how to cope living with fibro

[NBeard94]

My mum suffers with fibro, and i want to understand more about the illness, but also help more. I was also wondering about coping with the moods? finally, i want to know how to train to become my mums carer

Any help appreciated, thank youu!!

Nic xx

[Catsrule]

Hi Nic

I don't know anything about the caring side I'm afriad, but its great that you are interested in learning more about Fibro. I've had it for about 6 years now and it really turns your world upside down and I don't think I am the person that I used to be. It drags you down having to live with the pain and fatigue constantly and it has a negative effect on the family as well. I try and stay positive and live a relatively healthy lifestyle. There are some very informative people on this site that I am sure will give you some great advice. My advice would be to research Fibro as much as you can, be supportive but try not to take your mum's independence away. Good luck x

[Hidden]

my young daughter who 13 has had a carers assessment from social services and barnardos, and my hubby has also had an asessment , you could ask for one of these, All you can do is read some posts on here, but dont forget as much as you love your mum you need space to have a good life as well. Your mum must be very proud of you for thinking of her

[lolly1970]

Sorry I'm not sure about how you become a carer either but I do wonder if her moods are worse because she feels that no-one understands her condition so listening would be a really good start. I always explain it to people by asking if they ever remember their teacher standing them in the corner and telling them to put their hands out to the sides and keep them in the air. Do they remember that unbearable burning sensation that builds up and the need to put their arms down to relieve the pain but the teacher not letting them so the pain just got worse and worse. If that never happened to you then try it see how long you can keep your hands up. That's what living with fibro is like but head to toe and 24/7 with very little relief. Understanding what she has to live with every day will help you to care for her but whatever you do don't discourage movement, keeping moving is crucial to fibro the longer we stay still the worse the pain and stiffness is, that's why it's at it's worst first thing in the morning. It's lovely to hear someone so keen to help, your Mum is really lucky to have you and I'm sure she appreciates your efforts immensely. x

[Hidden]

Hi Nic

It's great that you are taking the time and trouble to learn more about this condition to help your mum. Each of us is different, and the illness is different every day. That's one of the hard things about it. Learning to live with the unpredictability, managing it as best you can and then still suffering from a flare anyway can be very upsetting. Knowing you've got this thing that is so poorly understood by the medical profession and the world at large, is very upsetting.

I think, for me, the most helpful thing is people not assuming that they know what the best thing is, but just asking me, simply, what the most helpful thing would be for me today. Your mum may be struggling with the whole idea of needing help, and needing to rely on another person to do things she used to do herself. I don't find it easy to allow other people to get on with jobs and do them their way, when they are tasks that I would always have done myself.

I do think it is very hard for parents to 'hand over' to their children, it feels like it's the woring way round. We are 'supposed' to look after them, not they look after us. It takes time to adjust, but she's lucky to have you, and I'm sure she knows that.

Good luck with it all.

Kaz

[pottydog]

What a lovely post! I agree with all that the others have said too.

As a mum myself, with two daughters of 21 and 19, and a son of 13, I can say that them caring for me would be hard for me to accept, for the very reason Kaz said.

But sometimes being able to let someone help you is a gift in itself.

Inside your mum is the girl she once was too. She will probably be very anxious, possibly feeling guilty that she can' t do 'her job', and having her daughter be educated to her condition and an ear will be of huge support in itself.

Good for you girl, you are a credit to all.

BB