Am very pleased to say that I walked to the local butchers today by myself. Also called in to the council access office as I read online last night that there is a bus pass for people that have been told not to drive due to medical reasons so picked up a form, here's to a bit more independence!
Hi Katy
just picked up this post and wanted to say thanks, nice to hear your joy in a little bit of independence, and may you have many more such experiences
I'm having a bit of a downer right now mainly due to fatigue, generally things have been going OK but the fatigue really mKes it harder, so just nice to hear a happy story. thanks, you cheered me up
Tony
Tony, Fatigue is a bummer. Not a day of mine goes by without it. I find it worsens if higher demands are made on my day. Yesterday we had two good friends over for Sunday lunch. They are foodies so we feel obliged to give them a ‘special’ three course meal. Even preparing stuff in advance doesn’t really help. I had to rest before they arrived, then cook, chat and socialise for three hours. That just added to my fatigue, so it was another hour in bed after they’d gone. They are good and kind friends, but I have found more work equals more fatigue. Back to normal today, so only one hour’s rest required.
I looked at a website recently which iscresearching whether fatigue is linked to depression. I don’t think so. I think additional demands on the brain create fatigue and fatigue can make one depressed, probably because some of us seem to have it as a constant in our lives. That said, the meal was a great success. Leftovers tonight though!
the truth is I have been pushing my limits a bit in an effort to find out where they are! think I found some.had a very busy week last week with a few positive things. I guess part of it has been about the continuing grief about
what I can no longer do, and more than anything about changed and lost roles. the fatigue only amplifies the experience of dependence. I think thinks will change but the struggle is as much mentalas it is physical, or further, perhaps spiritual.
so I kind of expecting a fatigue episode but doesn't lessen the effect of it. we are going to a wedding next weekend which I know will be exhausting, but have to go.
much of what I am coming to terms with is less about what I can or cannot do but about how to be in this strange disabled and dependent state. I am giving myself plenty of time. fatigue definitely affects mood, and I think the mood affects the fatigue I do think this is something I just have to live through, I know we are encouraged to call ourselves survivors but I think there's something to be said for the notion of suffering. there's a real tedium to it, but we don't know the dimensions of post stroke life until we live it, suffer and endure it. it isn't all grim as we know and hope is our greatest friend. I like to hear the ordinary stories these, much more than the heroic ones give me hope. I am not hoping to recover in the sense of returning to my previous strengths. but I am building hope for a full life while I have severe impairments my body is keeping me alive and my mind is working well. these are gifts for which I am grateful. I was never as grateful as I should have been previously, just taking health for granted. well I have a different perspective now. no wonder I am fatigued with all that to process!
thanks for checking in
always nice to correspond with you
best wishes
Tony
Tony, I can empathise with everything you say. You are much younger than me and so you feel the loss of independence more and being unable to do everything you used to. I still mourn for my old self as well, although the mind is deceptive and some of things I miss are those I last did some thirty years ago. However, I do miss my country walks and holidays abroad. I also miss walking down to the town centre every day or hopping on a bus for a day out in a nearby town.
Lately, I have also come to think about the spiritual side of disability, although God forbid that we should ever think of suffering as good for the soul. Being partly disabled has made me come to terms with the shortness of life and the need to live in the moment, but it still creates irritability and frustration. I was never one to ever say ‘praise the lord and pass me my walking stick’ but have always had a grim determination to get through difficulties and hope for better days ahead.
Yes, the wedding will be a challenge for you, but you will rise to the occasion. If I do big events, I have to plan the whole day in advance.....including rest breaks. I find chit chat the most wearing, because a lot of what we say to each other is often quite meaningless. But I will not be mean spirited.
I am luck in the sense that I am retired and saved sufficient money to make recent alterations to our home that have made life much easier. I am unlucky in the sense that I am now an old man and life is running out. However, I refuse to go quietly or in a state of feeling sorry for myself.
Thank you for the honesty of your posts. We are none of us heroes or heroines, but have the common bond of having had our strokes. Even that is complex because of the different types of stroke and where they occurred in the brain. And that’s enough for now. Thank you for your reply.
and tha k you too
just a short thanks for now Good to talk to you
best wishes
Tony
Thanks Tony,
I think because I was so independent before I had the subarachnoid hemorrhage I am determined to get out and about. One thing that helped was reading "A letter from my Brain" which I googled after someone on here recommended it. It's so important to listen to our bodies and not try to do too much. Hope you are feeling a bit brighter .
Katy
thank you
yes things are beginning to lift, I have found the fatigue episodes last from anything from two days to two weeks. recently I have been pushing it a bit to find my limits. prior to the stroke I was also ver independent and very active. so this has been a radical change of life for me. I was an enthusiastic walker and had just begun to explore some of England's long distance trails. I can walk but it is very laboured. so walking for pleasure is something that has changed possibly for good, though I am not quite ready to accept that. I can probably accept leaving the rucksack behind, but I definitely aim to get the boots back on the hills. the outdoors is just the best thing to improve my mood.
have a good day
Tony