Growing out of Stres and Confusion - When?

Coral's husband here again introducing her latest article for the blog together with another poem. Coral is still having problems with spelling etc. but I trust you will be able to follow the article because I think leaving it unaltered will slowly help Coral with the written word.

It has woried me that things I thort would get betr have not done so.

After my stroke last August I found I would cry for no reeson. Sudenly I would just start to sob. I found that other peple did same so I not wory to much. Then I have stroke Janry and I still cry for no reeson. Sometimes I think it cause I tired but I found I do when I confused or stresed.

I like go shoping and help decide what eat. But that not easy. I find hard chose. I want bread, beans, tea, cheese etc but so much choise ! I want bread and there thick, medium, thin, wholemeel, flavors, small loaf, big loaf etc. But I want just a loaf bread. Beans have so many brands and cheese – it remind me De Gaulle who say 'How can anyone govern a nation that has two hundred and forty-six different kinds of cheese ?' Exactly ! To much choise. Making choise for me is very stresful, I not able to do it and need lot help and pacience. My husbnd will try help, he explane what there and the diference. When I decided I reck ! I cry cause the stres make me cry. 

I been quit lucky at shops peple help but had some peple serve not so nice. They not lissen me proply and when I got chose they sigh and tut. I have husbnd there lot time but always try have someone. I ware bracelet say 'Awareness of Aphasia' I show them and say I problem talk. Sometimes these peple look at husbnd to decide but he no it me must chose.

When need buy food I need find things I able eat. Since 4^th stroke nerely 10 yeers go I had swalow problms. It got worse last August and more in Janry. I not good with letuce, dry rice, noodles, runer beans, celery, aple peel, potato skin, big tomatos not good but OK chery tomatos. I need lot sauce on food, it need be soft and cut small. Breads with 'bits on' no good but rost veggies are excellent. We use slow cooker lot that help and corse we can make meal and let cook long it need. I lern hard way from choking so we changed what eat and how cook. When take tablets I take with yogurt, porrige, custard as it easier swalow that way. I do have before meal tablets that must take no food so make sure mouth not dry and swalow with lot water.

I cry when not understnd things. It hard if peple try explane things complicated way. I need someone tell what say. Yes, I can understnd but why some peple make big thing out something small ? I mean they turn it to a drama. I ask pleese rite down what you say so I reed latr and try understnd, my husbnd listen to and he tell me what say, tho at times he say 'they go on a bit !'

I try plan what I were and if I no I go somewhere latr and want cetane clothes were I get washed early. I hate look in cubord and get stresed what to were. I not lots clothes but some things I like more othrs. If I thort before I betr and carmer.

To cope betr I like plan food, clothes, what I do day to day, enouf medcines, flat cleen. If these not done I stres and get confused. To some peple that sily but I find that what brain injry do you.

Losing words stres and confuse too. For me losing word frustrates me as I no I no it and it like it teese me just out reech. I lost names of famly and frends, I no who they are but not names. The name iches at me and I no it there, sometimes I think name come in hed, I so hapy but it go qwik. It like things in flat I can't get they just things (we have lots things!) it wich thing I meen husbnd must gess !

He make me book with picures of famly and frends and put names them. I can look at picure and reed name. He make book with picures of things in diferent rooms, diferent foods, times yeer, clothes, it all help. I wood like spel good gain but that take long time. I rite, sometimes good sometimes not. I reed lite story as understnd betr. I need betr consentrate but that short time and I stop when feel stresed.

Things not helped by medcine which make tired. I have Morphine and Codeine and some othrs that make tired. I not able do much when tired, get stresed, confused, angry I just need sleep. I thort I be OK by now but peple say they stil need nap time lot yeers aftr stroke. It anoy me that you not told things like this, but when say to doctor bout it they say oh yes that normal ! Why not say you and not let you be stresed ?

There lot things lern by self and from others had stroke. It good help othrs, but we remembr that stroke afect peple difrent ways. It never easy but if you got good doctor, good therapists, good carer, good famly, good frends you cope betr. I got lot peple who help me but husbnd is carer. He lern that it betr to not joke bout when cry, not joke when I stresed or frustrated, he not joke when confused cause that make it worse. I not cope with joke then. He lern he must bos me bout and say what I can/cannot do, when I must rest, when I done nough. I not like it but he tell me if not behave I not do what I want ! Of course he rite, I find need rest but I not give in ! He rite that when I tired, stresed, frustrated talk get worse, I get confused and get worse and cry and then I not able do anything. He use that horid word, PACING, that I hate. I betr than was but not as good as shuld be.

I think I shuld be betr at some things I not but when say therapist she say it take long time and sometimes you never betr. I see peple my age or older and they do things I want do. But as I told they not got what rong you and not been thru what you been thru. I supose that is the all I can acept from how things are.

