No man is an island

No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thy friend's
Or of thine own were:
Any man's death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee

John Donne

I love this poem and understnd what Donne saying, but had he met an Aphasic? 

My Aphasia has ment I have tried to retreet my own island, like hermit, retreeting inside myself  trying make sense of what this condition doing to.

I explained before what Aphasia is and chalenges Aphasics face in evryday life. Comunication is part of evryday life so, when it disapeers, huge part of our lives disapeer with it. Man is ment to be part of society, a society that interacts with each other. So much life revolves round comunication, from the time we wake in morning to the time we retire nite we comunicating. Radio, television, email, text, leters, books, magazines, greetings cards, films, social media, socialising, doctors/dentists/consultants apointments, famly and frends we are always in some form comunication.

If you have truble speeking and you want tell your husbnd, wife, partner, children, parents that you love them but are unable to say those simple words I Love You, can you imagine how hertbraking that is? If you can rite then it is a form of expresing those sentiments but if you cannot rite either, it is another blow. If you received a card with those words but couldn't reed, how distresing you think  is? But that how Aphasia afects  many peple. 

I was trying hard to work on my speech, reeding and riting. I could say somethings, my reeding, like now, at a basic level (nothing to hevy!), riting was a problm because of speling. I also mised small joining words. On  my retreeted  island I very low, I forgoten famly and frends' names, I forever trying to find other ways to say things, explain things, describe things. There it was in hed and I wanted 'set it free'.

My speech therapist came up with video camera and wanted me and my husbnd video ourselves having conversations. We gave it a go. When it was played back I saw I could comunicate much beter than I thort! I was building a bridge to other islands, islands biger and with more peple on them! As we made our videos she praised me for way I comunicate and say we perfect models for Aphasics to follow!

Having lived in France for 10 yeers we had become used to using gestures to emphasise our words, I was using lots of gestures more than I realised. Pointing, pictures, hed, eyes, body I used them all. I could comunicate! 

It was time to walk over the bridge and meet peple from other islands. It didn't meen that I was cured, no way. Feer still lurks and at time I retreet to my island and block the bridge. I rite more but finding words is still hard. I still reed easy books. I cannot follow some things I get confused, agitated, upset. Peple ask if I watched so and so, red so and so and I say no; oh you should it great. But I have not been able to I just can't - yet. 

One thing that has upset me is I haven't been able to go to church. It isn't that I don't want to, but just the fact I scared. True I have had lot of problms with pain over the last couple months and doctors have helped that. I got more tablets take! But I scared number peple there, talk me and then sermon I not sure I able folow. I try get out be with peple, but siting same room them and noing you got talk, I panic.

I try explain this peple but they not understnd. That meen I retreet again and want stay own island. Why you not understnd? It over and over in hed.

I think, what big problm? Talk, reed, rite? I no it talk. OK. So, I no I not talk gud. But I comunicate. So if I able comunicate, what problm? None! Ah, but peple think I stupid not talk gud. Is that MY problm? No. It they problm. If they problm way I talk then tugh! 

Concentration and understnding problm me. Some sermons go long time and I not follow, what do? Try follow and if can't sit and pray! 

I able take these answers other things. Grups are big problm me. I gud small grups but big grups more noise and I not able follow peple say. So I find one/to peple talk to and keep that.

Donne rite, no man (or woman) is island we all need be part of biger continent. We need them suport, sustinense, information, company. We conected by what we give each other. When one us not being part we mised and the interaction brake down. Even hermits mixed with others times. For news, food, company, reasurance.  I venturing further from island, times it nice return and recharge then venture out gain.

I working on meeting biger grups and no I lay down rules that. I hope things improve but if not, I got ways comunicate and if peple not like it they not need talk me!

