Jackie's Story - Cerebellar Stroke at 55

DAY 0

I took this photo from my back door the evening before the stroke.

Day 1 7.30am Friday 31

I was lying in bed, looking out at the view, thinking about the day ahead. It was going to be a hot non-working day. Endless possibilities. Andy had gone downstairs. I walked to the ensuite, and started to feel light-headed, as though I was going to faint. I’d had ‘fainting episodes’ in the past so I went back to the bed to get the phone to alert Andy. In doing so I noted tingling in my lip and down left outside of arm. By the time Andy got upstairs I had taken myself to the floor, head swimming, headache emerging.

I told him to get an ambulance. He obliged. I was scared. By the time the paramedics got here I was screaming with fear. I knew I was lying on the floor yet I was falling fast. I tried to converse with the paramedics. I tried unsuccessfully to convince them I’d be OK sliding down the three flights of stairs feet first on my tummy and that this would be safer than being carried on the chair. I didn’t want to sit up. As it was, helped by Andy, the three of them got me out and into the ambulance. We set off, leaving Andy (due to Covid 19) by himself.

DAY 1 – At the hospital

My recollection is a blur of movement, and voices. There is no sequence to it, no time frames – and no visuals.

I remember the noise of the scanner. I remember them trying to reassure me and warning me it wouldn’t be nice. They didn’t realise that as I couldn’t see anything, it wasn’t scary. I never knew when I went in it , or when I came out, or what it looked like. I just remember the noise – and that I was comfortable. I clearly remember the moment a man’s voice told me I’d had a stroke. “At the back” he said. After he’d gone, I silently shed a very small tear.

I remember fondly the journey to the stroke ward. The trolley was bumping and there was a lovely cool breeze and I had to shield my face with my hand because the sunlight was coming through my eyelids. I remember retching again and again and again, with such depth that the noise drowned out everything else.

Every time someone moved me, or my trolley, I retched again. I heard a female voice say “it looks like coffee grounds”. I forced out “don’t say that because I know what it means!”. I imagine that startled her.

I pondered that if these stroke symptoms were permanent, I couldn’t live like this. A nurse arrived with a phone and Andy on the end of it. We spoke for the first time. I was aware I could have another stroke. I passed on my messages for the children.

I don’t know when the day turned into night. I don’t know if I slept. Time began to return. I remember I was lying on my left side for a long time and my hip and shoulder hurt. I knew I needed to move position, but I couldn’t. The slightest movement induced vertigo and nausea.

DAY 2 was a turning point

I started the day unable to turn in my bed and refusing to open my eyes, and I ended it on my feet, walking carefully with a nurse alongside, catching me on the one occasion when I staggered.

Early in the morning I developed a mental sense of the space I was in (which turned out to be entirely wrong). Somewhere in the middle of the day I started to sit up, and to look at people who were talking to me. I could see their faces, their hair tied back, and their masks. I was allowed to drink again. This is when I took the pink selfie. Although given the choice, I still would have liked to shut out the world.

I got moved to the rehab ward and a nurse who had previously looked after me was there. “Do you remember me? I was with you on Friday! You were so poorly. You are so much better now” – I didn’t remember her, but I recognized her voice. I could physically feel the strength her words gave to me.

By the evening, the feeling of being on my feet, having connections with people, and not vomiting, was good. I felt happy. I stood at the sink and splashed water on my face, although at the same time fearing falling into the central metal tap. But activity, drink, and food in tiny amounts, all brought an overwhelming tiredness, and nausea.

DAY 3 – Sunday

It started bad. Waking, as usual, feeling sick and headachy but with a new symptom of heartburn which later was attributed to the huge dose of aspirin I’d been given. I got clean and it made me feel human.

I no longer wanted to hide from the world, instead I wanted to engage with it – and a sort of appetite had returned! Knowing Andy was about to deliver a bag to the ward, and in the absence of a nurse to support me, I got up on my two legs and strode with a wide gait out of my bay, in search of the door. A wide gait I believed would stop me falling over. There was a panic amongst the staff when I was spotted, and I felt a little guilty, but also triumphant as I accomplished a socially distanced conversation with Andy across the threshold.

