Four years on today, 28/04

A bittersweet day. 4 years ago today my life was turned upside-down, inside out. I am very thankful and appreciative of the fact that I can share the occasion with you all. 

It is still a very long way ahead to go but I should learn to enjoy the journey. Its ups and downs, sideways and byways. I am wishing us all the best... ☺

 

Hi Ruby , 4 years pleased for you , I am 2 years July. Aged 63 . Poss question everyone wants to ask ? ( or could just be me ! ) What issues do you have & percentage wise each passing year have you seen these improved. I am so grateful, I am not worse , but do tend to get disheartened, reading how others seem to improve . I have mobility probs , stick & sometimes scooter ,EXTREME FATIGUE ! ,needing bed rest , every day ,(even decided to stop shaving , time for a trendy beard ! ) Struggle in shower etc. Sensory overload with most things . Myself poss judge only a 5% improvement. Good to speak David. 

Hi Ruby

I will also be 4 yrs in August.  I have enjoyed reading your progress and the hurdles you had getting help with parking with your local council!   You have always shown a positive attitude to your recovery and a fighting spirit which is an inspiration for newcomers to the site and all of us when we feel a bit down.  Long may your progress continue. x

Dear David

i often write my good news. Things do improve, but its so slow. I would rather try to entice you in to looking how well you are and not how bad. Being positive does get my brain thinking the right way. Smiling a lot has an instant effect. 
i keep a diary and i have tried describing the level of discomfort, but its a hard thing to do. I noticed in particular that the problems of the early months are just forgotten.

generally my symptoms improve about 20% a year.

i kept trying to get physical stuff right, as about the two year mark you body is inclined to give up, or being positive, to settle. So i reckon you need to work on the physical side most days.

way out and above is the wretched stroke fatigue. I took the route of resting as much as i needed. No idea if that is better than resisting. But i rested. I am sure that we need very good night sleep. Without that, daytime naps etc are not beneficial. I spent a long time getting night time sleep. But it has paid dividends. I can then work on other recovery.

yesterday i pushed myself, not planned, it just happened. Started by driving the wife to Tesco in the traffic that has reappeared. Then i did extra gardenning and extra paperwork. About 4 pm  SF returned at a level i had forgotten about . An 8 on my scale. Grief it was grim. Struggled with walking. Couldnt follow the tv prigram. Wanted to be sick rather than eat. But thank goodness i was asleep by 10.15. Today i am down to about 4, and i will do my garden but nothing stressful.

i think you will drive yourself mad if you dont look at the plus side. Fellow SS understand, but i am sure that you have already realized that other people have no sympathy and in fact are plain diabolical. 

i read my diary and it cheers me up as i am so much better than year one. I accepted years ago that i was never going to be as i was before.

and i am not !

best wishes

colin

Hi Ruby

 It has been good to share  experiences with others several years after the event. These anniversaries are strange things, my 5th passed recently without event.

 Thanks for all your posts, I have very much enjoyed your contributions to the forum. Keep on letting us know how things go as you embark on life in the fifth year, let's hope external events are not quite so disorienting as those of last year,

 Best wishes

Tony 

Hi I am four years in August, had to complete PIP review form, they don't make it easy.  Blanket questions, how far can you walk, so many double buses, tick a box.  I ticked all 3!  added comment along side each box, very bad day, bad day, good day.As many of you know it depends how you are feeling on the day you go for this walk.  Somedays the fatigue is so bad I cant walk the length of 3 buses some days I can.  I didnt want to lie, so I suppose I will now get called in for a face to face review! 

Then I had to put in for my new blue badge parking, which runs out soon, all accepted paid the money, but when it came it is only til January 22.  I have no idea why? anyone got any ideas?

 

Thank you very much Tony.

I also find very helpful sharing my experiences and challenges in the forum. I also found/find very helpful and inspiring reading everybody else's posts. 

Yup, I am in my 5th year now. I have to remind myself of all my mantra: 

1) Every movement counts.

2) Persistence. Determination. Courage. Patience. Acceptance.

3) Keep smiling.

I am wishing us all the best. 

Ruby ☺

Thank you very much. Yup, the hurdle of getting that Blue Badge and the bigger hurdle of dealing with DVLA and getting my license back. I am very thankful that they are behind me now so I can reserve my energy in facing new ones - and there are plenty of them. ☺ It is very motivating to read that you found me positive and with a fighting spirit. Thank you very much. 

I wish us all the best. ☺

 

Hi David,

Things do get better but only if you keep moving and working on your own rehabilitation yourself. To be loved and supported by the people around you is great and very helpful but it is up to you to keep moving.

When I woke up in hospital on April 29, 2017 and I cannot move my right foot/leg/arm. The first thing I promised myself is that one day I will see them move again. And now, they are. My right hand can find my mouth and face again. I can write with my right hand again. (I lost my ability to write with my right hand. I cannot even hold a pen.) My stroke consultant said that I might not be allowed to drive again because of my vision loss. I told DVLA I refuse to give up my license voluntarily. They have to investigate me medically and assess me. I can remember having a heated discussion with the Occupational Therapist involved with my driving assessment. He was very glad to get me off his back. I can drive again. 

I can go on and on and bore you to tears but yes, things do improve. (I don't do percentages when it comes to my rehabilitation, sorry). Very slowly and in very small increments but they do improve but you have to work at it. Don't be ashamed to ask for help to do things you cannot do but the things you can do - do them. It will be very frustrating most of the time, especially when fatigue attacks, but also very enjoyable, comical and satisfactory. I listed in my reply to Tony my ever growing list of mantras. I lived and is still living by them. 

I wish you the best. I am wishing us all the best. ☺

 

 

Hi David, I was thinking about your comment about noticing only a 5% improvement.  As we've all found out, stroke improvement happens at what seems to be a snail's pace.  But it only takes 20 5%'s to make a 100.  So hang in there!  "Every day in every way, you're getting better and better."  That's my mantra.  Love, Jeanne

1 Like

Colin , once again you are always so kind & considerat with your replies . All the best David. 

Hello Ruby , thanks , I try to be mostly positive,  some days I can let this slip . All the best David. 

Thanks Jean , 1.38 am reply ? Bit like me , I was sat in the kitchen ,about 2.30am ,after waking . All the best David.