Six year later

Hey Aaron,

I imagine that this will resonate with a lot of people. 

I don't know how other people feel, but do you have to reconcile it at all? Can it be part of the duality of life?

The other side to guilt is innocence, no one asks to have a stroke, they are unexpected and cruel. 

Diana 

Hello Aaron

Thanks for posting your blog, as Diana has commented above, I am sure what you are going through and what you have been through will be ringing true for many others in the community.

It sounds as if you are still facing many impacts after your stroke but that, as you said, you have made some wonderful gains. Congratulations on your marriage and your three new 4-legged family members. They in themselves are huge achievements, let alone completing a degree and considering moving onto a PhD.  You have certainly experienced some hugely positive achievements after your stroke and sounds like you are planning even more in the coming year.

Fatigue can be extremely challenging post stroke, and can affect you at any stage. It sounds like you have identified some of your triggers for your fatigue, which can help.  Have you ever seen an Occupational Therapists for your fatigue? They can be helpful in working with you on energy conservation strategies for management of fatigue.  You can find a private OT here, or ask your GP about a referral through a chronic conditions care plan if you are not already receiving one. This will provide 5 sessions of allied health such as an OT at a Medicare rebated rate over a 12-month period. OT’s can certainly be helpful for a burst of rehab at any time in your recovery.

Have you considered participating in research? There is a research trial available at the moment looking at a medication to help manage severe and persistent fatigue. Depending on where you live, this might be something you would be eligible for. You can read more here about this.

Finding the new normal after stroke can be really challenging and grief over losing the you from before your stroke is very normal.  Your feelings are very valid, but there are options to talk more about these if they are affecting your daily life.  We do talk with many people who have survived a stroke and feel guilty, especially when talking with others who they may be more affected by their stroke. This frequently occurs when we consider some of the more hidden disabilities such as fatigue.  This is very normal and very understandable. Survivors guilt can be a real issue for many.  You are not being ungrateful and are obviously still working hard on your recovery. This can be difficult to reconcile, but you are not alone.

It may help to talk to a professional such as a psychologist who can work with you on balancing your feelings of guilt and what you have been able to achieve following your stroke.  Talking to others who have been through a similar experience can also help. There is an amazing trauma survivors network called the Genyus Network that might help.  You might also like to listen to Meredith talking about accepting what has changed for her after her stroke and getting to know yourself again here.  There are some others that have shared their experience on the Young Stroke Website particularly around finding the new normal.

You are also very welcome to give us a call here on StrokeLine to talk with one of our health professionals. You can give us a call on Ph 1800 787 653 or email us on strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm (AEST).  We would be more than happy to talk with you about what you have been through and  how to manage finding your new normal and being able to accept this without the guilt.  Do give us a call.

Warm regards

Siobhan (StrokeLine)

Hi Aaron,

Here are some comments from the Facebook community, they know how you're feeling. 

Linda Steuer

Unfortunately I can not cry since my strokes which is annoying and sometimes embarrassing. I feel guilt and shame but I know that I shouldn't. Hard not to though when sitting holding my Dad's hands when it was his time to give up his own fight but at a very good happy 96.

Shelley Christie

4 years post this week and my body decided to remind me of what I can and can’t do. I’m feeling all the feels - I’m teary all the time it’s called PBA - Pseudobulbar.

It’s awful for us, what we’ve all been through, but you keep going on because you can and here to talk about it - take one day at a time and acknowledge the losses helps with the grief.

You’ve got this one step at a time.

Debbie Grimmett

It's a huge roller-coaster of emotion as you are so grateful that things could of been so much worse, YET the grief of the loss is overwhelming at times.

Duncan Mitchell

Grief for the loss of the previous version of ourselves is a very complex issue and very underrated on how much impact it can have. I think acknowledgement of the loss is a key step, they talk about the stages of grief and I think it's important to be aware of these stages, this will allow us to embrace the new person we can become and build on the strengths we have not to contually look back. I'm not there yet but trying every day. Unambiguous Grief is the term physcologist use, I think.

Kruni Delinac

I cry in silence when I need to and laugh every opportunity I get. It's totally shit what's happened to us but life goes on and we are all here to tell our story.

Annabel Docherty

Grief is so personal ….acceptance helps, trying to do something positive that you can do. I always think someone is worse off than me.

Jasmine Anne

I feel you. Acceptance doesn't mean liking it, it can mean being strong enough to accept the things we can't control and kick arse with the things we can control even if we dislike how the day starts. I hurt every day.

Karen Cupit

Don’t beat yourself up! You have every right to be down and out at times, I can’t imagine but watching my dad, I just thought how is he dealing with this as well as he did but I know he had his devastating times and feelings.

I really feel for you, I’m in awe of the people on here recovering from strokes.

Thank you Diana, and Siobhan for the advice and sharing the supportive words. I do apologise for the bleakness of my first post. I didn't intend for it turn out like that. It may have been a low day, and I may not have filtered myself properly. 

That said, I appreciate the resources and suggestions, I could probably do with revisiting a psychologist, even if only to unpack my progress and goal outcomes of the last five years with a new perspective. I currently meet with a wonderful OT and Physio who have helped me come a long way in the last six years. My OT has helped me develop strategies to minimise the effects of my executive disfunction. But as many have said it's a constant journey of acceptance. Remembering to be kind to yourself, taking the time to breathe, reflect, and rest when needed. 

Thank you to everyone for you kindness. It's so easy to forget that you don't have to do cope with everything alone.

No need to apologise and don't ever feel you need to filter your posts Aaron. this is exactly what the stroke survivor community is all about, providing support and being there when someone reaches out. 

It is great to hear you've had a good team working with you, but seeking support from a psychologist may be something to consider.

Always feel free to reach our here on EnableMe, or give our StrokeLine team a call or email on Ph 1800 787 653, or strokeline@strokefoundation.org.au. We are always happy to talk and be there to listen when you need us.

You are right, you are not alone, there is a big and kind community here who understand and are always willing to reach out.

Warm regards

Siobhan (StrokeLine)

Yes Aaron, I can totally relate. There is sort of grief that seems to linger for the ‘before my stroke’ times.  I too, am over the 5 year marker, and yet I still have ‘off’ days or nights. Maybe it will never leave us, and so it is necessary to accept this (unwanted), part of ourselves. It is part of who we are becoming, yet it can catch us off guard. We are indeed ‘lucky’ (and thanks to a small village of support), to have so many fabulous times ahead if us. We will get there!