Others were not so lucky, and I listened to many heartbreaking attempts at video conversations between patients and their families. Later the physio gave me the ‘all clear’ to walk independently. The freedom to go to the bathroom whenever you want should not be underestimated.
It’s been a good day.

DAY 4 – Monday

Groundhog day. I awoke sick, headachy and with heartburn. It was Monday. The world was starting up again – and I felt horrible. Silently I started to cry, and the tears kept coming. I had no-where to hide. I couldn’t turn over and bury my head in the pillow. I let the tears roll, silently sobbing .

I didn’t know why this was happening. I didn’t feel that sad. A nurse spotted me. I don’t remember what she said, but it was kind.

I soon improved and looked forward to “decisions day”. I expected the consultant, and the therapists, and a decision about discharge. The day dragged in anticipation.

Eventually, after a few glitches, the moment came and I said goodbye to Brenda, Valerie and Dotty. I walked out the door, sat alone in the corridor, and waited for Andy.

Andy helped me to the car, but it was my son David who drove me home, slowly and smoothly, with a sick bowl on my lap.

Successfully through the front door, with a walking stick for the comfort of three points of contact.

The lower floor of our split-level hall looked further down than it should be. I hesitated at the top of the two steps whilst I prepared myself for the descent, which I managed without incident.

My girls were there to meet me. The whole family sat, socially distanced, reminiscing the events of the long weekend; the highs, the stresses, the dramas, the humour. Having all been apart, we had different experiences of the same weekend. One big debrief. For the first time, by coming together, we worried we had breached Covid rules.

Every cell in my body was fatigued, but it was a nice tired. Satisfied. I’m home. I’m alive. And all my family have come together to support me and one another in a moment of fear.

I’m fine going up the stairs…straight, head forward, three flights, and Andy behind me. It’s over!

DAY 5 – Tuesday

It’s not over. Waking up feeling ill again. Feeling ill in hospital is one thing, feeling ill at home is depressing.

It’s a day of learning. I find I enjoy iced water to drink, cool moving air through a window, a calm view, curtains closing, and a space that’s my own.

I discover I can’t eat with cutlery and watch TV because the alternating eye movement needed to keep an eye on what’s on my fork and see the TV, causes my head to spin. Generally, I find the TV over stimulating.

The floor feels like its gently writhing as I walk on it. I get sensations down my back and down the inner sides of my arms and palms as I walk. It’s hard explaining to people that my legs are fine but walking is difficult.

DAY 6 – Wednesday

Success! First morning waking, feeling OK.

Highlights of the day:

A figure of 8 walk in my bedroom. Some tingly sensations down the back of me, but OK. Didn’t get headachy. Felt stable.
A sit-on-the-floor shower. Bliss!
Flowers and gifts from well wishers
Balance. I can stand on one leg in a yoga pose. Why?

Lowlights of the day:

I decided to do head exercises.
When I tilted it to the right I felt like my brain was sliding through my skull.
I go down to the lounge in the evening but I can’t enjoy it. I just want to get back upstairs to my safe space.

Learning of the day:

Sudden noises, or new environments, can trigger my symptoms, or make me unsteady. Like crossing the threshold from the hallway to the bright bathroom with the fan noise.

Tomorrow I aim to wash my hair, sitting in the shower. It’s currently looking like I’ve back combed it and it’s too tangly to brush.

DAY 7 – Thursday

Of all the skills I want to get back, waking before 4am is not one of them. Lying still in bed though, my body feels normal. Still making progress.

Getting up to the bathroom however, I’m tingly and mildly nauseous, headachy.

I need to get out today. I need to make a connection beyond the bedroom and lounge.

Highlights:

Hair washed! And oiled. And untangled. With the help of my daughter.

Stepped onto the lawn

Sat in family room downstairs.

Lowlights:

As it turns out, I didn’t ‘get out there’ as far as I had anticipated. I went onto the lawn but, totally out of character I soon wanted to retreat. I sat in the family room, a lovely location, but wanted to return to bed after 45 minutes.

