My name is David Oddie. Two years ago I suffered a brain stem stroke, which has radically affected my mobility, balance and my capacity to swallow. The impact of the latter is made worse by radiotherapy I had ten years ago. I am due to have an operation shortly to dilate the oesophagus so I can begin to swallow my own saliva and some puréed foods. My mobility seems to be on a plateau which is frustrating. I still feel dizzy and unpleasantly drunk, which is disorientating: I don’t feel well. Boohoo!
When I was in hospital I began writing a series of letters to myself from different stages of my life, a process I found very therapeutic. The letters are now published asa book, ‘Now then.’ The second part of the book is an account of how my wife, who suffers from ME, and I coped with discharge with initially very little support.
I would like to reach out to others with whom my experience of the stroke story might resonate and share experiences of the journey.
David
Welcome although sorry you’ve had a reason to join us.
There are many of us on here who have shared fragments of our journey and some who have documented it fairly thoroughly. Either here or elsewhere or in a combination of both and there are many on Instagram too
The magnifying glass above will be your friend for finding stuff but does take a bit of experimentation to develop a modus operandi That works. Reading via categories or Latest might be your best bet to start with
the welcome post might help with some orientation.
A point of philosophy - considering plateaus as something to be frustrated with is perhaps a less helpful outlook. If instead you consider them as consolidation of progress gained while invisible processes work to establish the launch pad for the next upward push then you will have both an accurate statement and a hopeful one
Many of us have found that the hospital to home transition is poorly handled and inadequately supported. the degree of support goes down from there. There are many ways to be one’s own recovery director that make up for short falls. It’s probably isn’t realistic to think the NHS has the insight or the resources to fulfil that role.
I too have the drunk/ Spacey type feeling currently about everyday but there have been periods when I didn’t have it week on week I’m better off than you in I can walk short distances without any aid other than my wife’s hand, I have unaffected senses of touch and I can swallow. My arm isn’t bad but my hand is beyond the recovery threshold I would like
The medical profession generally shrug when I try and discuss spacey with them. The brain is mostly beyond their boundaries at present. The rest I try and use in daily life and the more capability I get the faster my capabilities grow it’s a virtuous circle
I guess there is a question to be asked / answered about where the boundary comes in reusing others content because I suspect most do not know the terms of reference for use of this site and the data statements that are required under UKDPA don’t appear to be here and reasonably informal requests have not yet pointed them out (I think I will raise a feedback right now)
It takes a bit of effort to become fluent enough in the user interface of this software to then become fluent enough in the social inclusion of this community but plug away and both will build
@Indra hi David & welcome to the community. Sorry you’ve had cause to join us. It must have been very difficult for & your wife with her ME too.
Good to hear that documenting your journey has helped. I found writing a bit of poetry helped me initially. Something i had never done before but helped me understand what had gone on & also a good way to help my family understand how i felt.
Hi David and welcome to the forum. I tend to look at plateaus as the staircase landings, where you can stop to rest and regroup before you climb the next flight. So don’t give up hope, and don’t settle for less
Thanks. I would particularly like to dialogue with others who have experienced a similar feeling of post stroke dizziness, as if I was woozy and unpleasantly drunk. It is a constant feeling of being unwell and off balance. I walk every day and do regular physio exercises.
Where I certainly participate and I have woozy drunk feelings not continuously but continually
There are others who use the text mechanism of the forum It get regularly raised and responded to so hunt for the threads and post on them and the previous participants will get a notification ( if they haven’t turn them off)
