Struggling

TalkStroke closes on 5 February 2018

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Hi, I am 48ys old and suffered a stroke 5 weeks ago whilst in America! I was thrombolised and spent 3 days in ICU. I was repatriated 8 days after to a local Stroke unit! I then spent 7 days in quarantine (standard when hospitalised direct from abroad. Within 3 days of leaving quarantine I was discharged home with the support of the Early Supportive Discharge Team! I lost all my left side initially - my face returned fairly quickly, followed by my leg, which is moving with a stick, but very weak and clumber some! My arm has some movement, but hand and fingers are very stubborn! It has suddenly hit me like a tonne of bricks that this is a life changer - not merely the recovery to expect after a broken limb! I think I stupidly thought that this a temporary inconvenience! I am now struggling to come to terms with this long term prospect, the daily challenges, the lack of independence, of being a burden, of not feeling in control! As shallow as this seems - of feeling like a capable women, wife and mother! The fact my parents push me in a wheelchair, when it should be the other way around! The realisation is scary and frightening!

Helen, So sorry to learn of your stroke, but you are in very, very early days. Firstly, you have survived your stroke and age is on your side. You already have some movement back and more will follow. Please remember the leg and foot will recover faster than the arm and hand, because they perform less complex functions. Do you have any arrangements for physio in place? I am 74 and had my stroke 20 months ago. At first I was hoisted in and out of bed, but now I can walk with a stick. My arm and hand have improved at a slower rate, but I can cook, bake and make marmalade. You need to utilise your weak hand as much as possible.

Please remember the brain can and does re-wire itself, but progress takes time and much effort on your part. Life will not go back to how it was, but you will not be useless or a burden. A new life lies ahead, please work towards it.

Dear Helen
Sorry to hear of the stroke, but welcome to our forum.
I was also initially paralysed down the left side, but I got over that to about 95% mobility in a very short time.
Carry out your exercises as described by the physios. I listened carefully to the physios and then did the prescribed exercises 3 times over. Can I then suggest you keep the exercises going. I stupidly stopped when I had 95% mobility and am now finding it very hard to get the final 5%. So keep at the physio. Unlike many injuries, we can achieve almost total physical recovery. And remember that the limbs are not damaged, its "just" the messaging from the brain. So those fingers etc will get moving if you insist that they will !
Despite my stupidity in not persevering, I can walk a mile, drive a car , tend my garden and even get up a step ladder . I was totally immobilised at first. Couldnt even sit up or turn over in bed.
Be positive. Write down your goals. Then write the signposts as to how you will achieve those goals. Then work at it. You are the only one who can mend your injuries. No one else can do it, its down to you. If you have good support then that makes things easier, but it is down to you (a scary thought isn't it).
Do not delay. As John mentioned, your brain will rewire itself (doctor speak is neuro plasticity). The first two weeks will rewire quickly, then the next 3 months things can happen at a reasonable pace, even up to six months. After that it will be slow. Never impossible, but slower .
There many cognitive etc issues that you might encounter. But whatever they are, if you keep the physical stuff going then life will be less difficult.
You have already started to face the fact that Helen a woman of yesterday, has gone and Helen, a woman of today, has started to appear. Yes its a life changer.
I have had fantastic support on this forum. So many brilliant tips.
Do ask anything. Someone will probably have an idea or two.
And smile a lot. It fools the brain into thinking all is well.
Best wishes
Colin

Hi John, so pleased you are doing great and pray this continues for you! I think my previous ignorance of this condition and it’s horrendous consequences have suddenly hit me - I have developed a chest infection and I think this on top of everything has taken it’s toll! It’s so good to know that things do improve and I’ve got to remember to be patient! I have physio and Occupational Therapists upto 4 times a week and feel great when I’ve worked these limbs! Thank you so much for your words of encouragement

Hi Colin, I know I’ve got to work at this! Although a scary prospect! So pleased you have made a good recovery. I am struggling with the lack of independence - my goal is to regain as much independence as possible! To be able to drive again! Good luck with your continued progress

Hi Helen
First let me explain that after having shingles in 2007 i suffered with Post Viral Fatigue Syndrome.It was similar to Chronic Fatigue and no treatment available.As the weeks went by i despaired but after a little 'googling' i chanced upon others experiences and discovered that 5 years seemed to be the recovery period...yes a sloooow process.
It was a shocker,but peace of mind at the same time knowing there was light at the end of the tunnel.
It actually took me 7 years to shake it off but we're all different....but i did recover.

Now to stroke...In January this year,like you,i lost my left side but after a couple of days, speech, leg and arm movement returned and i was discharged after two weeks without requiring any support at home.
However i still suffered with headaches,and the fatigue was brutal.
I have only just returned to work on a part time basis but i have improved greatly (mobility/fitness wise) over the months.

You will recover...but it will be slow and gradual.Just keep that in mind.

PS I lost my driving licence for 6 months thanks to a stroke induced seizure...so i know how you feel! Losing your independance is a bummer....but i'm back behind the wheel now too....it's great ;-)

Good Luck!

Dear Helen
Can I suggest that you might break down your desire for independence, into a few goals.
Such as Get driving
and then signposts Work on legs until strong enough to change gear. Drive round the block. Drive to shops. Drive to town. Drive to the coast.
Next goal..cook dinner. Sign posts..decide what ingredients needed for a dinner. Prepare the meal. Cook the meal with help. Cook the meal alone.
So make your list in terms that are meaningful to you.

When I was first up and about, an acquaintance took me aside and said that his friend was told in no uncertain terms "so how are you going to achieve these recoveries". Whether or not he had such a friend doesn't matter. It sunk in what I had to do. At that stage I still thought of myself as "ill" and wish I had worked out that I wasn't ill. I was and am injured (that was John Jeff who made that point).
You might also like to keep a stroke diary. A daily record of how things are. At the very least it is good to look back and realize how much progress you are making.

Its a brilliant sunny day here and I have walked to the village post office and back. Not perfect, I struggled to get up the stairs of the footbridge, and now I am smashed. But I did it.
You too can walk to your shops. Diet, exercise and determination. You can do it. It might take many months, hopefully less. We survived.
Be positive
Smile
You are not alone.
Colin

Just to try and give you some hope.

I had a stroke nearly 2 years ago, was in hospital for nearly 2 months, and initially unable to walk at all. After 9 months, I was able to start back at work (on a phased basis).

Now nearly 2 years on, whilst I still have some relatively minor balance/sensory deficits, people would not know/believe that I had a stroke. Whilst all strokes are different, and have different impacts, there is certainly the prospect of a good independent standard of life for some of us.

The key is lots of hard work (which you're already on with) and a positive attitude, focusing on what you can do, rather than what you can't.
Good luck with your journey

Thank you! It’s like I’m grieving for the ‘old’ me, the person I was, what I used to be able to do, the independence I’ve lost! My goal is to be able to put my wedding ring back on, which was initially removed when I was thrombolised. My hand/fingers are swollen/puffy due to lack of movement! Thank you x

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