Poetry in motion

I have had a rather busy and painful time recently and writing hasn't been the top of my priority list.

I have, however, had some good and interesting times too. The Aphasia group is first class, I love it there. I had a go at hangman with my husband although I wasn't very good at it I made an attempt.

I have also been on a one day retreat with members of our church. It was a horrid, wet day but we had wonderful fellowship together, meditation and even a walk by the harbour. One thing I did discover during the retreat was that I could still write poetry. It means digging down inside myself to my hidden feelings, once uncovered I found that I still enjoy putting the feelings down on paper, letting them out to make a statement on my behalf.

Writing has always been a passion since I was at school. I love words and find that there are so many to explain our hopes and desires, our loves and hates, our needs and wants. I feel uncomfortable with unnecessary swearing that so many feel is needed to explain what they mean. The English language, whatever form you use, is diverse and eloquent enough without stooping to the profane.

I felt that I needed to put my feelings on Aphasia into words, not spoken as that is difficult, but onto paper (or on my blog) so I started to write and the words came, slowly, but they are there. Not first rate but they are my feelings and still I have blocks where words are refusing to show themselves. The rest is for your opinions.

More than words can say

I don't need words to express my feelings

I say more with my face, my eyes, my hands

My body too tells you all you need to know

Who needs words when there are other ways.

To show my love I open my arms

I hold you close and hear your heart

I smell your scent, I taste your tears

I feel your love, do you feel mine ?

I express my joy with smiles and laughter

I smile with my eyes as well as my mouth

Ecitement flushes my reddened cheeks

My energy flows like red hot lava.

My sadness fills my entire being

Tears fall, compassion shows

Comforting arms hold shaking bodies

A hand mops eyes red and sore.

I am not dumb when other ways,

Can be found to express my feelings

I ask your patience and observations

Actions speak a thousand words.

Words of hope

Tears course from swollen, reddened eyes

Dripping unseen to wet the floor

Frustration builds like a volcano inside

Filling my being bringing pain to the fore.

Feeling helpless and hopeless a daily chore

Searching and probing the depths of the mind

Where once an eloquence spilled forth

Now empty gaps fill a troubled brain.

Words of platitude do not help

They smack of sufferance and pity

A gesture of love quietens my whirling brain

Accepted from a loving hand.

Accepting a state of confused emotion

A world where words mean more than action

A world so different to the one I live

Words fail, hopes dashed, stress reigns.

Acceptance in this world of yours

Means more than wealth galore

To be seen as one with you is all,

I ask from each and everyone.

Don't mock or tease. Don't patronise

Don't fill my space with your own words

Patience, I ask, is all I need

And time to talk at my own leisure.

Not words alone

Words spin wildly in my head

I lurch and grab at every one

They soar away out of my reach

Before I chance myself to speak.

So many things I have to say

Words that tell how I may feel

They each express my hopes my fear

My desires and love of those most dear.

I long to say to each and one

I love you, need you, hold you tight

But words are fragile they come they go

They never stand clearly in a row.

My thoughts stay buried in my mind

Not able to reach my waiting lips

I tell my thoughts not by words alone

Gestures fill the void words fail to hone.

What do you see ?

Look at me, what do you see ?

A person, that is me.

I have feelings, I have hopes,

I have desires by the bucketloads.

If you hit me I will hurt

If you cut me I will bleed

If you call me offensive names

I will cry tears of pain.

Inside, I am just like you

I love, I hate, I worry too

I am no different to all I see

I have a voice deep inside of me.

I didn't ask for what is done

I cannot change it, fate has won

But I will never sorry be

That what has happened, happened to me.

My voice will not carry through the air

It fails to register a note to share

But write, I can and my words are said

In black and white and can be read.

I tell you, I am human too

With blood and bones and feelings true

If you have time to read my words

You will hear my voice as it is shared.

Because I am different to you

It means I see things not clearly viewed

I see them from deep in my heart

Those are what I try to impart.

Together we can make a change

In peoples' perception easily made

The fight is on and with your help

A different generation will surely swell.

A little bit normal

I have named the way I now speak as Aphasiaspeak, of course it has no real meaning but to me it is a name I gave it to differentiate it from my own voice.

