@smeadows1975 There are various laws concerning disability and employment - I can’t help with them at the mo I’m afraid but I will add them to the list
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Thanks for your reply, mine was ischaemic. I’ve always eaten well and continue to trycto but my appetite has dropped off a bit. Never smoked or drink other than the odd glass during usual birthdays, Christmas and special occasions.
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will do mr blah b;ah blah blah characters
I did add ACAS by the way 
added - any links etc appreciated - pls send me a private message to not clog all this up
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@smeadows1975 just popping by to say hi & welcome to the forum. Sorry you’ve had cause to join us.
I haven’t had your type of stroke but can say that recovery really is measured in months & years. In relation to your employer can they get an occupational health report done for you? If so that would give them an idea on how long it might be before you can consider returning. You could also try ACAS for advice & if you have a TU Rep speak to them too.
Most employers have an absence policy in place & i would ask them for a copy. Where I work for example they will tolerate you being off sick for a while (time varies depending on why you’re off & how proactive your manager is). Then if it is looking unlikely that a return to work will happen soon they then look at medical retirement followed by medical dismissal. This may be different for other emoloyers. I would definitely get advice so you know where you stand with them.
But most importantly your health has to come first & returning too soon coukd be detrimental to your health.
Wishing you all the best.
Ann
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I am in US and things are quite different here regarding employment, as well as names of medicines, healthcare access, and programs. I am not much help in those areas. However, stress and worry are things that will not be helpful for any of us. Anything you can do or get help with to lessen those will be very helpful to you. The other thing is stressing that this will happen again. No one can tell you it won’t. The thing we can all tell you, though, is thinking about that won’t help you recover, or help you live a good life. Do what you can to work toward recovery and take care of yourself, accept and even ask for help when you need it, and enjoy everything you can…your family, your friends, the things you can still do and other things you can try that are new but help you relax and smile. Easier said than done at first but then it becomes second nature after awhile. Being here, with support from others who know has helped tremendously, whether something they say resonates with me or they make me reconsider something bothering me, or I am supporting someone else, makes my world better on an almost daily basis. I am sorry you have need to look for this group, but hope you will stick around and find it as helpful and caring as I do.
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I’d love to speak to you sometime about the differnces in things between UK and US…
I’m slowly trying to do my thing about stuff people here can get and try and make it as useful as possible but will take some doing. Stroke brain works in mysterious ways!!
But I would love to add an international section.
If you don’t mind I’ll get back to you on this in a week or so…
In the meantime stay cool
Here is a picture of a polar bear in alaska, USA to cheer you up
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Anytime! I have no appointments until mid November. I don’t know what I will do with myself, LOL. I have had at least weekly but usually thrice weekly appointments for the year and a half I have been out of hospital. A change I should be happy for but am tearful over, since I have become fairly close acquaintance with my therapists and doctors…my social life outside of here. It is like saying good bye to family and best friends! I am terrible at good bye’s!
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Hi DeAnne, thank you so much for your kind reply. I completely relate to what you say about feeling tearful when easing back from the therapy. I too, l13 months in, have been told by all of the therapists, physiotherapist etc that i now have to focus on rest and learning to manage the fatigue. There comes a time when all of the appointments can have a negative affect kn fatigue. Like you, i too had two or three appointments weekly. I cried when they said it was time to take s step back. You do feel scared and alone. They were the only people that i felt truly understood what i was feeling and experiencing. Have they told you that you can be referred back to them later if you need more help? This is what theyve told me. From my experience, i felt that the therapy concentrates on getting you up and moving a little, learning strategies for being able to manage the small things like setting alarms to remind you to take meds if you’re having memory troubles, learning how to manage loss of concentration and all things that affect daily living. Then comes the oeriod of rest and recuperation before you can even think of preparing to go back to work. I think this is when you can go back to therapy to help with that. I’m not there yet so can’t comment much on that. You are here now, with like minded people and i hope you find comfort in this. I’ve only just joined this week, but i already wish I’d found this sooner. Take care and reach out when you need to. 
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Sorry for the spelling mistakes, the stroke took my close up vision. 
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I have given up on spelling mistakes - don;t care!!
If you can’t undertsand or i’ve made a clear error i will coreect but otherise I’m not wasting my sceeen time and my eyes!!
Those above were just hnestly me typign quickly!! Can barely see the keys close up
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@smeadows1975 @DeAnn i too felt a bit sad when i was let go by physios etc. Although I was a bit fed up of appointments all the time. @smeadows1975 i was told I could be referred back if necessary too which was explained to me as a significant improvement or a deterioration. I had reached a plateau & as I wasn’t progressing they said they could do no more.
There does come a point where rehab & exercises have to become a part of your daily activities rather than something you specificly do. Well that’s how I thought of it at least. I didn’t want to spend the rest of my time doing exercises, exercises & exercises. For example I exercise my arm doing housework or typing, my leg when i’m moving around etc etc.
It’s also good to see it as a sign of progress that they believe you have reached the required level to be able to manage the rest yourself.
Good luck xx
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I’m definitely with you on the
In my case having a stroke during lockdown with virtually no PT or OT I’ve done that from the very beginning.
