Stroke Recovery

On 11th May 2010 I had a stroke at my desk in work. Luckily my team leader called the First Aider, and he took one look at me and called the ambulance. The stroke left me paralysed down the right side. This is the story of my recovery. It was documented in separate posts, but when I moved my blog I decided to put them all here, in the hope they may one day be of use to someone in the same circumstances. I include extracts from the daily diary I kept to remind me of my progress when I felt low.

While in hospital I wrote a flood of poetry, which I later put into a booklet entitled My Stroke of Inspiration, which was sold in aid of the Swansea Disabled Christian Fellowship. Because many people found it helpful, it is now available, revised and updated, as an ebook on Amazon UK and US. Two of my poems follow, and then my story.

The night hours could be long and lonely, not just as a result of the stroke. I suffered a lot of nausea and involuntary spasms which kept me awake. This is how I coped. I was never keen on blank verse before, but I suddenly discovered the power of it.

Night Hours

In the long hours of the night
I practice patience.
Weave each minute into the tapestry
of time passing.

A whole night is unthinkable,
an hour unbearable,
but a minute I can manage:
one at a time.

Trace a pattern on the wall,
listen to the weather,
recall long-forgotten memories,
write poetry.

All serve to pass the time,
build minutes into hours,
but when all else fails
reach out in the darkness
and hold the hand of God.

My husband Michael was very careful to be positive in all discussions about my future. He was determined to keep me from slipping into a ‘poor me’ mindset. This made me think about allowing people or circumstances to make you a victim, and this poem is the result.

Victim

You need not be a victim
when your life gets really bad.
‘Victim’ is an attitude
which you do not have to have.

Sometimes life is very cruel,
unfair troubles come around.
People take you for a fool,
try to break your spirit down.

In your head you can be free,
keep your dignity and pride.
Whatever comes externally,
you can still be strong inside.

So never be a ‘victim’,
or fall into pity’s way.
Keep your determination,
and hold your head high today.

How your attitude can change when you view things from a different perspective…

Milestones

Day 1/2 Got up in chair using Stedy stand already. My hips good and brain clear. Failed swallow test first day but passed second, so allowed to drink and progress to eat.
Day 3     Really impressed with me at physio and speech therapy.
Day 8     First speech therapy – lots of exercises.
Day 9     My knee straightened on its own and my arm stretched more than yesterday.
Day 11   My leg moved!
Day 20   Out in chair for 4 hours. More movement in leg and less tightness in arm.
Day 21   Physiotherapy brilliant and I walked a long way in a stand!
Day 22   First writing practice legible.
Day 23   Physio walking and standing. Getting it sussed.
Day 24   Physio on standing and reaching.
Day 25   Michael took me out in a wheelchair for the first time.
Day 26   Did lots of speech therapy exercises and got my vocal range from 13 notes to 15.
Day 27   Physio tried to make my chair sitting easier and gave me tips on laying on my side.
Day 28   Good physio walking with a tripod cane.
Day 29   Physios got me walking with tripod cane in my room out to the corridor.
Day 30   Washing and dressing assessment good – put my own knickers on and washed my legs.

1 Month
Day 31   Physio  – walking with tripod cane unassisted except for positioning my foot. Have strap to keep my foot up.
Day 35   At home physio will not be every day and only for 6 weeks. Good to stay to take advantage of physio every day, but weigh that against morale. Physio convinced I will do well anyway as I am so determined.
Day 36   Practiced transfer between bed and chair on my own. Can do most except get my bad leg on the bed. Fitted for splint on arm to wear at night.
Day 37   Went down to the flat and practiced on the bed. Can get in on left side but not on right, but they have gadgets they will show me. Bed lever on left works well. Can manage without on right.
Day 41   Walked from bed all the way to the doors for the men’s side.
Day 43   OT practice transfer to commode – good. Good walking practice with physio.
Day 45   Commode in room so I can go by myself.
Day 49   Walked all the way from my bed to the couch in physio and over half the way
back.
Day 52   Home.