I have found I feel a little bit more normal at the Stroke Association group I attend as there are several people just like me with Aphasiaspeak. When I mix with people outside I am aware they are not sure how to communicate with me and today we had a visitor and I asked that she looked at me when she spoke, 'oh OK,' she said. It sounded a little like she was surprised at the request but to be honest it is just what you would do to anyone really.

I had to go to hospital yesterday to see the stroke doctor. She didn't keep eye contact with me and sometimes it was a bit hard to catch what she said and she didn't really listen to me. I know some people look to my husband for translation at times but even he, on occasions, can't understand. It is so frustrating when I cannot get the words out or find the word I want, I know they are there and many times I feel I could say the words but they just won't come. I have a picture in my head of what I want to talk about all I need is someone with telepathy! 

Communication is more than words, facial expression, hand gestures, body movement and your eyes all mount up to communication. If words fail you then if you can try with a few words and gestures it is possible to convey some meaning. I have often been told in the past if you couldn't you your hands you wouldn't be able to speak! Thankfully I can use my hands and it has made it possible to communicate what I want or need. 

I have been interested in what an American Aphasic has said about working with the law enforcement in his area. Some Aphasics have had problems with police officers who have taken them for being drunk as they couldn't speak properly. In a situation where a person is being interviewed by police officers they can become stressed and get confused as they are asked questions. If you start from the position of being unable to communicate and the pressure becomes increased then words do literally fail you. Police who are not acquainted with Aphasia do not understand the problems it can have, mostly that it is not just a difficulty in speech; that is just the obvious part of the condition. Reading and writing are part of it too and an Aphasic would most likely not be able to read any document given to them or even write their name and address. One thing that police should also realise it that understanding is very much lacking with many Aphasics. They cannot understand even simple instructions or follow a train of thought. It can look very much as though they are being awkward or belligerent when it is the process that doesn't work. 

It pleases me that law enforcers are willing to learn about conditions such as Aphasia. It is a long time coming as it isn't as though it is a new condition it has been around as long as strokes have affected people. If they don't have anyone in their family or friend circle with the condition they believe that there is nothing wrong as Aphasics look like anyone else it is just their speech that is apparent when they talk. But the fact they are willing to learn is a step in the right direction.

Aphasics are not abnormal, subnormal they are normal in their own way. Because I cannot talk well doesn't mean that I don't understand, sometimes I am confused and misunderstand what is said but that doesn't mean I don't understand everything. Reading is hard and a work in progress, writing takes time and I have to spend time finding words and meanings so I find the right word. I can go a couple of days without writing my blog while I search for a word I want. 

Patience is the key for people communicating with Aphasics, patience to have eye contact, speak slowly, if a question is not understood find another way to word it or write it down, draw a picture if possible and not use long complicated sentences. For me keep it short. Don't try and hold long conversations, keep to about 15 minutes and take a break before resuming.  I do tend to run away when it all gets too much but if I try and stick it out then my speech will become more and more incomprehensible. 

As I tick off the list of the effect Aphasia has on people I can see I am a little bit normal. My speech is affected, as is my reading to a degree and my writing is not too bad but takes time/ I do understand, mostly, what is said although I can get confused and panic.

A little bit normal? Yes I can take that, but what I would like is more understanding of the debilitating condition Aphasia is and that can only come about through educating people and the police are a good place to start.

Effort, time, practice and training

After three months I had hoped to see significant improvement in my Aphasia, I have but not in quite the way I had hoped.

In hospital the surroundings and the daily living was different and I coped really with just speaking. I understood and heard all that was said, sometimes I needed to clarify certain things but really it was fine. Looking back I felt comfortable there as people understood the problems we faced on a stroke ward. They could understand how we felt and reacted as they had seen it before and took time to sit and talk to us, encourage us and let us cry if we wanted to. I often had the curtains round my bed closed as frustration took over!

Then I came home and my husband has been excellent at figuring out what I want and what I need. We get by and he regularly treats me to a surprise not huge but to cheer me up. He does sit and talk with me, he holds me and lets me get the frustration out. He has always said that he doesn't know how it feels but does see what it does to me. That is all I ask.

