My voice

My poor speaking voice really frustrates me. On the phone I say, to me it is clearly, that my wife is out and "please ring after 2". Then the caller says, "when shall I call?". Darn it, I just told you, but you clearly did not hear me!

The problem is at my end - either I speak too fast or not clearly enough to be understood.  It really does cause so much confusion and frustration. Stroke! I have to learn to speak much slower and much more clearly.

Grandchildren have gone home

Our "Kent" grandchildren and their parents have now returned home. They come to stay again before Christmas.

Although the house is now quiet, I am still very tired, as a result of my stroke. People tell me this will get better. I do hope so as I still get profoundly exhausted with any physical effort, quite unlike how I used to be.   I want to be able to do all I did with my grandchildren before,  but I get so exhausted.

Profound tiredness (stroke)

These last 2 days I have felt more tired than at any time I can remember. I think this related to my stroke, but I have been PROFOUNDLY exhausted.  I have no understanding just why I have felt so very tired.  I hope it will pass soon. I thought my tiredness was lifting, but like so much about my stroke, it keeps surprising me.

Stroke update

I had my cerebellum brain bleed (stroke) in Sept 2013 and in all honesty I was expecting to be fully fit again by now. I think my wife and I had no idea how serious this was and just how long recovery was going to take. Nearly 15 months on it is a mixed picture.

All my limbs, my eyes and ears and my cognitive functions seem to work OK. But I still have poor liquid swallow, poor speech, giddiness when walking and I tire on the least physical exertion such as washing dishes or gardening. My stamina is better than it was, but it is still far from right.  I am still clumsy.

I am told a full recovery is probable, but this will take time. This last year as been very hard. I sincerely hope 2015 will be a better year for us.  In summary, I have felt old suddenly. Until last year I felt as if I would last forever. Now I feel far more vulnerable.

God willing, I'll see quite a few more seasons yet. My greatest wish is to see my grandchildren grow. At the moment they are all very little.

Weight loss

Since my brain bleed in Sept 2013 I have not been allowed to drink alcohol at all.  My weight has dropped from 12st 4lb to just over 11st, my ideal weight for my age and height. I am now allowed to drink alcohol again, but have yet to do so. When I do drink again, it will probably be just a very small glass of wine only.

Sutton Hoo trip

Today, I made my longest trip yet since being allowed to drive again after my stroke. We went to Sutton Hoo a National Trust location which is the far side of Woodbridge, Suffolk where a famous ship burial was discovered in WW2.  This was a round trip of around 122 miles, mostly on the A14.  Driving was fine:  I get tired when walking, but in the car I am fine. Whilst there I managed some soup and bread.

Tiredness

I think the week is catching up with me as I have been profoundly tired yesterday and today.  I attempted to dig up a plant in the garden, but I was totally exhausted and had to come in. The experts tell me this is to be expected with a brain injury (cerebellum bleed) and given time I will recover. I do so hope they are right. The feeling of exhaustion is like nothing I have ever experienced before. There is no way of fighting it. I simply have to rest and recover my energy levels.

Drive to Lavenham and back

Today, I drove further than ever before since my enforced driving ban because of my brain bleed in Sept 2013. The driving was fine. Whilst there, we got a bite to eat, although I was not very hungry.

Slowly, all too slowly, things are returning to normality, although I suspect it will be well into 2015 before I feel "right": I still feel poorly and not my old self yet.

My brain

Whenever I post on my blogs or Facebook it seems to take a second visit before I spot a posting error. Usually it is an omitted letter or similar. I wonder if this is an effect of my brain bleed? Usually I can correct the error(s) before anyone is aware, but sometimes it can be the next day before I notice. All my limbs work and (mostly) my cognitive powers are fine, if a bit slower than before. I do so hate being not right still. Although local driving seems fine I still feel giddy on my feet and still tire very easily with any physical activity. Even washing the breakfast dishes tires me still.

Stroke update

People who see me say how much better I look. I am now allowed to drive again and my stomach PEG is due to be removed Nov 4th. I still tire easily, feel wobbly when walking and still feel unwell generally.   I really hope my symptoms start to ease soon.

Quiet day today

We had visitors this morning and are out this evening, so this afternoon I am taking things quietly to maintain my stamina for tonight. Although better than I was, I still get tired easily and giddy if I am on my feet too much, because of my stroke last year. My wife is out at her choir this afternoon.

Stroke update

I read one of my posts from very early in the year. In it, I was hoping that after 6 months at home I would be fully fit. That proved optimistic!

It is now September and I still have great fatigue, speaking is poor (breath is short with little expression/modulation)) and effortful - people find it hard to understand what I say unless I speak very slowly and very deliberately - my balance when walking is not good and drinking can be hard work. Food is, generally, little problem now. Overall, I still have a way to go.

