The best that I can be excerpt

I will show 2 chapters at a time ie, 1.1-2.2-3.3-4.4-5 etc.

CHAPTER 5

I gave power of attorney to Claudia and a good friend as I still had my hairdressing salon to take care of, even if it was up for sale. Claudia had discovered that I had sent an erotic text in my former life to another girl I was friends with. I had forgotten about it, but I do remember it was quite sexual and explicit. To me it did not mean anything I was just playing, but to Claudia, I had broken her trust. I had wandered out of our relationship and that had made her very upset and angry. The text had stayed on the mobile phone which she now had. I tried to lie my way out of it, but that just made matters worse and Claudia could see I was lying. Just why I had done it, I don’t really know. I guess it was just because I could that I did. I was in the UK getting bored. I was very happy to say the least with Claudia. Why then did I risk my life with her? I suppose, I was just lonely. I had been living in a caravan for some time until my flat became vacant, as I had been letting it out just before my strokes. I suppose loneliness played a big part along with vulnerability. Oh, if I could turn the clock back, but I couldn’t could I. I had just got carried away.

The last thing I wanted was for Claudia to go away from me. Thanks to me and what I did, she regularly went to a psychotherapist when back in Rome, to deal with that problem initially, then later, I guess, she just needed someone to open up to. I was faithful to her, but that wasn’t the point. As I said I had broken her trust. Claudia quizzed me many times over the subject asking me why I did it, how often I did it, what was wrong with her. I only had the E-Trans frame then, so my answers were very short and simple. I was very upset. Not for the fact that she had discovered my error, but for upsetting her. There is no way she deserved it. I had been very stupid and paid the penalty. I didn’t like that she had discovered a bad side of me. I felt very guilty and hated myself for a long time to come. I wanted to die. She asked me to open up and tell her everything as that is what real partners do. By then it was summer 2004 and it was the most uncomfortable time in my life. I love Claudia so much. The guilty feeling wasn’t going to ever go away and it didn’t. Even now some three years on it still makes me feel sick thinking that I nearly lost someone that is so, so special. I was to suffer for it later on also. How much I had upset her or how deep the hurt went, I don’t know. I only know I had offended her deeply.

I was regularly visited by friends, most days I suppose. When Claudia was over she would come normally just before lunch and stay until eight or nine o’clock. Derry, who was technically my dog, was brought to see me by Rachel, one of my friends and former work colleagues. Some months before my strokes, because I was constantly going over to Rome and due to my future plans, I asked Rachel if she would give him a home. She readily agreed because she had looked after him on many occasions before. You could always count on her to do anything, and she was quite handy as a hairdresser also. I quite often jumped when Derry woofed, and although it was amusing to everybody else, it was hiding a problem that would manifest itself in the not too distant future. I wasn’t really aware that I jumped so easily.

I had expressed my wish to go to Rome, but just how practical that was, was left in the hands of my key worker, my social worker and of course Claudia. Italy didn’t have a National Health Service or a Social Service, so I wouldn’t receive any benefits and life would be hard. Being here was hard. I didn’t have Claudia or Giona around me. I couldn’t watch him grow up.

I saw a psychotherapist who I was able to open up to. I told him of my fears of losing Claudia. He assured me that she said she would always support me. I told him of my guilt, he assured me more and told me that feeling guilty was only natural.

My speech therapist changed to a young girl. I liked her attitude very much. I still kept my key worker though. It was calculated from my body weight that I needed to drink at least two litres of fluid per day. I guess the calculation was done by taking my height and weight into consideration. I found it difficult to suddenly start drinking that much as I wasn’t used to it, but I soon got used to it. Even so, I devised a scheme. A cup was 200 millilitres, so if I drunk three cups each mealtime that is 1,800 millilitres in total. I could easily drink a cup or two throughout the day. I had one cup before my meal and two cups after. I was only allowed cold drinks. If I missed a drink, I was topped up as necessary through my PEG. I had to have my drinks thickened and drunk through a spouted beaker – two spoons of thickener to each 200 millilitre cup.