We all part one whole

Small as we are, we all part one whole

We all got something ofer 

No one more or less important than others

We are no beter or worse than others

But some will try to bring you down

Avoid the rubish tips, where the truble lerks

Life rols by in fast lane and times we need retreet to sanctury

Find that place calm, recharge and stride out again

Peple not have like you or want you, they have choise

You have choise to, go where you wanted, needed

Go where rivers flow, flowers grow and sun shines

Go to the hapy places, places where love blosoms.

Don't let angst and critiques bother you

They drag you down, hurt you, bruise you.

Keep to the side where green grass grows

This you life, you got choises, you got chances

Make rite choises and you chances come

You got something ofer, YOU!

You got something peple want, YOU!

For each rejection there many chances

You small  but part of whole picure.

You as important as evryone else

You no beter, no worse than evryone else:

Go where you wanted and needed

Let nothing bother you, not get draged down.

Live for you and remember you are unique

You are YOU and there not another one like it!

Rose tinted glases

I not ritten in long time. We went France to see famly and visit our house which is now up for sale. I miss it much but we no it now time move on. We can still visit our dauter and her famly, if she agree! I miss the grandchildren and we have great time with them. They got so big, it was 16 months sinse we last saw them and the change was enormus.

I was asked if I miss the house and the area we lived, I say yes we hapy. We like the peace and quiet of the countryside. We drive hour and not see another car. Then I think, was I remembring rite?

Yes it lovely, fields of cows, lakes, forest, quiet roads, speedy apointments at doctor or consultant. Smell fresh bred from bakery, helpful butcher, greengrocer, pharmacy. Siting outside café watching world go by. The BBQs in the garden, growing own vegetables and herbs, siting in the garden listening to the drone of bees, watching lizards sunbathing, evenings watching the bats flying. The sound of the stags in ruting season. Those rose tinted glases were well employed.

I think of the heavy snow and painful cold. The freezing pipes, the sporadic electricity in thunderstorms. The treacherous roads to get to doctor (rite by huge lake with no fencing and ice on road), the amount work do on house, the batles with beaurocracy; in another language. The treatment of disabled peple being horendous. No droped kerbs, groveling for caddies to fit the wheelchair in supermarkets. When I got Aphasia first time in 2012 the isolation as I was the French speeker for me and my husbnd. He tried and he did shoping but couldn't explane anything. I had rite lot leters, luckily I could still rite OK.

Now we in UK and able manage beter. Still missing France a lot but it beter get treetment in own country with own language. I still not good talk lot and leeve most to him, unless with peple no very well. I got card say I had stroke and got Aphasia. I kept in in my handbag/purse in my purse/wallet. But as use wheelchair it fidly to get out so I got lanyard with ID card wallet and put in there. It hang round neck and it easy show.

I try find ways round stuff and glad I can. I not use those rose tinted glases as they just cause havoc! I want see what rite and what rong. I like try and find anser to problms and I can't do that when I not got clear picure.

ROSE TINTED GLASES

Of rose tinted glases I have no need

I just take of my own and I suceed

No trace of dirt, dust or grime

I look in the miror and I am in my prime!

I see my husbnd, so young and virile

My hert makes a leap, a bound and a jigle.

 

I don't see grafiti on the wals

The crime, abuse and braking of laws.

The anger, the poverty and homeles neer

The tears, the hopelesnes and downrite feer.

The spiraling down into an abys

The peple so many say they wouldn't mis.

Love is a state that is felt in the hert

It flies into me percing just like a dart.

It opens the way for a sweling of pride

That I should be loved, I'll not let it hide!

A hug or a kiss is all that I need

ThenI no that at anything I will suceed.

If only this feeling so warm kept inside

I could share with those shut outside.

To brake down those horors we chose to ignore

That are the curse of the hungry and poor.

A pair of glases tinted in rose

Wil not protect you from any of those.

I am hapy, I'm glad, I'm fulfiled in a way

That many won't feel till the end of their days.

I have famly, I have frends to many to count

Showing feelings I never have cause to doubt.

Those rose tinted glases I chose to discard

And trust in a future mitily stared.

