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.
Showing posts with label different. Show all posts
Showing posts with label different. Show all posts
Sunday, 8 September 2013
Sunday, 1 September 2013
Aphasia and me
I wonder how many people know what Aphasia is. Before it happened to me I hadn't heard of the word but I can assure you when it happens it has a devastating affect on your life.
Essentially it affects language. The understanding, the speaking, the reading and the writing. It can also affect the use of numbers. Whilst not understood by many it affects around 250,000 people in the UK.
Not every aspect of language affects every sufferer nor in the same degree but it isn't easy to live with or accept.One of the causes of Aphasia is a stroke but it can also be caused by brain injury, infections and inflammation and brain tumors. However it is caused and the degree and aspect of it are all dealt with by a speech and language specialist. The ways they help are varied but it is invaluable to understand what has happened and how you can live with and manage the condition.
I have had two experiences of Aphasia, essentially the same, the way they were dealt with differed greatly. The first time was following two mini strokes close together a year ago and I received no help at the time. My husband helped me by making me repeat words over and over again. He started by bringing me a meal and saying 'meat, vegetables, potatoes', and when I could say that (albeit not clearly!) he started to say the type of meat or fish, the type of vegetables, the type of potatoes (mash, boiled, roast, chips etc). Then we went onto other things like fruit, clothes, flowers and much more. It was a long, tedious journey and although not conventional we had no other idea in how to do it. Not being speech and language therapists we did our best and by this summer I had almost regain normal speech. Then out of the blue I had another stroke, almost a year to the day of the first one last year.
I was sitting using my Kindle when my right hand wouldn't move. My husband happened to come into the room and I couldn't talk to him. He called an ambulance and I was taken to hospital where I was Thrombolysed. This is a clot busting drug treatment given within four and a half hours of a stroke.
I wasn't able to use my right side and as I am very right handed learning to do anything with my left hand was very difficult. I had physiotherapy and occupational therapy plus the speech therapy, quite grueling but effective.
Physiotherapy wasn't as effective as the rest as I have used a wheelchair for about 12 years and hadn't walked far for a long while which was difficult to explain to the physios under the circumstances. However, the occupational therapists were more accommodating.
I regained the strength in my right side slowly and each little improvement was an excuse to celebrate! My speech became a little better but I still found it difficult to find words and when I got frustrated I would find my speech back to square one.
The Aphasia had affected my speech and to some extent my reading. I love to read and to write so losing even some of that was a blow. I found every page was like a new book as I couldn't remember what had happened before. Sadly I knew something had gone before but had no idea what it was. When I wrote I searched for a long time for certain words. My brain was going so fast it was like trying to snatch at clouds, not able to grasp them. In my head was everything I wanted by across the middle of my face was a barrier that opened slightly then crashed shut. It is still there but opening a little more each day. When I am tired or frustrated it slams shut again and I am rather despondent. Whilst some words are elusive others are quite easy to find and those are ones that I feel wouldn't come to mind in a million years! My speech therapist said this is because I read and write a lot so my brain works in a way that finds these words. Strangely in speaking little joining words such as and, the etc won't come out all the time. I stutter over words that are similar and have to try and slow down my brain which goes at such a rate I am exhausted.
Speech Aphasia has several degrees and mine is not too bad. Some people I met in hospital have little or no speech at all. Others can't read or write, whilst some have no understanding of what people are saying to them. At first I understood at a basic level but it improved, for others, sadly, this won't happen. One lady could say only yes and no, but when the speech therapist encouraged her to sing she could make many sounds and she became brighter and happier. I can understand but have difficulty when in a noisy environment or in a group. On a one to one basis I manage quite well but if I get two people talking to me at the same time I just cannot cope. I need people to talk slowly and not use long or complicated words and I am better when not tired or anxious.
My speech therapist made me a card which pointed out I have had a stroke and have Aphasia then lists what people should do to help me communicate with them.
Talk to me, I can understand you
Don't talk to me like a child
Give me time to respond to you. I need a few seconds to gather my thoughts.
Don't interrupt me or finish my sentences.
Another thing I have found is that my emotions are very much on the surface and at times I am irrational. I don't know why but it is upsetting for me as well as another person.
Aphasia causes many feelings. Isolation, frustration, anxiety, anger, lack of confidence, depression, uncertainty, embarrassment, a different way of life and guilt. It can also mean relationship issues, unemployment and boredom. To live with Aphasia means a whole new way of life as communication is very much the basis of life. Work, leisure, relationships all rely on communication and it means learning to live again in a different way. Getting the right sort of help will make this easier but it will take time. I am not a very patient person which isn't helpful! My husband says pacing isn't in my vocabulary, which I agree with. But this needs my patience and so I will have to give in and be good.
I will admit I find this scary. I have had 12 years to get used to being out and about in a wheelchair and have endured the 'does she take sugar' episodes. Now I have a wheelchair and Aphasia and how will people treat me then? I can't lock myself away so I shall have to face it, and I know my husband will help. I want to get back to my leisure activities and meet people who I know. Those people I am sure will not treat me any differently than before but it is meeting people for the first time that scares me.
I am at home and I WILL get better. Not everyone recovers at the same rate and some will never recover completely. I may not be able to communicate in the same way ever again but I have to accept Aphasia is there and find a way of coping and living with it. Some days I can talk, not clearly but talk, other days nothing happens so I will have to take each day as it comes.
I read that getting better means different things to different people.
Feeling more relaxed and calm (not so angry)
Doing more and finding a purpose
Learning to talk and/or read better
Getting involved in something you enjoy
Looking forward to family events
Helping others
Meet new friends
Try new things
Laughing more
Making plans
It also says DON'T compare yourself to others as everyone is different and it won't help. Also sometimes talking doesn't change much but life still gets much better. What more could I ask but a better life, different but better.
