My stroke was in May 2022. I was in hospital until the middle of August. I spent most of this time in ICU, other than for a couple of weeks in the neurosurgery ward before moving to rehab. The only memories I have of this period are some bizarre, fairly scary hallucinations in the ICU and a few extremely patchy memories on the neurosurgery ward. I became fully coherent within a couple of days when I got to rehab. Weirdly, I knew I'd been sick (I guess it was my subconscious)! I wasn't at all aware, though, of quite how serious it had been, how much it'd affected me or how long and arduous the recovery process was going (and continues) to be. Nor was I aware of four words that I would become all too familiar with: "new normal, new you". If I'm honest, I think I'm still coming to terms with this.

 

In rehab, the therapy team would hold a multidisciplinary team meeting once every six weeks to check on my progress. I remember the first meeting was roughly two days after I arrived. When they were talking about what my goals were in terms of recovery and what everyday life looked like for me, I was expecting things to go back to what they had done before being ill within a couple of weeks.   In the goal-setting area of this website, I talk about being realistic. It's safe to say that this concept has taken quite some time to sink in! This hasn't been an easy adjustment for someone who is naturally impetuous! As I said, learning to live differently is something I'm still getting used to. Being impetuous (some may add stubborn) is a trait I'm learning to combine with being an incredibly determined person. Maybe if I'd known I was sick, I'd have been more aware of how hard and long a battle recovery would (and continues to) be.  

 

One of the hardest things to come to terms with has been learning to accept the long-term effects of my stroke. I'm not fond of the word deficit. It seems too negative, so I use effects instead. Limited mobility is frustrating, and my loss of independence is even more so. The loss of peripheral vision and the fact that my pupils no longer sit evenly means I have an occlusion (frosted) lens for my glasses on my right eye. Combined with right-sided facial palsy, this has resulted in a big knock to a pre-existing fragile self-confidence. The best advice I can give is not to forget that you are still your old self; there are just the "new" parts of you. Take time to get adjusted to your new way of living. 

 

I've been overwhelmed by how much I could not do for myself (especially at first). This has improved dramatically, but some things still do not come easy. I have changed how I do things, like wearing leggings instead of jeans (no buttons). I can pretty much tie my shoelaces, but it takes ages. Having someone tie your laces for you when you're in your 30s isn't the best feeling. There is the saying, "Practice makes perfect", but in my case, it's more about perseverance and a test of my patience. There are the physical changes of things that previously came so naturally. I have relearned how to walk, but it's harder on certain surfaces (slopes, wet and muddy terrain, etc.). Walking for more than half an hour at a time makes me tired! I've swum since I was a child, so when I decided to start swimming as a rehab activity, I got in the pool expecting to be normal. This wasn't the case, and it has been a massive eye-opener and probably dented my confidence a bit. I've already said patience isn't a natural part of my personality. I struggle emotionally when I can't automatically do something, and it becomes mentally or physically draining (frequently both). I wasn't aware quite how real stroke fatigue is!

 

I think the thing I've been most floored by is emotions. I range from being frustrated that I can't do something, or it takes longer than before, angry at things I've lost (having an entire field of vision, loss of independence, etc.), sad that this happened and how it's changed so much of the way of living that I was used to. One of the biggest things to be prepared for is how much recovery will challenge you emotionally. I've said it elsewhere, but recovery is a huge rollercoaster! I think finding an outlet is essential. I've tried meditating, which I'm utterly useless at. I started sketching instead, though I'm far from a professional artist! I've always been bad at bottling up my emotions, a habit I'm trying to break. Finding some way to express your feelings is essential, and I wish I'd started doing it sooner. Whatever works for you: therapy, family, a support group online or in person, or a hobby. Please don't shut things down! 

 

What I wish I'd known the most is quite how challenging a process recovery is. It's so incredibly complex and a continuous journey. The fact that I had no idea is part of the reason I decided to create "When Life Gives You Lemons". Being able to develop a source of information and documenting my journey (both of these from the point of view of a stroke survivor) will hopefully help other people and has provided a good outlet for me. If you have any questions, please email me, and I'll try to help.