 

 

Chic womankind (and mankind)

Mirror, mirror on the wall, who is the fairest of them all?

We all are! Everyone has the potential to be attractive and well dressed. I don't mean expensively dressed just well dressed.

Being disabled and using a wheelchair means I prefer to wear trousers, jeans, slacks, cropped trousers, as long as they are comfortable. I wear tunics, tops, t-shirts and sometimes a blouse.One requirement is that they have sleeves these days. I do have skirts and a dress but frankly I prefer trousers when I am in the chair as they are much more practical. I have seen some very unfortunate sights of women wearing skirts or dresses sitting in a wheelchair and it was not a pretty sight either! Skirts too short and showing, what my grandmother called 'next week's washing'! Oh dear!!

Being disabled doesn't mean you have to look scruffy, badly dressed and not care about your appearance. That is what non disabled people think we are like. A little while ago two friends spoke of their encounters with people who had definite ideas on what we should wear. One met an acquaintance who said, 'Oh, you look nice!' In a surprised voice. To which my friend replied, 'don't I usually then?' Exactly. This is a person who takes pride in her appearance, visits the hairdresser regularly and dresses well; not expensively but well (there is a difference). The other friend was affronted when a 'well meaning acquaintance said my friend should wear tracksuits rather than what she was wearing, 'as it would be better for people helping you dress!' The last thing my friend would wear is a tracksuit! How dare people say such things, but they do.

It is the season of parties and celebrating and as much as anyone I will dress to impress! Sparkles, spangles, shiny stuff, silver earrings, silver bangles, sparkly rings - you name it I will do it. And all cheap too! I am not going to break the bank with diamonds and other expensive gems but will sparkle, ta dah!

As I will be encountering my fashion conscious two and a half year old granddaughter over Christmas I will HAVE to wear sparkles or get told off, yes I am nagged by a mini fashion designer. But I am happy to wear sparkles, even sparkly nail varnish.

So, why do people have the idea that disabled people can't wear anything à la mode? Perhaps they think we would get too much above ourselves if we dared look like everyone else, or dressing down kept us in our place, perhaps they think we can't 'carry it off' like a non disabled person? Perhaps all these reasons.

At the Christmas party for the Stroke Association Aphasia Group I looked around and everyone was beautifully turned out, especially the ladies. Sparkles, Christmas earrings, party hats, smart trousers mostly but a few dresses, makeup, hair coiffed, everyone was determined to look their best. And why not? Perhaps we are disabled and our speech is dubious but we like to have fun. Eating, drinking, pulling crackers, playing pass the parcel, doing a quiz and singing Carols; wonderful. A scene no different to that at any club, group or office party. I always dressed up for my office party so I am not going to stop now!

I am not offended when someone says to me, 'I do like your scarf, where did you get it?' Because they appreciate my taste. It is those who say with an air of amazement, 'that is a lovely scarf YOU are wearing.' I  just say, 'yes I chose it because I like it.'

I wore an unusual poppy leading up to  Remembrance Sunday, it was knitted by a member of the Trefoil Guild. Everyone who saw it commented on it and asked where I got it, I swear I could have sold nearly a hundred of them! It was a talking point and got me conversing as well as I could with people.I have had various conversations over the years with people about clothes and accessories and, whilst many have been favourable to my tastes, some have looked at me aghast when I say what I think of an item. Sometimes even the comment of 'YOU would wear THAT' has been heard, adding, 'you are in a wheelchair.' Umm, yes, this is a wheelchair, ten out of ten for observation!

 I have noticed that the men at the group also looked well turned out, whether that is them or their wives/partners doing I am not sure but it is encouraging to see them taking pride in themselves. Being disabled doesn't mean loosing your tastes, ability to chose for yourself or mean you should look like a scarecrow. I visit the hairdresser regularly and she will tell you I have the ability to tell her what I want done. I have my eyebrows, lip and chin waxed as those wispy hairs get on my nerves. I shave my legs - yes OK so I wear trousers, but I know that my legs are hairy! I don't wear makeup as it aggravates my eczema and I have Sjogrens Syndrome which causes very dry eyes. But I am clean and I make sure my hair is washed and tidy so I am not worried over that.