All my food and drink, so they knew what I had to eat and drink, had to be recorded on a chart. The nurses forgot on occasions, but I knew what I had had. I quite often reminded them to write it down. As I could only use my front teeth and my swallow wasn’t very strong, I was tested on food regularly. It was agreed by the speech therapists that I was ready for a puree diet, standard food but highly liquidised, and for a dessert I had mostly ice cream. I was fed by a nurse or by my mother, who came twice a week, or by Claudia when she was there. At first I could only eat lying down so I went back to bed for all my meals.

I longed for conventional food and quite often drooled when Claudia or Jacob ate in front of me. I got lucky one day. Jacob was eating some chocolate buttons, and I looked longingly at them, then at Jacob, then back to the buttons. Jacob gave me about five, and I was able to bite them using my front teeth.

I was very concerned about my weight. I wasn’t big, but I noticed I was putting on weight and, me being me, I decided just to have one pudding a day. Because I was eating and drinking so well I had my PEG taken out. I patiently waited a long time for the operation. I was originally told 10.30 am, but I was kept waiting until 12.30 pm. I was wheeled in to see the anaesthetist, who asked me my name and a couple of other questions, I was able to nod yes and then I don’t remember any more. I was not allowed any food 12 hours before the operation and 12 hours after. Before was no problem, but after meant I missed dinner and tea. As a result, I had a bowl of ready-oats at 2.00 am the following morning.

Weighing was neat and you were weighed once a week. Before, I was put on the bed and a stretcher-like object was put underneath you. It had bars which could slide in and out of the stretcher sheet. Once on the stretcher and with the bars in position you were then attached to a weighing hoist and lifted just clear of the bed. Now, though, they had scales you could actually drive onto in your wheelchair. The weight of your empty wheelchair was taken first, like at night when you were in bed, and when you drove onto the scales the weight of the wheelchair was taken off to get your weight.

I had two friends that mostly came to see me twice a week. They supplied me with DVDs for my TV. Pirate copies mostly. I never really asked how they got them, I just kept quiet about it and was grateful that I could watch the latest cinema releases, even if the odd head of the watching audience appeared in the DVD occasionally. One of them brought his laptop and a computer game that we all played. They were like a well-known fat and thin comedy duo, with one constantly ridiculing the other. They bought me a DVD player between them.

I complained that I was seeing double; more so to the left. I was booked in for an eye test. From those results I went to a hospital actually in Plymouth, escorted by a nurse. I had various tests, and I also mentioned not only the double vision, but that everything up close was blurred too. I was given a prescription for reading glasses. They decided that for things further away I didn’t really need glasses and as for my double vision to the sides, it only really became a problem if I turned my head; it was not apparent when I looked straight ahead. I was advised to make sure I was always facing in the direction I was looking.

It was a nice day when the local optician who had been recommended came; one of those rare, hot English summer days. We all sat outside in the shade. I say all, because Claudia was over. I tried on various frames until I settled on a blue frame. I also asked about, and eventually had, lenses that went darker in the sun. I remember that I got reactive lenses predominately for sitting on the beach. I believed this condition was only going to be short-lived as no one had explained to me the consequences of my illness. That was about three or four months after my strokes.

Claudia quite often got me to try and straighten my legs, first one and then the other. I could lift the left leg a little way, but moving the right leg was hard, if I moved it at all. I liked just doing things for Claudia. I liked to make her happy. Then she would stretch both arms, the right being a lot more difficult than the left.

I had a T-roll or T-bar on loan from the physiotherapists, which I used at night or any time I was on the bed. Basically it’s a circular T shape that is padded and goes under your knees with the down part of the “T” sticking up between your knees to keep your legs apart. The idea is that the bit which goes under your knees helps counteract the spasming and breaks the pattern in your legs. I couldn’t bear not having the T-roll under my knees, it was very comfortable.

 

I was able to open my bowels every other day without any intervention now. I was taken straight to the toilet on the standaid which was lowered carefully so I was in the right position and then the nurses left me. I was still attached to the standaid, so I was quite safe. When I had finished, I pulled the call bell which was on a cord and placed within easy reach of my left hand, and then the nurses would come back. They raised me back up and cleaned my bum. It’s hard that you can’t do it yourself, a very personal thing that you have to let others do for you and you have to accept it. It’s humiliating. But it’s just the way things are now. The same as messing yourself, which I did on occasions and someone else having to clean you up. It’s degrading, but you just have to learn to accept it. It’s their job. I think the first word anyone understood was “sorry”.

