Struggling

[Lythgoe81]

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.

[denise]

Hi
I'm not a suffer but my husband is and I have to say some days I feel that way. It's a struggle to get myself moving and then motivate him. I just wish we could both give up. Then other days do not seem quite so bad and I can really give him a kick and we get the day going. It might not be a thrilling day, it might not even be wonderful but we've had perhaps a laugh or a shouting match and it proves we are alive and kicking.

I know what you mean despair can set in and it's horrible. I dont know what the answer is but you're not alone. We are all going through it in different stages.

love and hugs Denise xxx

[Lizzie]

Hello from a fellow sufferer.
I think what you are feeling is very understandable, and will be experienced by many of us. After all, everything changes in our lives, and without much of a future to look forward to. I certainly have my down times, and have thought a lot about what I would do if euthanasia were legal.
I can no longer talk, and for someone who’s life and work revolved around communication it is incredibly frustrating and isolating. However, enjoying what you can in life is a good plan. Finding humour where you can and knowing that you’re not alone.
I think it would be very odd, given our diagnosis to never feel depressed. I hope you can work through it, and enjoy the little things.
Best wishes to you.
Love, Lizzie x

[Lynne K]

Hi Lithgo81. I’m sorry that you’re having a down day. Would some time in the sun lift your spirits? We’ve all been indoors too much over the last year or so because of the COVID-19 pandemic.

I usually always keep myself distracted from any negative thoughts by not giving myself any spare time. I read for hours most days on my iPad and every now and then watch something on Netflix or the TV.

But recently it’s been harder for me to keep upbeat. We had a drive out yesterday that I enjoyed so I realised that for me it’s not enough fresh air and sun that has effected how I feel. But I also remembered a time many years ago when I felt washed out. On that occasion I started sprouting falafel and ate them frequently (on sandwiches; with eggs or on salad) and after a few days I felt energised and much more clear headed). So I ordered some organic falafel a couple of days ago (it’s arriving Monday). It cannot do any harm as these sprouts are very very nutritious. Worth a try if your carer/partner can do some sprouting for you (the seeds go in a big jar with cheesecloth or similar on the top, secured without an elastic band. Then have to be rinsed every day. The jar ought to be set in a warm bright place but not in direct sunlight). I can still eat these on sandwiches but then could be blended with other food if you need smooth food then at least you’d get the nutritional benefits.

I hope that one or other of these suggestions helps you. But if not then maybe you could speak with your GP regarding antidepressants. Love and hugs, Lynne x

[Ellie]

Sorry to be having a moan

Please, never say sorry for being honest - and thank you for being so.

I just wanted to know if others have felt the same way.

We have been dealt a horrible blow - it's bad enough to be told you've a terminal illness, but also that same illness will rob you of practically all of your movement and probably your voice, is just horrific...

For me, the hardest thing is knowing, or is it thinking, what a burden I am on my family - did my husband think he'd be putting me in and out of a wheelchair when he said "in sickness and in health"?? No, but it is what it is, so we get on with it through good times and bad, and we have waaay more good times than bad. Talking/communicating is so, so important.

I don't mean to sound patronising but it does help somewhat to have something on which to focus - I do (free) online courses from a variety of providers, that helps with my self-fulfillment and esteem. But, 6 months after my diagnosis, I had counselling for a few months, which helped me enormously, and I definitely was not a 'bare all' kind of girl back then 😯

Like Lizzie, I try to have a good laugh everyday and I know there are times when I'm my own worst enemy 🙄 so I give myself a talking to...

I hope you have lighter days ahead and please know there are people you can talk to and/or medication you can take to improve your mood.

Best to you.
Love Ellie.