Becoming disabled does seem to be accompanied by depression and one of the signs of that is when a person stops taking a pride in their appearance, I know this from experience. It is so easy to not bother washing your hair, changing your clothes, washing clothes and pressing them. It becomes a downward spiral. So when a disabled person does take pride in themselves it shouldn't go unnoticed but done in a sensitive way. Instead of telling them what they should wear, compliment them on the colour chosen, the style, the cut, the fabric. I was told how lovely a tunic I bought looked because the collar draped beautifully. I was told the colour complimented my colouring, how nice the fabric looked. That is what I like to hear, not the amazement that I would choose such a thing!

Yes, like a lot of people I have made big errors of judgement in certain purchases but on the whole I chose what I like for me, not anyone else. After all I am not asking them to wear it!

The late, great Joyce Grenfell in one of her monologues said of clothes, 'They look quite promising in the shop, and not entirely without hope when I get them back into my wardrobe. But then, when I put them on they tend to deteriorate with a very strange rapidity and one feels sorry for them'. I daresay many of us can empathise with that feeling.

So, this season, or any season dress to impress - not anyone else but yourself. Disabled or not, “Clothes make the man. Naked people have little or no influence on society.” said Mark Twain.


And Karl Lagerfeld said, “Never use the word “cheap”. Today everybody can look chic in inexpensive clothes (the rich buy them too). There is good clothing design on every level today. You can be the chicest thing in the world in a T-shirt and jeans — it’s up to you.”

 

Chic womankind

Minis, maxis, on the knee

Cropped pants, shorts, slacks, jeans

T-shirts, vests, blouses, tunics

Jumpers, cardies, shrugs, hoodies

Shoes, boots, sandals, crocks

Bare legs, stockings, tights, socks

Raincoats, overcoats, duffles, parkas,

Fleeces, shawls, capes, cagoules

Hats, caps, berets, snoods

Earrings, necklaces, brooches, pins

Rings, bracelets, cuffs, bangles

Handbags, satchels, rucksacks, purses

Holdalls, shoppers, clutches, carriers

Wheelchairs, crutches, sticks, scooters

Looking good, looking smart

Proud of the reflection in the mirror

Brush your hair, put on the lippy

Slick on the mascara, paint your nails

Spray on the perfume, face the world.

From the small voice of Aphasia to the roar of confidence

Since my last stroke in August I have learnt a lot about myself.

I started thinking 'WHY'. Why should it happen and mostly, why should it happen to me?

Well, one look around the ward at other people, some worse some better than me, I thought , 'WHY NOT ME'. Why should I be exceptional? I'm no different to others. Some were critically ill, some couldn't speak at all, some were confused, some seemed fine in many ways, but we had all become Stroke Survivors.

I had problems that irritated me, my right side was most uncooperative, my speech was annoyingly basic at most but I was able to read (not able to remember what I read but read!) I could write basic things, numbers are still a sore point but compared to others I was doing good.

I decided then, with the help of my speech therapist to start writing again. I have written for years, articles, stories, poems, blogs and I enjoy it. In writing I could use a part of my brain that held artistic memories so hopefully it would work so I gave it a shot.

My blog began. I felt that my stroke was meant to be a way I could make a contribution in helping other people and the way I could do that was by writing down my experiences with Aphasia. Then I started writing poetry again and that seemed a way to express my feelings, experiences and the attitudes I find toward it.

Aphasia is a hidden condition, hardly anyone has heard of it let alone understand what it is. Add to that the fact they believe if you have no language you are lacking in intellect Aphasia becomes isolating. Here frustration, anger and depression come into the mix. Aphasia is something Aphasics say they hate and it is easy to see why.