In the evening I ate in bed, rather than coming downstairs to eat, to help me work out if it’s downstairs or the food making me worse in the evenings. I discovered it’s the food. I later came downstairs and was awake until after midnight.

Learning for today:

Andy has stamina. He’s working, supporting me, and running the house. His wrist thing says he’s done 161 flights of stairs today.

DAY 8 – Friday

A good day.

Highlights:

Spent a total of 3-4 hours away from my bedroom, with virtually no nausea. The tingly sensations down the back of me when I walk are diminishing.

I had a lovely 15 minutes sitting in the hot garden, dangling my feet, imagining that I was splashing them in a pool of cold water, whilst Andy, (bless him) sweat it out cutting the grass. Interestingly I found this position to provide a very solid base from which to do my ‘head exercises’.

Made myself a cup of coffee
Fed the cat – twice (including bending down to the floor)
Ate and enjoyed my supine lunch – raw veg sticks dipped into houmous.
Ate and enjoyed Maltesers (previously I had no appetite for chocolate)

And hear this – I got dressed! Joggers and vest top, entirely by myself.

Once the air had cooled in the evening, I had a trip out. Andy pushed me in a wheelchair along the Sett Valley trail. I’ve walked that trail 1,000 times, but now I saw it from a different height, and views I’d never seen before. I felt vulnerable out there. Was that the ridiculous embarrassment of being in a chair, or was it something else? As I walked out of the house, I looked up at the bus passing by to the right of me – woooaah. And as I walked down the cobbles towards the trail, I had to remember not to look sideways. Note to self – even during those ‘woooah’ moments I don’t actually fall over.

Lowlights:

None

Learning: After getting myself dressed my blood pressure was 140/96. A pre-stroke typical blood pressure for me would be 96/60. Apparently, it was similarly high during my stroke. I checked it repeatedly through the day, including when I had headaches, and there was nothing else concerning.

DAY 9 – Saturday

Oh dear. I’m struggling to think of anything good to report. Today was a wash out. No energy. Zero motivation.

People talk of brain fog – in contrast, I have head fuzz. All the sensations are wrong. My skull is fuzzy.

By bedtime I was a tiny bit worried. I felt I was going backwards, the generalised vertigo and nausea just surfacing again, together with the sense of having been hit across the back of the neck with a metal pole.

I don’t know why today turned out that way. Perhaps the weight of the week just landed. Or perhaps yesterday’s gains need time to consolidate. Or perhaps the Occupational Therapist who recommended rest, was right.

Learning:

Messages, although tiring, sustain me.

DAY 10 – Sunday

I woke determined to get it right today. And it paid off. I had an equilibrium sort of day.

I sat for a while in the wild part of the garden. Wildlife is abundant there, particularly butterflies today.

My head doesn’t seem to tolerate the sun very much, even seeing it from the shade, so I didn’t stay out for long, but I enjoyed it.

I did no ‘head exercises’ today. It has dawned on me that perhaps a bruised brain (or more accurately a partially deceased brain) doesn’t want to be slid around in its skull. Nor is it ready to be ‘re-educated’.

So today I acted like a sick person. I mostly stayed in bed, venturing out occasionally, briefly. (I had another push down the sett valley trail! 😊 )
It was good. I even managed to concentrate on some TV.

Highlights: All of it
Lowlights/Learning: I discovered that looking at a laptop screen and sideways to written notes, immediately hurts my head. So Andy set me up an easel type construction, directly beyond my laptop screen, and I lay perfectly ok in bed, typing some notes, never once having to look sideways. Reasonable adjustments I think it’s called. (My work colleagues, if no-one else, will get that)

DAY 11 – Monday

Monday, again.

Yesterday I acted like a patient and had a good day. For some incomprehensible reason, today I decided that acting like a patient was going to delay my recovery and that I should, during moments of activity, act normally.

I don’t know why I have to ‘act’ anything. Why can’t I just be myself? The morose answer is that I don’t know who myself is. I’ve never been this person before. ‘Get over it Jackie’ I hear myself say, cruelly.

