3 YR ANNIVERSARY REFLECTION. (Typed by wifey – Christine. David struggles with typing.)
Age 64. Cerebellum stroke.
NO improvement and if anything get more tired more quickly. Struggle to get beyond 10am before early food and back to bed. Can look at tablet for a couple of hours and then nap for 1–2 hrs. Small bounce back after sleep, but batteries best first thing. Always awake early – as soon as I’m awake my brain starts to tick over and I can feel the energy start to drain. Have always been prone to over-thinking and this is worse – anxiety about the smallest thing can be off the scale. Have tried Mindfulness, but doesn’t work for me. Feel worse when I am not doing anything, as tend to dwell. Find accepting extremely difficult. Little non-stressful projects help. Can read Kindle for short periods and am OK watching TV – only do this in the evening. Distracting my brain seems best for me. Struggle with concentration and can only cope with one question at a time – I am slow to respond as my processing takes a lot longer. Was always quite a solitary person, but find stroke isolating – closed into small world. Have always enjoyed chatting to people and miss that. Still manage a chat to our neighbours which I enjoy, but only short bursts.
Talking an issue. Find notes best – gives me time to think through first. Can manage about 20 mins on the phone with my kids or sisters and then wiped out. If kids and/or grandkids come to visit will make every effort to keep going – usually a couple of hours and then quick food and bed (they are about 1½ hours away). Eating can be an effort if tired and best without talking. Can get own boiled or scrambled eggs for breakfast and then C organises all other food. She cuts up food as tend to eat one-handed – tried to use both hands initially, but left side too weak to raise fork for very long.
Can’t do without grab rails in en-suite and bedroom. Can get around the house myself until tiredness kicks in and then need stick. Have swapped a cheaper walker with seat for an ultra-light rollator with seat – useful for walking short distances outside. New one is much more expensive and more disabled friendly as supports you all round rather than the previous one which was all in front and potentially running away with me. Waiting for delivery of new chunkier Lugge scooter – hopefully more stable than smaller one that used to tip me off! Will go in boot with seats dropped forward – allows outings either to the river at Worcester or the local country park – the latter being the favourite for good bacon sandwiches! Cannot manage car journeys longer than 20-30 mins as can feel giddy and start to feel sick. Once out can only manage about an hour and then home to bed.
Hoping to sort out a lower non-slip shower tray soon – fixed seat, grab rails etc. Did try to find local plumber, but wanted to do some myself (builder in previous life) and hard to work this in with
someone else’s schedule. Will take a massive effort (and huge amount of help from me – C!), but will get there. Cannot exercise, but pottering in the workshop and showering is my equivalent of a workout. Have invested in lighter, smaller tools – allows me to still do bits of work, so feel that I can still achieve things – my hobby now.
Struggle to turn head sideways. Also can’t lift head without discomfort and can’t look or bend down without feeling dizzy and sicky. Have problem with painful shoulder on weak side and find supporting it on a yoga bolster when sitting is useful (these are filled with grains of some kind and are firmer than a pillow.) Have more recently started to get pain spasms up spine – can take breath away. When I start to shut down it affects my whole ability to move, talk, eat. Can’t cope with too many people, noise, busy places and when driving C has to go fairly slow and steady. Sunglasses help a bit.
THINGS I AM GRATEFUL FOR
Wife – Christine. (Gorgeous, kind, helpful :-)) Bungalow – (we had already decided we didn’t want to move again and knees were already getting creaky – C.) Morning coffee in the folly I built in our lovely garden – fresh air always seems to help and will go out there even in cold weather. (He sits so still the birds and squirrels come quite close to peer at him - C.) PIP – bit of extra cash is helpful – can be challenging process. Automatic sensor lights around the house – very useful for getting up in the night. Beard! - no more shaving though trimming can wear me out. Christine trims hair and beard when gets a bit out of hand. Stroke site is great and enjoy social side. Tablet works well for me – John Lewis refunded the VAT when I told them I need it for communicating. They didn’t quibble and needed no forms – worth asking.
POSSIBLE ADVICE?
Do not (like me) compare yourself to others – easier said than done. Can be depressing hoping for improvements that have not come. Try not to look back at things you used to be able to do and focus on what you can still do. I am still here – not bed-bound, can feed myself, shower and wash self and still do small projects. Can still enjoy my smaller world and spoilt silly by wifey. 
Christine footnote:-
David is getting better at asking for help. Occasionally he gets stuck on his shower stool and I have to help him out of the shower, dry him and help him dress – this is not often as he would rather struggle for ages himself rather than ask me – sigh… I am working on the endless apologies for asking for things.
He is not allowed to call himself a burden and when he says that he is laying so much stuff on me, I won’t have it, as I don’t feel like that at all. I now take the bins out and clear gutters once a year! I now wash the car, but not very often. And I now clean the outside of the windows which he used to do – again not very often. So I’m not actually doing a huge amount more. Pre-stroke he was so involved in his own world that he never noticed what I was up to and now realises how busy us girls are!
He used to worry that he was stopping me from doing things and going places. I reminded him that in the last couple of years no-one was going anywhere. And actually I no longer feel the need to be going out and doing. I am quite content with once a week shopping for food and the occasional trip to the garden centre. Pottering in the garden is always therapeutic and June and July it is always a joy to see all my roses and clematis out.
We create our lives by the way we think and the gift in our particular situation is that every day I have the opportunity to be loving and kind which is good for my soul. Not that he doesn’t still do my head in from time to time, but ‘twas ever thus!
. David.
. Home delivery, returns, favourite. Though mostly wear trackies , easy on /off . Good speaking David.