Whenever Claudia was over, she regularly brought in Jacob to see me and would spend as much time with him as she could. When the weather was nice we went out the side of the building so Jacob could play football. She looked so funny, kicking the ball and jumping each time she went to kick it.

 

I only ate breakfast in bed. That was three drinks and a bowl of ready-oats. Because of my weak swallow I was only allowed ready-oats as they went smooth and soggy. One weekend morning I ordered and got two warm black coffees with two sugars. It was lovely, just what I fancied. But when I ordered it again the following morning I was told that it had to be approved and noted by the speech therapist, which it had not been. I found that anything slightly hot was too hot, and I just couldn’t eat it or drink it. On the Monday I was tested on the coffee and it was duly noted.

Monday mornings were funny. You had to be seen by the doctor on their weekly rounds by your bed or in it. It felt like military school, or something out of a “Carry on film”. The doctor would ask you if you were okay and discuss you and any problems you might have with his entourage. Blood pressure and pulse were taken weekly; my blood pressure was quite normal but my pulse was in about the high 70s to low 80s. It was my goal to have my pulse return to normal, which is high 60s to low 70s. Three years on I suppose its in the low 70s now, so it is getting there. I regularly had a urine test, to make sure my bladder was completely emptying. A specialist nurse would use a mobile scanner, similar to those used in pregnancy. My bladder would be scanned to see how much urine I had. She used some gel to make the connection between skin and machine, which was always cold, but I didn’t mind. Then I would have a wee in a bottle or at least I tried, it is difficult weeing on command. Then she would scan my bladder again to find out how much was still in there. After that it was a simple case of maths.

Because I had some movement in my left arm and I could grip with my left hand, albeit weakly, the OTs tried to get me to use a special spoon. It had a big handle, and to make it easier for me, it curved towards my mouth. I found it so difficult to angle the spoon towards my mouth and the spoon kept tilting, so if there was any food on it, it would fall off. It seemed an impossible task.

I don’t really know when it began, but one of the side effects of having my strokes, of which there were many, was I ground my teeth a lot. It was when I was very tired, it happened mainly in the morning. I couldn’t help it, it was automatic. The same as yawning, it was a side effect that I just couldn’t control. I wasn’t tired, but onlookers thought I was. I communicated to one and all that I wasn’t tired, but more often than not they forgot. How annoying. When I sneezed, boy did I sneeze. If I was on the standaid, or on the loo, my legs would shoot back. If I was eating I would spray my food over impossible distances. I would make such a mess.

My solicitor came to see me, who was also a good friend, and told me the good news. I had had critical illness cover on my mortgage and the lenders had paid out a lump sum and I didn’t have to pay my mortgage from the date of my strokes. I paid most of that “pay out” into my building society. I gave ten thousand to Claudia, which she only used as travel expenses and I kept some in my personal account, which could easily be drawn on if I needed it.

I had an offer for my business and the property. I was very happy, but it dragged on and dragged on and eventually fell through.

CHAPTER 6

“Conveens” went over your manhood. They are rolled on and they are like thick condoms with a hole and small tube in the end. They had a special adhesive on the inside which kept them on. They directed your urine via a tube into a leg bag that was strapped just below your knee that needed emptying through the day. The conveens regularly leaked, back flow they called it, or it came off altogether. I used these. Then I progressed on to bottles. They were cardboard and it was embarrassing really as a nurse had to “place” the bottle between your legs. I had an itchy groin which didn’t help matters when the bottle was placed as it made me giggle which would annoy Claudia if she was over, waiting outside the door. I had one placed between my tight legs when I went to bed. Because they were made of cardboard, they didn’t look much like bottles by the morning.

Weeing was a very urgent affair. When I needed to go, I needed to go immediately. I had lots of times of being wet, both in bed where I spent most of my time, and out in my wheelchair. I had little control over my bladder and the night staff would place a bottle just before I went to sleep in case I got caught short at night.