Day 59 Went round the block in my wheelchair.
Day 63 Physio really good. Movement in hamstrings and lifting knee. Standing more on right leg.
Day 65 Good response in knee. Rest but no sleep this afternoon (so staying awake all day now).
Day 69 Did exercises and walked across room and back with Michael.
Day 70 Physio practiced standing without bad knee going towards the good one. Walked across room and back twice.
Day 72 The physio’s showed me how to get out the front door and into the car. I’m free! And I walked to the front door and back.
Day 73 Went out in the car today to Mumbles, parked on the sea front and had an ice cream. Didn’t feel tired.
Day 76 More confident in walking so walked around the room on my own.
Day 77 Physio taught me how to tackle stairs. Can’t come for a week so practice on one step until can do 10 in a row. Then I can tackle our stairs!
Day 78 Practiced on step. Went to town in the car and wheelchair. Went ok. Walking in room a little.
Day 79 Walking round the room more.
Day 80 Walked round the room twice.
Day 81 Practice: 5 stairs, 2 sets of 10 knee lifts, 10 leg extensions.

MONDAY, 2 AUGUST 2010
My progress continues to be remarkable. It’s only 12 weeks since my stroke, and two weeks ago the physio’s taught me how to get in and out of the car, and last week they taught me how to climb a stair – but I’ve only practiced on one step.

Well, yesterday afternoon I went to visit my daughter’s new flat which is on the ground floor. What I didn’t know was that it has 3 steps outside. Well, I walked up the steps! There was a hairy moment, but I did it. In the flat, the wheelchair wouldn’t go in the bathroom when I had the tour, so I got out and walked into the bathroom and back. And then when we left, I walked down the steps, which is the first time I’ve walked down.

Added to this is that every time I go out I walk from the front room out of the front door onto the path and sit in my wheelchair, and back when I come home. Yesterday I came back, grabbed a few minutes rest and then went out again.

After twelve weeks, I went to church! Michael came too, and he hasn’t been to church either because he has been too exhausted with visiting me and looking after me. I got quite emotional, because it was so lovely to be in church after the way God has looked after me – which was a problem because one of the effects of the stroke is that I can’t control my emotions. I can’t have a little giggle or shed a little tear, I go completely to pieces. Luckily I managed to stop before I made too much noise!

I hadn’t thought what effect it would have on the people in church to see me there. Everyone has been praying for me, and I am in the notices for prayer every week. So when I arrived there was great rejoicing at the evidence of prayers answered. It was lovely to see them and to bring such a blessing.

Who knows what next!

THURSDAY, 5 AUGUST 2010 Upstairs
The Physio’s came today and were so pleased with my progress that they got me to walk all the way upstairs to the bedroom! I rested on a chair on the half landing and then climbed the rest of the way and sat on the bed. After another rest I did the same in reverse. I was very tired afterwards.

The Physio’s said this means I can now sleep upstairs, which was a real surprise. They pointed out that I would only have to go upstairs at night and downstairs in the morning, not do both together as I did today. When I calmed down from my delight I realised there are a few logistic problems, so it may be a while before I can actually sleep upstairs. We will have to work it out.

It does mean that I have access to the upstairs. Up until now I have had to ask Michael to fetch things, and I can’t always remember where they are. So the limits of my world continue to expand.

Milestones
Day 82 What a day! Went to Aggi’s flat and didn’t know she had 3 steps outside. Held on to Michael and walked up and in the door up another step. A bit hairy but I did it. Walked from the kitchen to see the bathroom, and back. Then walked out again, the first time going down steps. OK but bad leg hangs in the middle so I have to step left, then shuffle right again to have room to take the next step. Then we went to church. And I got out of the wheelchair into a seat. It was so good to be there that I cried. It was a real blessing for those who have been praying for me too. Really tired afterwards though.
Day 83 No after effects from yesterday! Physio’s came and I walked up the stairs! Sat on a chair on the landing for a rest and then walked down again.
Day 84 Practiced on the bottom step. 7 repeats.
Day 85 The Physio’s took me on the stairs all the way up to the bedroom! I rested on the landing and sitting on the bed and then walked down again. Then they said I can sleep upstairs because I only have to tackle one way at a time. We were stunned. I’ve only been home a month. Have to arrange some things first.
Day 86 Julian and family came to visit and I got up to open the door to them.
Day 87 Went upstairs and pottered around in the back bedroom then in the middle bedroom and found some things I wanted then came downstairs. It was great. My leg didn’t waver once.
Day 88 Went to the door for Dan Anna and James.
Day 89 Church again.
Day 90 Commode for bedroom arrived.
Day 91 I was concerned about being too tired at the end of the day to climb the stairs, so we tried it tonight and I was fine.
Day 92 Physio’s discovered I can lift my knee when laying on my back and a little when standing. Previously couldn’t fight gravity. Then went out and tried out a scooter from Shopmobility. It was great. No more wheelchair in town!
Day 93 Went upstairs to wash and dress in the bathroom. Will do that in future.