So today I

Tidied away some bits in my bedroom
Tidied away some bits in the kitchen
Had a sit-down shower without Andy knowing
Got dressed in normal clothes
Took steps without hesitation, without a wide gait, without a stick.

Highlights

A car ride! Apart from the mild nausea it induced, seeing the world and feeling like I’d achieved a task, felt good. In reality of course it was Andy, not me, who achieved the task. But I provided my company.

Home-made lemon curd from a well-wisher. With a butterfly card!

Lowlights

The Iyengar yoga that I so loved during lockdown will have to wait. It upset me a little to find I can’t be on all fours without my head hurting and the world turning.

Learning

When tidying the kitchen, bend at the knees, not from the waist.

DAY 12 – Tuesday

I woke up feeling optimistic. But confusingly, by midday I was struggling. I felt lost without the ability to plan. Stroke and Covid were conspiring together against any goal setting, plans, or activity. Perhaps the heat was taking its toll.
So, Andy and I went for a walk – no wheelchair, just a walk. Not our usual 2-5 hours, but an equally thrilling 10 minutes around the block. I wore dark sunglasses. Quite possibly, with that, and the stick, I looked blind.
It felt so good that we repeated it in the evening.

The therapeutic powers of putting one step in front of another.

My brain tells me I need to walk one step at a time, plodding, But my brain, on this occasion, is wrong.

I can over-ride my instinct, walk fluidly, with a relaxed body, flowing, and I don’t fall over. At worst, at a curve or incline, I might feel brain whirl, but that’s it.

Most significantly, I survived the day without huge payback. This ranks up there with all the other ‘turn-a-corner’ moments. (I laugh at the numbers of corners I can turn without ending back where I started.)

Highlights:

For the first time, despite my activity today, I was able to spend the evening in the lounge, to smile, to focus, to re-position my body almost without thinking about it, pain free. Normal.
My brain and I have found our balance, negotiated, signed our peace treaty. I’m done arguing. I’m moving forward, gently.

Learning:

Walking is easier on the brain than pottering.

DAY 12 – Wednesday

Highlights:

My walk out. Space. Freedom. Air. Direction.

I slightly extended the 10 min walk to include the path though bluebell wood but I became fatigued, head fuzz, and developed mild headache on return. Probably at my limit. I’ll try it again tomorrow.

I left my bedroom in the morning and didn’t return to it until bedtime.

I no longer feel such a need to retreat to my safe space. Assisted by the fact it’s hot up there.
Text chats
Expecting parcels. I’m overcoming my reluctance around Internet shopping. I bought two gifts for Andy to say thank you, one of which was socks. The stroke clearly hasn’t helped my imagination. To be fair he had kept going on about needing some.

Lowlights:

None 😊

Learning:

When a song thrush walks up to you, looks up at you and cocks his head, don’t copy him.

DAY 14 – Thursday

Today was a wash out. A lost day.

I woke for the first time with a stiff uncomfortable neck and slight headache, but they soon diminished.

I washed my hair by myself. It felt good apart from the moment when I realized I can’t do the head upside-down flippy thing with the towel, and I struggled to find an equally effective alternative.

Hair roughly dried, feeling OK, I looked forward to accompanying Andy on a brief drive out at 10.30am. I don’t know if it is Andy’s driving, but it triggered a headache that put me back to bed for the entire day.

Highlights: Struggling with this section today. The best part was an unexpected letter and flowers from well-wishers.

Lowlights: My girls visited but I was unable to fully chat to them.

Learning: Stop trying to learn things

DAY 15 – Friday

Yesterday was a wash out.
But today was a good day.

Highlights:
• 2 x 15 minutes walks, both enjoyable, and both with minimal payback. For those reading who are not yet familiar with the crime and punishment model of stroke rehab, payback is what you get for overly stimulating the brain, forcing it out of its self-protection mode. In my case, payback comprises of harsh headache, a little nausea, and general malaise.
• There have been several occasions when I’ve turned my eyes or head beyond or faster than I would normally, and with no ill effect. “look at me Andy – I’m turning and looking at you!”
• An appetite that is improving such that I feel almost ready for hot food again.
• An hour+ conversation with a neuro physiotherapist which I found useful. And payback was minimal.