Essentially it affects language. The understanding, the speaking, the reading and the writing. It can also affect the use of numbers. Whilst not understood by many it affects around 250,000 people in the UK.
Not every aspect of language affects every sufferer nor in the same degree but it isn't easy to live with or accept.One of the causes of Aphasia is a stroke but it can also be caused by brain injury, infections and inflammation and brain tumors. However it is caused and the degree and aspect of it are all dealt with by a speech and language specialist. The ways they help are varied but it is invaluable to understand what has happened and how you can live with and manage the condition.
I have had two experiences of Aphasia, essentially the same, the way they were dealt with differed greatly. The first time was following two mini strokes close together a year ago and I received no help at the time. My husband helped me by making me repeat words over and over again. He started by bringing me a meal and saying 'meat, vegetables, potatoes', and when I could say that (albeit not clearly!) he started to say the type of meat or fish, the type of vegetables, the type of potatoes (mash, boiled, roast, chips etc). Then we went onto other things like fruit, clothes, flowers and much more. It was a long, tedious journey and although not conventional we had no other idea in how to do it. Not being speech and language therapists we did our best and by this summer I had almost regain normal speech. Then out of the blue I had another stroke, almost a year to the day of the first one last year.
I was sitting using my Kindle when my right hand wouldn't move. My husband happened to come into the room and I couldn't talk to him. He called an ambulance and I was taken to hospital where I was Thrombolysed. This is a clot busting drug treatment given within four and a half hours of a stroke.
I wasn't able to use my right side and as I am very right handed learning to do anything with my left hand was very difficult. I had physiotherapy and occupational therapy plus the speech therapy, quite grueling but effective.
Physiotherapy wasn't as effective as the rest as I have used a wheelchair for about 12 years and hadn't walked far for a long while which was difficult to explain to the physios under the circumstances. However, the occupational therapists were more accommodating.
I regained the strength in my right side slowly and each little improvement was an excuse to celebrate! My speech became a little better but I still found it difficult to find words and when I got frustrated I would find my speech back to square one.
The Aphasia had affected my speech and to some extent my reading. I love to read and to write so losing even some of that was a blow. I found every page was like a new book as I couldn't remember what had happened before. Sadly I knew something had gone before but had no idea what it was. When I wrote I searched for a long time for certain words. My brain was going so fast it was like trying to snatch at clouds, not able to grasp them. In my head was everything I wanted by across the middle of my face was a barrier that opened slightly then crashed shut. It is still there but opening a little more each day. When I am tired or frustrated it slams shut again and I am rather despondent. Whilst some words are elusive others are quite easy to find and those are ones that I feel wouldn't come to mind in a million years! My speech therapist said this is because I read and write a lot so my brain works in a way that finds these words. Strangely in speaking little joining words such as and, the etc won't come out all the time. I stutter over words that are similar and have to try and slow down my brain which goes at such a rate I am exhausted.
Speech Aphasia has several degrees and mine is not too bad. Some people I met in hospital have little or no speech at all. Others can't read or write, whilst some have no understanding of what people are saying to them. At first I understood at a basic level but it improved, for others, sadly, this won't happen. One lady could say only yes and no, but when the speech therapist encouraged her to sing she could make many sounds and she became brighter and happier. I can understand but have difficulty when in a noisy environment or in a group. On a one to one basis I manage quite well but if I get two people talking to me at the same time I just cannot cope. I need people to talk slowly and not use long or complicated words and I am better when not tired or anxious.
My speech therapist made me a card which pointed out I have had a stroke and have Aphasia then lists what people should do to help me communicate with them.
Talk to me, I can understand you
Don't talk to me like a child
Give me time to respond to you. I need a few seconds to gather my thoughts.
Don't interrupt me or finish my sentences.
Another thing I have found is that my emotions are very much on the surface and at times I am irrational. I don't know why but it is upsetting for me as well as another person.
Aphasia causes many feelings. Isolation, frustration, anxiety, anger, lack of confidence, depression, uncertainty, embarrassment, a different way of life and guilt. It can also mean relationship issues, unemployment and boredom. To live with Aphasia means a whole new way of life as communication is very much the basis of life. Work, leisure, relationships all rely on communication and it means learning to live again in a different way. Getting the right sort of help will make this easier but it will take time. I am not a very patient person which isn't helpful! My husband says pacing isn't in my vocabulary, which I agree with. But this needs my patience and so I will have to give in and be good.
I will admit I find this scary. I have had 12 years to get used to being out and about in a wheelchair and have endured the 'does she take sugar' episodes. Now I have a wheelchair and Aphasia and how will people treat me then? I can't lock myself away so I shall have to face it, and I know my husband will help. I want to get back to my leisure activities and meet people who I know. Those people I am sure will not treat me any differently than before but it is meeting people for the first time that scares me.
I am at home and I WILL get better. Not everyone recovers at the same rate and some will never recover completely. I may not be able to communicate in the same way ever again but I have to accept Aphasia is there and find a way of coping and living with it. Some days I can talk, not clearly but talk, other days nothing happens so I will have to take each day as it comes.
I read that getting better means different things to different people.
Feeling more relaxed and calm (not so angry)
Doing more and finding a purpose
Learning to talk and/or read better
Getting involved in something you enjoy
Looking forward to family events
Helping others
Meet new friends
Try new things
Laughing more
Making plans
It also says DON'T compare yourself to others as everyone is different and it won't help. Also sometimes talking doesn't change much but life still gets much better. What more could I ask but a better life, different but better.
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