I have tried to see it from another angle. I don't HATE Aphasia, I am saddened by it. I am saddened that so many people are isolated due to Global Aphasia, they have no speech, no reading ability, no writing ability or no understanding of spoken or written language. I feel very lucky that I have my written and reading abilities even if they are affected slightly. I feel saddened that people don't understand why people are affected in such a way, why people are rude, abusive and intolerant of people with speech problems; remembering that non of this is any fault of those affected.

If I didn't have Aphasia I couldn't begin to write about it, begin to educate people, begin to help people come out of isolation and find a place in society. Since joining the Stroke Association Aphasia Group I have met some wonderful people who, like me, have communication problems. There no one is abusive, rude, intolerant. They have patience, they have understanding, they help and support. Because, they KNOW what it is like to have exactly the same condition, we can truly say 'I KNOW how you feel.'

I really feel that my stroke and Aphasia has been a call for me to make people aware of the challenges faced daily by Aphasics. I can tell non Aphasics:

1. Make sure you have the Aphasic's attention before starting to communicate. 
2. During the conversation, minimise or eliminate background noise (such as television, radio, other people) as much as possible.
3. Keep communication simple but adult. Simplify your own sentences and slow your speech. You don't need to speak louder than normal but emphasise key words. Don't talk down to the person with Aphasia.
4. Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
5. Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with Aphasia except when necessary and ask permission before doing so.
6. Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
7. Involved Aphasics in decision making and value their input.
8. Encourage them to be as independent as possible. Avoid being overprotective.
9. Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with Aphasia from family or friends or ignore them in a group conversation.  

•  I would also say to Aphasics, accept help. Don't be stubborn or try and be too independent, swallow your pride and you will find that help makes things easier and more fun!

 My husband cuts up my food for me even when in a restaurant, other people don't care and neither do we. It makes it easier for me to eat and I can relax and enjoy the meal and company. I even take my own cutlery, plate guard and a tabbard to wear to keep my clothes clean! Why make life more difficult, when just accepting that little bit of help makes it easier?  
 

 Pride don’t take a fall

Why make life so difficult

When it could be such fun ?

Why try to do the hardest things

When solutions are at hand ?

Why try to be independent

When help is all around ?

Why climb the steep slope of hardship

When the lift will get there there quicker ?

We all like to be in charge

To be the one who does it all

Times come when life goes wrong

Then is the time to accept some help

Don't be proud just ask around

Many will come to your call

Why struggle and fret when there is no need

When another will help to ease the stress

Pride will come before a fall

A saying well versed

But proven to be true

Don't take that fall

Just because

Your pride

Is too strong to lose.

Now I am not so worried about speaking perfectly just as long as I can communicate. I use words, gestures, facial and body expressions and they seem to get me through; along with the support and love of family and friends. Aphasia has taught me so much. I was impatient, I wanted perfection, I wanted to be independent; you notice I want all the way through?

Now I accept patience (nearly always!), I accept imperfection (doing the best I can), I accept I cannot be independent; you notice I accept? 

 

From the small voice of Aphasia to the roar of confidence

I want independence

I want perfection

I want acceptance

I cannot wait

How often I have said these words

I had my own agenda then

I wanted to be like everyone else

I wanted to be first in everything

I was full of my own self importance

I wasn't caring of my fellow man

Life changed

Abilities stolen

Isolation reigned

Future doubtful

Stroke takes no prisoners it strikes unbidden

It takes away that independence and ability

Pushed into isolation for fear of ridicule

What can be left for me now in this world ?

Life changes but still there is ability

Independence is achievable if help is accepted

Ignorance and intolerance are bigger disabilities

Once the door of isolation is opened, explore the world

The first step is small but leads to great leaps

The hand of friendship is forever open

The small voice of Aphasia turns into a roar of confidence

The hearts of survivors are full of love and tolerance

Life changes, but take that small step and make it a giant leap!