I got think not expect too much, slow down, breeth, acept help, keep carm, prepare, not expect too much.

Can't you hury up deer

Can't you hury up deer, I haven't got all day

Can't you hury up deer, I want to get away.

I got things to do deer, they realy cannot wate

I got things to do deer, I don't want to be late.

Can't he chose it for you, he seems a decent chap

Can't you let him help you, stop geting in a flap.

If you cannot chose deer, let him tell which one

Would suit you best deerie, and let us all be done.

Can't you speek more cleerly, I can't make out what you say

There's lot of pointing and arm waves, a strange way to behave.

Are you deff then deerie, or mentaly deranged

It must be hard for you deer with her so badly damaged.

No, I never herd of that, a new fangeled disease

It seems they are always finding a new name for lunacy.

Well, it isn't normal to act the way she does

Grunting, crying, stuttering, and many a cuss.

Sorry I'm sure deerie, if I've got you upset

But I can't understnd you, and I've tried my best.

Think how my other customers feel to here your muddled speech

If fair gives them the shivers to here you call that cardigan a peech !

I think it best my deeries she stays at home now on

We wouldn't want to distress the others in the town

They want to live quite peceful like with nothing to distress

And seeing you in this state would surely not impress.

I need to get educated, is that what you are saying ?

I need to understnd your problms, and how you are coping ?

I need to lern how to comunicate with others like you ?

You meen there are more out there, what am I to do ?

So, you are inteligent, just language has gone astray

You understnd what I mean and heer all I say.

Tis a funy busness this thing you have aquired

What's that is called ? A funy word that APHASIA .

New year, new challenges the hardest resolutions

I appreciate I have been absent from the blog for a while, this due to nasty little winter bugs that chose to attack me.

Leading up to Christmas sinusitis, chest infection, colds, minor mouth surgery and a stomach problem have been wearing me down. Luckily I had two days reprieve, Christmas Eve and Christmas Day, when I could enjoy myself. Christmas Eve spent with friends that we have known for many years and Christmas Day with our daughter, son in law and grandchildren.

With the New Year approaching I am asked, what resolutions will you make? I always answer honestly - I don't make them. I have seen people start the New Year by planning to take up exercise, start a diet or give up smoking, invariably they never succeed and two weeks later they have failed.

My idea of change is not stopping something but starting something. My logic is that cutting or throwing out the 'bad' and bringing in the 'good' can never work when done suddenly. You have to run the two together, for instance if you never exercise and suddenly start exercising every day is doomed to failure but introducing exercise slowly as part of you daily routine will be better for your body and for success.

I have never undertaken a faddy diet, instead I have gently changed what I eat by introducing items into my regular diet or substituting one type of product for another. That way I avoid stomach upsets and other problems connected to a new way of eating. People who resolve to stop smoking usually find themselves buying cigarettes again two weeks after throwing away the last packet. Like those who resolve to stop drinking, the reason they fail is they go cold turkey. Cutting down and having a 'buddy' is more likely to succeed as the failure is the body reacting to the sudden stop of nicotine or alcohol. It is like weaning a baby away from milk and onto solids; it has to be done slowly and carefully.

When I want or need to make changes I do them when the need arises. Then I have no pressure to succeed unlike if I were to wait until the new year, nothing would ever happen and would doom to failure. Besides there is no time like the present to make changes if they are needed.

Therefore, I have no resolutions but I do have challenges which are on going from the work I have been doing since my stroke.

I have been working on my speech and using many aids to help. I have downloaded some apps onto my phone and tablet which I hope will help and inspire me. Many of these apps come via the ARC group on facebook. ARC, Aphasia Recovery Connection, is an American website to help Aphasics, not just in America but other places too. Members of the group post things they find useful and helpful to their recovery. I have a game I play which is a word game called 4 pics 1 word. You see four pictures with one word in common and that is the answer. Some are quite difficult. I have the whiteboard application which I haven't used except to show people. I you cannot make yourself understood verbally then the whiteboard means you can write the word, if you know it, or draw what you want, easily erased it is simple and effective. I have also downloaded onto my Kindle a workbook that my husband helps me with. He reads phrases or sayings and I have to fill in the relevant word. I know the words mainly but the pronunciation is the bigger problem there.

What I cannot improve on is my emotional state. If I cannot think of a word or make myself understood I burst into tears, if I lose something I know I had I cry it is like going into panic mode and nothing I do can stop it. If I want to tell my husband something he has to hold my hand to calm me. On occasions he does interrupt of finish my sentences when I am looking for a word and that upsets me. This week at the Aphasia group I go to we had a lady come to talk about homeopathy and how it helps with stroke. My husband had gone to the carers' meeting so I sat alone. I found the talk confusing and difficult to follow and he wasn't there to explain what was going on. The talk was long for me, I cope with short conversations with simple words but a talk like this isn't short or easy to follow. I panicked and started to cry and a volunteer came over to talk to me and calm me. I stopped crying but I was at a loss as to what the talk was about. I knew why I was crying then but sometimes I have no idea why I am doing it.