After two weeks of respite care I came home again to start living and that is when I really noticed the problems mount. I had found the background noise a big problem in respite care, the dining room and television rooms the worst. At home the noise from the road is terrible and shops are so bad I have to wear ear plugs there as well.

Now things are adding up, I cannot watch the television or listen to the radio if there is a lot of talking on the programme. I love detective programmes but it gets to me after a while and I have to switch off. I listen to a classical music station which plays music with very little talking. I love to read but that is becoming more and more difficult. Partly the Aphasia I think there but also I have Sjogren's Syndrome and have very dry eyes. I find myself doing nothing a lot of the time and have taken to resting or playing games to get my brain working.

Maybe it is because I don't talk as much as I used to but my voice gets crackly after a while, I noticed this twice this week. Monday I went to the Trefoil Guild and enjoyed the evening of a talk by a young lady from Canine Partners who brought her lovely dog Whiskey along. I spoke to people and we discussed guild matters after the people from Canine Partners left but I had a very sore throat next day.

Wednesday I went to a club run by the Stroke Association which was set up for Stroke survivors to meet up but mainly the people there are Aphasic. I met people with different types of Aphasia and this made me feel much more at home and normal. I was told I am normal but up till then I was feeling isolated. One man cannot talk at all, one says very short sentences. I was happy that I can communicate as much as I can but for me it is when I try and explain things talking gets harder and harder. The thoughts are so fast the words are so hard to grip. Sadly some people don't understand this when I explain and say well slow down then. If only I could. I am thinking so quick I am not fast enough to catch each word and the words go along so fast I lose more and more of them. My speech gets worse and worse too and that is when people want me to slow down. A yes or no question is OK or a choice like tea or coffee, I manage that no problem but when I need to explain something then everything falls apart.

Something else happened today that I cannot explain. I said something to my husband and in my head it sounded 'normal' and I was excited. I said something else and it was back to Aphasicspeak as I call it. I asked my husband about it and he hadn't noticed any difference in my speech at all, so it looks like wishful thinking on my part.

I invested in some new earplugs and a pair of ear muffs yesterday when we went shopping. I like the new ear plugs better and with the ear muffs over I am a separate entity from the world. My husband has to tap me to get my attention when I am in them as I am on planet me.!

The noise in the shops was manic and if I hadn't been desperate to get some Christmas shopping in then I wouldn't have bothered.

So, you are wondering, if reading and talking is so hard how am I writing this?

I make things up in my head over a period of time and write bits down. I go away and come back to do more. I can spend ages looking for one word that I want to use and being a perfectionist I will search and search until I am happy and I will admit I am not always happy because sometimes I can't find a word I want. Effort and time are the answers to how I do it. I look on my writing as a form of sport where people practice and train until they put in their performance and hope the time spent in preparation has been worthwhile.

Is that the answer to my speaking problem? Not enough practice? Not enough training? Not enough effort? Not giving it enough time?  I still talk but need my husband to talk for me more which, he says, is a  novelty!

What happens then if things that I enjoy are being taken from me? I adore reading, I devour books. films, plays and television programmes. I dread to think I won't have anything left that I can lose myself in.

Aphasia is very isolating in many ways and it does cause so much distress. I feel that each thing I cannot do is a loss to me. I mourn for me before this and I am mourning with each loss of enjoyment. If people think that Aphasia isn't life changing then they have never had to give up anything that means a lot to them.

The architect, the builder and the saboteur

I try very  hard to explain to people how Aphasia affects me. They think it is just a speech impediment I have or they have met me before and say, 'what's happened to your speech? Why are you talking like that?' It is if I am putting on a silly voice.

I wish it hadn't happened but what has happened could have been so much worse, so I am grateful that a silly voice is all I have to show for my stroke. Well not all. My never ending struggle with background noise doesn't improve and I wear ear plugs now to try and block it out. I can't wear them all the time so something else has to be found but for the moment I am managing, just.

In trying to help myself come to terms with all this, and to support others like me, I started this blog. But out there are people who don't know what Aphasia is, or what it does to people and most of all the affect it has on them.

These are people who probably know someone with Aphasia or even care for someone with it, but the actual problems faced by an Aphasic is lost on them.

