4 years and counting

dear fellow survivors and all carers on the forum. Today is the 4th anniversary of the stroke which I am happy to say I survived. I thought I'd offer a few reflections  on my 4 years.  stroke anniversaries are strange things, and somewhat  melancholy occasions, or can be. I decided this year I don't want it to be a melancholy thing. but neither will I opt for any forced jollity.

 the hard fact of a stroke is that it changes everything. it turned my life upside down.  it has taken all of these four years to really understand what has happened to me. I think one has to live with it for a period of time to really understand what has changed. the thing itself happens suddenly  and doesn't really give you time to get to grips with it. day by day I learned a bit more. the experience of becoming disabled, which is how I now describe myself is a strange learning process and I am still learning. early days focused on working hard on recovery, the prognosis was encouraging but the progress was not.  I still work on what I may yet be able to recover and I don't think quite in such black and white terms as perhaps I once struggled with, either I accept the disability or I work for recovery. I think now that it isn't an either or like that but it is both.  For me anyway a  radical acceptance of what has changed and may not return has only really been possible  after a long time living with it. but the acceptance is helping me to move forward and I do have a hopeful outlook  as I embark on year 5. all strokes are different and I am sure that all recovery journeys are very different.  I can only share how it has been for me. if you get anything from it, that would be gratifying. for me the stroke affected me physically a great deal. I was a keen walker and lost the use of my left leg and couldn't walk at all at first. I now walk, not very fluently with the aid of a stick. after 4 years I've graduated from a quad stick to a tripod then to a single point cane. so next step, no stick!  I can walk a few steps with no stick as long as I am near a wall.  I ve only had one tumble in 4 years, I tripped on a tree root walking in my local  woods.  my hamstring muscles atrophied badly with lack of use but have actually recovered a bit and bulked up a little in the last couple of years.

 my sense is that there is more to be achieved with walking so I focus on that. the harder thing is losing the use of my left hand. I was always quite dextrous and active so thats a big loss. 

 grief is something not much discussed but for me has been a big factor over my first 4 years. not only grief for a life that was and abilities, such as they were now lost, but also for a completely changed role. I have been very fortunate, blessed if I can be allowed to say that, to have a supportive family

and have had support from health professionals that has been second to none.

I know many survivors do not have that, and recognize what you have to go through. 

 so the shout out for the NHS today is quite poignant for me on this anniversary.  

Let me finish by saying a big thank you to everyone on this forum for all your support and for sharing your stories.  I ve had some very dark times over these years as many of you know. and just to be able to get it off my chest has been helpful. to know there's a bunch of people who will understand has been vital for getting through the really hard times.  I still suffer the dreaded fatigue. but I keep active within my limits and am looking forward to trying some new things in year 5 and following. it is a weird time  to be making plans. but it's been weird for 4 years so I just carry on. if you've got this far. thanks for reading.i really appreciate it.

 very best wishes to you all Tony 

 

 

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Thanks Tony and good luck for year 5 and beyond. I will also be 4 years next month and can visualise your progress. You are obviously a hugely positive character. I have read and followed your posts, along with a lot of fellow regulars who post. I tend to be a more negative person and come on occasionally to try and gain strength from you and other posters, which I lack. 

Its an ongoing journey and I will join you in year 5 very soon. 

There are still tiny improvements to be had after 4 years.

thanks for taking the time to read my posts and to respond. 

To be honest I have not always been able to be positive. much of that has come from people who have supported me. I often get the most  encouragement from those who tell it like it is and often it isn't at all positive, just hard yakker as a kiwi mate of mine used to say. I m with you in spirit as you approach you 4 Yr marker.  there are still things we can do with what we've still got.  and yes I expect more hard days.  I am glad you were able to get some encouragement from my occasional posts

 good luck to you and take care 

 very best wishes 

Tony 

Always good to hear from you Tony - the stroke anniversaries are very strange markers of time, but you are a true survivor and encourage others with your posts.

Thanks for keeping on, keeping on, all good wishes for year 5.  Take good care xx

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many thanks 

T

Hi Tony thanks for your journey sharing it gives hope to we who are in earlier stages of recovery I to have loss of left leg and arm,can walk after a fashion stick free after 17 months butt stamina is bad looking for a small job in the next 6 months and hoping my visual field loss has improved sufficient to allow me to drive again.thanks and take care

Thanks Tony really appreciate the insight at 17 months since stroke day it’s very early days you story gives me strength and resolve to get a viable life after what has been for me a sad time filled with fear and sadness

Thanks Tony your journey has helped me understand the art of possible and success when it arrives :relaxed:
Much respect as I’m only in year 2at present

Thanks for taking the trouble to reply to my post and I am glad you found itbofvsomeinterest.
I’m six years in now, much has changed and yet much has remained the same. I lost my job, not too unhappy about that, horrible experience tho. Lost a lot of strength in my left leg due to inactivity over lock down lost a bit of confidence in going out unaccompanied. When I was working I did this ok 2,3 times a week.however. I am getting back into a routine of getting out for a practice walk 2 or 3 times a week and it is already helping after only a couple of weeks. My aim is to be able to get out unaccompanied by the end of autumn, so not too ambitious. To my surprise I got a face to face appointment with the spasticity clinic who were treating my left hand spasticity with BOTOX until the pandemic put a stop to in person appointments. Over time it helped to stop my left hand from being permanently clenched, or flexed. I still have no voluntary extension in the fingers but have a little voluntary grip ability but no strength at all. I have the opportunity with the new in person appointment to find out about prognosis for any further recovery .It would be absolutely transformative to get some function back in the left hand. From what I have learned, this is possible difficult but possible so I keep a window of hope open.
Still get a bit of fatigue occasionally but it isn’t as bad as it was in the first couple of years the emotional drain of the employment dispute was the chief contributor. That’s gone now. I don’t mind getting wiped after physical exertion, I feel at least I did something that will do me good long-term. My big hope is to get back some better mobility, but just have to continue to be patien.
Sounds like you’re doing well after 2years, and I wish you the very best with whatever goals you have chosen to pursue.
Once again thanks for reading and responding
TONY

Thanks Tony your progress is pretty good and a good indicator for us in early recovery, my personal progress has been okay but I am very demanding of myself so I will never be satisfied until I have a level of recovery that matches where my head is, good luck, thanks again,

Regards Mark

@Anthony.Nickson hi, your journey truly inspires us all. You are still improving and it’s great to hear you are in your 6th year. I’m 17 months post stroke now. But I’m felling cross with myself as I cannot do certain things. I cannot stand noise so I’m not going back to work. (Special educational needs Teaching assistant) I found my stroke has had a knock on effect to other ailments and pain. I wish you lots of luck