Struggling

[Deb]

Hi Lythgoe81

Please don't apologise for being open about feeling low... we all know how you feel and well done for your honesty.

I try to stay positive and take one day at a time but i don't always succeed. I find when I get down or think about what I used to do its hard to lift myself. Lockdown has made things harder as we have all been unable to see family or friends.

I do enjoy reading,listening to music and watching sport and films and I l have loved sitting in the sunshine this week. I find it helps not to look ahead as noone in life knows whats around the corner and MND progression is unpredictable. However, there are times I worry I'm a burden but I remind myself this is as good as it gets.

As others have said having a laugh is a tonic.. . sometimes there is some dark humour in our house. I hope you don't mind me suggesting that talking to your nurse about meds or counselling might help you.

Sending love and hugs to you ( and everyone !)
Debbie x

[Banned]

Flip it around! We are all going to die, including newborns!

Now that you have the opportunity to do exactly what you want, don't blow it. We all have constraints but the opportunity is still available.

https://www.youtube.com/watch?v=-8I5TtNfjBI

[richard]

Lythgoe81 You never have to apologise on this forum for being open and honest about your feelings. We all understand and every member has felt or are feeling just like you. MND is the most cruelest disease, we lose everything except our mind and alas we can’t all be a Stephen Hawkings.

Take each day as it comes and try and do something you like and most importantly try and find something to smile about. Remember it is also very difficult for your partner. Try and do something that can lift them as well. Memories of some fun things. It is good to laugh together and also it’s good to cry together. Thinking of you.

Richard

[billy106]

We all have our moments , usually 24hrs a day if you dont distract yourself. I watch old comedies on youtube and now playing bingo .download the Gala app . Distraction is the name of the game.

[SueM]

Sorry to be having a moan, I know everyone here is going through exactly the same.
I was diagnosed 6 months ago & I really do try my best to keep positive & focus on things i can look forward to.
But lately I’m feeling so very low & can’t seem to shake it off, my life just feels like an existence, watching life pass by, unable to do hardly anything, relying upon my partner for everything.
ive always loved life, but some days would rather not be here anymore.
sorry for the depressing post, I guess I just wanted to know if others have felt the same way.

I’m so sorry to hear you are struggling, for a while now I’ve been seeing a Psychologist and am having Acceptance and Commitment therapy (ACT). I’m finding it very helpful, which is a bit of a surprise to me as I didn’t think I would ever consider therapy.
I completely understand where you are coming from, as many of us do. I hope you can get through this, we are here for you.
Take care Sue x

[Barry52]

I’m so sorry to hear you are struggling, for a while now I’ve been seeing a Psychologist and am having Acceptance and Commitment therapy (ACT). I’m finding it very helpful, which is a bit of a surprise to me as I didn’t think I would ever consider therapy.
I completely understand where you are coming from, as many of us do. I hope you can get through this, we are here for you.
Take care Sue x

I’m pleased that you are finding the ACT therapy helpful Sue. The steering group had a meeting on Thursday last and it is encouraging to see the success of the role out across the country with more MND care centres recruiting new patients. The lead drivers of this therapy believe it will become a standard offering for newly diagnosed patients provided the NHS funding continues.

[Banned]

Richard is correct in that we shouldn't obsess on the black holes in our lives, they will only consume us. Look at the stars instead, maybe a partner, sibling or child/grandchild or anyone with the heart to support us in our hour of need. Be humble to their needs and spread the burden of care as much as possible to avoid a crisis.

This policy has worked for me for years.

https://www.youtube.com/watch?v=GC5E8ie2pdM

[Barry52]

Richard is correct in that we shouldn't obsess on the black holes in our lives, they will only consume us. Look at the stars instead, maybe a partner, sibling or child/grandchild or anyone with the heart to support us in our hour of need. Be humble to their needs and spread the burden of care as much as possible to avoid a crisis.

This policy has worked for me for years.

https://www.youtube.com/watch?v=GC5E8ie2pdM

Thanks for sharing this music video Graham. It brought back fond memories of when I met my wife and this song had been recently released. We were always first on the dance floor and we had developed an in-hold rotation dance which increased in speed when the saxophone cuts in. The last time I tried this was about 5 years ago and my wife had to support me so the lead role was reversed. Happy memories that you can’t take away.

[Bowler]

Thanks for sharing this music video Graham. It brought back fond memories of when I met my wife and this song had been recently released. We were always first on the dance floor and we had developed an in-hold rotation dance which increased in speed when the saxophone cuts in. The last time I tried this was about 5 years ago and my wife had to support me so the lead role was reversed. Happy memories that you can’t take away.

You’re right Barry music has the ability to bring back memories that can never be taken away.

I now have a vision of you twirling Sue ( I think that’s your wife’s name ) around whilst belting out “ you’re the best “ 😁

[denise]

Of course Barry she could be twirling you around taking the lead 😚

[Lynne K]

Thanks Graham for the YouTube video. Uplifting, Lynne

[Banned]

Yes, Barry, we can relive the best memories any time we please. I am lucky enough to have vivid good dreams too.

It is always a great pleasure to watch other people enjoying life too, I take myself there...

https://www.youtube.com/watch?v=PpNiNbyr_WA

https://www.youtube.com/watch?v=4_06eI_NpiA

https://www.youtube.com/watch?v=nMPWcrMGFAE

[Barry52]

[QUOTE=Graham;n49739]Yes, Barry, we can relive the best memories any time we please. I am lucky enough to have vivid good dreams too.

It is always a great pleasure to watch other people enjoying life too, I take myself there...

Graham,

I also have vivid dreams and I think it is due to medication. Funny how I never have MND in my dreams.

I guess that the Girls of Wolfpac are the modern day version of Go Go dancers in the 60’s.

[Beemer]

Strangely, I also get some enjoyment watching other people enjoy themselves .
I bought the Oculus 2, VR headset to watch videos and play games, but love watching my wife and daughter compete at Beatsabre , a music game with light sabres. It is a very arm intensive workout for them, absolutely a useless game for me though .