I have written this next bit to try and explain what background noise is like to me. I can't say it has the same affect on everyone with the problem as we are all different but I know how I feel and this is how I see it.

All communication comes from ideas gleaned from what goes on around us. We glean these from what we see, what we hear, what we feel and what we taste. The ideas are taken by our architect in the brain who draws up the plan for the builder to assemble into the different modes of communication; words, facial expression, gestures and sign language.


Think then what happens if a saboteur in the form of excessive back ground noise disrupts the work of the architect. As he draws up his plans he is bombarded with overwhelming noise that interrupts the other information that he needs to draw up the plans, so these plans become increasingly flawed.


As the saboteur keeps up his work the builder receives more and more defective plans to work with and increasingly the work starts to fall apart. The architect downs tools and refuses to work under the stressful conditions leaving the builder nothing to work with so, he too, goes on strike.

Only the saboteur is the winner in the power struggle.

 

Please insert she for he as appropriate!

Now if you think I have gone mad, I am sorry but essentially this is what is happening. We learn from a young age that what we see, what we hear, what we touch and what we taste will be the information that we work from and with for ever. We learn that sugar is sweet, so every time we see or taste sugar we know it is sugar. The taste is familiar and the look is familiar so it must be - sugar. Lemons are bitter, they are yellow and they look like a small  rugby ball. So when we taste or see one we know that it is a lemon.

Words are like that. We see them written down, hear them spoken, taste them as we pronounce them and feel them as we visualise them. If I close my eyes and hear the word rain to me it get a picture of wetness on my face and the smells of hot pavements and wet grass. 

If there is a lot of background noise I can't hear the word and I have nothing to imagine. So my architect is slaving away in very unsatisfactory conditions against the saboteur and sending defective words down to the builder who cannot make anything fit together. When the architect goes on strike the poor builder has less and less to construct with until, he too, can go no further and stops. 

That is when I can't talk any more because I have no words to say as they have been sabotaged and as I say I am very fluent in gibberish!

I went to the Trefoil Guild meeting this evening and met some wonderful ladies. They were wonderful in accepting me and helping me. Once only did I get upset because I couldn't make myself understood, but we got there in the end.

Tonight we had a speaker from the charity Canine Partners. These are assistance dogs for the disabled. We met a gorgeous black labrador called Whiskey who helps his owner Karenza at home.

She too uses an  electric wheelchair and has encountered people who do the 'does she take sugar" syndrome. I agreed with her as sometimes I feel I get the virtual pat on the head of there there. Her talk was interesting and an eye opener for us in the amount of time it takes to train the puppies and the length of time a disabled person has to wait for one. The guild are planning a visit to the training centre at Midhurst in Sussex and there is, she says, no opportunity to sneak a puppy home! Damn!

Karenza's situation is different to mine as my Aphasia is different from other Aphasics. But deep down we are basically the same. We all struggle daily, we all have highs and lows, we all want to be accepted in society. She said she has days when very tired that her speech is not as good as other days. My starts from a different starting point and goes down. But we both have architects and builders who are sabotaged by the saboteur. And when we are at our lowest, there is only one winner - the saboteur. 

Accepting help, it isn't giving in

I have always been independent and to be in control. I have found it hard asking for help but I know I have to and it isn't easy.

Since my stroke I have had to accept I have need of special aids, so when the occupational therapist suggested things like a profile bed which,with the use of an electric controller, helps me sit up, lie down etc I agreed. I have a raised seat on the toilet, a bath board to help me get into the bath to use it as a shower and a perching stool in the kitchen so I can help prepare meals.

These are practical aids but due to the Aphasia I also need emotional aid. I for that I had to turn to the internet.

I found a group on Facebook call Aphasia Recovery Connection. They are based in America and the people on there, not all American, are amazing. They have been such a help to me, befriending me, giving advice, making me feel better when I am low and laughing with me when I am happy. Friends, one and all. It is a relief to know there are other people like you out there as Aphasia is very isolating.

Every now and again a question is put up and the members of the group say what they feel. I wrote about how people should treat Aphasics. I said: Talk to ME I hear, understand and can talk if you give me TIME. Don't tell me what I mean, don't finish my sentences, have patience. If you hurry me, harass me, get impatient with me I panic, get frustrated and then cannot say anything.

