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Picture of Topic  'Today I am feeling' - managing emotions


Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

Feeling weighed down

Started by Anonymous on 12 August 2015 at 11:00


Spent yesterday at the hospital with my sister who has a whole host of medical conditions including primary brain tumour (all in my blog ?). Anyway,  yesterday she was offered an assessment for VNS for her complex epilepsy... something they wouldn't usually offer to someone with everything else she has going on but since she's had daily seizures for last 17 years they sorta try treat her epilepsy as a condition in its own right. She's excited about it but I'm terrified of it... not entirely sure why as anything to stop her fitting so much has to be  good thing but the thought of her going through more surgery just scares me esp for something that doesn't cure something. Just lessens it... My sister has capacity issues in that she doesn't always understand consequences so decision mainly lies on dad and I's shoulders. Just feeling very weighed down with the amount of serious decision making I'm doing at moment. My partner and I try really hard to have nights/days off from talking about it/visiting etc but with her condition so serious at moment its really hard. Anyone got any tips for lifting some weight off my shoulders? 

Comments (3)

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  • Picture of SusieQ
    From SusieQ  
    12 August 2015 at 16:31
    Edited on: 12 August 2015 at 16:32

    It sounds an uplifting visit for all of you today - and your sister is clearly loved and valued by all who know her. It would have been delightful - being part of the kite flying and fairy watching:).

    You're right..the word 'carer' isn't a good one really, a sort of all encompassing non word.You're her sister first, and always...

    Warm wishes


  • From Anonymous
    12 August 2015 at 16:15

    Thank you Sue. My sis does have a whole team (which grows) and are all very good at talking to each other. Her nurses are excellent though I think we have a better relationship with them than my sister. We've been advised to wait until the assessment is complete before making decisions.

    My dad holds welfare and financial guardianship so is also heavily involved but between us decided he would try spend more time with mum at moment so she is okay too.

    On upside my partner and I took my sister to her house for couple of hours around lunch which was lovely. Feel lot less stressed seeing her happy with her kitty, and her neighbours wee granddaughter thinks my sis is her best friend so kite flying and fairy watching happened making my sis smile. Best  sight all week. :-) 

    I'll have a look at the options you've highlighted. I never think of myself as a carer... just her sister. I know she'd do the same for me if she could. Thanks again.

  • Picture of SusieQ
    From SusieQ  
    12 August 2015 at 12:12
    Edited on: 12 August 2015 at 12:13


    I read your first blog yesterday - 'introductions - first entry' - which explains how life is for you, with both your sister and mum having cancer. With your sister's cancers and complex health issues spanning many years, you are likely to have felt very responsible for her (willingly so) since your own childhood.

    The responsibility can, as you rightly say, be a weight on your shoulders. Making decisions which impact directly on someone you love and care about, may feel a bigger burden than if it were your own health we were talking about.

    Your sister is understandably caught up in the possible benefits of having the Vagus Nerve Stimulation (VNS) device fitted, whereas you're taking a more balanced view weighing up the pro's and con's, alongside her cancers etc.

    The surgery itself doesn't look too invasive (Vagus Nerve Stimulation - Epilepsy Society), and seems to be something like having a pacemaker fitted, which is a minor, day case procedure. However, these may be things you've been weighing up, and need to clarify?

    a)  The procedure can take up to two years to be effective in managing the seizures, and you mentioned in your blog that your sister's health was poor due to her cancers - so time factors may need to be considered.

    b) I'm sure this is happening, but are the various clinical teams involved in your sister's care, talking with each other, regarding her prognosis versus her well being?

    When big decisions are having to be made, sharing some of the process with others can lessen the strain. You mention your dad is involved too, so that shares the responsibilty a little? I imagine your sister may also have specialist nurses involved - and if there is one for her epilepsy, and a cancer nurse specialist involved, can you talk through things with them too?

    You also need time out, when you can, from the pressures you're under. (easier said than done, I realise). You mentioned that you and your partner try to have time off from the situation - but that's sounding difficult at the moment.

    If you ever have the opportunity to drop into your nearest Maggie's Centre, then support is there waiting for you - including groups, and activities/courses, which could be purely for you to have 'time out'.

    Alternatively, perhaps finding a local carers support group might help both you and your dad, to help you feel less alone with all this. You can find local groups on the Carer's Uk website (Get support - Carers UK).

    Other people reading this may have ideas and supportive suggestions to help you too, and it would be lovely to hear what other online members think...

    Warm wishes



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