Patient experience and feedback

About me

Aged 51, Female

Pre Stroke I was scuba diving and running etc on a regular basis, non smoker, and well within the BMI for my height.

The start – 12 June 2012

Sat watching Holby City after a long day, with absolutely no idea at all that I would be in hospital within 30 minutes of the program finishing. Time for bed and as I straighten up my arm feels strange, and on standing my right leg is weak ; I must have been lying awkwardly I tell myself but somehow I already know this is more than that.

My Dad had a stroke when I was only 12 so the symptoms are etched in my memory. We drive to NDDH straight away; I am terrified; I know how debilitating a stroke can leave a person, and its devastating effect on a family.

We are outside of accident & emergency but when I get out of the car everything feels fine, so I instantly decide there is no need to go in, but Hubby and the duty Receptionist persuade me its best to get it checked out ‘seeing as we are here’.

Sat in the waiting room it happens again, I am soon seen by a triage nurse who confirms my blood pressure is very high and I am very carefully monitored and checked many times over the coming hours and after a CT scan I am told I will be staying overnight, the symptoms still ‘coming and going’ at this time. When they fade I can still convince myself its all going to be fine, and I can just walk out in the morning.

A few hours on the ward and its 7am, time to get up, I think I walk quite well, but in truth, it is with the aid of the nurses. Doctor’s rounds and its confirmed I have had one or more TIA’s or it could be a stroke but the symptoms of a TIA should completely go within 24 hours. I myself think I have been able to complete all the tests very well and have almost convinced myself there is nothing wrong. Steve pops in, and is relieved to see me looking so well.

Stroke Day 13 June 2012

Something terrible happens between my heart and neck scans in the morning and my MRI in the afternoon; for the first I can move around quite well and dress myself with ease, for the second I can hardly get up from the wheel chair and certainly cannot walk unaided. I have to ask the MRI operator for assistance, there are people all around but it is a very lonely time.

Over the next 24 hours I find it hard to calm myself, I am too scared to close my eyes in case I end up trapped inside my own body when I wake up. There is no pain, no warning, nothing, it is just every now and then bits seem to ‘fall off’ me. I can still speak and my face is not affected, but who knows what will happen if I close my eyes for just a second! Thank goodness for the nurses and physio staff, especially those cups of tea in the long night hours.

I need to stay calm try some relaxation techniques, but my concentration wanders .I never realised  my arm could be so heavy, and when I try to turn over it’s like I am loosing my balance yet I know I am lying on a bed.

I soon notice my right hand ‘curling up’,  I don’t know whether it’s the right thing to do but I decide to shove in under my pillow and then weigh it down with my head to make sure it has to stay flat.

Going Home

I m lucky, things do not get any worse and I get to go home on the second evening; it is great but also very scary.

Lucky for me, a Bobath course is being held at the Hospital and I am fortunate enough to be offered a place on it. The physiotherapists and the course instructor are all amazing and I will always be grateful for the work and effort they put into my rehabilitation for that first week.

The next 12 weeks -Multi-tasking is no longer an option!

The next day the Early  Supportive Discharge Team arrive, and there the next phase starts: Physio advice and a whole lot more on a daily basis for the next six weeks was a massive help to my recovery along with support from family and friends.

All I keep focusing on is that my ‘stroke hand’ has to ‘join in; I am left handed but despite that now expect my right hand to do everything.

I could never have imagined that every simple task could be so challenging, demanding complete focus and concentration. At this stage I cannot keep my arm resting on the table, and it really bothers me that I just cannot remember how to hold a knife, which seems crazy as I was doing it just a few days ago.

I decide to class every achievement as ‘another box ticked’. If I notice something, or someone mentions something; like the fact my stroke shoulder sags down just hanging off my body, then I immediately move to the other end of the sofa and prop that side up with a cushion. Everything focused on using my right side no matter how long it takes or how hard it is.

Hubby gets  ‘a little jumpy’ in the kitchen if I decide to help with the chopping for a meal or decide to get the mugs out of the cupboard for a drink; we have had a few breakages but nothing major and all fingers are still present!

Before I know it, I am walking swimming, cutting a nice steak with my stroke hand and walking up and down stairs with ease.

I can climb the boarding ladder so I can now go sailing; it takes a while to find my sea legs and I cannot dive (my passion) I am able to enjoy a good day out on the club boat to Lundy Island and its great to snorkel with the seals. I cannot feel any signs of the stroke when I am in the water.

This journey is not without its difficult times but they are getting fewer and further apart. I think I have broken my toe on my stroke foot; I have fallen over quite spectacularly in the middle of the high street; and a day with no tears is a good day. After going twice a week for over 6 weeks I was even asked if ‘I was fit to swim’ before I was allowed in’ at the swimming baths.

The Way Forward

My biggest battle is judging when I am going to get tired which then leads to deep dark moments some of complete despair; being consumed by everything that I can not do at this time.

I m back to work albeit part-time; I try to eat even more lettuce (but to be honest if I am tired will eat anything to keep going); and I exercise every day.

It is a massive learning curve and whilst I still consider the stroke to be a major disaster I also do appreciate how lucky I am.

Patient Story

I became unwell during the night of December 30th or 31st. I remember getting out of bed for the toilet and my legs gave way and I wet myself. I knew I had had a stroke and was upset.

I have no memory of going into hospital or the weeks that I was in hospital at Barnstaple. I moved to Bideford Hospital at the beginning of Feb, and I came home from hospital on Mothering Sunday. I felt the care in both hospitals was excellent.

The thing that worried me the most was how difficult it was to get food to cater for my celiac diet, and my husband had to bring in gluten free porridge, cereal and bread etc. I didn’t think I could have been the only person to have been in hospital on a special diet.

I have a very positive memory since my stroke and that is of the great help I have had from the therapy team and how much encouragement they gave me to be able to walk again. I loved the visits I had to the hydro pool and felt they really helped my limbs. Now it’s just my arm to wake up.

Last updated: October 3, 2017