People agreed we need others to treat us just as everyone else. Yes we might take a little longer to answer but it won't help if other people try to rush us, harass us, try and second guess us or finish our sentences for us. For me that means I go into panic mode, get frustrated then I cannot say a word. As I said the other day I am fluent in gibberish, but nothing else!

They also have a games forum where fairly simple questions can be answered generally to do with the small words people 'lose' when trying to talk. The, and, on, in, under etc. I am so happy to have found the group and have become friends with some of them already.

I know my concentration is bad so I do games on Facebook, not many but ones that mean I have to match cards, put three of the same thing in a row, fairly simple you might think but when you forget something as soon as you take your eyes off of it well then you have to work harder! Some games I cannot get into even though people invite me to play, but if I am going to panic when I can't cope with it what is the point. It is a thank you but no thank you scenario.

I had a visit from a lady representing the Stroke Association last week. She was very helpful and when I explained I have this connection with people on the Internet she was pleased I was getting involved. I told her I also go to Church and church meetings and except for the services the meetings are small groups. I am going back to Trefoil Guild; the older ladies of the Guiding Association, and I have told them about Aphasia already. But what I don't have is access to people with my problem. So she told me about an Aphasia group her mother belongs to. It isn't too far away and it is run by the Stroke Association but for Aphasics. There is a Stroke club near us but it isn't specifically for Aphasia. Meeting others with a speech problem will help the feeling of isolation.

I will admit that most people I have encountered out and about have been brilliant they accept that I need time and are willing to help me however they can. I relax better in that sort of environment but will admit that even my husband doesn't always understand me!

With all this help available I hoped that there would be something for the background noise problem I have. But no, there is nothing. All the Speech Therapist could say was try and block it out: but I can't. I mean, I wouldn't be bothered by it if I could would I? Even sitting talking to her the noise from outside made hearing her and understanding very difficult. She says I use a lot of facial and hand gestures which is good communication, which I am happy about. I have flashcards too for when I have a very bad day. 

So the speech therapist thinks I have a problem with heightened sense of hearing. This isn't good news as the sound of talking, traffic, cutlery, crockery and music is much more heightened to me than others. My husband and other people say they can block it out unless it is very noisy, what is ordinary to them is extremely loud to me. I have searched the Internet for articles about the problem but apart from a passing reference, there is nothing. My neuro-physiotherapist was going to talk to the stroke consultant to find out if I can be referred to an audiologist and see if they can help.

In the meantime I invested in some foam ear plugs. They were useless, they don't block the noise and they just come out even if it does say on the packet they are for travelling, snoring and sleeping. So today my husband went out and came back with some silicone ear plugs. I put those in and they work. He does insist of speaking to me although I say I can't hear him! Only problem is I don't think I can wear them all the time as there is no way for air circulation. I have seen some on Amazon I think I will invest in, they look a bit like mushrooms and have space to have air get around. I will see, it depends on the use these will get. It does mean people will have to look AT me to speak to me and not mumble. It will be interesting going to the Aphasia club to see if there are any others with this problem and find out their way of dealing with it.

Apart from the Stroke Association UK Connect - The Communication Disability Netword and Speakability also give help to people with Aphasia in the UK. 

Once I accepted I needed help, not with everyday processes of getting up, washing, dressing, but with speech and hearing I found so much out there for me and so many people willing to give time and effort in befriending me and sharing experiences. 

Coming home from hospital isn't the end of the journey it is the start. Being in touch with other people who have the same problems and concerns isn't immersing yourself in despair it is sharing the good and the bad with those who really understand. That is so much better than sitting at home isolated and miserable.




 

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.

Speaking in tongues

I have been AWOL for a few weeks due to circumstances beyond my control. Namely that my husband had to go into hospital for an operation and I had to go into respite care. Now my husband is home and he collected me, so we are starting another page and hope we can settle down properly in our new home.

Unfortunately the place I went to doesn't have WiFi, free or otherwise, for 'clients'. So I had to make do with books, magazines and using my iphone which is rather expensive. But I am back and can catch up with my blogging and the news which I have missed out on.