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.

Include, don't exclude.

I spoke about the visit I had from the Neurological physiotherapist who sided with my husband to use the dreaded PACE word.

Well since Thursday which was a bit busy, to say the least, I have rested and been very good. I have only been to the bathroom and back otherwise I have lazed about like lady muck!!!

It isn't all down to the stroke though as I woke the other night in pain and found the herniated disc in my upper back was hurting and the pain had travelled down my left arm to my hand.

This is not good news for two reasons. I is extremely uncomfortable and painful to move and as I cannot lie down in the proper position to wear my CPAP mask I cannot use the CPAP machine at night. The machine is what keeps me breathing so this is very scary.

I hardly get any sleep so I doze on and off all day. I take strong painkillers to try and hit the pain but they make me dozy and then as they wear off the pain comes back and wakes me up. A truly vicious circle.

Still I am able to get some things done whilst waiting for painkillers to kick in. I decide on meals and tell my husband what I want doing for food and he is great at cooking so he follows my instructions with no problem. I didn't sleep at all well last night and grabbed a few hours here and there only to wake up at 11am! Luckily I had told him that I wanted a roast chicken dinner so he had all the ingredients. He did it in the slow cooker and after browning the chicken and potatoes in the oven it was delicious. Although I am not actually cooking I am still able to have input into what we eat.

I am reading too as I am finding using the computer painful so only do so for short periods of time. Books are heavy to hold so I am using my Kindle a lot. I am not sure if I am making progress on the reading side. I was finding that every page was like a new book and I couldn't remember what had occurred before in a book. Once or twice I have had a tug at a memory but it flits away very quickly.

I haven't been back to church yet although our Minister visited me in hospital and told me to PACE myself, I believe everyone is in on this act! Today a church member came to visit me at home and she used that P word as well! Really. She brought us up to date with church news and gossip. There are some things I am so looking forward to being involved with but I can only do them if I behave! Well I have been good and I realise it is for my own good. As I can't do much else at the moment I don't have any choice but still I can see the sense in it.

My one big worry was that be good and PACING meant I would have no involvement in running our home. But that isn't true I am involved because my husband wants me to be. I still have decisions to make and I tell him how I want things done. We have been a team and that is still how things are. I am not feeling resentful as he listens to me and discusses what we do.

When you have Aphasia there is the problem that you could get left out. I am very fortunate that my husband makes sure I am NOT left out he ensures I am included. I understand what he says and I know what I want it is just difficult to get that across at times.

I truly feel I am treated like anyone else and that is all anyone wants. Our Minister talks to me like anyone else and so did our visitor today. She saw the book I have about Aphasia and said the Minister had said to the congregation that this is what I have but like some others she didn't know what it is. I showed her the page that explains it and she was interested and asked about the therapy that will help me. That is the sort of people I want and need around me.

She also prayed with us which was lovely as I am missing the visits from the hospital chaplains who came often to chat and twice a week to give communion.

What a difference it makes to your faith in others when you are treated as anyone else, a normal individual who can think and make decisions. I have three things I am wanting to do now and I have contacted people to make them aware of the situation and told them I want to be included and treated as everyone else. They have ensured me they will and I trust them to do so.

Include don't exclude a motto that we should use for anyone and everyone. They may be a little different but they are all people with feelings a lot to offer.

Coward that I am

I have mentioned that I use an electric wheelchair to get around the town and on occasions that we have to walk any distance. It is more practical, most comfortable than my manual chair and gives me more independence.

It is quite large and I can position it with buttons to recline and lift the foot rests so I can almost lay flat, very comfy indeed! I love it so much I have called her Wanda. Because she wanders all over the place with me. We enjoy walks along the seafront of our town. I take her to the theatre where they have designated disabled places for wheelchairs, the lady there says every time I go that it is a big chair. Yes, I say but the same size as the last time I came!