The Future [Written in hospital]
If you are going to a place you don’t know, it’s a good idea to get a book about it or speak to someone who has been there, to prepare yourself for what you will find. The future is somewhere we are all going, and no one has ever come back to tell us what to expect. We guess the future based on the present and our plans, but we cannot guarantee anything. We simply hope. ‘Since no man knows the future, who can tell him what is to come?’ [Ecclesiastes 8:7].

Most of the time we expect our lives to go according to plan, but sometimes it changes beyond what we can cope with with minor adjustments. We have to do a major rethink. I recently had a stroke. There was no warning, and my whole life stopped. No going to work, no visiting my family and friends, no going anywhere. I completely lost control of my life. Now someone else decided when I should get up and go to bed, what I should eat. Gradually I am getting a little control, but I still can’t get out of bed on my own.

The Christian faith gives a bedrock at a time when all else is shifting sand. We do not know the future, but we know Someone who does, and although He doesn’t tell us what it will be, we know that He will look after us. ‘And we know that in all things God works for the good of those who love him.’ [Romans 8:28].

The other thing God is that He has a track record. He has always been faithful and we can rely on that for the future. Paul said, ‘My God will meet all your needs according to his glorious riches in Christ Jesus.’ [Philippians 4:19]. He doesn’t always meet our needs in the way we would like him to, but when we look back we can see that He worked for our good.

Jesus told us not to worry: ‘Therefore I tell you, do not worry about your life … Who of you by worrying can add a single hour to his life? … So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them.’ [Matthew 6:25,27,31,32]. He was not saying we should be careless about making provision, but we should trust God for the future. Notice also the mention of what we say. Negative talk feeds our fears, whereas positive speech about trusting God feeds a positive attitude. God should be in our plans as well as in our actions. Ask Him to be with us as we plan, but then get with making the best of what comes.

The future is a scary place, especially when life takes a left turn. A reassurance that Someone is watching over it with our benefit at heart makes a big difference.

WEDNESDAY, 25 AUGUST 2010 Almost Back to Normal
Yesterday our son Daniel helped my husband Michael to put the bed upstairs and put the sofa back in the living room. I sleep upstairs and wash in the bathroom, and because I am upstairs I can choose my own clothes in the mornings. It’s wonderful to be nearly back to normal. I still need my commode until I can climb the stairs on my own, but I am determined it won’t be long.

We went out to see the stroke nurse this morning in awful rain, and coming back Michael left my cane behind. I used his walking stick to get back in the house, then he went back for it. But good came out of it because I walked successfully with an ordinary walking stick rather than a four-legged cane. I have also been taking tiny steps with no support.

I just need to get my legs stronger, and help for that comes along next week when I go to exercise therapy. I have been going to the exercise therapy gym at the doctor’s for several years because of my fibromyalgia, and the exercise therapist there is marvellous. As soon as he heard about my stroke he said to get referred to him again and he would look after me. My assessment is next Tuesday (31st August) and he will work out a program of exercise, for me to attend once or twice a week. I can’t wait.

FRIDAY, 3 SEPTEMBER 2010 Exercise Therapy Assessment
This has been a busy week. The most significant thing was my Exercise Therapy assessment on Tuesday. I have been looking forward to this, as my physiotherapy has finished and now I need strength in my legs. As far as I was concerned, the assessment was a formality, to determine the programme of exercise that I need. However, it didn’t turn out that way.

First the good news: I have lost a few pounds since last week, my muscles % is right, and my blood pressure is OK.