The care home was OK and I did have a single room thankfully. I could shut myself away and read to my heart's content. That suits me fine even if I have to read the books a few times so as I can remember what they were about! The problem I had there was NOISE.

I have mentioned before that my Aphasia causes me to be troubled but background noise. In the care home I made my way to the dining room three times a day and unfortunately I had to leave at the earliest possible moment. I felt I was running away and being rude to people.

The talking all around me, the clatter of crockery and cutlery and sometimes there was music playing too I would be in tears. I told the staff and they were very kind but of course could do nothing about it. I did eat in my room a few times but because I wasn't mixing with people I isolated myself. I couldn't go to any of the television lounges because of the noise as people were talking while others tried to watch the television. I preferred to have my radio on and listen to classical music; much more soothing.

I took myself to the local church on a Sunday morning and the actual service was fine. Afterwards they were serving tea or coffee so I went through to have a drink. At first all was well but then people started to come in and the talking got louder and louder. Added to that the clinking of cups and saucers, I drank my coffee and said I had to get back for lunch, which was true.

I am hoping I will manage this Sunday as our church is holding it's Harvest Festival lunch. We have decided to go and I am wanting to see people and mix with them. I hope I can cope for an hour or two, if not I will have to miss out and so will my husband who will have to take me home.

I have explained to people the problem and hope upon hope that they will follow the guidelines in communicating with me. All you can do is tell people and ask them to follow the advice but you cannot force them. Although I know my husband will remind them if need be.

The worst experiences I have had with noise has been at the hospital. I had a little problem with my eye and had to go to an out of hours eye clinic. It was quite quiet when we arrived and then people started to arrive. A lady went into the doctor's room with her son and daughter (they were all adults and not young). When they came out they saw some people they knew and chose to stand directly behind my wheelchair. They talked over each other getting louder and louder until I was in tears. My husband stood with his hands over my ears and a nurse was in the waiting room so she came over to see if I was alright. My husband explained the problem and she took my letter and got me in to see the doctor immediately. The doctor was very helpful and spoke to me giving me time to answer. The only thing he checked was that I could understand what he said. I had another bout of what I term 'noise panic' in the cardiology waiting room but it wasn't as bad as the eye clinic.

I have tried to find a solution to the problem and had some advice. Certain headphones have a switch that will cut out background noise but I am not sure how they would work with me trying to listen to someone having a conversation with me. I have also seen directional microphones that fit onto eye glasses, they have a earpiece at the back of the glasses' arm that goes into the ear. Again  I am not sure how efficient they would be. I would be willing to try them but first want to know more but they is little on the Internet about either the headphones or the glasses. I want to ask my speech therapist but she is away for a couple of weeks and there is no one else to ask. Aphasia groups and websites don't have anything on this problem yet it isn't rare.

I have tried to explain what it is like having the background noise problem. People don't always talk quietly even if there are just two people having a conversation. In a waiting room or café there may be 20 or so couples, all talking and trying to hear over the other people. The hubbub gets louder and louder. This is how it is for me but someone like my husband says the noise isn't very loud it is bearable but to me it is like being at a cup final match every day with people making a huge noise. I am told to block it out but that is the problem I can't.

The stress and strain of the background noise is everywhere in shops, the post office, in the street everywhere I go. Of course it takes it's toll and my speech suffers as I get tired and frustrated. Aphasia can and does vary from day to day. I, like others with Aphasia, have good days and bad days. In a book I was given on Aphasia there is a drawing a man is saying, 'some days I can talk the hind leg off a donkey. Some days I can't talk at all.' Things can make it worse, as I have found, tiredness, being frightened, being anxious and being upset.

It says that if you know what causes these fluctuations avoid the things that make talking more difficult for you. Moving away from noisy situations or asking for the noise to be cut down. I understand that but how can you tell a waiting room of people or a shop full of people to stop talking?

I felt I had achieved a lot today as I went shopping with my husband. I did have to leave him to pay and wait outside the shops on occasions but how could you tell a mother whose child is in total meltdown to keep it quiet? All I could do was leave the shop. Some advice is not always helpful or sensible we have to manage the best way we can, we know what would help and make it totally bearable but we have to live in the real world and the real world has to work for everyone without exceptions.