Jan Q. help!

[JAN Q]

Hi all , I am having trouble sleeping at moment and feel tired out very quickly when I do the smallest of chores, any suggestions with regards to possible medication. I am struggling in as much as I have deteriorated a lot in the last month mobility wise and now my speech going quickly,feel very down and as I live on my own and feel family don't realise that I am struggling so much as they don't see me trying to look after myself, I don't feel as though I can cope at moment. Sorry to have a moan I have been so independent until now and suddenly I am in need of some help. X JAN Q.

[Dude]

Hi Jan Tiredness comes with the illness, I'm afraid. No one will appreciate the daily struggle. You need help. Maybe give something for the family to read on mnd . Speak to mnd connect and your social worker. Dude x

[JAN Q]

Thank you for your quick reply, it's good to speak to people who understand, I read blog every day for information and I have found it very useful, have tried to get family to read up on mnd but somehow I feel that they still don't fully understand what is happening to me. Will speak to mnd connect . X JAN Q.

[John14]

Good Afternoon Jan,

It must be difficult living on your own and I know what you mean about becoming tired after performing household chores, I'm finding most beyond me now. You could ask your GP to give you something to help you sleep, Zopiclone seems to work well and should help you through a difficult patch and you can always come on line here for company.

John x

[Terry]

Hi Jan:

If you don't sleep well than you will have problems during the day time.

I listen to talking books during the night as it takes my mind off things.

I also take Larasipan about every third night to relax me and help me sleep.

I could not imagine what some of you go through living on your own.

Love Terry

[Ellie]

Hi Jan,

Sorry you're feeling low. It's really hard when you're losing the ability to do things you did automatically before. You grieve for what you lost.

Sleep is so important, both mentally and physically. Do you know why you're not sleeping; pain, sleeping position, stress?

Your OT can help with aids. Could a family member spend time with you to get a sense of how difficult your life is practically, let alone emotionally?

Thinking of you,
Love Ellie.

[JAN Q]

Thanks Terry, I appreciate your reply very much it is comforting to speak to someone who understands, and think I will need to see my Dr for some help with my sleeping ,as for the last few nights I have hardly slept at all , very grateful, Jan Q.

[JAN Q]

Thank you John, I am grateful for your reply and will contact my Dr about something to help me sleep , xxx Jan Q.

[JAN Q]

Hi Ellie, so nice of you to reply and I would love one of my family to spend just enough time with me to see how I am struggling, funny isn't it when they visit it is not for very long so they only see me sitting comfortably and think I am ok. I think my sleeping may be because I am getting very worried now about my deterioration so possibly it is stress related, thanks for your support I really appreciate it. Xx Jan Q.

[miranda]

I don't do much now but just going out and trying to communicate exhausts me. When I was more active, I eventually learned I had to pace myself and allow time to recover. It must be tough to be on your own.