“I guess I am not alone in remembering the early details of my stroke – it’s not the kind of momentous life changing event you forget in a hurry.  My stroke was over 20 years ago now, so some details have faded, and I can no longer recollect exact dates and times, but somethings are welded to my memory.  Whether that is because of middle age, I am fast approaching my 55^th birthday this summer or if it’s a bit of self-preservation I am not sure.

I’m a Lancashire lass, born and bred in Burnley, the youngest daughter of eleven children to a farmer and his wife.  I had a lovely outdoor existence and grew up fit and healthy.  Following school, I trained to be a Registered General Nurse at the local group of Burnley hospitals and qualified when I was just 21.  My fiancé Jason was studying at Preston Polytechnic at the time and all was great, lovely job, lovely boyfriend and great social life.

After polytechnic Jason got a job in Surrey, so off we went together to start our new life.  It was hard; I worked nights to get more money and Jason days as he was training.  We soon met a fantastic bunch of friends and moved to Camberley where we basically had a great time.  We married when we were 24 and just got on with life.  I then trained to be a Midwife (the best decision I ever made) and I loved everything about it and still to this day feel sad I can no longer practice. It was a privilege to be part of such a happy event for new parents.

July 1999 was a life changer, we had our daughter Esme-Robyn, I had a great pregnancy.  The only thing was good old nausea but I was healthy and happy and even went into labour on my due date.  I had a long labour, “typical midwife making hard work of it!” my colleagues teased.  I loved being a mum and we settled easily into being a new family.  I certainly enjoyed all the “mum and baby” stuff and made a new set of friends because of her.

December 21^st 1999 was the day all this changed, the shortest day of the year and one of my friend’s birthday, and a day I am never likely to forget.

I remember it was a cold December morning.  I was happily walking through the snow with my baby girl in her pram, when she was 5 months old.  My husband Jason and I loved being new parents, but I also loved my job as a Community Midwifery Sister.  Later that day I had an appointment to talk to my Midwifery Manager about returning to work after my maternity leave.

I had been to the gym that morning.  I’d always tried to keep fit, and I enjoyed my workouts.  I had picked up my daughter from the creche and we were walking home when I noticed that my right foot was dragging through the snow.  I tried to lift it but somehow, I just couldn’t.

I managed to get home and being concerned I made an appointment with my GP that evening.  Then I had a quick nap while my daughter slept.  When I woke I felt okay, all back to normal.  I drove to the hospital taking my baby with me to the hospital to the meeting I had with my Midwifery Manager about returning to work the following spring.

By the time I had driven the 3 miles to Frimley I had pins and needles down my entire right side.  I tried to take my seatbelt off and get out of the car, but it was a struggle to move and I felt like I was going to be sick.  I do not know how I got myself and the baby out of the car.  All I can remember is thinking I really need to get us inside the hospital.

My manager asked how I was when I got to her door, I said I felt sick and I couldn’t move my right side properly.  She got Robyn looked after by a lovely auxiliary nurse and she herself took me to Accident and Emergency.  The doctors then told me they thought I had suffered a minor stroke.  The plan was to send me home and then probably in the new year I would have a brain scan.  My husband arrived from work and he had had that terrible call from the hospital saying I was in the hospital, but not to worry I was in good hands.  My husband and my manager were not happy that I was being sent home without a scan.  They persuaded the hospital to keep me in and hopefully do an MRI the following day.  By this stage I was feeling a lot better (although still was a bit dizzy) and had pins and needles but was moving almost normally, just a bit lopsided.  Jason took our baby home to return the following day to take me home.

I must have fallen asleep on the casualty trolley, because when I woke up my entire right side was paralysed, I felt sick and couldn’t see properly.  Someone walked past and I remember saying my arm felt dead, and this person carried on by saying maybe I had “slept funny”.  I obviously wasn’t thought to be high risk.  I must have passed out again as the next thing I remember is being in a hospital bed with someone testing my reflexes.  I was so scared, I had walked into the hospital feeling a bit odd and now I couldn’t move and couldn’t see and I was finding it hard to swallow.  I was given a jab, I think to calm me down.

The next day at lunchtime they did scan me, it showed a blockage on the left-hand side of my brain, they diagnosed a brain stem stroke but it was too soon to know the extent of the damage or as to what caused it.  Meanwhile, my swallowing was deteriorating, and my tongue felt fat and heavy.  Speaking was difficult.  I was strangely calm, maybe because I was dazed, but I remember Jason coming into my room with red eyes.  He had been crying, he looked so worried, he’d been told to prepare for the worst.

I remained hooked up to drips for a week before being transferred to another hospital for rehabilitation.  Although I could sense hot and cold, I still couldn’t move my right-hand side of my body.  Nurses had to help bathe, clothe, take me to the toilet and feed me.  My face was numb, and I slurred my words when I talked.  I was scared, I was so cross and asked the “Why me?” question, it seemed so unfair when I hadn’t done anything to cause a stroke.  I didn’t smoke, I didn’t drink, I was slim and kept myself fit but then gave my self a bit of a stiff talking to, only I could do something about this situation, I had to do my exercises, take my medicine and get as much of my old self back as possible.

