Fibromyalgia Action UK
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Well the Saga goes on!!!

Yesterday a person from Adult care came to see my husband about how they could help him to look after me! They said to him on the phone a week before that it was only him they needed to see. So as they were coming in at 9am it would be best I stayed in bed,as it was private and would make him feel more free to say what he wants to say.

Well she arrived at 9 and about 10o-clock i needed to go to the loo,so I got out of bed,now normally my husband would come upstairs to help me across the landing (Floor boards creak in our house so he knows when I am up ) He never came and I could hear a faint wispering from the I carefully went to the bathroom,and when I returned to my bedroom was sure he would say " I just need to help my wife as she cannot get into bed by herself " but no! he never came I wrapped a blanket around me and sat on the side of my bed....One hr later I heard the front door shut and he then came up to see how I was. He said " Oh I didn't like to interupt the meeting so thought you would be OK. He is too shy for his own good sometimes. :-)

I said to him they did not even see me so how do they know,what you need to do ? He said well they were more worried about what it is doing to me, because he has PTSD.

I am telling you all of this because for 20 years or more I looked after my OH with his illnesses and my aged mother and I never got any help what so ever! Now they are so worried about him they are sudgesting I go into a home once a month or so for respite ;-(

I had CFS and fibro when I was the main carer and now I am worn out,Dr says I have had a physical breakdown. maybe if I had had the help I would not be as I am now!

The only good thing is that maybe now it is all changing carers might be recognized for what they do and get help. :-)

I am sorry to have gone on a bit but I only have you guys to speak to about this,and my memory the way it is I may have already said all this before !! If I have I am so sorry, it is just another thing to be off balance x

I hope you are all keeping warm and dry in this cold spell and send Gentle Hugs to all who need them x x

Rainbow x x

8 Replies

So sorry to hear all this rainbow,

It seems like you have been dealt difficult cards in life. You have worn yourself out caring for others and now you are needing help and it sounds as though the "powers that be" are making a meal of it.

I would have thought it would have been better for them to see you when they visited and for them to perhaps see what your husband does for you. If he'd heard you go the loo surely he could have asked to be excused while he made you comfortable again in bed. Surely that would have helped his cause more, showing that he does indeed do things for you.

How do you feel about their suggestion that you have respite care once a month? If it were me I am sure I'd have very mixed feelings about it all. I'd want my OH to have the opportunity to rest but I'd be nervous about going into somewhere strange.

I can't really offer any helpful advice or suggestions. All I can do is say that I feel for you in your situation and I hope that you and your husband get all the help that you need so that you are looked after properly without your husband's health problems being compromised.

Life ain't easy is it?

Take great care of yourself. Love and hugs Saskia XX


Hi Saskia thanks for your support it means a lot.

I said to him after she had gone "did she not want to see me then? " he said Oh no just filled in forms about your care. I also asked him Why he never came up to help me as I was just sat on the edge of the bed....he said he didn't think she would stay so long!

I have had a chair put in my room so that if I get up and he doesn't hear me I can sit down but it is now piled up with Ironing and such. It is so frustrating as I cant walk far at all and then only when assisted.

As for respite my mother is ina home because I cannot look after her and I have seen how she has to wait etc; and I am not prepared to go there,in fact it frightens me that they want me to do that.

The copy of the forms he did last week came today and I asked if I could read them I was shocked how my OH feels about looking after me. I cared for him for over 20 years...and he has looked after me since July and he feels it is all too much for him with his illness too!!

Well I better go babe thanks for chatting to me <3

Gentle Hugs

Rainbow x x x


oh hun! I am sending you a hug! {x]

I hope they sort out things as you want them to be.

I'd consider the respite, it might be worth it.




Now they decide things may be having an impact on your OH, how stupid is that. Had it been me I think I would not have gone back to the bed but just sat on the landing floor and been done with it. SOrry I cannot offer decent treplies tonight and not much of it makes sense but my head is in a pretty bad place right now xxxxx


Thanks Ozzy hope you feel better soon x x I cannot afford to get on the floor at all as the last time it took nearly an hr to get me up.

Gentle hugs x x x


I know what you mean. I often have to crawl to something that I can pull myself up on xxxxx


I read your statement with interest. It is said that people who care and worry about other people (people pleasers as is said) get fibro. I too cared for my mother with dementia and also had to hold my job down. It is great that carers are getting the help that is thoroughly deserved. It is also lovely that your husband it by your side. A lot of fibros marriages end in divorce because their other half cannot cope. As for the respite it might do you good to get away for a couple of days. I personally would not go. My home is my castle. But that is me.

I hope you are feeling better today. I think the cold weather does make us worse. I know it is silly but my toes are playing me up. What next.

Take care and keep warm.

Bye for now love A xx


Thanks every one for your help in this I am going to try to get someone in to do the housework then my OH can do the care side or get a carer in and then he can do the housework...It is obvious he cannot do both. Don't get me wrong he is amazing but not super human and he also is still ill himself.

Sending Hugs to all of you x x x

Rainbow x x


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