The experience of stroke from the inside

What just happened to me?

The following words come to mind as I think about my experience of stroke. It is a bit disjointed but this is how things happen.

There doesn't seem to be much going on. Then comes confusion, disorientation, fear, terror even. Now helplessness, despair, feeling alone and disconnected.

Just tired and need to rest. Hopeful, sometimes.

I'm still me in here, but there is so much, so very much I can no longer do, no longer be.

This is what I have been going through

Feelings of uncertainty. I want to get back to the familiar, to home, to my ordinary routine, to what I know. Then there is the realisation that this cannot happen right now. In fact it might even never be possible.

More fear and uncertainty. Frustration. I need answers that don't seem to exist for me. It is horrible, finding that one has become so confined in this way. Some things no longer work. Will it have to be like this? Will it get better some time soon? Please.

This is too serious. Can't we have some fun? I would much prefer fun.

Is there something I can do? What could I do? I feel tired. I surrender. I need to rest.

There is uncertainty, that is sure

Questions used to have answers, once upon a time. Now there are undefined dangers. Where am I going? Am I going anywhere? Where am I?

How long can this go on? Twenty seconds, I'll count them, now. I've been here for twenty minutes, twenty hours, twenty days, twenty weeks.

It's been twenty months now. Maybe I'm beginning to find my way. I'm shut down, restricted and confined. I'll rest and struggle and rest again. I did wriggle free a tiny bit, I think. I must wriggle a bit longer.

Maybe

The sun will shine, I will smile. You will smile.

I can't get out. So I go via laptop to a Zoom session and meet others like myself, face to face. We encourage one another. We need encouragement, things can be tough in this Stroke World.

You are allowed to laugh. It's in the rules. I did read that somewhere. So it must be true.

There are all sorts of symptoms, but in one way or another, we are prisoners, with shackles, restraints that never used to be there. We must somehow struggle free from what binds us, seek freedom from these limitations.

I must rest, to return refreshed, to struggle some more.

Without the support of my carer, who is also my wife and also of those others who have offered friendship, I would be nowhere. They deserve a thousand thanks from me.

There are others in this Stroke World

Stroke affects both an individual and those around and connected. Expectations go all over the place. How long will it take? Does anyone ever improve? Is there a way forward? Is there any point in trying? Am I truly alone with this? What should we do?

Conversation with others who are affected

Talking with a professional can provide information, as can conversing with someone who has experience of stroke. It is helpful to be open to the many views available, the Internet and what it contains can be useful. Websites such as that of the Stroke Association contain much that is of value.

In the initial stages after a stroke one can be swamped by 'too much help' when the important issue is just getting from day to day. It is key to listen to that initial advice on how to cope, emotionally, financially and physically.

We are all different, yet so much the same

There are many problems that a stroke creates and all who encounter them have a different view of their own . There is no 'one approach fits all' way of dealing with things. For a while it becomes necessary to put together one's own means and methods, perhaps at the same time comparing what one is doing with others.

This is where a phone conversation, a Forum, or meetings, virtual or real, can be a great help. These aids can be found available from the Stroke Association website.

Meeting up and comparing experiences

Simply meeting with others can help to normalise what is a traumatic event as one discovers there are others in the same situation. At this point you can begin to pick a path through what has occurred, even to cheer one another on to success and get encouragement when things become difficult.

Change is happening

There were the times I slipped, over-balanced or fell. There were those stairs I climbed and the day I managed to walk again, but these are stories for another time. All those tales will be told. Watch out for another edition of the Bobbi Blog.

I hope you have been interested, amused, informed, entertained and will return, another day, for more. Meet me, once again, on the My Stroke Guide forum, at a Zoom Open Group Meeting or here, next time, at the Bobbi Blog.

For now, I wish you well and leave you with this message from the Stroke World.

Keep on keepin on,

Bobbi