I believe I am now ready to drive the car again (I wrote a reminder to the DVLA this weekend as the neurosurgeon wrote to them in June saying I was fine to drive. My U3A course starts October 8th or 9th I think. It would be good to be driving again by then.

My aim is to be off my PEG before the end of this year and to be fully fit again before the spring. Please.

Stroke - one year on exactly

It is exactly a year since I had my cerebellum bleed and operation. I am still giddy, still have difficulty with some drinks, but my limbs all work and I can eat most foods OK by mouth. At one (low) point I was told I might never, ever, eat or drink again by mouth. I still get frustrated that I am still not "right", but I guess I have come a long way and I should be grateful to have recovered as well as I have.

Stroke getting me down

My life is a continual struggle. Most of the time I am so tired it is untrue and I feel giddy when on my feet. Life is just a hazy fog.  To others I look fine, but few people, apart from the professionals, appreciate just what a daily struggle life is for me. I desperately want to be fully well again. I have now been suffering for a year. God, I want the agony of this condition to go away. I must be a pain to live with. I beg people to try to understand how I feel inside. Yes, I HATE being like this.

Twice daily local walks

Every day, twice a day, I do a walk "around the block". Using my smart phone this measured 366m (just under 400yards) each time. The idea is to help me with my stroke recovery and to help improve my balance. I've used no walking aids now for months. The giddiness may be slowly improving, but progress is very very slow indeed. People who see me say how well I look!

A little better?

Having done the gym (Active for Life) in Newmarket, I "think" I am feeling  a little better this morning. My stamina seems a little better and just maybe the giddiness is not quite as bad. We can only hope!

Fatigue

As a result of my brain bleed nearly a year ago, I still get incredibly tired very easily if I do any physical work. This morning I vacuumed a couple of rooms and swept the kitchen floor and I was totally exhausted. People tell me this fatigue will, eventually, get better. I feel so hopeless and useless at times like this.

See http://www.stroke.org.uk/sites/default/files/Fatigue%20after%20stroke.pdf .

Stroke frustration

By now, I was expecting to be just about back to the state I was in before my brain bleed. Instead, I am still far from right. Walking is OK, but I get very giddy when on my feet and moving, and drinks are still problematic.

On the positive side, food is generally going down well (by mouth) and I am NOT giddy seated. I feel that driving the car should be fine. I still feel slightly sick all the time and I tire very very quickly doing the least physical thing. Today I cleaned the car externally, checked tyre pressures, oil and window wash. I was very tired at the end, but I guess several months ago this would have been totally impossible.

People tell me the fatigue will eventually get better. Let's hope all the other negative things improve in the coming months. I just want to be fit again. At one time I was 13st 3lb. Currently I am 10st 11lb, but was just 10st 7lb in hospital. I'd like to get back over 11st soon.

Stroke update

This morning I managed a walk to the local Budgens and the chemists. Round trip is about 1.5km. The last time I did this walk was back in June. It was good to bump into a few people I knew but I was disappointed to still feel so giddy.  By now I was hoping the giddiness would have gone. It seems to be related to how tired and exhausted I feel.  The giddiness must look as if I am drunk. Solid foods generally go down well.  Drinks and speaking are still problematic. Overall, progress is very slow now.

UPDATE 1415z:  Just cut the front lawn again, without a break, in less than 30 minutes. At the end I was well and truly EXHAUSTED. Recovery progress is exceedingly slow. I get SO frustrated that this simple task leaves me so tired. I want to be interested in the world around me, but it feels almost like a parallel universe. I seem to need all my strength to get through each and every day and the world around carries on. I do hope next year will be better. Certainly things must be better than they were, but by now I was expecting to be back to as I was before. I still get totally exhausted and feel so useless. I am more aware that I am living on borrowed time.

Stroke update

This is the latest update on my condition:

• Food is all by mouth now and I can eat most foods.Taste seems to be returning to normal.
• Drinks are still problematic.
• I still feel giddy walking, but this is getting better slowly.
• Speaking is monotonic and effortful.
• The MRI scan gave me the all-clear by the neurosurgeon - no more brain ops.
• My stomach is still slightly upset. I suspect this is because of the PEG.
• I feel OK to drive (neurosurgeon thinks I'm OK to drive) but am awaiting response from DVLA.
• I get fatigued very easily.
• All physical work is hard.
• ENT throat exam early Sept  to see why speaking is so hard.
• Physio/gym at Newmarket Leasure Centre continues until Oct 2nd.

Overall, I am still not right, but think driving again will help, as will PEG removal (no date yet for this). Improvements are slow. By now I was hoping to be fully fit.