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.

My Mr motivator

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

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

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

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

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

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

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

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

Even if I can't

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A lovesong for my beloved

Long ago we made a vow

Something I remember, even now

To love and honour each other we said

I do not regret saying it as we wed

I love you now as much as ever

And honour you here with every letter

As we became one till the end of time.

Deep in my heart my love is strong

And spills out in joy as a love song

Passion, desire, caress and urge

Wrapped up in every single word

This outpouring of thoughts of you

Are words I promise are forever true

And will be the same till the end of time.

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.