Limbs suddenly much heavier. Need tips to cheer me up!

[SarahWP]

Hi all

I was diagnosed 2 months ago & on the whole, my wife and I have handled it reasonably well, staying as positive and cheerful as possible. I’m fairly accepting of it and appreciate these things are random so don’t feel overly resentful or angry. Just very, very sad that I can’t live the life I wanted and had planned with my wife and 2 dogs.

Until recently I’ve been able to get about ok, albeit slowly and with assistance. But literally in the last 2 weeks or so it’s become a whole lot harder. Every step is an effort and my legs and arms, whilst they’ve been weak for a while, now feel very, very heavy. All I really feel like doing is sitting most of the day and if I have to get up for a bit, even to just go to the loo or go upstairs, I then need to recover.

I HATE feeling like this. I’m becoming lazy, but feel I’ve little choice sometimes. Yet I hate seeing my wife have to take on so much . She does so gladly but I’ve always tried to do whatever I can, and now I just feel so damn physically exhausted all the time. I’m worried I’ll start putting off going out or living a normal(ish) life. I’ve had bouts like this briefly before but then given myself a stern talking to & pulled myself out of it. You hear of people who keep going no matter what, and I’d like to be one of those people, but how much do you push yourself - and how much do you listen to your body? To make matters worse, my speech is a lot worse too and can only slur 2-3 (largel incomprehensible) syllables at a time.

I also fear, of course (especially given the speed with which I’ve deteriorated), it’s the beginning of the end.

Does anyone have any tips or encouragement or anything to give me some hope and motivation? I have mobility aids etc, it’s more the emotional advice I need really.

Sorry to be so negative. As I say, I’m generally very positive with a healthy sense of humour and I’m sure i just need to adjust to it - again. It seems a never ending series of adjustments at times!

Sarah xx

[Lynne K]

Good evening Sarah. Welcome to forums. I'm sorry about your recent diagnosis.

I wondered at my first few regular hospital appointment why I kept getting asked about fatigue when I didn't have any. Nearly 2 years down the line I do. I am unhappy about sitting around too much also. My back and buttocks get sore too. I worry about my heart getting unhealthy with less exercise. But my legs can only take short periods of walking with a Topro, or my light weight 4 wheeled walker. The Topro is best. I feel more stable with it but it's too big for our little flat so I have to use the other.

I can relate to what you say about the burden that your wife has had to take on. I worry about my husband seeing as he's had a breakdown a few years ago. At that time I did everything. If he breaks it'd be very hard for him but I'd be stuffed.

Emotionally all we can do is take one day at a time. Lots of times I've read advice to pace yourself and not overdo it else you struggle even more. I started having a doze each afternoon and it helped. But I haven't been able to for a couple of weeks and I've been feeling tired each and every day. We're away for a week's holiday at the moment so going out etc. I won't be able to get back to my afternoon naps until we're home this weekend.

I don't allow myself time to brood. I read frequently and have recently joined Ancestry to get back to family history research. I did some a few years ago.

I guess that we ought to try to stop feeling guilty. We didn't choose this path. Our partners would likely be happier if we look happier. To this end I try my best to not look sad. I do my best not to feel sad too for my own sake. Being downcast doesn't win us anything. Being upbeat makes us feel happier, more grounded, well that's me anyway. I'm sorry I don't know any jokes, but an Internet search ought bring some up.

I'm sorry if I'm rambling. I'm tired. Night night. Lynne xx

[kd1]

Hi Sarah,

You are not lazy. Don't allow self blame, because we all do the best we can with this wretched disease. And I can understand your concern about your wife; MND affects her and her life too. But frankly this is hell whether you have a partner (in which case lots is dumped on them) or don't (coping alone is no picnic). And if the position were reversed you would do the same for her.
But how to make it as good as possible?
I think it helps to keep on as much 'normal' stuff as you can without exhausting yourself. But one thing I do is list all my achievements in a day. Simple stuff, like 1. Got out of bed unaided. 2. Got dressed, in a fashion...and so on. For us, such things are monumental. So we might as well celebrate them before we lose them. And often the day has something good in it that needs to be noticed. I think this keeps me going. But I also have, in bad patches or on bad days, distractions - a box set to watch, books to read, even something nicer to eat. Little treats without guilt have much to recommend them.
Sorry this is rather banal but these have worked for me so far.
Thinking of you, Kate

[Ellie]

Hi Sarah,

Yes, MND progression causes HUGE upheaval not only to your life, but to that of your nearest & dearest too.

Progression generally does mean making adjustments to your lifestyle - adapt & conquer, as I say - and that can be very challenging/upsetting (also known as being kicked in the stomach!)

It may mean going to the cinema rather than clubbing and the likes, but you CAN lead a fulfilling life if you have realistic expectations.

