insomnia

[MF31]

Hi everyone I was wondering if anyone has experienced insomnia with illness, Pete used to sleep a lot and now for last 3 nights has not slept which also means I haven’t and both struggling as he is constantly wanting me to move him about which is becoming more difficult as I’m getting lots of pain in shoulder and tiredness as well doesn’t help.

[Paul_and_Sue_Wood]

Hi,

This condition affects us all in many ways and sometimes the symptom can be a bi product of another symptoms.

Not sleeping could be because he is not comfortable and cant relax. Try to find out why?

Next you are hurting yourself in moving him, so it may be now time to get an occupational therapist involved to aid both of you with devices to make you comfortable.

Hope this little bit of advice helps.

Paul

[MF31 in reply to Paul_and_Sue_Wood]

I do have a Sara steady for him but on my own having to get him up and in position to stand is very hard on my own as we have two carers that move in for shower and then for bed at night he just doesn’t seem to comprehend that I can’t do it all 24 hrs on call I don’t want it to sound all about me because it not but if I crumble there be nobody to do this.

[Paul_and_Sue_Wood in reply to MF31]

Hi, welcome to my world also...

Ive been looking after Sue for over 12 years and over the years ive had to introduce new ideas and systems to aid both sue and me. This has been a challenge and still is sometimes as she feels vulnerable. But the local hospice has been brilliant for both of our sanity and getting us both to realise whats best.

Ive found talking about the future and pointing out bluntly what this means for both of us both good and bad so we can appreciate what we do have and how we can cope has been very useful.

If you haven't try and get a referral to a hospice and go with your partner.

Remember you are two people and both have requirements.

Hope this helps

Paul

[MF31 in reply to Paul_and_Sue_Wood]

thanks Paul Pete is under hospice so may have to have a chat with them about things I’m fine if he got his sleep pattern back and slept at night I just get so tired and snappy which is not nice for either of us.

[Paul_and_Sue_Wood in reply to MF31]

Hi,

I had to eventually move into a separate room for my own sanity and brought a monitor so I could keep an eye on and hear if there are any issues.

Paul

[MF31 in reply to Paul_and_Sue_Wood]

I have done same Pete in hospital bed in room downstairs I’m upstairs so we have a bell system 🤦‍♀️

[Derkie54 in reply to MF31]

Hello,

It doesn't sound all about you, don't be hard on yourself you're doing a great job I'm sure. The focus understandably is on the MSA sufferer and we, as carers are the support act and accasionally feel a bit forgotten. but If it wasn't for you where would Pete be ?

My wife also has a Sara stedy and like Pete she sometimes struggles to pull herself up. She has no mobilty at all and as her sole carer I'm frequently lifting, pulling or pushing her into position which will result in more aches and pains I'm sure as time goes by.

The thing is we were never trained for any of this, we may think we could be making a better job of it but we're doing the best we can, can't do any better than that.

Take care.

Derek

[Hidden]

Chat to Msa trust nurses? Kx

[MF31 in reply to Hidden]

I think this may be my next move it’s so distressing at times