However I’m not with this message; I think that’s a self-serving let’s get the person discharged and off our books. Every so-called plateau is the launch pad for new capabilities. Anytime I stop improving I set the exercises aside that have ceased to return a benefit and adopt a new ones until some later time normally 3 or month more months away when I pick them up again I see progress - - like my elbow improves once my shoulder has gained more range and strength so elbow exercises may appear plateaued shoulder exercises then build something that more elbow exercises can take advantage of.
I’m now at the stage of wrist and fingers get the specific focus and the shoulder and elbow get the daily living use like washing the car or carrying the basket in the farmers market like I did this morning where I held it out to my side - which was a little inconvenient for the crowded market - and put proved that my strength is growing except in my fingers where try as I might I couldn’t get them to curl up around the handle even though I could hold the weight of the basket in the claw like hand!
They say every stroke is different, but that’s because out of 20 (or 50) individual changes and challenges that match another 18 people. to match all 20 things takes 20 or 30 people. No one thing is unique It’s just the combinations.
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Totally with you @SimonInEdinburgh but sadly that doesn’t mean the physios are 
but in their defence i guess they have a long waiting list & others may be more in need.
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I have sympathy for the frontline staff who are under unreasonable pressure.
I have none for the service that I have paid my entire adult life for and is not fit for purpose when called upon to serve it’s sponsors ie me and you. I also think that while the front lines staff have tremendous empathy and personal commitment their training and visceral understanding is lacking.
That I also put down to failings in management to understand how to do continual service improvement - a very basic capability of management of any service delivery organisation 
I’ve seen statistics that say there are 29,000 members of my stroke guide - I don’t think that’s actually a reliable statistic - but it might make us as a group a voice of influence if we got ‘our shiite’ together…
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as discussed
agreed
K
@smeadows1975 I was told I could be referred back if needed. I may ask at my next physiatrist appointment in a couple months. I feel a bit selfish as I have had so much therapy and gained so much from it, however, I could use quite a bit of help with planning a daily schedule, concentrating, strength and stamina. For now, I am to habituate to try to get my brain to believe what my eyes see, or get used to seeing things bouncing around as they do while walking or doing other daily tasks. I will hope for the first. If that doesn’t work, I suppose I will start wearing a patch over one eye. I see my neuro opthamoligist in January, so possibly she will suggest prisms. I just don’t know. I will keep working on trying to manage a day in a manner that is not utter chaos and let the other things happen as they do. I hope you will find the right ways for you to be who you are and want to be
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@smeadows1975
Regarding Cerebral venous sinus thrombosis
Hello, my name is Cathy. I live in Yorkshire I’ve just searched for CSVT and your post came up. I haven’t found anyone else who has had this rare stroke.
It will be 3 years in February since I had a CSVT.
It was during lockdown and I was just about to start an online maths lesson with a Year 6 child. I began to have trouble breathing and I have no idea what happened next. I woke up in York hospital a day or so later. I had also had a heart attack and was temporarily blind. All a bit of a shock! I was 61.
I hope you don’t mind me asking. How did it happen for you?
Given CSVT is so rare, do you think it might be interesting to share recovery stories?
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Hello, my name is Cathy Morgan. I too live in Yorkshire I’ve just searched for CSVT and your post came up. I haven’t found anyone else who has had this rare stroke.
It will be 3 years in February since I had a CSVT.
It was during lockdown and I was just about to start an online maths lesson with a Year 6 child. I began to have trouble breathing and I have no idea what happened next. I woke up in York hospital a day or so later. I had had a heart attack and was temporarily blind. All a bit of a shock!
Do you think it might be interesting to share stories?
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Did you literally search for CSVT?
Or was that just a dyslexic slip 
since you’re actually posting in one of the threads that results from the search I suggested to you in September - Which was “CVST”?
It returns:
Central venus sinus thrombosis - cvst by @lucy_mccaslin about her dad - she hasn’t been on here since September 22
Cerebral venous sinus thrombus stroke by @smeadows1975 (this thread )
who’s been on the forum in the last 24 hours she also mentioned CVST in the the thread Vaccine or not? But that’s about the covid vaccines rather than CVST
A stroke at 33 by @maroulla.w.anderson Who hasn’t been on here since December 22 but was posted to by @smeadows1975 offering to share knowledge
(As well as your own Rare Stroke )
You may have been better off messaging them directly. (I note you are only at the basic user level according to Your profile - although you look to me as though you qualify for member. As a member you would be able to create a private topic with those specific members. Forum facilities)
Now that I have @ named them above they will get a notification of this thread - and since it’s a public thread others may gain value from any discussion that ensues - a double win 
Ciao
Simon
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Hi Cathy, im sorry for not replying sooner. I decided to take a bit of time out as ive been struggling with it all to be honest. However, id like to be of help to you if i can. My CVST began in Aug 2022 with a sharp pain in the back of my head. No paralysis at the time so i talked myself out of the idea of it being a Stroke and stayed home for 3 days. I had severe dizziness and vomiting. I did nothing but sleep and be sick. My recovery is still ongoing and it now looks like im about to lose my job as theyve got fed up with waiting. I still have cognitive difficulties and still cant walk far. Its life changing but stick with it because we are the lucky people that survived this awful event. I was told in the hospital that many people dont reach hospital with this condition. We are fighters. You are welcome to contact me again. Take care.
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