cynical nature, who's afraid of what being revealed about the cause/s!