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 .

Hospitals, celebrations, family and friends.

I have been back from respite care a little while now and my husband is recovering well from his operation, however, the hospital seems to still be part of our lives.

Since I came home I have seen the Rheumatology nurse, been to have an oximetry test fitted but that didn't work, had a Doppler scan on my neck arteries and  had a heart monitor fitted and removed. Next week I have a bone density scan and a mammogram.  As you can appreciate I am not overly fond of hospitals!

My lovely physiotherapist has been to see me and she is trying to organise some things to help me manage. She has given me exercises which will hopefully help the pain from my herniated disc in my neck and she is seeing if my manual wheelchair can be adapted for a neck rest. I have Wanda my electric wheelchair but if for any reason I cannot use her the manual one is very uncomfortable as I have no neck support.

I am still waiting to see the speech therapist as I haven't seen one since I left hospital. My speech is very much hit and miss as some days I can cope fairly well but other days are horrendous.

I feel I have a ball like for the lottery or bingo and the words are spinning round. The door opens and I try and grab a word that I want but so many times I miss. The door opens and closes so quick and the word I want just disappears into the middle of the other words tumbling around.

Reading this you probably think I have no problem but this is tiring and frustrating as I search for words that I want. I will look for the word I want and it can take such a long time looking for just one word.

My problem with the background noise doesn't seem to go away. It can ruin enjoyable times with friends and family as I end up in tears because I cannot concentrate on what people are saying to me. I very much want to start mixing with people again and already have started with two courses at our church. Each course only has about a dozen people and in the main they are the same people too. One course is weekly and the other fortnightly. They are quiet and I can follow what is said as people are talking one at a time too.

My next challenge is to restart Trefoil Guild at the end of the month. I know that there will be a speaker and I hope that if there are questions people will speak one at a time. I have explained this problem to them and on the whole I think they will help me. Also, a lady from the Stroke Association came to see me and has told me of a club/support group run by the Stroke Association for Aphasia sufferers. I hope to go along to that. Apart from when I was in hospital I have never met an Aphasic. I need to meet people like me. I explained to her that at times I feel very alone, in a little bubble.

It is hard to know what to do to help yourself although my husband and I have tried to come up with ways. We have played scrabble, not competitively just to try and help me and as I make a word I have to say it. I have been playing Solitaire on Facebook to help with my concentration and other games but I am not very successful at much. Something else I have found is to use when my speech is not good. A lady on Facebook sent me a link to a site for children as I have been searching for flashcards. I have printed off the ones I feel are good for me food, washing, dressing, kitchen, bedroom, bathroom that sort of thing. The lady from the Stroke Association has also told me about apps for my phone and tablet that will bring up words I am looking for.

Last Sunday was my birthday so after church my husband, myself, my mother in law, my daughter, my son in law and my two year old twin grandchildren went out to lunch. We enjoyed it immensely and I feel I managed very well as the area we were in was quiet. Monday after the Doppler scan of my neck we went to meet friends for lunch and on the whole I managed well there too. I went shopping and coped well except for the paying I always panic at money matters! Then to see my brother and his partner as they couldn't come on the Sunday. Tuesday and Wednesday hospital and today the Stroke Association lady and I am exhausted. I am finding I am tearful as I am tired and the brain not working. I get upset if the words won't come to me. Frustration makes the speech worse and it is harder to find the words I want.

Communication after a stroke is not well publicised and the problems are numerous. I was given a list of the problems and identified some that I have. I am not able to understand people if they talk in long sentences as I forget how the sentence started. Sometimes I know exactly what I want but cannot put a name to it. I stop talking as I can't find the word I want and I know I know it but it won't come. When talking I will talk in short sentences missing out words. I now understand this is normal.

The hospital appointments and meeting family and friends has been tiring. This has meant I could not write anything as I was waiting for the roller coaster to finish. I have been so tired I haven't been out at all today. Tiredness and Aphasia do not go together at all. That is not only what I say but the books and the professionals so I have to believe it.

My plans for PACING have not gone to plan this last week or so and I shall have to start behaving again. But my excuse is I get hospital appointments I have to keep them as they are taking care of me and that is what I want.

A lecture and a nasty word then fun and games in the park.

If there is one word I just cannot handle it is PACING. Yes that old chestnut that physiotherapist like to use.

I am unfortunately someone who wants to do it all. Once I have mastered getting to the bathroom with my husband and the wall for assistance I want to walk everywhere! Just one slight problem. It hurts, I can't get there without stopping a few times and I am knackered afterward.

So yesterday the Neurological physiotherapist came to visit me and assess how things were going. She was pleased when I did the little bits like bedroom to bathroom (just next door to each other) and sofa to kitchen which is just five or six steps. Then the lecture. I must do just little bits or I will get too tired and not make progress.She then ganged up on me with my husband to say I must PACE. It was no good me covering my ears they insist. So what must I do instead?

She is contacting the speech therapist to visit me and the occupational therapist. She herself is away and will contact me when she is back to see how it is going. In the meantime I can walk to the bathroom and back to the bedroom. I can walk to the next bedroom just a few steps away then use the wheelchair to get to the lounge. I can transfer from chair to sofa. I can get to the kitchen and use the perching stool if I want to prepare meals and if I am good I can stand for a very little while. I can stay up for short periods unless it is important to be up for longer, otherwise it is a wheelchair ride back to bed.

Bossy? Yes but sensible really as I am stilling feeling very tired.

My staying up was approved for today so I could spend time with our daughter and grandchildren. I told the physiotherapist I wanted to go out to lunch and to the park so she allowed me on the condition I rest for the next TWO days!

So we did go and meet up with our daughter and the twins who are two and a half. I didn't have to talk to anyone out and about except for my family and no one, not even the children, took any notice of my speech. It is amazing how children accept us as we are.

After some fun by the sea where the children went on a bouncy castle and a merry go round we walked to a pub/restaurant for lunch. The children found some amusements there too and ate a good lunch. We went to the town afterward and I needed to go into the bookshop. I was looking for a book I want for my birthday so my daughter and husband know which one it is. We couldn't see it on the shelf and I was saying the name of the author when one of the staff came to talk to us. Panic stations, I just wanted to go. My daughter said I could come in a look another time when the children were not there getting fussy standing around so I could escape.I felt silly afterward for getting panic stricken.

A walk to the park where the children fell asleep was lovely. Hardly anyone around so we could meander along the paths. Then they woke up and we went to the playground for a while. Where do they get their energy?

Back home we all had a drink and a biscuit before our daughter and grandchildren had to get their train home. Before they left I was so tired my husband helped me back to bed. No sooner had he left to walk to the station with them and I was asleep!

So tomorrow I must rest and to be honest I need to. I am still knackered and I have slept for an hour or more and only had sandwiches for supper. But the physiotherapist was right I need to build up my strength slowly and PACE. I won't be spending every day like today so I must allow for these things happening.

I thoroughly enjoyed seeing the little people enjoy themselves. They throw themselves into everything with gusto. I must NOT throw myself into things I must slow down. And dare I say it PACE myself. Seems I must learn to like that word if I am to get any better.