I have no memories of the time I spent in the hospital. Looking back at when I started rehab, I remember being frustrated that my mobility was non-existent; I was entirely coherent, yet due to a trach, I had to communicate via a whiteboard, and my handwriting wasn't particularly legible! However, the biggest frustration was being unable to eat or drink. I'm naturally stubborn, impetuous, and determined, so I was not (and still am not) planning to accept less than the chance of regaining as much control over my life as possible.
My family were a constant source of support. They made sure someone always visited me in the hospital and rehab. When I was in rehab, my husband came to see me every night after he finished work. My dad was a driving force and further encouraged my already determined personality. Unfortunately, he passed away roughly halfway through my stay in rehab, but this has only served to further my determination to progress as much as I possibly can in whatever way possible. My therapy team were fantastic throughout my time in rehab. Looking back, they not only worked wonders on my physical recovery but supported me hugely after losing my dad. My progress there enabled me to go home, walking, talking, and, thankfully, eating. Regaining the latter is an experience that will stay with me forever!
Whilst I am self-critical and impatient, when I left rehab, I was still able to realise I'd come a long way. I remember being surprised at the emotional toll of going home. I hadn't been back for a long time and was so tired. Exhausted was an understatement. I struggle with tiredness, but it was another level for the first month or so! Everything was overwhelming, and going out in town could be scary. I'm happy I did as much preparation as possible in rehab, and I've been fortunate to have had a fantastic local OT who has taught me a lot of different techniques to use both when I'm out and around the house. Even though things at home were different, they now seem entirely normal. My husband installed grab rails around the house, handrails on the stairs and various other bits. Life at home has changed in minor ways, like climbing the stairs. There are different ways I have learnt to do things: cooking with adapted utensils (see the product suggestion page), new ways of cooking to keep my weak left hand safe, carrying stuff around the kitchen, around the house and many other things.
Accepting the "new life, new you" mantra has been difficult. Honestly, at times, it's super frustrating and occasionally can be rather depressing. It's just like the words "minced and moist" (that story is in the blog "feed me"), these are two of the many phrases I've learned since the recovery journey started that I will never forget! I don't think I was able to easily realise the extent to which the physical and emotional changes can affect you. Due to my partial vision loss and limited mobility. I've lost my independence. I didn't drive before but walked or used public transport. As much as I appreciate the help, it's sad that something I highly valued is gone. The other things that've affected me the most are losing my computer skills and how tired my eyes get if I'm reading. These three things meant a lot and have led to a big knock emotionally.
On reflection, making the adjustments has not been an easy journey and still isn't. Patience is not one of my best qualities, and since the start, I frequently feel frustrated, angry and even sad. It will take a long time to sink in, and things will be different. The whole "you are still you, just a new you" concept doesn't come easy, and I'm not sure I've fully come to terms with it yet. I recently started therapy as I struggle to talk about the effect everything has had on me. I am learning strategies to acknowledge negative feelings without being swamped by them. I've also begun using specific tactics to help me cope. They're not meant to be used to push negative feelings aside, just to acknowledge them and find ways to stop them from overwhelming you. I have taken up journaling and sketching. Writing in journals is good because it's an outlet for things you don't necessarily want to talk about.
I do occasionally sketch. It's another outlet, even though I have the art skills of a toddler! I like to get lost in music or films. I tend to pick something that has some form of memory for me and allows me to take my brain elsewhere. Some of my favourite movies are Robin Hood, Prince of Thieves, Grease and Dirty Dancing (who doesn't love Johnny Castle)! My taste in music varies widely and ranges from Elvis and Bryan Adams to the occasional One Direction song and even the Bridgerton soundtrack. It is on Netflix and a show I'd highly recommend. I try to incorporate some form of activity that can benefit rehab. I've always enjoyed gaming, and I'm getting good at Mario Kart. Tie-dye is another one and makes a good summer activity in the garden. It requires a lot of hand and finger manipulation and hand-eye coordination. I like gardening. It's already known that sunlight improves mood, but gardening also helps physically and cognitively.
I thought it might be worth adding something about the ways I've changed aspects of my life to compensate for the effects my stroke has had. As I said earlier, some changes were so minute that they have become routine, and it would probably be hard to unlearn them.
I had to learn to climb the stairs with my left foot out to the side to compensate for the proprioception issues and weakness in my left leg. If I do go back to using stairs in a regular fashion, it might be tricky to retrain my brain to do so. Being self-critical, it is disappointing that I've lost one skill I knew I was good at. Due to my partial vision loss and weakness in my left hand, I have lost a lot of basic computer skills. The ability to touch type has gone from roughly 80 wpm to 10 (if I'm lucky), which is somewhat disheartening. However, I'm not losing hope that it may improve one day, and I'm currently teaching myself to touch type using just my right hand. I try to turn things positive even in the most minor ways and see this as learning a new skill.
My vision and mobility have massively dented my independence. Around the house, I am fully mobile. I only need help pouring the kettle or moving heavy pans/trays. Mobility outside is different; my vision makes it unsafe to cross the road unsupervised. There's also the occasional bollard or signpost, which I narrowly miss! When I'm walking outside, it varies, depending on the circumstances. I use a combination of my pole and frame for long distances and public transport; if I'm only heading out for a short time, I use my stick. Regarding someone being with me, it mainly involves walking near me. The amount of assistance varies depending on the weather and surfaces.
Some of the biggest things I've learned are to take each day as it comes, not expect too much of yourself at first, and that changes to your life are ok and that you aren't losing your identity. To be honest, I’m still having to remind myself of it on a frequent basis. I'm happy with how far I've come and beginning to accept that parts of my life may not return to what they were before. That does not mean I'm going to stop trying.
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