My husband tells me to calm down and breathe which helps. Other people say there is no problem with your speech we understand you, the problem there is they do not seem to appreciate the stress communicating puts you under. Yes, they may understand what I want to say but to get there is traumatic as searching for the RIGHT word is uppermost in my mind. At home I have lots of 'things' these are words that I cannot remember or find. My husband's job is to guess the 'thing' I mean and he is getting good at it. I can only describe it as the word accessible, there but just out of reach. I do not know the word of the thing I am writing this on for instance, there are many more and some people think it is funny that I don't know what they are. It isn't funny and when they laugh I cry.


This is my challenge to find these words and work on them and the pronunciation. This is not a resolution this is work in it's hardest form.

My Mr motivator

I certainly need motivation at times and the person that does that is my husband.

We have been married 42 years and for the last 12 years he has been my carer despite having health problems himself. Last year when I had two strokes in two weeks he helped me relearn to speak and when I had almost regained my speech then this stroke occurred. I am having speech therapy this time but he helps me too and he does try to think of ways of getting me involved in everyday things. But he also tells me when to stop doing things and when to rest, he is the one who insists on my pacing myself and it is sinking in to me slowly that perhaps that is a good idea!

This week at the Aphasia group I go to there was Vitalyze, Chair exercising for disabled people and non disabled too. We were a big group this week and with carers and volunteers we took up quite a bit of the hall. Sally the 'instructor' played music from the 50s by Guy Mitchell and my husband was singing along, doing the exercises and moving my leg for me he was having a ball! We moved arms, legs, hips, neck and back, which for some people was very difficult as their arms or legs won't move and they had to be manipulated either by themselves or someone else. Then Sally handed out soft balls and streamers such as those used by gymnasts. For those with hands/arms that won't move the ball was to help them grip by placing the ball in the hand and using the other hand try and get a grip on the ball. The streamers had handles and those with hands/arms that won't move the handle was pushed into the immobile hand and then with the other hand/arm move the immobile one to make the streamer move. Due to other physical problems I have with the rheumatoid and osteo arthritis, fibromyalgia and Sjogren's Syndrome I started to hurt and my hands swelled up but I managed it. My neck hurt a bit from the exercise as I have a herniated disc and my hips from the osteo-arthritis where I moved them but it was amazing. Once again my husband made me stop when I started to hurt. We plan to do some exercises like this every couple of days just as we have speech therapy homework to do where he helps me pronounce sounds.

I am aware, just as I have found others who have suffered strokes do, that I get tearful at times for no reason and angry for no reason as well. I don't get angry at my husband I get angry with myself and the situation of things I can't do or do as well as I would like. The problem is when I vent he is the one who takes the flak!

I have been told I have no reason to be angry with myself or with the situation but I want to do more and I can't. I am tired of pushing myself and getting nowhere. Sometimes I just want to run away but I can't walk let alone run. I couldn't cope alone, so  it is a silly idea really.

Sometimes I wonder why he stays with me, except he says he loves me. He doesn't need someone who needs so much care to wear him out but he does everything for me. I know at times I don't seem grateful or pleased about the things he does but deep down I do.

I can't understand why I don't understand things sometimes, why some words are elusive to me or I can't say words that are so simple when others say them. He just says, 'don't worry. It doesn't matter.'

That is why I have written these two poems for My Mr Motivator, to show him and you how much I appreciate him.

Even if I can't

Could you still love me, even if I can't say 'I love you '?

Could you still hold me, even if I can't hold you back ?

Could you still take me out, even if I can't walk ?

Could you stay with me, even if I need caring for ?

Could you still desire me, even if I have a useless body ?

Could you still caress me, even if I can't feel it ?

Could you still talk with me, even if I can't express my thoughts ?

I can't say 'I love you' but look into my eyes.

I can't hold you but I can sit beside you.

I can't walk but I still like to see outside.

I need caring for but I can't let you go.

My body is useless but I can still lie beside you.

I can't feel you caress me but I can see you touch me.

I can't express MY thoughts but I can listen to yours.

A lovesong for my beloved

Long ago we made a vow

Something I remember, even now

To love and honour each other we said

I do not regret saying it as we wed

I love you now as much as ever

And honour you here with every letter

As we became one till the end of time.

Deep in my heart my love is strong

And spills out in joy as a love song

Passion, desire, caress and urge

Wrapped up in every single word

This outpouring of thoughts of you

Are words I promise are forever true

And will be the same till the end of time.