Why do I feel so guilty?

Dale you are stronger than you think? I have not yet learnt to to say no to things I know I can't do. Good on you!

Hi there Dale

I can understand how you feel - in fact I think everyone on this forum can relate to you over this one.

It's just so frustrating that we can just not get it over to the OTHERS that we are ill and cannot cope with normal things in life like we used to be able to. Why the heck can't they understand:steam:

I think we have just got to be completely straight with folk and say 'I would love to be able to do that, but I suffer from ME and it's more than I can manage without making myself unwell'.

SO JUST BOG OFF!

(Perhaps forget the last bit! :shock: ) - Can't believe I said that!

You've obviously got to have a good long talk with your Mum, (and sister)Dale, and explain the illness more fully to her, because it's quite obvious she doesn't understand the complexity of it. In fairness, it must be difficult to understand - as we can all look so well as times and appear to be functioning normally even though we actually feel like c***.

We must all learn to be more asssertive and not feel guilty at saying NO!

Here endeth the first lesson.

Katie x:ok:

Hi

Thanx for the swift replies :P

It is the first time I have said No, Lou Lou, but you are right I was strong to do it. I probably just need more practice at it :wink: Then I wont feel guilty :weird:

I thought I had done the long talk bit Katie, I think cos they dont see the worst of it and I can put on a good front they must think it has either gone or getting better. I need to tell them about the remission pattern again!! :oops:

Thanx a lot peeps

Dale xx

PS anyone know if Donna is ok. She has been quiet lately.

Dale, we feel guilty when it is our family and especially our parents because we had it drummed into us from an early age to do as we were told (by mummy and daddy) so we feel like naughty children even as adults, when we don't conform.

I have a printout that was given to me from the National ME Centre when I went there some years ago. It is called 'A Guide to ME for the Non-Sufferer' and it is intended for friends and families of sufferers and is written in language they can understand. Whether they take it in and accept it is another matter, my sons never managed it. :roll:

Anyway, if anyone would like it I could type out the first page (the rest is a bit waffly) and e mail it to anyone who is interested. If you want me to then just pm me your e mail address. :D

'Spect Donna is busy doing the Pony Club bit - either that or she feels she is being corrupted by all these rudey dudey nurses!:sheep: - nearest I can get to a pony!

Another interesting group that has useful info for us and carers is Brame. I find the info very useful it has helped some of my family and friends gain some understanding. don't think anyone can fully understand unless you are suferer.

Dale - you are quite right to say No to your Mum. I had to say No to my sister as her son is in rehab about 130miles from us and she had asked me if i could drive her down once a month - this was before my illness and i said i would do it once every 3 months,

She didn't take into consideration that my Sundays are precious as i worked full time and had small kids and a house to clean :P

When i came down with CFS i told her i couldn't do it and she said let me know when you can do it and she kept asking me, obviously she had no insight into this illness but now she has backed off.

People even family don't understand this illness. My Mum is 71 yrs old and has arthritis, if i say i am achey she'll just say, so am i, it's so frustrating as she is 29 yrs older than me and is bound to have aches due to old age. I still manage to get her little bit of shopping weekly and she never asks if i can manage. Don't get me wrong, she is a great Mum

My rant over :roll: :lol:

Teedie

xxx

Teedie, if you would like me to e mail you the National ME Centre leaflet 'A Guide to ME for the Non-Sufferer' just PM me your e mail address and I will send it to you. It is very good. :D

I too find it so hard to say no to things. I have 2 children aged 10 & 7 and I feel so guilty :roll: all of the time for not being the mum I want to be so when they ask if their friends can stay over I always give in and then suffer for days. I am so frustrated :x though to be housebound at 29 I have always been into hair,makeup,nice clothes, looking good etc and now i am lucky if I can actually get dressed most days and thats only into louge suits. when i do manage to go anywhere i nearly always end up fainting which i find so embarrasing :oops: and it is making me not want to go out. Why is ME such a unpredictable condition :?:

Lv to all

nix

Hi Nix,

That's awful news for a 29 yr old to be housebound. :evil: I can empathise with you with regards to the kids, i have 2 wee ones aged 9 and 6 and it is difficult when they have friends over. I posted the other day complaining about that. I can't handle too much noise and you do find yourself being really grumpy :? and then when they are asleep you feel so guilty.

It's hard for kids to understand. I wonder if there is a book for children to explain this illness. Maybe we could use the little energy we have and invent one 8) Good idea :!:

I definitely wouldn't say yes to sleepovers, you have to think of yourself and your health.

Do the friends parents not know that you are ill :?:

I thank my lucky stars that i don't have Chronic M.E :evil: It must be awful.

Teedie

x

Thanx for the replies :D

I have told my sister I cant do the Hen Party. Couldnt gauge the reaction so I have printed some stuff off the web for her to read.

Alicia I have sent a pm to take you up on your offer :lol:

Teedie, you are right (but I reserve the right to retract that!) Family dont understand this illness. Maybe they find it hard to comes terms with us as we are now cos they know how we were when we were well. :yikes:

Plus we have spells were we are well so that must be confusing :whistle:

Nix It must be so hard for you. Like Teedie my ME is mild but I dread it getting worse. I do have spells when it is chronic but thankfully it is rare..Touch wood :erm: Which is why I need to learn to say NO! :doh:

Dale xxx

Dale, thank you for the PM. I have sent you the info. :D

Hi everyone

Nix, I think in view of the fact that you are really so poorly, you must find it in you to say 'NO'. You are just going to make yourself worse. I know it's easy enough for me to say that though - but deep down, we all know that it is the only answer.

Teedie, what an absolutely brilliant idea:wizard: - a book for children explaining how a mummy with ME feels. There would certainly be a market for this. Maybe we should all get our heads together and write one - J. K. Rowling just watch out! :ok:

I would say that all of us who suffer with mild ME in fact could also say that we suffer from Chronic ME. Those who suffer really badly really are acute sufferers. Would you all nurses agree? :nurse:

I certainly consider myself to be a chronic sufferer.

Take care everyone.

Katie x

I wouldn't class myself as a chronic sufferer When i am at my worst with the aches and pains i can still drive the car and get upstairs so i'm hoping i won't suffer too long.

Although i am not fit to go to work. That's my :nurse: opinion :!:

Teedie

xx