Lowlights:
None that I can think of
Learning: Since yesterday I’ve stopped trying to learn things.

However, that doesn’t mean I’ve stopped noticing things…
People’s words of intended kindness include “have a glass of wine” “sit in the sun”. It turns out that when one’s brain, desperate to protect itself, takes control of decision-making, exerting its control through paybacks, it states clearly what it needs. At the moment, for me, alcohol doesn’t appeal, and the sun is rarely tolerable.

DAY 16 – Saturday

Why is it, when not working, that Saturday feels like such a great day?
I woke ridiculously early, which is normal.
I woke thinking of work, which is normal.

The air was fresh. Such a contrast from the preceding days and weeks, and a pleasure.

I looked on my phone for a book to read. I haven’t wanted to read one since the stroke, despite time on my hands. Now I find myself awake and wanting, rather than avoiding, stimulation. I find a book I must have downloaded a long time ago and forgotten about, set in Iceland. It feels good that I have reached a point where I can enjoy taking my head into another world again.

I have also learnt to understand the therapeutic power of rest. It’s taken me a while.

So, this morning I watered the pots outside, made a drink and snack, went for a walk, and followed it by a paracetamol and a midday nap. In the second half of the day I had a phone call, watched Andy check the bees, played Scrabble on my phone, attended to lovely gift from a well-wisher, followed a TV police drama, AND had a hot pasta in a fresh salsa. Having given up on hot food 9 days ago, this is a new first.

I was so pleased with how I felt today that I threatened Andy that I could do a pirouette. “No!” he said in a serious tone. To be fair I hadn’t actually intended doing it, but I smiled at the thought that if the physio asked me again what was my goal I could tell her “a pirouette”. It might earn me a good long episode of care.

DAY 17 – Sunday

Pride, it is said, comes before a fall.
I was proud yesterday of having mastered the ‘rest thing’, and having the lightness of mind to even contemplate a pirouette.

Today was a day overwhelmed tiredness. I went for my midday nap at 9.30am.
Around lunch time we took our shortest walk yet, just to get me out.

My brain was ok, just overly relaxed, to the point of sleepiness and lethargy. I considered whether this might be the ‘Tranquility’ candle I was burning – a gift from a well-wisher. I like this candle. Set in a stone cup, in muted colours, it has a subtle aroma. I had enough energy to google it, where I discovered it contains lavender, orange and ylang ylang, all of which have a soporific effect. I stopped burning it at lunch time but remained washed out till bedtime.

Feeling low with inactivity, in the evening I asked Andy to take me on a small drive out, to get some distant views. It is more than 72 hours since my last car trip, a long time in my recovery, and I reason that it is time to test me out again.

It wasn’t a success. However careful the driver, acceleration and deceleration are inevitable, and the painful truth is my head can’t cope with either. I spend the rest of the evening with my head feeling too heavy for my neck and a ringing that reminded me of entering quiet toilets after leaving a noisy night club. My long-term memory clearly still OK.

DAY 18 – Monday

I’m fed up with this. Initial progress has become slow, dragging, with almost imperceptible change. My efforts to get well have turned into waiting, in limbo. I feel neglected by the NHS.

Tomorrow I should be back at work. Due to my fit note (I’ve no idea who wrote it) I believed there was a chance I might be better in two weeks. Today the reality is here. I am not fully fit and I am waiting for my GP to get back to me about this.

Keeping my head together has required as much attention as teaching myself to walk normally. Now I can hear the concern in Andy’s voice. He notices that I don’t talk incessantly, nor try to do more than I should, nor get out of bed. But he shouldn’t be worried. I’ve simply given up trying and gone for the waiting option instead.

Highlights:

Thoughts from well-wishers are continually uplifting. Thank you x
Hearing what others are up to
Finding a house on Rightmove that looks interesting should the development behind us go ahead (when there’s nothing else to do, go on Rightmove)

Lowlights:

Writing a downbeat blog for today. Apologies, but it is important to me this blog is honest.
A desire to avoid the ill effects of car travel and not feeling up to public transport, nor the risks associated with it – I feel trapped.