The next six months was a long old slog in hospital learning to walk, swallow, wash dress do all the things we take for granted and never give a second thought until they are taken from us.  The impact on my family was severe.  Jason took compassionate leave and became a full-time single parent.  He just got on with what he had to do.  I remember someone saying to him that “he was coping well” and he replied “what was I supposed to do, run away?”  A stroke just doesn’t happen to the survivor, it happens to the entire family.  The future they imagined together is turned upside down.   Everything changes and all have to adapt to this ‘new normal’, it’s so tough and everyone needs to work so hard to keep things together.  I’m no expert and can say that patience, some inner strength (some might say stubbornness), space to do own thing and laughter have helped us two.

Recovery was so slow, I wanted full recovery ASAP but my body had other thoughts.  My stroke affected me in many ways.  I suffered from extreme vertigo – my balance was all over the place.  It was like seasickness and morning sickness combined.  I was given medication to combat this but I still felt dreadful.  I wasn’t prepared for the exhaustion, either.  The effort that went into just having a shower or getting dressed just completely knocked me out, I would have to sleep for a couple of hours to recover.

I was up for anything the physiotherapists asked me to do, I enjoyed all the new things they tried to get me stronger I have a lot to thank them for.  The first feelings I remember getting back was in my leg and after 3 weeks I could stand and take a few steps with frame.  A couple of weeks after that I could manage to drag myself up the stairs, one step at a time.  This was vital for me to be allowed home at weekends, it helped my relationship with my husband and daughter.  Sadly due to the separation at night and the medication I had to stop breastfeeding.  Jason brought her into the hospital every day and stayed with me all afternoon and left after bath time, I was very lucky to have this time with them both.  We spent the millennium in the hospital room with Jason on an airbed and Robyn in a storeroom in her travel cot listening to the fireworks going off outside.

Having my daughter was a good motivation for me as it was a race as to who could walk the fastest.  She won as she was an early walker taking steps at eight and a half months.

After 6 months I started to get some movement back in my hand.  I still found everything a big effort at this stage, still felt like I was wading through treacle.  My vision was and still is impaired, I have nystagmus.  It is helped by prisms in my glasses and time has helped, but it’s still bad now if I am tired, stressed or had a couple of glasses of wine.

Even though I was impatient to make a full recovery and it felt so slow every achievement felt like a little victory.  I remember being discharged from hospital care after six months, still in a wheel chair and being told I had done amazingly well, and that what had recovered at that stage was as good as I was going to get.  I did not believe that for one minute, I kept on trying – and still do.  I kept trying to move, I don’t accept myself as I am, I keep trying to better myself.  I can’t list everything I’ve tried but if it doesn’t harm me I will give it a go.  If it doesn’t help me it may help another stroke survivor coming along behind me.  I have tried a whole host of alternative therapies, exercise regimes and regularly volunteer to take part in research whenever I can.

Twenty plus years is a long time and I don’t want to bore you with all that has happened so have just made a list.

• I had 6 weeks of care from the stroke discharge team
• Hospital physio for a further 8 weeks
• I had a carer so Jason could go back to work and Robyn went to the Nursery for 3 days a week.
• I had help from friends as my family lived hundreds of miles away – they were sanity life savers. Who knew I would love toddler groups.
• Home Start sent a volunteer to help me once a week for a few hours, we always went shopping and had a coffee – I was desperate to get out.
• I got my driving licence back after 20 months following an assessment at my regional driving assessment centre. It was daunting driving again in an automatic car adapted for me to drive left-footed, but after a couple of lessons to gain confidence I slowly rebuilt my stamina and skills.
• With driving came to opportunity to access more physio, I was given FES to try, exercises for my ‘winging’ shoulder blade, weak pelvic and shoulder girdles.
• I was officially retired from midwifery as my recovery was not good enough to return.
• I had botox a few times in my right arm and extensive OT therapy to help my right hand. Its not perfect but has helped me recover greater function than if they had done nothing.
• We moved to the Midlands in 2004

After a couple of years I got further involved with Different Strokes, Jason had discovered them when I was in hospital and got help and reassurance at that time.  I was just reading the newsletter one year when I saw that they were looking for volunteers to help out in the charity’s head office in Milton Keynes.  I applied and would just go into the office term time for 3 hours a week, I would try to be as helpful as possible from making the tea, to posting letters and Christmas cards.  Writing thank you letters and supporting the staff in whatever was needed.  As I got more confident I would talk to other stroke survivors to listen and support them and their families over the phone.  Overtime I have done more hours but have to be careful as I still do have fatigue but I love my work.  With a great deal of support from my colleagues who never moan when I ask for the hundredth time how to do something I have helped attend conferences, shared my survivors story, and taken on the role of Family Support Officer for two days a week.  I do have a great sense of pride that my misfortune can benefit others.

Not only did I have a stroke at 34, I had a career I loved that I had to leave, I have a daughter who we never intended to be a single child but is, I had to learn to care for her with one hand and dodgy eyesight and poor balance, we had a mortgage, bills and loans to pay, I still have some fantastic friends but lost some along the way.

All this is enough but then in 2011 my husband Jason had a stroke,  He was 46, and it was totally different to mine.  His was in his thalamus and although he has no obvious deficits Jason suffers with fatigue and memory loss and has difficulty learning new skills.  I am so proud of him as he went back to work eventually full time, although it exhausts him and he has even changed jobs.  I will encourage him to tell you his own story but this was a different aspect I didn’t think I would have to cope with. We celebrated our 30^th wedding anniversary last September with a lovely cruise to Norway.  We met at 16 so have known each other almost 39 years (….now I feel old)”