Positive strategies & inspiration needed

[SarahWP Forum Member Find all posts View Profile Close SarahWP]

As some of you know I was diagnosed in August last year (2019), aged 50, and since then my progression has been pretty rapid. I can barely walk a just few steps with a zimmer, am rapidly losing strength in arms, and can no longer speak or eat at all. I need help with all transfers and trips to the loo and will soon be using hoists. My weakness is now such that slight deteriorations have a big impact as it’s one step closer to total disability. And the loss of what very little remaining independence I have.

I would say I coped pretty well with everything until recently and the reality of what my future holds is really kicking in and suddenly I’m feeling so depressed, desperate even. I had a charmed life, being very happily married and a good life style. My wife is being amazing but is also struggling, naturally. I always said as long as I was alive and had a decent quality of life I was ok. But I’m not. Suddenly I’m stressing about getting to the toilet (even with carers coming in 4 times a day) and terrified of what lies ahead and am wondering if there’s any point. I’m sure it’s not at all helped my being house-bound while we await our WAV. I’ve been outside twice in the last 2 months.

How do you stay positive and keep going? One or 2 of you have kindly offered advice to me previously, in private messages, for which I’m so grateful, and I was doing ok for a while but can honestly say I’ve never felt so low and so utterly hopeless and need some inspiration.

How do you manage? How do you stay positive? Do you know of any good blogs etc which have helped you and might help me? I’ve always been able to cope and stay positive on my own but I’m failing miserable. So sorry to sound so needy.

[Terry Forum Member Find all posts View Profile Close Terry]

Hi Sarah,

No great words of wisdom I'm afraid.

We have been through our worst three months ever and are finding it hard to cope with things.

It's a shame you have not been able to get out more and hope that you make the most of the coming nice weather.

Love Terry

[SarahWP Forum Member Find all posts View Profile Close SarahWP]

Thanks Terry

I’m sorry you’re struggling too. We’ve just had hoists installed but my wife can’t manage them on her own. I have carers coming in but they obviously can’t be here every time I need to move/go to the loo, so that’s adding to my stress.

I’m hoping to get out later this week, and that that will give me a better perspective.

Sending much love and strength at this difficult time.

Sarah mo

[Sheila Forum Member Find all posts View Profile Close Sheila]

Hi Sarah,
I know what you mean, I can hardly walk now, my husband wheels me about in my wheelchair. Everyday seems to get more difficult. My speech has gone now and eating is very poor. Like you my mood is low. What can we do ?
I hope you can get out this week. It helps to see something different and take your mind of things.
Sorry Terry is having a difficult time too, thinking of you both.
Love Sheila x

[SarahWP Forum Member Find all posts View Profile Close SarahWP]

Hi Sheila

I’m so sorry things are getting worse for you too - it’s scary isn’t it when you can feel things slipping away - yet again. I’m struggling to adjust, physically and emotionally, and also mourning things I can no longer do, such as spend time at our much-loved caravan in West Wales. It breaks my heart.

I have to find a way of dealing with this tho or I’ll go mad. And they say a positive mind set helps physically too don’t they. Here’s hoping someone has some inspiration.

As sorry as I am that you - & Terry - are struggling too, it helps to know I’m not in it alone. Sending you much love and fortitude too.

Sarah xx

[Terry Forum Member Find all posts View Profile Close Terry]

Hi Sheila & Sarah;

I really shouldn't moan, I can eat and get out every other day. I mainly feel for our other halves.

I don't tend to look forward much, my wife plans out a week in-front but I never know until I am up if I can do anything much that day. Just try and live one day at a time and you have to let many things go.

Love Terry

[Broostine93 Forum Member Find all posts View Profile Close Broostine93]

Something that might help with your loo worry (for #1) is something I've heard of other people using who have MND. I'm not sure of the exact name, but it's something like a she-wee. It means you can relieve yourself without needing to be helped to the loo. I do believe that you can get these prescribed by your doctor or even on Amazon, if I'm not mistaken- definitely worth looking into!

As for general low mood, it's hard to completely eradicate that low feeling, but I have a few suggestions that I can list below (especially for those days when you're too tired/worn out to leave the house):

- stand up comedies/old sitcoms/anything funny to watch on tv
- funny videos on youtube (I personally watch these every night to help me get to sleep with a clear mind)
- going through old photo albums with your wife (it'll remind you that this is such a short period of your life, when you've done so much more beforehand )
- if you can use your hands to write, play games like noughts and crosses or hangman (they're oldies, but goodies)
- read (actual books or e-books). It's a world where you can escape to for a few hours and forget about life's problems
- listen to podcasts (there's so many to choose from- you're bound to find at least one you'll get invested in)
- listen to your favourite music or meditative music

I hope these give you a few ideas to try to cheer yourself up, if only for a short part of the day

[Ellie Forum Member Find all posts View Profile Close Ellie]

Hi Sarah,

I am glad you reached out, it's hard.

IDK if this blog would be of any help to you? https://alsandwellness.blogspot.com/...bel/About%20Me

I watch some comedy most days to have a laugh - if you have Netflix and have not seen Grace & Frankie, it's well worth watching and episodes are only 30mins long.

May I ask what type of hoist and sling you have? Most can be used successfully with one pair of hands, albeit with a degree of inventiveness.

Hoping you get out very soon - cabin fever certainly contributes to feeling low

Oh, just a thought - do you take vitamin D3? Apart from being recommended by our Health Services, it helps with mood too.

Love Ellie.

[Deb Forum Member Find all posts View Profile Close Deb]

Hi Sarah ,

I am so sorry you are feeling low but its is totally understandable. Please dont apologise for it ever because it's almost impossible to be positive when MND is relentless. You have had such alot to come to terms with in a very short space of time.

