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.