My husband brought her into the hospital for me to sit in as I cannot sit in the low armchairs they provide there. She was fine, we got around the hospital no problem then the left foot rest broke. I had put the foot rests up and locked them in place whilst I sat by the window as the nurses changed and made my bed. Then I had to move so put the foot rests down and when I raised them again the left one was locked.

My husband looked at the chair when he visited and some small bits of plastic fell out of the locking plate. Oh dear, I was rather upset as I rely on Wanda, a lot. But we managed to get by until I got home and then we had to source a wheelchair repair centre.

We know Wanda is an Invacare Tiger so my husband called Invacare in Wales and they told him there is a stockist near us and gave him the telephone number. He called them and they told him to bring Wanda along.

This is where I suddenly became a coward.

I couldn't go with him. I wanted to go, I wanted to tell them what had happened, but I couldn't. I was overcome with sheer panic. I knew if I went I wouldn't be able to talk at all. If I got any words out they would be intelligable and then it would get so much worse. So I stayed at home and off he went with Wanda.

The man was great he said, he took photos of the chair and of the part concerned. He made notes and would contact Invacare himself to find the part needed. He didn't want to take it apart in case it was factory made in a whole piece, he wanted to check first. So Wanda is back under her cover and chained up with the mobility scooters here at the retirement appartment block.

I felt rather stupid not going but I was in such a state over it. My husband didn't force me and won't he is leaving me to make the decision. And when our daughter rang she didn't say I should have gone, she said it will take time and you will do it. I am not sure what is best really. Them being so kind about it or should they have said it would be alright there is nothing to worry about.

Time, they say, is a great healer. But how much time? Will I suddenly wake up and think, I want to go out today? Or will I have to force myself? Who knows?

Then this afternoon I fell asleep. I think I slept almost two hours. When I woke my husband was there and he started asking me questions but I couldn't answer. It wasn't that I didn't want to I just couldn't; very weird feeling. After about half an hour I could get out one or two words but they didn't seem very clear, a while later when our daughter rang it seemed easier but still a challenge to say what I wanted.

I read in my information on Aphasia that some people have days when they can talk all day then another day cannot say a word. I hope it won't be like that but if it is then I shall just have to learn to live with it.

I am often thinking about what I used to do and what I wanted to do. Much of it is involved with talking, reading and writing. But now things are different I will have to change my goals. For a long time I was a Girl Guide (Girl Scout) Leader which I loved. I enjoyed all aspects of it, especially camping, hiking, camp fires and everything associated with it. After living in France for 10 years and now back in the UK I wanted to become involved again but this time in the Trefoil Guild.

I had met up with the ladies for a visit to the Lifeboat station and for a meal in July and found them a wonderful group of people. I was looking forward to the new term in September and had found out where to get my uniform etc.

How would they react to me now? I decided to email the leader of the group and she was very encouraging. I sent her a copy of the first of these blogs and she has passed it to the others. I didn't want to have to explain what had happened and what Aphasia meant on the first evening. I prefer that people know in advance then I can answer questions as they arise. It is reassuring that I can still be a part of something that was important to me for so long.

I read today a quote that I think is very apt.

You can't start the next chapter of your life
If you keep re-reading the last one.

I think that is important to remember. I had a busy and active life. Work, home, family, drama clubs, choirs, swimming, aqua-aerobics, travel, Guiding, camping and so much more. But if I cling to all that I won't be able to go forward. I think with my disability I have done that to some extent and became stuck. Now I have another problem and I must find a way to work with it not against it. I will still travel, I will be involved in Guiding again, I could still swim and do aqua-aerobics as the swimming pool near us has swimming for the disabled. I have a wonderful church family who are understanding and accepting as well as family and friends.

I need to show those that support me that I can move on to the next chapter and be as happy there as I was before.

I was a coward today but perhaps I can be less of a coward tomorrow or the day after. Life is not easy and no one said it has to be, it is what you do with the hand dealt you.