Just want to say hello and thank you.

I agree with your sense of somehow being a fraud and not being understood and the difficulty of accepting that in a way that doesn't lead to feeling that oneself? When I had a couple of good days in a row last year (that used to happen!) I'd even think it myself. My head would be clear and I'd even start thinking about applying for jobs! There wasn't anything wrong with me after all then, bam, back to exhausted and brain fog. Its the fluctuations people don't understand, and that I feel, make us doubt It too. I find myself trying to justify myself so many times as with this condition you look "normal"

In regards family and friends, the cfs/me clinic gave me a booklet for people who are classed as "carers" to me. That could be helpful. Also try quoting facts like how many people have this and symptoms that most share. Have you a cfs/me clinic referral?

At the end of the day its A tough condition and we all deserve a medal for persevering with it!

Best wishes

B

i wish i could give you a tip but i have the same problem no one understands the illness as you look OK if you had broke your leg everyone would be very sympathetic but i dont think people will ever understand the illness unless they have gone through it thereselves.

Somehow you learn to live with it, make something of a lifestyle, get satisfaction fullfillment happiness as best you can when you can. Many years later l was diagnosed with cancer, had chemo, radiotherapy over a year, and there was a level of suffering debility, but for me, the symptoms didnt come near to the affect of ic, re pain, fatigue, mental torments, restrictions on lifestyle, not saying for others its like that, but for me it was. Yes despite far far less suffering over a much shorter period of time, l was inundated wtih help and support, all came to me, gps visiting,nurses, benafits people, support workers, whilst other people were so sympathetic, as is society. Some diseases although causing serious affects are little understood or even cared about that  much, think some are known as orphan diseases, minimul money on research.people  dont see whats going on inside your body or mind, if we,d a red raw arm or leg or bleeding seen, its` oo` sympathy, inside your body can be worse but not seen so no response or much care.My symptoms did improve with treatment, still have frequent days of tiredness fatigue sleepy, on reasonable days try to catch up on jobs or go out, then shattered next day,aches and pains, nausea or flushed up, feeling half dead, fit for nothing, still bored, frustrated, its difficult, l come to terms with it quite a bit, but not completely, just do best l can, and if it doesnt suit people, too bad, doesnt suit me either, but you cant help it, if you know your true to yourself you cant help what others think of you. 

l,m not sure how you get through to people, even family at times, 

Beverley l know that feeling of having a few reasonable days and then questioning yourself, in part due to doubts others including gps give you, so make plans,  push yourself to do things,  and next day wrecked, and yes l get brain fog with it, even speech bit slurred at times, l know an old lady with all manner of health probs, rings me and wants to talk for an hour or more she loves that, , for me even that is hard work, l5min ok,  as for going on skype as she wanted me to, no,  as l dont look good when fatigued either. Today a reasonable day, hence long ramble. Mo, l wonder if letting family read others accounts of your condition might help, not sure, But best wishes.  

It's strange, but if you had MS, Diabetes or any other chronic condition would you really tolerate your family taking this attitude with you?

CFS is a recognised debilitating physical illness, so your family need to get educated about it if they want to be of help to you and if they don't, don't waste your time or energy on trying to deal with their problem, as it's precisely that, their problem if they can't be bothered to aquaint themselves with the facts or deal with the situation that you're ill..

You've got enough on your plate just dealing with your illness without the need to be sorting out their attitudes. I'm sorry to be blunt but there's no reason to have to appologise for being ill, none whatsoever.

That's a very good idea to have a talk with the Thistle Foundation and it might be a good idea to take your husband there as well, he needs to learn the situation as much as you...

If you start understanding more about your CFS and start treating yourself more kindly and work within your limitations, others around you will start to understand  your condition better too... CFS is a dreadful illness as we all know, it's not a "non diagnosis" it's a very serious illness indeed.

Anyway, sorry to have a go , there's plenty of support and advice on this forum and at least you'll get all the sympathy in the world here...

All the best

Michael