It's not over

October 27, 2011

BellAt the age of 30, I thought I was fitter/healthier than most of my friends; I really enjoyed cycling and squash, and I have never smoked. One morning on my cycle to work, I didn't reach work. That day in A&E was probably the scariest in my life so far, slowly losing control of my limbs and speech. The next day I couldn't talk at all, nor eat; I was bed bound. That was the start of what has transpired to be quite a journey.

One Monday morning during my cycle to work, having felt that I was getting a migraine, I got off my bike and sat on a low wall at the side of the road. I used to get migraines quite frequently so this wasn't particularly unusual.

The difference started when I slipped off the wall and couldn't get back up. A passerby stopped and he flagged down some passing police who called an ambulance. I could talk and recall being fairly compos-mentis to begin with in A&E. It was clearly not obvious to anyone what was wrong; I felt that I was physically weak, both I and the doctors seemed to think it was a particularly bad migraine. When I tried to pull down the zip on my cycle jersey I couldn't co-ordinate my action, which was when it actually became quite scary to me.

I had MRI and CT scans but it wasn't until the evening that the doctors saw something of note to them on one of the scans. I now know it was an Ischaemic stroke in my Basilar artery. I recall that nobody used the 'stroke' word, but I was moved through the hospital (most of the lights were out as most people were asleep) into a ward that had 'Acute Stroke Unit' over the door.

The next day I couldn't sit up in bed (let alone leave my bed) couldn't talk, couldn't eat. I was also labile, which manifested in crying; any emotion resulted in crying, I used a lot of tissues!

I communicated with thumb up, down and sideways. I was fed through a tube in my nose that went directly into my stomach. I went to the toilet and was washed, in my bed. During one of my first bed baths the nurses were discussing my sexuality while washing me. I couldn't talk, nor move much; I was still there and able to listen and will probably remember that forever. Throughout my experience there have been great people and the not-so-great.

I was in the stroke ward for what like felt like forever. Being one of only 2 young patients, I was 30 the other was 54 it could have easily felt like a very lonely place. Everything was at the bed, eat, sleep, read... only physio was an opportunity to leave those small confines. Many of the specialist staff (phyisios, speech therapists and nutritionists) were the closer to my age than any of the patients. It was good to have this contact; some of them have since told me that they could personally relate to me than the older patients and really wanted to make a difference.
I was massively grateful for the support of family and friends. I was never short of visitors in the evenings.

Days, especially initially, would feel extremely long and I very much looked forward to when visitors started arriving after work. I understand that my church even organised a rota so that visits would be well spread, with not too many at one time and nearly daily someone visiting. Having never really been in hospital previously it was an unknown situation to be in and know how to deal with. I found that my faith was a massive strength to turn to, my church friends were able to support me in trusting that Christ was in control. I found reading biographies of Hudson Taylor and those who worked with the China Inland Mission deeply encouraging, and helped maintain and strengthen my trust and faith in Christ.

After 11 weeks, I was moved to a re-hab unit, which was a really different experience to my weeks in an acute ward. We had wheelchairs that weren't taken away all of the time and got to go for a 'wheel' as/when we liked, it was actually encouraged. The nurses didn't do everything for you, you had to try and would only get help if you really needed it. We had the opportunity for quiet by our beds or be in the communal room when we liked (outside of pre-programmed speech therapy, OT, physio). We ate meals together in the communal room outside of our ward, away from our beds; this really encouraged social interaction and friendships to form.

I enjoyed being with people my own age again. They hadn't all had strokes, but all had some neurological reason for being there, those closest to my age mostly had GBS (Guillain-Barré syndrome). A group of 4 of us got on particularly well and started wheeling out to a local pub in the evening, and probably all felt a race to be first to stand, first to walk, first to be able to pick their nose...

After a few weeks there I started having supervised weekends at home before being permanently 'released'. My first weekend away was 150miles on the train (in a wheelchair) to my parents' house and a friend's wedding. The weekend was very liberating after weeks with hardly any outdoor experience (and included injecting myself with my daily blood thinners in the car park at the wedding).
I left re-hab after 9 weeks and returned to my flat, back to living by myself. I was able to walk about inside without any aids, but used a wheelchair when outdoors. I continued with private speech therapy, occupational therapy and physio.

Unable to easily get out and do things that I used to do I started cooking and baking, I found this cathartic. It was also good exercise for my hand that I still hadn't much control of and standing. When I did go out I found that buses and taxis were more accessible with a chair than I had appreciated. It was also very noticeable that the travel getting to, and back from, places that was perhaps more tiring than actually being there.

Not long after I left hospital I proposed to a lady who was just amazing while I was ill. We are now married. We have been away on honeymoon and weekends away together; I have also been able to do DIY to accommodate her things in my flat, it may take me longer than before the stroke but still satisfying to make things myself.

I was very grateful for the visitors who made the effort to visit me at home. Just because I was at home rather than in a hospital is didn't mean I didn't appreciate, want or perhaps even need visitors. Although I was out of hospital things were very different to before I went in.

After 2 months of being at home I started back at work for a few hours three days a week. Whilst in hospital and initially my work was very supportive, it was certainly one less thing to be concerned about. I have more recently been finding it more difficult to increase hours and fully integrate back into the office life. I think there is a mixture of not understanding what I am now capable of, and also not wanting to do anything that may have any negative impact on my recovery.

Getting back to work has been a balancing act that constantly needs monitoring. The need for time off for hospital appointments and physio, management of fatigue, adjusting my role and responsibilities as I regain the ability to undertake tasks all affect what work I am given to do and how well I can do it.
Being at work has meant that I have had to be out of the house and able to organise myself. I think it has been quite beneficial in that respect. Also being with different people and interacting with colleagues, clients, consultants and suppliers has really been socially encouraging and motivational. It has reinforced that I don't need to be worried about my speech, it is good enough to communicate, and the liability is manageable, particularly in my work environment.

By the end of private support, a year and a half later I was walking outside with a stick.

My main hobby before the stroke was cycling. I am unable to ride a bicycle, due to balance, but have recently bought a trike. It is great to be able to have some independence of travel, I can cycle places far easier than walk to them. I have found that feelings of frustration and anger have massively reduced since having the trike. My wife certainly feels that I have adjusted to who I now am.

It transpires that my stroke was probably caused as a result of a bicycle accident some years earlier, though it isn't certain. I have since had angioplasty to repair the neck damage where a clot may have formed and wash out into my brain, which hasn't been 100% successful; I have regular cranial angiograms to monitor the situation. I am still on blood-thinning tablets and tablets to help with the lability.

I am now married. I now walk with a stick. I work part-time 5 days a week. I am a better baker and I ride a trike. Life hasn't ended, it has changed, but I can't really grumble.

Andrew Bell
United Kingdom

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