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.




 

A lecture and a nasty word then fun and games in the park.

If there is one word I just cannot handle it is PACING. Yes that old chestnut that physiotherapist like to use.

I am unfortunately someone who wants to do it all. Once I have mastered getting to the bathroom with my husband and the wall for assistance I want to walk everywhere! Just one slight problem. It hurts, I can't get there without stopping a few times and I am knackered afterward.

So yesterday the Neurological physiotherapist came to visit me and assess how things were going. She was pleased when I did the little bits like bedroom to bathroom (just next door to each other) and sofa to kitchen which is just five or six steps. Then the lecture. I must do just little bits or I will get too tired and not make progress.She then ganged up on me with my husband to say I must PACE. It was no good me covering my ears they insist. So what must I do instead?

She is contacting the speech therapist to visit me and the occupational therapist. She herself is away and will contact me when she is back to see how it is going. In the meantime I can walk to the bathroom and back to the bedroom. I can walk to the next bedroom just a few steps away then use the wheelchair to get to the lounge. I can transfer from chair to sofa. I can get to the kitchen and use the perching stool if I want to prepare meals and if I am good I can stand for a very little while. I can stay up for short periods unless it is important to be up for longer, otherwise it is a wheelchair ride back to bed.

Bossy? Yes but sensible really as I am stilling feeling very tired.

My staying up was approved for today so I could spend time with our daughter and grandchildren. I told the physiotherapist I wanted to go out to lunch and to the park so she allowed me on the condition I rest for the next TWO days!

So we did go and meet up with our daughter and the twins who are two and a half. I didn't have to talk to anyone out and about except for my family and no one, not even the children, took any notice of my speech. It is amazing how children accept us as we are.

After some fun by the sea where the children went on a bouncy castle and a merry go round we walked to a pub/restaurant for lunch. The children found some amusements there too and ate a good lunch. We went to the town afterward and I needed to go into the bookshop. I was looking for a book I want for my birthday so my daughter and husband know which one it is. We couldn't see it on the shelf and I was saying the name of the author when one of the staff came to talk to us. Panic stations, I just wanted to go. My daughter said I could come in a look another time when the children were not there getting fussy standing around so I could escape.I felt silly afterward for getting panic stricken.

A walk to the park where the children fell asleep was lovely. Hardly anyone around so we could meander along the paths. Then they woke up and we went to the playground for a while. Where do they get their energy?

Back home we all had a drink and a biscuit before our daughter and grandchildren had to get their train home. Before they left I was so tired my husband helped me back to bed. No sooner had he left to walk to the station with them and I was asleep!

So tomorrow I must rest and to be honest I need to. I am still knackered and I have slept for an hour or more and only had sandwiches for supper. But the physiotherapist was right I need to build up my strength slowly and PACE. I won't be spending every day like today so I must allow for these things happening.

I thoroughly enjoyed seeing the little people enjoy themselves. They throw themselves into everything with gusto. I must NOT throw myself into things I must slow down. And dare I say it PACE myself. Seems I must learn to like that word if I am to get any better.

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.