Learning:

The difference between the level of care in hospital and community is staggering. I’m going to contact someone tomorrow, tell them what I think, if I have the energy.

Jackie's Story - Cerebellar Stroke at 55 — Nzdl.org

DAY 19 – Tuesday

I’m back. The day started like yesterday, in bed waiting for the effects of the stroke to pass.

However, after a productive morning of calls and messaging, at 2pm I found myself unexpectedly ready to get up and out.

I hatch a plan to be driven on a straight road to a pond shop to pick up some waterlily, hoping to slow the proliferation of algae in our wildlife pond this year – something I’ve wanted to achieve since March. There is a risk I will lose the rest of the day to head pain. There is also the potential to feel good. It’s a gamble.

Andy’s not convinced, but goes with it.

Our wild garden is enjoying having been left for three weeks. My tamed paths are disappearing, and brambles stretch across spaces previously kept clear. I can’t do the garden right now, but perhaps I can buy a lily and drop it in the pond.

The good news is I survived the trip. It transported me back to shopping in the early 70’s with my Mum. Andy and I stood at the gate talking to the shopkeeper who fetched and bagged the items for us. I wonder where he was transported to, talking to a customer with a stick, dark glasses, and a mask.

In the car I adopted a new technique. Eyes closed, neck flexed, and turning into the bends as I felt them. It turns out that even straight roads have bends.

Arriving home, I took the precaution of going to lie down to let my brain recover. I remembered the cooling facemasks from well-wishers. It was bliss, cooling my whole head. With some re-branding it could be a therapy product.

DAY 20 – Wednesday

A perfectly OK day.

Highlight:

My highlight was a conversation with a person from the hospital stroke team. He lives in a place I know well, is overstretched because of Covid, and told me why he is about to retire. He might still be there to do my 6-week review, which due to Covid, won’t be at 6 weeks.

I thanked him for ringing me back. It was nice talking to him. He was the first person I have spoken to with an understanding of the discharge letter.

I now have a hotline to information. This helps.

When I speak to clinicians, I am forgiving of things that don’t sit right with me, but it doesn’t make them any less jarring. I try to ignore them and let the conversation move on. They arise because the person doesn’t know as much about me as I know. Sometimes clinicians seem to give advice without having asked any questions.

Lowlight: Andy burnt his hand whilst cooking. I ‘jumped up’ to help and I crouched down to mop the oil. It was either this, or the hour phone call that happened to follow it, that led to rapid deterioration. I had a pushing down sensation down head and back, head too heavy for neck, and a buzzing of my brain. But it reminded me how far I have come because I used to get this a lot. I immediately took full rest, and recovered within 20 minutes. Andy is fine too.

Learning:

It helps me if I stop thinking of myself as recovering and instead determine this is the new me. It means I am out of limbo, which feels extraordinarily good. If I change, so be it, anyone can change. But for now at least, this is me.

DAY 21- Thursday

Another perfectly OK day.

Highlights.

A little bit of this and a little bit of that with head rests in between
A walk around the village with Andy
A visit from Chloe (and Amber tomorrow)
A phone call with my parents
A remote game of Scrabble with my sister

Lowlights

Difficulty crossing roads because ‘look right, look left, look right again’ is just not going to happen.

Learning

I said yesterday that I was going to stop focusing on recovery, to stop being in limbo and instead ‘just be’. This has helped enormously. I know it is a mind trick because there are of course important things that are dependent on recovery, but it is a mind trick that works for me right now. It means I can enjoy my world as it is, rather than giving so much importance to things I have no control over. I’m happy in this world and happy not trying to be somewhere else.

So today is the last day of my blog. Perhaps I’ll do an update one day, if I feel motivated to do so.

The blog, particularly in the early days, was so therapeutic to me. Writing it gave me a reason to sit up each morning. It helped me remember the progress and change. And it enabled well-wishers to connect with me, and me with them.

Thank you everyone who has read it. Knowing people care has been more important than I ever imagined.

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