The bad news: My resting pulse rate is 104 and they won’t let anyone do Exercise Therapy with a pulse over 100. It was a real surprise as it was OK in hospital. The problem is that exercise raises the pulse rate, and if it’s high already, that is dangerous. The Exercise Therapist is going to talk to the doctor and let me know. The only treatment is more walking to strengthen my heart or medication. There is no appointment available at the doctor’s until next Wednesday.

So I am trying to walk about more, and waiting until next Wednesday. Please pray for me, that my pulse rate will come down, and I have the chance to get fitter under supervision.

SATURDAY, 11 SEPTEMBER 2010 Exercise Therapy At Last
I finally got to start my exercise therapy, but I had to go via the doctor first. It was quite funny actually, as the doctor checked me out thoroughly and said she could find nothing wrong. So it is official – there’s nothing wrong with me! But I still have a high pulse rate, just over 100. She took some advice and talked to the exercise therapist. He pointed out that right now I’m not up to doing anything that’s going to raise my pulse rate anyway!

So I was allowed to go, and started right away. The great thing is that I was attending exercise therapy for a few years before my stroke, so I know the therapist and the gym well. Familiarity really helps when you’re nervous and feeling vulnerable.

We worked first on my bad arm, which the physiotherapists ignored after the first 6 weeks, so it was pretty stiff. But we were amazed at how much it improved, even though there is still no life in it – yet! He showed Michael how to do the stretches for me so we can do them every day.

I went on the cycle and then he made me sit on a high seat and stand up and sit down without holding on – 10 times! It was hard work but I felt great afterwards.

SATURDAY, 18 SEPTEMBER 2010 Three Firsts
Had a great two days, Thursday and Friday. On Thursday I decided it was time to start walking outside. I wasn’t sure how far I could walk, so I went as far as I could and Michael came behind with the wheelchair to take me back. I counted gates, since I live on street of terraced houses, and I walked 6 gates. This is in addition to walking out of the house and back in again afterwards.

On Friday, instead of having my normal strip wash, I had my first shower! Our shower is over the bath, but Michael found the bath seat, and helped me swing my legs over the side of the bath. It was so wonderful to be under the running water.

Then on Friday night it was my daughter Aggi’s birthday gig, held in a place upstairs with no disabled access. I not only walked in, I climbed one long flight and two short flights all in one go. After sitting for two hours, I then walked down again in one go too. It was a lovely evening, made all the more special for me because I was able to be there.

So, I am more and more mobile. It won’t be long before I can walk outside on my own – I am determined. I also have a goal to give up my quad stick and only need an ordinary stick. Watch me go!

TUESDAY, 21 SEPTEMBER 2010 Walking Outside
I have done it – I am walking outside. Only slowly, and not far, but I go every day, and as my legs get stronger, I go further. Apart from the distance, something people may not realise is that it is dangerous. What you take for granted, for me, after walking on carpet, the ground outside is very uneven. My toe catches on the slightest thing, even indoors, and I am liable to lose my balance.

Anyway, I am doing it. I have got up enough confidence, and my balance and walking have improved to the point that I decided to give it a go. I live on a street of terraced houses, so decided to count gates to measure the distance, but Michael paced it out and we think one gate is about five yards (or metres). In addition I walk from the living room to the front door and down the path to the street, which is another five yards out and five yards back again.

The first day I had no idea how far I could go, so Michael walked behind me with the wheelchair. I walked six gates before I got tired and sat down. Michael wheeled me back again and I walked into the house. Total distance about 40 yards. The second day I walked three gates out, turned round and walked three back, and into the house. Total distance 40 yards without a sit down in the middle. Not only does it make my legs ache, my arm aches from leaning on my stick. Goal – not to lean so heavily or so long.

Then I did four gates on two days, and today I did five. Distance today 60 yards. When I was in hospital learning to walk, Michael used to joke with the physiotherapists that he was going to put my name down for the Swansea 10k race (which is next Sunday as it happens). Well, by next year I might surprise him!

SATURDAY, 1 JANUARY 2011 New Year’s Resolutions
It’s New Year’s Day, and thoughts turn to last year and this year. Here are my goals for my stroke recovery this year:

  1. Learn to walk without a stick [Note: Achieved, indoors and short distances]
  2. Walk round the block [Note: Achieved, & more, much more]
  3. Go back to work [Note: See post on retirement]

And my wishes:

  1. For my throat to return to normal [Note: Granted]
  2. For my right arm to come back to life [Note: Still waiting]

And a very happy New Year to you all!