I find once I am down it's really hard to pull myself up. I find friends or family help because I put on a brave face that stays with me.

I dont know if this would help you but going to the loo was a stress for me because I need help so I was not drinking enough water, which is not good. Initially I thought it was gross ( yes I am a wimp ) but I use a ladies urinal bottle thingy in the day and I can manage independently . Although I have no or very little leg strength my arms can manage this.

I hope you get your WAV soon because going out, even for a drive is uplifting. I also find zoning out with loud music helps.

Lots of love and hugs to you and your wife,
Love Debbie x

Ps going to try Grace and Frankie tonight, Ellie .

[Sheila Forum Member Find all posts View Profile Close Sheila]

Oh Sarah, I am sorry to hear about your caravan. I know you were really looking forward to going there next month. You are getting a wav soon! So you and your wife can get out more. Maybe something husband and I should think about.
Thanks everyone for your advice and help.
Love Sheila x

[SarahWP Forum Member Find all posts View Profile Close SarahWP]

Thank you everyone for you encouraging words and very useful suggestions (great ideas, Broostine93 & Ellie, thanks!). And apologies for not having responded sooner but my worst nightmare happened today.

Sue had gone out - I’d already been to the loo and the carers were due in just a couple of hours so I was relaxing in my chair, and did some meditation, planning to pick up on Grace & Frankie - which I’ve watched some of previously but not for a while. Then I felt some tell-tale gurgles in my tummy.... I’ll spare you the details but suffice to say the very worst happened (we’re not talking #1...), and I had to sit in it for 45 minutes before the carers arrived- and to add to things, one of them was someone I hadn’t met before!

Mortified doesn’t come close.

Not for the first time, just as I manage to pick myself up, I have a set-back.

But...looking on the positive side, it was just an embarrassment and inconvenience after all, nothing painful or life-threatening - which so many of you on here are facing. So I’m counting my blessings and at least now my worst nightmare has happened...and I survived!!

Not only that, I’m armed with some great tips as to how to cheer myself up. I know I have to try to enjoy every day if I can because I’m blessed with a very happy marriage as well as amazing friends and family , who are really coming through for me. Sue and I have only been together for 6 years but that’s better than nothing and we’re so grateful for any time we have together. And...our WAV is being delivered next Tuesday so I’ll be able to get out and about, especially going on walks with my much loved dogs. I’m having trouble bonding with now I can’t walk, feed or talk to them - I even struggle to reach them now to stroke, let alone cwtch, which breaks my heart.

To answer a couple of your questions, the hoists I have are ceiling tract ones, with slings. But I’m not a small woman and the OT said I’m a double hander (charming!). We’ve also tried 2 types of sit to stand ones (Stedys) but they don’t work for me either. And I’m not drinking enough either - I enjoy water (tho I tend to have ribena), but can only take tiny sips at a time and going to the loo is such an effort. But I know I need to address that. I can have fluids through my peg of course, but that tends to make my stomach even more upset. Seeing the nutritionist (again) tomorrow and will discuss it with her - again again! (I don’t think a ladies urinal bottle would work for me unfortunately, Debbie, as I don’t have much strength in my hands and arms.)

I’ll definitely check that blog out, thanks Ellie. As for the caravan, Sheila - yes I’m gutted about it - still processing it to be honest, it’s just too heartbreaking to think about too much at the moment.

Thanks again everyone for indulging my self pity once again. I’m giving myself a stern talking to and am determined to be more positive - & like you say Terry, try not to look too far ahead.

And I want to be there for you guys when you need it too. This is such a wonderful forum. Xx

[Lynne K Forum Member Find all posts View Profile Close Lynne K]

Sheila, Sarah and Terry. I wrote a long post to all of you about an hour ago but because of my wayward fingers I accidentally deleted it, instead of posting it. I was so disheartened that I came off site and didn't want to type it all again. I wanted you all, at the least, to know that I'm thinking of you. Lynne

[Ellie Forum Member Find all posts View Profile Close Ellie]

Yeah I know that feeling of utter mortification and self-loathing having laid in the contents of my bowels for 2 hours in bed one morning Hubby & children had left for work and school as usual when that dreaded gurgling started and there was absolutely nothing I could do about it....

My carers came in to get me up and were just wonderful - I was sobbing with shame - and they were so matter of fact, but sensitive, about what had happened that I relaxed a bit.

I had overflow diarrhoea due to constipation and boy did I learn a lesson - that's why I go on and on and on about staying on top of constipation

So Sarah, you definitely are not alone !!

Love Ellie.

[Ellie Forum Member Find all posts View Profile Close Ellie]

Oh Lynne that is so frustrating for you

I tend to type in Word, then copy & paste into the reply box on the Forum. That way if my eyes go wayward and I mess up, I can click 'Undo' and text miraculous reappears. Not to mention autocorrect and capitalisation

Take care.
Love Ellie.

[slp Forum Member Find all posts View Profile Close slp]

Dear Sarah
I don't think that this time of the year helps either because we are all stuck indoors too much x I do find that even ten minutes sat in the garden watching the birds and the dogs gives me a boost although sometimes by the time I have enough clothing on to keep me warm the sun has gone in ! Are you on any antidepressants? I take Citalopram and have done for 7 years and it really helps to level my mood.
I know exactly how you feel about not being able to cuddle your dogs but sometimes I just lie my head on them and enjoy feeling them breathe.
I sympathise about your accident but don't worry about it x I am sure that it has happened to us all and good carers won't make a fuss x
it is so frustrating when your body lets you down
Spring is coming and I for one can't wait to feel the sunshine x
Keep talking and enjoy your dogs x I currently have three sausage dogs on my lap
Much love Sarah x