Stroke - small steps

Recovery progress is painfully slow these days. For the last week I have had more energy in the mornings after breakfast. Until about a week ago I'd have breakfast  and then be totally exhausted. For about a week now I have managed to do a few household tasks before resting. The progress is small, but this is progress and I am grateful for it. I still get exhausted but not quite as badly. I seem to require rest, but I am not totally "done in".

All I want is my old self back.....

So tired

Narrowboats on the R.Cam

This morning we did a walk totalling about 2km down to Bottisham Lock on the River Cam and back.  It involved climbing over 3 stiles. I just cut our back lawn this afternoon.  Now I am totally exhausted!

Give me an hour and I'll be OK, but cutting the grass was so very exhausting, even with 3 breaks.  In normal circumstances I would have been tired, but today it was a combination of (a) the first proper cut at the right blade height this season, so cutting was extra hard and (b) my cerebellum brain bleed after-effects.

Normally I can manage to cut both front and back lawns in one go, but I was just too exhausted to do the front lawn today. Maybe tomorrow?

Overall, I still think I am mending, but my level of fatigue after most physical and mental effort is still very high.

Total exhaustion

Until I had my cerebellum brain bleed in Sept 2013 I had no real conception of total exhaustion. At the  moment almost any physical or mental activity rapidly leave me in a state of near collapse - I get totally exhausted and I just have to rest to regain my strength and equilibrium. At night I sleep very well yet it is usually after breakfast that I feel really, really exhausted.  I guess people with MS and ME feel like this often, but it is very hard for others to appreciate. I hate being like this.  Being on the computer is one of the few activities that does not tire me.

Stroke - further update

Although there are signs I am still making a slow recovery, I am really aware of my health shortcomings currently. Although my poor swallow of thin liquids and poor voice are perhaps the most obvious symptoms to others, it is my fatigue that gets me most. It appears that both physical and mental  activities exhaust me. Having 2 of the grandchildren for 2 nights and picking them up from Birchhanger Services has really tired me out far more than I expected.

It seems I have to pace myself more and not exhaust myself. It is not just physical activity. I need to be careful not to tire myself mentally too. I am told that it is my brain learning to rewire itself. Both physical and mental things are exhausting right now. Plenty of rest is needed.

In the last 1.5 years I have suddenly felt so much older and so much more more vulnerable.

Feeling so much older

Before my cerebellum brain bleed in Sept 2013 I felt like I would go on for ever. Since that eventful day I have felt ill and old.

Even the pace of improvements seems to have slowed markedly. Somehow I feel older and more vulnerable. I know my time left is limited. I always knew this but the traumatic events suddenly made me realise. My hope is still that I shall make a full recovery but it is taking much longer than I was expecting.

Stroke after effects

My brain is still exhibiting some bizarre effects. I still have problems with drinking thin liquids, speaking, getting tired and feeling drunk when walking, but it is not seeing obvious errors with words on my blogs that is fascinating. My problem, back in Sept 2013, was a cerebellum brain bleed, that was operated on.

For example, on another of my blogs I wrote "as" instead of "has" but it took a long time to realise this was wrong. It is as if my brain does not process words quite correctly, or at least not quickly. It is not a serious issue and I correct the errors as soon as I do spot them. It happens quite a bit so I think it is real and not just me being paranoid.

I am finding it harder to get absorbed in TV dramas too. It is as if my memory has been affected in some way. My basic intellect is still sharp, but recalling some things can be a problem. Maybe this is just age? I am desperate to get my "old self" back, but know it could be a long road. Knowing now how bad I was I guess I was pretty lucky and I could have ended up as a terrible mess mentally and physically.

Richard, an old friend, told my wife to get me into hospital fast in Sept 2013. Looking back, this probably saved my life.

See http://www.healthline.com/human-body-maps/cerebellum .

Stroke - further update

Several people have indicated that it could be 2 years before I feel better. My brain bleed was Sept 2013.  At the present rate of progress, I think they may be right.

I have several serious issues still and progress seems to be slow. What I don't know is how well I shall be finally. I am still hopeful that I'll get back to very nearly the state I was before my cerebellum brain bleed but I am sure no-one really knows.

Stroke after-effects

It is now 17 months since my cerebellum brain bleed. Recovery is much slower than I was expecting or had wished. Although my eyes, ears and limbs all work, there are a few things that may be effects of the bleed. These include a slowness to recognise spelling errors: sometimes it is the next day I spot the error. Also, my short-term memory seems to be somewhat worse. Overall, my intellect is fine.

Stroke update

Last year I was expecting to be fully back to my old self well before now. As it is, I am still some way from that position. Overall, I think I am still improving, but the big leaps I was expecting don't seem to be happening. Perhaps I should be satisfied with slow, small, moderate steps?   I still feel as if I am living in a bit of a dream world, I still feel drunk when walking (feel giddy), still tire easily, and drinking thin liquids is still not easy.

Overall, I am getting slowly better, but perhaps I should expect to be left with a level of disability and will be pleasantly surprised when I get fully fit again. Perhaps my expectations were unrealistic? Whatever, I am not giving up: I want my "old self" back again this year.

Speech therapist

Today, a new speech therapist called and she has set up further sessions most weeks during January and early February. The good news is she can tell things, with my speech and breathlessness, can be improved and she has given me more exercises to do.