THURSDAY, 24 FEBRUARY 2011 Retirement
I saw the company doctor on 1st February and he recommended a meeting to discuss my return to work. I have set my mind on going back to work as a goal to aim for in my stroke recovery. I realise I couldn’t work anywhere near full time, but I have been thinking about what I would need and how I would go about working, with my current limitations.

Then today, my boss came to see me with figures for ill-health retirement, which they are prepared to offer me. So I have a life-changing decision to make. Pray for me, and I’ll let you know.

Milestones
Day 105 The sofa is back in the front room and the bed is upstairs. Walked about a lot more.
Day 134 I walked from the car into the Ladies Fellowship! And out again after. That’s a goal met.
Day 144 Spent nearly 3 hours in the bedroom this morning standing, walking, and dragging the chair round the room to sit on. Then walked 6 gates and back this afternoon and had a shower before tea!
Day 219 Loads of walking and standing today. Went into work, answered the door twice, and successfully negotiated Carrie’s steps, so Christmas is on in her house.
Day 233 Made my own breakfast.
Day 234 Had a go at washing up – did ok.
Day 316 Balance assessment in RDU in which I scored 46/56, which means some risk of falling, but I actually scored full marks on all but the last 3 which involve standing on 1 leg. So we know what to concentrate on. Also did detailed work to identify which muscles need strengthening (adductors?), and the exercises I need.
Day 322 RDU: My work on the adductor muscles has really paid off – I can lift my leg further to the side and turn my foot out further after just one week. And I walked the length of the physio room and into lunch with no stick.
Day 337 Walked all round Lidl pushing a trolley, and then round Home Bargains. Actually got sore feet!
Day 355 Walked round the block. Timed it – just under half an hour.
Day 1[year].9 Washed up the breakfast things and dusted the living room thoroughly. (First housework)
Day 1.27 Physios signed me off today because I am doing so well and have met my goals.
Day 1.30 Speech Therapist signed me off today too.
Day 1.62 Can now walk up stairs using both feet.
Day 1.89 Walked from Swansea Museum to the Quadrant and came home by bus!
Day 1.98 Driving assessment in Cardiff – only need automatic and steering wheel knob. Went really well, but have to get used to automatic and braking with left foot.
Day 1.114 Saw Carole Saunders [Stroke Nurse] at the Stroke Clinic. She was gobsmacked (her word) at my progress and attitude and wants me to write an article about my recovery for her to use. NB so does Lyn Johnson [Exercise Therapist].

THURSDAY, 15 DECEMBER 2011 Surprised by Answered Prayer
Why are we always surprised by answered prayer? Is it because God so rarely does our bidding?

Since my stroke, I have been unable to drive, and I have spent the past few months going through the process of getting my licence back. I had an assessment in August which confirmed that I was medically fit to drive, and have since been having driving lessons in an adapted car.

It proved much harder than I expected to get used to a different way of driving. I got panicky when I lost control for a moment, and sometimes ended up in tears. Friends prayed for me, and I prayed for strength and concentration and calm. On the verge of giving up, it suddenly came together. Thank you Lord.

Today I had my second driving assessment, to determine whether I could successfully control a car and be allowed to have my driving licence back (suitably amended, of course). I was very nervous, and friends prayed for me, and I prayed.

Something I hadn’t bargained on was a magnifying of my emotions. A side-effect of the stroke was a condition called ’emotional lability’, sometimes rather unflatteringly called ’emotional incontinence’. It is an inability to control emotions, particularly laughter and tears. At first, a small joke would have me laughing so hard I couldn’t breathe, and a small kindness would see me sobbing uncontrollably. I have regained a lot of control as I have recovered, but not all.

Today I found my nervousness magnified hugely. Michael prayed for me and left me sobbing. By the time we reached the assessment centre I had to rush to the loo where I had diarrhoea and was sick. Yet when I got in the car, I was suddenly calm, and all went well. Thank you Lord.

Help me Lord, not to be surprised by answered prayer.

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