What it means to be a Stroke Survivor.

Sorry its been a long time between posts!  Life has kind of gotten in the way....in a good way!  We have been very busy with our beautiful baby girl...she keeps us on our toes and she's not even walking yet!  She is a few days off being 11 months old, so I am well under way with planning her first birthday party and I can't wait!

Lately I have found myself thinking a lot about what it means to be a stroke survivor.  I'm not the one that had the stroke and survived, obviously, but as I was explaining to Dom the other day when things happen to him they happen to me too...good and bad.  When things happen that make him happy they also make me happy.  And so, when he had the stroke and spent time with paralysis that also happened to me, in a way.  I found myself thinking about the possibility of life with partial paralysis and what that would me for us.  For example, how would I be able to help Dom?  How would Dom be able to help himself?  Would he ever be able to work again? Play his guitar again?  Walk the dog again?  Cook with me?  Clean the toilets...because that's just eeewwwwww and I don't do it!  haha.  Thankfully these questions never really had to be answered because of Dom's remarkable recovery.  But I still find myself thinking about what it must mean to so many people out there to say "I am a Stroke Survivor".

Do they say it with pride?  Do they offer it up as a way of explaining their shortcomings?  Do they use it as an excuse of some sort?  What about their loved ones, partners, children, parents?  How do they interpret the term Stroke Survivor?  Its only been in the past few weeks that I feel I myself have changed my interpretation of that term.  I used to offer it as an excuse or explanation for Dom.  I would often say: "he had a stroke"... but not in a proud way.  Don't get me wrong, I have never been ashamed or embarrassed by Dom or the fact that he had a stroke...I just used it as an excuse I suppose.  But lately, I have found myself thinking more along the lines of: my husband is bloody amazing...he is a stroke survivor!  I think it is important for Stroke Survivors and their loved ones to recognise the feat of surviving a stroke, despite the lasting impacts said stroke may still be having on their lives, as something remarkable! Despite the cause of the stroke, medical complications, lifestyle choices...whatever the cause, be bloody proud of yourself!  You beat the stroke!  You are alive!  You are here, you wake each day, you see those you love, they see you.  You may be in the early stages of your recovery and are struggling to find the motivation to ace your rehab...take it one day at a time, one rehab session at a time, one milestone at a time...but take it!  Fight for yourself!  Get back what you can and make do with what you have.  Life is wonderful, don't give it up.

For us, life after stroke has not been easy.  We had an initial cruisy six months and thought we were all well and good, we even conceived our daughter, our first child, but then it all went to shit...or so it felt!  Dom started having seizures, which led to him falling into a depression so deep at times it seemed like there was no way out.  Today, two years after the stroke, we still have challenges, but we have each other!  There isn't a day that goes past where I regret Dom's survival, despite the hard times we've had.  He survived a stroke!  He is a Stroke Survivor and I couldn't be prouder of him and the battle we have fought to get back what the stroke took!  We haven't always been upbeat and positive, there have been times where we have both been furious, frustrated and on the brink of being defeated, but we have kept on fighting and we will continue to do so.

Don't let stroke defeat you.  Fight.  Be proud to call yourself a Stroke Survivor.  I am proud of you.

Epilepsy...

So Dom has been diagnosed with epilepsy.  I think I mentioned this in my last post, but I feel like I'm only now wrapping my head around this and what it means.  Currently, his seizures are not under control.  He is on AEDs (anti-epileptic drugs - yes, new diagnosis means new terminology for me to learn!) Anyway, the AED's are not yet working properly and he is still having seizures.  Not great for him...or me and my PTSD!  (Yes, I did make that appointment with the psychologist..back under control).

Dom seems to be coping with this diagnosis much better than I am.  I think he now has a sort of 'roll with the punches' attitude...whereas I am now experiencing the "why us?" phase!  I think a lot of that has to do with us now being parents.  Dom realises how dwelling on these things has a negative impact on everything else.  I'm just finding things to be so much harder than I imagined and so I am questioning why it has to be us that has all this happen to.  We have a happy, healthy daughter so we are grateful, I'm grateful.  But I still wish I had a healthy husband too.  He is suffering from a lot of side effects to the medications, not just the AEDs and they are taking their toll on me.  I don't want him to be tired all the time, I want to be able to lean on him when I'm tired.  I don't want him to struggle to pick our daughter up or to play with her, I don't want to feel bad when I ask him to do these things because I can see how hard they are for him to do.  I just want to be a normal, healthy mummy and daddy that share the workload equally.  So why us?  Since Dom's stroke in June 2014 I have answered that question with "the universe only dishes out what we can handle"...well universe...I'm close to breaking point!

I don't want Dom to have another seizure..I hate them!  But I don't want him suffering with all these side effects either.  I want a version of normal that has us as equals again.  I wish he could easily switch medications to reduce the amount of side effects, but I feel selfish to ask him to do that when it can increase the chance of him having a seizure.

On the plus side, Dom has had two infusions of vedolizumab for the Ulcerative Colitis.  So far so good.  No seizures as a result of the infusions and some very positive signs in terms of his Ulcerative Colitis possible going into remission!  Fingers crossed we can get him there with these infusions.

The Stroke team at RMH, for us, lead by Dr Yassi, are happy with Dom's recovery so far and have agreed to follow up with him via appointments every three months.  This is great!  The less appointments the better!

We go back to see the Epilepsy Team on Monday March 7, so I'll post another update then.