Then the main doctor, who was Asian, middle-aged and quite small in stature, told me I had a urine infection. I wasn’t passing all my urine and it was pooling in my bladder, which is not a good thing as it leads to infection. I was given a catheter so my bladder was continuously drained. I was lucky because when it came to the time of changing my catheter the nurses could not do it, which meant I was back on conveens. This was a good thing for the improvement of my bodily functions. I successfully showed that my bladder was draining fully. I didn’t need a catheter now. I am convinced that my body was shocked and rejected the second catheter.

The OTs made me a hand splint which I wore at night. It kept my right hand in an open position and it was fixed by some special material which acted as straps onto some strategically placed Velcro. The OTs quite often came in to the gym with the physiotherapists. I was in the gym one day when I pointed out to both of them that parts of my right fingers and the right side of my face were a little numb. I still had total feeling, but they were a little numb. I think they told me that it was to be expected.

The speech therapist tried me on a communication aid, which is a small portable keypad about six inches by twelve inches that says whatever you write into it. It displays it on one line, scrolling along if necessary. You can store on it, so you can prepare sentences. When I first got it I got it to store all sorts of swear words. It would amuse me hearing it swear; especially the word “Bastard!”. It was not designed for that. It sat on a folder and was placed on my lap each morning. They initially thought I would need one that scrolled through the alphabet that was on a stand and therefore not portable. I was tested on a portable one, and to everybody’s surprise, I more or less managed it. I would just need some sort of support for my left wrist to enable me to use it. That was a Friday. By the Monday I did not need the wrist support. I was able to use the communication aid un-aided.

The arm splint was getting very tatty and after me nagging a few times the physiotherapists ordered a new one. It was a proper one which was fastened with Velcro. I found it quite annoying, not that I didn’t like to wear it, but because nurses and therapists alike would try to put it on backwards. It only went on one way, on the inside of the arm, not on the outside as most people tried. I used the communication aid to convey that it went on the inside of the arm, but they still tried their hardest to put it on the outside. Many were the times I was left screaming because they didn’t understand how to put it on.

I found I could support my head more. I relied on the headrest less and less until I stopped using it completely, then I asked for it to be taken off. Due to the shortening of the neck muscles down the right side, I still couldn’t tilt my head to the left. I can now.

At night I used to go down to the front where they had a purpose built reception desk, on top of which was another piece of wood. This acted as a sort of barrier to visitors and gave privacy to the receptionists and somewhere for them to place things like their computer. I could just grab the lip of this, pulling myself forward to strengthen my left arm.

One day it was very hot outside so I said no to a top. I went outside to sit in the sun just in my shorts. When I had been out a while I was approached by the Asian doctor who told me off about being in the sun and that I should at least have some suntan lotion on. I raced back to my room to get my communication aid hotly pursued by the doctor. I told him I already had suntan lotion on. It’s okay for him, I thought, he is Asian and already has a tan!

Some friends bought me a mobile phone and I was able to keep in touch with people by texting. It was also placed on the folder next to the communication aid. This brought memories back for Claudia, but I am sure she could understand the advantage of having it. Friends texted me quite often, but I especially liked receiving a text from Claudia. It made me feel not so alone. Claudia was not good at sending texts. It is just how she is. Some days were harder than others for me to send texts. I just could not press the buttons right. You know, three times for a letter “C” , etc.

The only difference I really noticed in me, apart from what I have already mentioned, was the fact that I got very frustrated. This made me scream and cry. Not being able to speak and put my point across was, well, very frustrating. I got frustrated and screamed with anyone, even Claudia, if I wasn’t understood. I couldn’t help it; it’s just one of the side effects of having the stroke.

As I got used to the communication aid I used the board less and less until the communication aid completely replaced it. My wrist was getting much stronger, and because I was using the communication aid so well I ordered a laptop computer, which I was able to use with mainly one finger, on the left hand. I left the choice of laptop to my friend as he knew about that sort of thing. He ordered one of the latest laptops you could get, and it cost enough. The laptop was difficult for me to use. My left arm would tire and I would make lots of mistakes. The laptop was placed on a table and then the table was put in front of me.

