New year, new challenges the hardest resolutions

I appreciate I have been absent from the blog for a while, this due to nasty little winter bugs that chose to attack me.

Leading up to Christmas sinusitis, chest infection, colds, minor mouth surgery and a stomach problem have been wearing me down. Luckily I had two days reprieve, Christmas Eve and Christmas Day, when I could enjoy myself. Christmas Eve spent with friends that we have known for many years and Christmas Day with our daughter, son in law and grandchildren.

With the New Year approaching I am asked, what resolutions will you make? I always answer honestly - I don't make them. I have seen people start the New Year by planning to take up exercise, start a diet or give up smoking, invariably they never succeed and two weeks later they have failed.

My idea of change is not stopping something but starting something. My logic is that cutting or throwing out the 'bad' and bringing in the 'good' can never work when done suddenly. You have to run the two together, for instance if you never exercise and suddenly start exercising every day is doomed to failure but introducing exercise slowly as part of you daily routine will be better for your body and for success.

I have never undertaken a faddy diet, instead I have gently changed what I eat by introducing items into my regular diet or substituting one type of product for another. That way I avoid stomach upsets and other problems connected to a new way of eating. People who resolve to stop smoking usually find themselves buying cigarettes again two weeks after throwing away the last packet. Like those who resolve to stop drinking, the reason they fail is they go cold turkey. Cutting down and having a 'buddy' is more likely to succeed as the failure is the body reacting to the sudden stop of nicotine or alcohol. It is like weaning a baby away from milk and onto solids; it has to be done slowly and carefully.

When I want or need to make changes I do them when the need arises. Then I have no pressure to succeed unlike if I were to wait until the new year, nothing would ever happen and would doom to failure. Besides there is no time like the present to make changes if they are needed.

Therefore, I have no resolutions but I do have challenges which are on going from the work I have been doing since my stroke.

I have been working on my speech and using many aids to help. I have downloaded some apps onto my phone and tablet which I hope will help and inspire me. Many of these apps come via the ARC group on facebook. ARC, Aphasia Recovery Connection, is an American website to help Aphasics, not just in America but other places too. Members of the group post things they find useful and helpful to their recovery. I have a game I play which is a word game called 4 pics 1 word. You see four pictures with one word in common and that is the answer. Some are quite difficult. I have the whiteboard application which I haven't used except to show people. I you cannot make yourself understood verbally then the whiteboard means you can write the word, if you know it, or draw what you want, easily erased it is simple and effective. I have also downloaded onto my Kindle a workbook that my husband helps me with. He reads phrases or sayings and I have to fill in the relevant word. I know the words mainly but the pronunciation is the bigger problem there.

What I cannot improve on is my emotional state. If I cannot think of a word or make myself understood I burst into tears, if I lose something I know I had I cry it is like going into panic mode and nothing I do can stop it. If I want to tell my husband something he has to hold my hand to calm me. On occasions he does interrupt of finish my sentences when I am looking for a word and that upsets me. This week at the Aphasia group I go to we had a lady come to talk about homeopathy and how it helps with stroke. My husband had gone to the carers' meeting so I sat alone. I found the talk confusing and difficult to follow and he wasn't there to explain what was going on. The talk was long for me, I cope with short conversations with simple words but a talk like this isn't short or easy to follow. I panicked and started to cry and a volunteer came over to talk to me and calm me. I stopped crying but I was at a loss as to what the talk was about. I knew why I was crying then but sometimes I have no idea why I am doing it.

My husband tells me to calm down and breathe which helps. Other people say there is no problem with your speech we understand you, the problem there is they do not seem to appreciate the stress communicating puts you under. Yes, they may understand what I want to say but to get there is traumatic as searching for the RIGHT word is uppermost in my mind. At home I have lots of 'things' these are words that I cannot remember or find. My husband's job is to guess the 'thing' I mean and he is getting good at it. I can only describe it as the word accessible, there but just out of reach. I do not know the word of the thing I am writing this on for instance, there are many more and some people think it is funny that I don't know what they are. It isn't funny and when they laugh I cry.


This is my challenge to find these words and work on them and the pronunciation. This is not a resolution this is work in it's hardest form.

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.