As for do you listen to your body? I'd say absolutely, yes. Conserve your energy for energy-rich tasks or outings etc. MND is a disease which demands a lot of energy, so recharge your batteries when possible - that may involve naps or using the scooter more - and definitely don't feel bad for sitting on the sofa....

Take care,

Love Ellie.

[Ellie]

Hi Kate,

I love that you note your achievements every day - great to focus on what you CAN do.

Love Ellie.

[Sheila]

Evening Sarah,
I feel exactly the same as you. I am still trying to shuffle about carefully. But Monday night I fell in the kitchen, no real damage just a bruise. Like you said arms and legs feel heavy, also head and neck. My speech has more or less gone. I hate feeling like this, and my poor husband is trying to keep my spirits up. All we can do is take one day at a time, and try and stay positive.
But don't be hard on yourself, it is not our fault. I was at the doctors today a man I know was down there, and he is 93. Makes me feel awful sat there in my wheelchair. And all these 80's/90's people whizzing all around me.
I am starting to go on a rant, sorry guys.
Love Sheila

[SarahWP]

Thanks so much ladies

It’s good to know I’m not alone - well, obviously it’s not good but you know what I mean...

This has all really, genuinely helped. I will do my best to celebrate what I can still do each day, & be thankful for each day’s joys. Today, for example, Sue & I went to a nearby M&S - we took my mobility scooter & I was able to potter about for over 2 hours! I also treated myself to some nice new comfy clothes. It was a real boost & made me realise I still have some normality in my life, albeit in a somewhat non-normal way.

I totally get the feeling of seeing much older people whizzing around. My own mother, aged 83, moans regularly to me about being slow when she walks - but can walk further & faster than I can!!

Heartfelt thanks and much love to you all. I hope we can keep in touch.

Sarah xx

[Deb]

Hi Sarah,

I am so glad you had a better day yesterday, it sounds like you have a really positive attitude.
You have only been diagnosed for two months so be very kind to yourself and your wife because it must still be very raw and overwhelming for you. I think I was still in denial at two months.

You are certainly not lazy and it is a good idea to factor in rests especially if you know you have a busy time. Although MND is progressive I do have days that are better than others when I have more energy and things seem easier. I have also had periods where my symptoms have plateaued without progression.i guess everyone is different and its the uncertainty that is difficult.

I am sure we all have low days when it is hard to cope. I am a bit like Kate and in my head I list the good things everyday until I get to 10 things. It might be music or a message from my children or a friend. That sounds a bit bonkers now I have typed it !

Take care of yourself and each other,
Love Debbie x

[Ellie]

Don't worry Debbie, you're as sane as the rest of us

Have as good a weekend as you can.

Love Ellie.

[Hayls]

Hello Sarah, thank you for starting this thread, I’ve been diagnosed for 3 months and I’m feeling so drained and it’s shocked me just how physically challenging everyday things are but after reading everyone’s comments, your thread has worked a treat in helping me put life in perspective and after getting married last week is there any wonder I’m drained, but I’ve been out and about today and it’s lifted my spirits, keep achieving those little milestones of everyday and remember to keep finding that one thing that makes you smile everyday to keep you going, keep being you xxx

[Sheila]

Hi Sarah,
I am pleased you had a good day yesterday, and you bought some things for yourself. Yes, we have to try and do normal things the best way we can. I hope you have a good weekend and please stay in touch.
Sheila x

[Sheila]

Hi Hayls
Yes I agree what a great thread to start. I like your comment about finding something to smile about everyday. I am going to do that now., it's no good feeling down everyday. I see you live in Bournemouth, a lovely part of the country.
Best wishes
Sheila x

[SarahWP]

It’s so lovely reading all your messages, thank you for taking the time to share your experiences - & your wisdom.

I had a nasty fall tonight- fell backwards, cracking my head on the floor- yikes. It then took me & my wife a monumental effort to get me into a chair, but we managed eventually. Now nursing a sore head & headache- as opposed to a glass of wine which I’m normally nursing on a Friday evening!! :-)

Very many congratulations on your wedding, Hayls!!

Have a great weekend everyone. xx

[Hayls]

Ouch, a fall of any kind can have a huge impact in not only physically but emotionally, so glad you and your hero of a wife dusted yourself off and I certainly hope your both taking things easy to recover from what happened, love the comment about your usual Friday evening lol my hubby had to rescue me when I get wedged between the side of the bed and the wall and one leg had got lodged under the bed, luckily my EL still has me laughing so for the following hour between the both of us hysterically laughing I was eventually freed, so glad your in one piece, I always call my other half my hero and he says I’m his, teamwork
Hello Shelia, Bournemouth is not bad but it’s true that usually you don’t appreciate what you have, I don’t like the beach I prefer woodland but it’s got some nice people lol

[Sheila]

Hi Sarah,
Sorry to hear about your fall. I hope you are ok now. Quite a few people on here have had bad falls. We must try and be more careful. But it is hard adjusting to everything.
Take care
Sheila x