Just hit me today

[Lynne K]

I’m normally upbeat but today I feel scared to death about my future with this horrid disease.

I can just about get to my powered wheelchair using my walker but it’s getting harder and harder. I’ve been showering and drying myself independently but ditto it’s getting harder and harder. I go in my bedroom put my own nickers on. Steve comes in to help me with bras then leaves me and I put the rest on, but ditto it’s getting harder and harder. I go to the loo independently, putting pants down then pulling them back up, but that’s getting harder and harder.

I’m home alone tonight as I am every Monday night when Steve goes out to a music session (he plays the fiddle). I get into my pjs independently around 6pm (ditto this is getting harder and harder) and we eat about 7. He goes out about 7.45, comes back between 10.45 and midnight.

Sorry for offloading but I needed to let it out. Thanks for reading xx

[WheelsOfSteel]

No worries. Always happy to offer a sympathetic shoulder.
I currently have full independence, but like you I am not looking forward to when that ends and I will need help.
Stay strong.

[Lynne K]

Thanks Eddie x

[Graham]

In 2011, I tried my absolute hardest to help around the house. It took me 10 minutes just to get in the kitchen! Maybe you are at the stage of calling in support.

[matthew55]

I feel the same way. Harder to dress or undress. 👔👕🧦😁xx

[Deb]

Big hugs to you Lynne . There's no need to say sorry because this is the right place to offload.

I'm sure we all have times when it just hits us. Like you I try to stay positive and upbeat and make the most of everyday. Stuart has to help me with all my transfers, getting dressed etc and I know I'm lucky that he is so patient, matter of fact and calm. I am fortunate to still be able to speak and eat but sometimes I remember how independent, active and assertive I used to be.

We saw a palliative care consultant at the MND clinic last week. They asked us both about our lives and said we should feel proud of how we manage and stay cheerful. I'd never thought of it like that and I think we should all feel that way.

I hope tomorrow is a better day for you,
Love Debbie xxx😘🤗

[Mary C]

Hi Lynne,
like you the impact of MND is more obvious.If we look back at the losses to independence it’s astonishing.I had a registrar from palliative team come to see me today and she explained how these changes can cause overwhelming fatigue.I only have to be showered and have hair washed and I am tired out.
I noticed at the weekend after being assisted to dress and get coat and boots on how weary I felt.We went to a Christmas event ( me in the wheelchair) and I was exhausted even though I was being pushed in manual chair.
As we know there is no set pattern to changes and yes it can be scary.

Bit by bit things got harder for me to do ( dressing, showering, getting to loo. Walking, talking,writing….the list goes on).
I just try and adapt and lucky I have my hubby Steve and sister in law to help me with the increasing list of things I can’t do.
I no longer stay on my own when my husband goes out as can’t get to toilet unaided etc.Hope you have a lifeline system as a back up.
My husband goes out two evenings and I want this to continue so he can have time to do something he enjoys.I have many offers from friends to sit with me but it’s not everyone I want to ask to help me use the toilet.😂
Keep strong Lynne, and ask for help if the going gets tougher.
Best wishes
Mary x

[Lynne K]

Thanks Graham, Mathew, Debbie and Mary. I’ll message later as our meal is on the way xx

[Ellie]

Hi Lynne,

I'm so sorry you're in this stage of progression.

I always think it's tough for slow progressors (like you) to adjust to function loss, simply because it's been (relatively) so long since your diagnosis. It's like you've been lulled into a false sense of security and, despite having been told you have ALS, you've coped brilliantly but, when that function change happens which makes a marked difference to your ability, it's a horrible, sickening realisation of the reality of what having ALS means (or another MND variant)

Of course it's tough for everybody but, for me, my rate of progression meant loss after loss, so I barely have time to draw a breath before losing function in the next area, so I got to know the horrible truth pretty soon after diagnosis. I'm not saying it's easy but I didn't have the long period of independence that you had, which is why I think it's particularly tough on you.

I know there is so much you can still do, so celebrate your abilities 👍👍👍

Sending you hugs and kisses this evening 🤗🤗😘😘

[LindaB]

Lynne K it's so understandable having days when it all feels overwhelming. I know I have those times. We are dealing with such loss in so many ways.
I'm glad we have this space to share our thoughts and feelings both good and not so good.
Adjusting to our changes takes some doing....and I'm hoping tomorrow is a better day for you.

Sending you love and light 🙏💋💋

[Lynne K]

Mary, I put my own pjs and big baggy cardy on, went to do my teeth and have (excuse me folks) a wee. All independently again. I don’t have a lifeline system but Steve on the end of his mobile. He’ll be half hour away in best traffic but could be much more.

Fingers crossed that this stays as is for a good while.

I’m going to do some tv watching (not usually my choice, but not up to reading today) and not go to bed until Steve comes back. But I’ll need to go to the loo once usually whilst he’s out. I’m usually very nervous when I don’t this when nobody else is here.

Thanks for your kind words xx

[Lynne K]

Thanks Ellie. As usual very good advice. You’re a star. As you probably know I’m waiting on a suprapubic catheter which will make going on the loo not necessary as I already have had a stoma for number 2s for nearly three years, a non MND cause. So eventually Steve will be able to empty both. I’ve asked him to watch me doing the stoma bag to learn for when he’s doing it. But he’s reluctant, preferring for me to struggle on whilst I can. As you can imagine this is a challenge and a half for me seeing as my fingers on my dominant right hand aren’t working fully. But I just about manage.

How long have you been mainly in a wheelchair? I’m just wondering if it effects our hearts quickly or what?

Love Lynne xx

[Ellie]

How long have you been mainly in a wheelchair?

I've been in a wheelchair since 2008, less than 1 year after my diagnosis, by which time I also had a PEG. My onset was in a hand but pretty soon all 4 limbs were affected.
I hope your progression continues to be slow.

It's disappointing that Steve won't get acquainted with the ins and outs of the stoma bag - mine had the same attitude towards being shown how to use the hoist properly and pooh poohed the very notion that it needed to be demonstrated. Needless to say, he put the sling on upside down the first time 🙄🥴 There's no telling them... xx

[Lynne K]

Thanks for the information about your history Ellie. My

Steve as a retired teacher thinks that he knows best about everything but despite this I love him loads for all of the sweetness that he’s shown me over the last twenty years since we met. It’s frustrating sometimes when he takes offence so easily. I guess that he was too used to being in control (lead a department in his last school post). But MND is difficult for all of us. It brings out both the worst of him and the best. I’ve suggested counselling to him but he wouldn’t agree. But where he is tonight (playing his fiddle in a music session) lifts his mood.

I hope that you keep going for a long time xx

[Ellie]

But MND is difficult for all of us. It brings out both the worst of him and the best.

I think you could say that about the vast majority of us with the MND and of our carers... 😏😘