[matthew55]

Hello, one year in to Bulbar and that's most days for me. I have already put of leaving three times. I live on my own and my family is far away so every day is a struggle for me. I just had the thought that if there is an afterlife they must have amazing concerts evey night. 😁

[GaryM]

I feel like this quite often Mark. The illness is destroying my life and Louise's and I absolutely hate it for that. I posted something a few months ago about not having had enough of life yet, but I'm beginning to change my mind. I feel like Louise is just keeping me alive now.

[Gordan1111]

Hello. it's a kinda twisted hell aint it. I don't like sunny days - prefer when it's pouring with rain! Makes me less grotty about being stuck indoors and feeling useless

[Mary C]

Hi,It can be tough when we have so much time just sitting and maybe overthinking.
I still am able to speak but who knows for how long.I love sitting outside or going for a push or a drive in the country.
I try and occupy myself with reading, watching stuff on tv ,Also lucky my adult kids live local and 7 grandchildren plus friends who all visit.Like many others I have down times and a shed a few tears.I then try to distract myself by googling ,Chatting with my hubby.
I read posts here about people living alone and unable to speak ..That has to be a tough situation to cope with.
I have started recording a bit of a biography for family members while I can.Is that an idea if you are able to ?Or able to write your memoirs.
I also have nhs counselling which is with a Psychologist who has experience working with people with life limiting illness so that helps too.Would that he an option for you.The hospice team arranged this for me.

Like Ellie mentioned have you looked at on line courses?
I like to listen to music and you tube speakers .Do you find going out anywhere lifts your mood.
Do you have friends or family that can visit now we can sit in the gardens.?
I have started trying to sort photos and writing on the back of them(I know everyone stores stuff on iPads etc but these are from years ago.)
Its difficult as we are all at different stages of MND and those who have multiple physical losses already are often able to share their coping strategies on here .I read them hoping I can learn from those members as my journey progresses.
I have trawled the net trying to get ideas on how to occupy myself as I progress.
Have you got a hospice you are linked to?They are usually able to offer advise and support if you can explain how you are feeling.
Wising you all the best
Mary

[GaryM]

Hello. it's a kinda twisted hell aint it. I don't like sunny days - prefer when it's pouring with rain! Makes me less grotty about being stuck indoors and feeling useless

I thought this the other day. During the winter months I was looking forward to spring and the better weather. Now it's here it's just emphasising all the things I can't do.

[slp]

Well done for being brave enough to reach out and admit that you are struggling x I am normally very positive and upbeat but have to admit that the last few months of lock down have taken their toll and it must have been very difficult for you being so newly diagnosed. With the weather now improving maybe getting outside and making a small plan of something to look forward to. Maybe something in the garden where you can see it. Even some pots with summer colour or bird feeders. I have some that I can see from the kitchen window and if I sit outside they don't seem to mind my chair. I can listen to a book and watch the birds. I hope that you feel better soon x there are good medications that can help lift your mood x don't be afraid to try them.

I am off to take some of my own advice

much love Sarah xx

[GaryM]

On a more positive note, I think that if I manage to get my saliva under control then that would make a huge difference to my enjoyment of each day. It's not much fun having friends and family visit when every fifteen minutes I have a choice of having a suction probe stuck in my mouth, spitting it out into a bowl or risking a choking episode by attempting to swallow it.

[Ellie]

GaryM I can't imagine how draing that is for you, Gary, both mentally and physically. I hope with all my heart that you find something that works, and soon. xx

[Laticsmon]

Hi

I think we were diagnosed at the same time and I understand how you are feeling. I had a couple of bad falls a few weeks ago and I remember thinking ‘is this my life now’. People have been nice but they don’t know what to say to you and I have to admit at times I don’t know what to say to myself. I have been seeing a psychologist and that had helped a bit. I just take each day as they comes. But I do have bad days were I can’t get stuff out of my head you can always message me if you want.

[Heather R]

Know the feeling. As the weather gets better and lockdown eases a bit, other people are resuming doing things that I can't do anymore. And my voice so distorted, it's difficult to feel human and myself when I attempt to talk. Love to us all feeling this way x