I was favourably impressed with the new girl.

My speech is the most obvious of my disabilities: I find communicating by voice hard work currently, although I am hopeful that this will improve. My aim is to be able to communicate by voice as I used to be able to do.

Stroke update

As it is the first day of the new year,  2015, it is time for some new resolutions and a health update. The latter is for me really so I can calibrate future improvements that I hope to see during the year.

Health update
Currently, I have 4 main issues. When walking or doing anything physical I get very tired.  I get giddy when walking. Drinking thin liquids (e.g tea or coffee) is hard and only possible in small sips. My voice is very poor and speaking tires me. I get breathless.  People find me hard to understand.  This is very frustrating as, to me, it sounds loud and clear. Although I am allowed alcoholic drinks, wine tastes sharp and I do not enjoy it. Most food is now OK. I can drive but, by and large, I have only driven locally.  Improvements have slowed considerably in the last 6 months.

Resolutions

• To do exercises so that when I speak I can be understood;
• To continue to improve my stamina;
• To be able to drink wine again;
• To be able to drink water, tea and coffee normally again;
• To take a picture for my 365 project daily;
• To do field experiments on my radio before Easter;
• To visit the South Hams. Last year was the first time ever I'd not been to Devon.

More than anything, I want to get back to normal health again. 2014 was disappointing as I was hoping to be fully fit again by now.  Perhaps I was being naive and did not realise just how lucky I was to be as good as I am? Anyway, I really hope 2015 will be the breakthrough year.

Birthday today

Today is my 66th birthday. There were times in the last year or so when I thought I would never see this day or this Christmas, but slowly my body is recovering, thank goodness.

This last year has been very tough for my wife and I, so I sincerely hope that 2015 will be a better year for us.  Lis has been my carer as well as my wife and I am so grateful for her love, patience and kindness.

Stroke update

Of late, I have become frustrated that I am not making improvements at the rate earlier in my recovery. I still get giddy, still get tired too easily and still have issues drinking thin liquids. I expected to be back to full health by now. Maybe in 2015?

Stroke update

Now  15 months since my brain-bleed, I still feel "poorly". People who casually see me think I am better than I am inside. When walking I still feel drunk and giddy, I still get tired easily and my liquid swallow and voice are still poor. By now,  I was expecting to be back to as I was before my brain-bleed, but think this is still months away sadly. I am still clumsy and far from my old self.  It is very frustrating for me and my wife, kids and grandchildren.

I still feel progress is being made but the steps are small ones. In earlier months I could clearly see improvements, but now they are small. For example, I think I feel generally less tired, although I still feel totally exhausted at times. My giddiness must be getting better as I can look through a much wider angle when turning my head.

Guess I have to be patient and never give up.

My poor voice (stroke)

For reasons I don't understand, my brain is unable (at present) to communicate properly to my (fully working) voice box. My voice box was checked with a camera (down my nose) a few months ago.

Although my speech sounds OK to me (clarity and loudness) apparently it is a whisper and hard to understand. All the time I feel breathless.I am told this is all a result of my brain bleed and it will, in the end, recover. I have to be patient! Hopefully thing will improve in 2015.

Stroke update

In the last few weeks, I seem to have made little progress. I still find many liquids hard to drink, I still get giddy when walking and most physical activities exhaust me, although on many days my level of stamina may be a little better. I do so want to be back to my old self again.

La Hogue cafe

We went to place our Christmas order in the local farm shop, La Hogue,  and then stayed for lunch. For the first time (since my stroke) I managed a full coffee.  I also had a ham and cheese Panini with all the trimmings and managed most of it.

Now only 3 of the 4 stroke symptoms?

In the last couple of days I seem less tired.  This does vary though: 3 steps forward and 2 back etc.

Although my swallow of some (thin) liquids is not good and I still feel giddy when walking - although I do not fall - my level of fatigue seems (generally) lower. This is a good sign.

My speech is still hard to understand and I get very frustrated by this. To me, it sounds fine, but clearly others do not understand me. My wife says I need to sound first and last syllables more clearly and that I am very quiet.

My recovery is taking far longer than I expected.

My brain

I am still puzzled by my brain. Most mental functions seem fine, but when I do an email or blog post I seem slow to spot errors like spelling mistakes or missing full stops. Usually I try to correct errors before sending, but looking back I still spot mistakes that I've missed.

If you see errors please let me know. I want to correct the errors and know when my brain is not doing its job right.

Driving again

After a ban on car driving of around 14 months because of my brain bleed,  I am now allowed to drive again.

In the car I do not get giddy and feel safe, although I drive slower than before, at least for now. In the last year,things seem to have got faster, although I am sure this is me!  My wife thinks I should be wearing a hat!

Up to now, I have driven fairly locally and my wife is usually in the car with me. The exception for the last few weeks has been a solo drive to the Newmarket Road, Cambridge,  Park and Ride site, where I catch the bus into the city for my U3AC course on Human Evolution, a course I am really enjoying. For several years I was too busy for U3AC, but this year is different.

Although I am usually suffering from at least 2 of the following, it is good to be doing "normal" things again and mixing with healthy people.  My remaining issues are (1) giddiness when walking. (2) poor liquid swallow, (3) tiredness following physical work of ANY kind.  Today, I don't feel tired whereas for several days previously I had been totally exhausted.