The speech therapist regularly monitored my swallow and food consistency until I was able to eat mashed or finely cut food using my left hand and a conventional spoon. Not the special spoon I had been practicing with, I refused that. I eventually went to a fork as I personally didn’t like the idea of a spoon. I was very shaky and choked a lot. I was always supervised. This opened up a whole new world for me in food as I was able to eat practically anything now, so long as it was chopped up for me. I always ate in my room. Sitting with others was just too much. I tried it once and coughed and spluttered my food everywhere. I pleaded with the speech therapist to let me to go down to one and a half thickeners in my drinks and after testing my swallow, she agreed. They listened for clearance of a swallow with a stethoscope. Drinks were still given to me as I still couldn’t lift my arm up enough to tip the cup.

I was told that I was making a remarkable recovery, and I was very lucky. I did not think so, on both accounts. I broke down and cried in the corridor and a nurse had to take me back to my room. There was no reason for it. I guess everything had just got too much for me. She spoke to me about life and how she could never understand my situation and to be strong as I had come a long way. As I said, there were some days when I just wanted to give up. It all became too much. Not having Claudia constantly by my side was difficult. She is my strength, my reason to go on. I cried a lot. I wanted my life back. I yearned to be with Claudia.

They had a garden, a mainly paved area with a funny raised garden, and I regularly went out. I say funny, because it was about four feet high, and horseshoe-shaped. I went to bed later and later; my regular time was 11.00 pm. Sometimes it was later than that, so I was not missed the day I was shut out in the garden. I used to go in the garden a lot.

I mainly sat on my own, choosing solitude rather than mixing with the other patients. I preferred it that way. They had regular meetings about every six weeks with me and all the people that were involved with my care, about my progress and my future at Rowans. Claudia was in attendance for most of these, and she spoke out very boldly.

I crashed quite frequently in my new chair. Once, I took out a cupboard door, on another occasion the wheels caught the bottom of my door when on my way out of my room, completely ripping the metal foot protector off. It didn’t help that I laughed. Both were accidents of course.

In OT I was lifting and turning funny round discs up a kind of stand, rather like a mug tree. I also played games for my reach, grip and dexterity. Most of the time I would favour playing a large Chinese chequers game. I won most games, unless I was playing Claudia. Boy, she is good at that game; but if I challenged her to “Connect Four” or “Four in a row” I would win every time.

I got up to about 20 minutes standing in the standaid, but the staff could never get me back far enough in my chair until they discovered that if they completely removed the strap just before they lowered me, as it went down I was able to straighten my arms and stick my bum out. This would benefit my arms greatly as it stretched them out. I was strong enough to hold on to the standaid with both hands, so long as someone put my right hand in the gripping position. My left arm and hand functioned nearly normally, but it got tired quickly and was very weak.

I also went on an exercise bike regularly. I could use it from the chair. I was able to exercise both arms and legs, although not at the same time mind. It was automatic and therefore it could go round on its own. I was either strapped in, or strapped on, depending on what I was doing. I had 15 minute sessions. It had a small readout screen to show what you were doing, and when you had finished it would show what you had done. I could easily monitor my progress on the exercise bike. Some days were better than others and I seemed to make some improvement. I was very pleased with myself the day I did over four kilometres (I normally could only manage about three); I sent a text to Claudia about my great achievement.

Speech therapy was my favourite though. I guess because I could see definite improvements, even though I wouldn’t admit it. In speech therapy I practiced everyday words. Some words were easier than others. I said things very quietly and my breathing was very shallow (I had no real control over my breathing). Although there was no real explanation, I found I could speak better when I was in the prone position, and if I had anything to say, I fully tilted and fully reclined the chair. Speaking was important for me. Perhaps that’s why I liked it. Although at times I got frustrated and then I couldn’t speak for a few minutes. Normally, I was able to communicate effectively with people by using the communication aid and speech where possible.

