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Thread: Resting/tiredness

  1. #1
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    Resting/tiredness

    Im in the earlyish stages, I guess, limb onset in arms that was lower motor (fasics, wasting). My legs have started to feel stiff (upper motor I assume), and im finding walking makes me incredibly tired. I went to the shops a few days ago and then to a poetry night and spent the next morning crying my eyes out with tiredness.
    Does anyone have advice on tiredness? I know the MNDA say to plan in rest periods (not doing anything else) I certainly did NOTHING the next day and felt so much better. My dominant arm is getting weak as well as the other, so I think this is the stage where we can no longer pretend the disease doesn't have me and I should accept I can't just throw myself at things. Or at least I can in bursts as long as i rest before and after!
    I guess I'm just reaching out to folk..
    My partner ended the relationship after my diagnosis a couple of weeks ago, and my mum's struggling with it all, so you can feel a bit on your own with it. I completely recognise my struggles at this point are far, far less than those of you further along xxxxx

  2. #2
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    Oh gosh Catsparkle, you have such a lot to cope with. I am so sorry about your partner. I think Mums do struggle with everything, understandably. I kept trying to hide things from my mum to protect her until I no longer could.

    The tiredness is frustrating because we still want to do things. I try to pace myself and do one thing a day but it's not always possible, We went out last night to a family occasion so I am having a lazy morning today. I definately feel better after a rest or a lazy day. I am also very stiff and most wobbly in the mornings so I go very, very slowly and dont use the shower in the wetroom straight away.

    It's lovely that you appreciate that there are others on here further along this journey. I always think that too but it is so hard to adapt to each change and I really hope you have someone to talk to or have a moan or a cry to. There is always someone on here who understands.

    Take care of yourself and sending you a virtual hug
    Love Debbie x

  3. #3
    Forum Member Marigold's Avatar
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    We are all at different stages Catsparkle, but we all have plenty of empathy and understanding.
    I can’t imagine how hard it must be however, to be newly on your own at this time.
    I really feel for you now.
    In my own limited experience, I think you shouldn’t fight the tiredness or it can really get you down.
    If you have any other support, friends etc, now is the time to call on them and use them.
    Good luck and keep posting...
    Marigold

  4. #4
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    Thankyou Debbie, that's so kind xx I think finally getting dominant hand and arm weakness is that pointer to loss of independence for me, and how it will affect my ten year old. Thankfully she's very sensible and competent and my Mum and Dad live round the corner, but with applying for universal credit/PIP and hospital tests for something else as well (arghhhh, Id never gone to hospital before all this!).. I'm knocked for six really...
    Thankyou so much for saying about the rests and morning stiffness, it really helps to know it's a 'thing', and i need to be kind and understanding to myself..
    And thankyou for the hug too, much appreciated xxxx

    Love Lisa x

  5. #5
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    Thankyou Marigold that means a lot xxx

    Love Lisa x

  6. #6
    Forum Member Terry's Avatar
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    Hi Catsparkle;

    Mnd puts a great pressure on the strongest of relationships in so many ways.

    I used to have a rest every afternoon. If I have a day out I am very tired the next day, if not shattered.

    Hugs, Terry

  7. #7
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    Hi Terry,
    yes.. and we weren't on very firm ground anyway, so it's understandable..
    It's made me reach out to friends more than I would have done and they've been incredible, so in that sense it's been great.

    That's really useful about the resting, thankyou x

    Thankyou for the hugs xx

    love Lisa x

  8. #8
    Forum Member Ellie's Avatar
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    Hi Lisa,

    So sorry about your relationship break up - this diagnosis certainly sorts the wheat from the chaff, that's for sure!!

    To date, my mum has never really talked to me about my MND - although she is a great support to me and my family. I guess it's very tough to know your child (no matter we're all grown up) has a life-limiting condition and might not outlive them. In contrast, my dad openly chats about my symptoms, meds & gadgets.

    Consider having counselling. I know I bang on about it, but it really helped me in the first year. I didn't think counselling was for me before I tried it, but my Community Nurse arranged it all and I'm so glad I went!

    I was told by my Dietitian to increase my calorie intake when I was at your stage, to keep up with my body's needs - not an extra 4 donuts a day mind you but as a balanced diet.

    If the muscle stiffness (spasticity) is bothersome, you could take antispasmodic meds to make your muscles less stiff.

    Big hug,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Lynne K's Avatar
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    I'm sorry that you lost your partner due to your diagnosis. That's dreadful. Also feel for you about your progression of this horrid disease. We are all different but we seem to understand each other which is great and it's supportive. I hope that you get some ease from this site. It's understandable about your mum. I mentally wrap my arms around the both of you. Take care. Love Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #10
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    Hi Lisa
    My heart goes out to you . It must be so hard for you having a child and no support from a partner when you have MND. I also have got extreme tiredness and it started last summer before the diagnosis , but I am a lot older than you and I too have a nap or rest in the afternoon.

    My only daughter is grown up and my granddaughter at university. So although we are very close they do not live with me ,and I can go and have a rest whenever I feel like .


    It is better for your partner to go now , if you were having problems anyway , than later when the symptoms get worse. At least you will learn to live without them now. It is hard for a stable relationship of many years, you certainly don't need the emotional instability of a rocky partnership


    I hope you have a good family and friends around you as well as this forum. Take care and also sending you a hug


    Love Chris x

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