 

I started eating two bisc-weet in speech therapy. By the time I got to it, it was soggy and okay for me to eat. The speech therapist recommended that I could tip my own cup which caused a few arguments. Not that I didn’t want to do it myself, but I was used to someone doing it for me and I found it so difficult.

I went with Claudia down to Derriford hospital, which wasn’t far, about ten minutes more or less down a hill. It was a busy place, which as a main city hospital I suppose it would be. It had shops and a coffee area. I ate some chocolate buttons. We went to the Intensive Care Unit and the High Dependency Unit where I initially was when I was first taken in to hospital. I was not emotional when I visited where I had been. I did remember some of the nurses. The chair slowly made its way back up the hill to Rowans. Boy, it was slow.

When Claudia was over here we ate mainly in the OTs kitchen. I was quite good, except for the time when my then eight-year-old son was there. He found my laugh very amusing, and I made such a mess with my food, which he ridiculed me about. My lability was much worse when anybody laughed, which made it impossible for me to eat and drink. Due to my condition I laughed a lot and some nurses took this as a cue to act silly around me, which made me laugh more and made them act even sillier. However, I wasn’t laughing at them, it was my condition.

I was taking a muscle relaxant throughout the day and at night as my legs were so tight. I was also given an anti-depressant. I took an aspirin in the morning to thin the blood and so reduce the chance of having a further stroke. I had an injection in my tummy every day, an anti-coagulant again. It helped prevent thrombosis. I hated the injection. I had been on the anti-coagulant for sometime so I asked the doctor if I could come off it. He agreed, so long as I wore Ted stockings. Ted stockings are thick and very tight. They are difficult for the nurses to put on. Boy how they struggled. I think they recommend them on long haul flights or anywhere where you are sitting down a lot, as again they reduce the risk of thrombosis.

Claudia pulled down my cards and pictures as they were old and some were tatty, taking half the paint with them, which I found very amusing. The walls were now bare and covered in big roundish marks where Claudia had removed the tack or tape. Claudia had remarked that one poster would cover most or all the marks. I suggested three. An Indian rug was put on the wall. It was very bright, and yes, it hid most of the damage done by Claudia.

I have already said about one patient being partially deaf. There was another that swore a lot. He shouted out obscenities, really bad ones. How his mother tolerated him God only knows. She pushed him in his wheelchair while he shouted his demands, preceded by a swear word. He also swore and spoke very loudly in his sleep. One night, at about 1.00 am and I was awake. He shouted something about his wheels (motorbike wheels I assume he was referring to). I just couldn’t stop laughing. He shouted out “bollocks” on another occasion which I found amusing. He shouted his demands to the nurses. They just took everything in their stride. I think he had had a motorbike crash.

Another patient had short-term memory loss. When he was put in his bed at night, he asked for bisc-weet. Then he rang the bell again for some bisc-weet because he could not remember having any. Then he rang again and again and again and again until he eventually went to sleep. One patient, who had terminal multiple sclerosis, was the life and sole of any party. She was wheelchair bound, and had such an infectious loud laugh, which you could hear all over the unit. One constantly tried escaping. She was suicidal.

On two separate nights we had the hospital radio come in. They played me a request and on both occasions I chose Glen Miller. Claudia brought Giona over. Wow, had he grown. He chatted away, in Italian of course. I caught the odd word, but had to rely on Claudia to translate.

In my last meeting, it was put forward that it was time for me to leave the Rowans Rehabilitation Unit as my progress was slowing down. Torbay hospital was nominated as being the most suitable option. I would enjoy Torbay my key worker said. They had an immediate vacancy.

One week later on the Friday, early in the morning I was told I could leave that day at 2.00 pm. I was quickly packed up. I had accumulated a lot of stuff which was packed in various bags and boxes, placed on a trolley and left outside what was my room. I was very emotional the day I left Rowans, after all I had been there for some seven months. Did I think I would always be there? I don’t know. I hadn’t considered moving on. I was comfortable there and everybody knew me, so somewhere new, although exciting as they would do things differently, was daunting.

The ambulance came, loaded my things, then me, and I was off. The speech therapist was looking out of the window as the ambulance moved off. I cried. It took about one and a half hours for the ambulance to make its way to its destination.