I have had another full day of it today believe me. When I got in to bed last night I was all ready to be woken up this morning at around seven o’clock and start the day with the normal morning routine, however this was not the case. It would appear that I may have been a little fatigued after my afternoons physical training with the sports therapist who I have I have affectionately named “Heir Kirsty” as she is a bit of a slave driver in so much as she really works you hard. I have to be honest when I say that I am pleased that she does because if she did not it would be a waste of time participating. With her partner in crime Georgie on the case as well I worked really hard yesterday and after doing the Blog entry and getting in to bed, it would appear that this morning I may have been either impossible to wake or possibly was woken and then I just went back to sleep. Whatever happened this morning, I did not wake until half past eight and so by the time I had completed the bathroom routine and got dressed it left me no time for breakfast as my visit by my Consultant who was on his ward rounds, was only minutes away. It was good to talk to him while he was finding out how I was finding the programme so far and to ask if I had any questions or problems. We spoke briefly about a few things I had been doing and things I had found a little difficult to adjust to but did ensure that I told him how grateful I was that he had accepted my referral and the programme he had devised for me. I had another fantastic bit of news delivered by him just prior to his departure to visit his other patients; I would not be discharged until the 25th, a whole extra week of physiotherapy and the other skills needed to make life a bit easier. Needless to say I was reasonably happy with this news, and as soon as he had left I quickly made a coffee and then had to get straight to physiotherapy at eleven o’clock.
Physiotherapy this morning was in the department on a plinth with a second plinth next to it around 4 inches higher than the first. I had to lift myself on to the second plinth and then back to the first. I had not had a particularly easy morning with my legs whilst using the bathroom and had almost ended on the floor on more than one occasion while trying to transfer. I have found that when things start to go wrong or I get frustrated, my legs will spasm. This spasm I am sometimes able to stop by leaning over my legs to `break` the spasm. If this does not work I will become angry about the spasms causing me discomfort and they will increase in strength until I eventually, if I am not careful, end up locked up like a board until I calm down again. I knew I was going to struggle with the impending transfer exercise but I HAVE to be able to do it. I was here to learn and practice and simply `chinning it off` would be a waste of my opportunity here, so I was going to try my damndest to get it right. I looked at where I would need to put my hands and I tried to lift, I ran through the `checklist` in my head; straight elbows and hunch shoulders by your ears, push down with shoulders and achieve the lift, look away from the direction you want to get to and swing yourself across. Sound complicated? Sound long winded? Sound easy? TRY IT! I say try it but you cannot, and you cannot because you are not physically able to shut your stomach muscles, your core muscles, your back muscles, your leg muscles or your ass muscles down. You cannot imitate what it is like for our bodies and to that end, you will never know how difficult it is to learn and perfect the technique. I have an added problem, I have taught myself to do these transfers because I had to. I had to figure out how to do things or I would have been still in bed now. The problem though is that I need to do it properly because as time goes on, if I do not do it properly, it will only be a matter of time before I fall off of the chair while trying to get on to it or landing on my wheel or something equally unfriendly to an unprotected bony area and I will cause myself some serious damage. Effectively it is like someone telling you that all the time you have been walking for instance, you have been doing it wrong and that you have to forget what you know and do it a different way. It is hard. The other thing is, is that as I have got fatter and heavier my muscle groups in my upper body have strengthened at a proportional rate. Now though I have to use the muscle groups differently or possibly different muscle groups. This is the equivalent now of going in to a gym and selecting the heaviest weight right from the start and trying to lift it all day long. Suffice is to say that I have been struggling but also persevering to try to get it sussed and shall continue to do so.
As expected I did have problems with the spasms and as a result I got wound up and the spasms got worse then I got really angry that time was being wasted by all the spasms stopping me from practicing the transfer exercise and then I ended up lying down like a giant washboard. It was at this point Jo told me to roll on to my front and allow the stretch this performed, to relax the spasms and then we would try again. It was fifteen minutes before I was allowed to rollover on to my back, sit up and get ready for more transfer practice. Jo told me to show her how I would do it, which I did, and then she spoke about what I had done and how we may be able to, for the interim at least, find a way that was in keeping with how they teach you to do it and also with the way I have been doing it for two years. This would mean that I would be able to do the things I needed to do daily, but by positioning differently I could avoid the danger areas of the things I would be transferring to such as wheels and then by slowly moving my hands closer to the positions that are suggested, I would be building the muscle and learning to use the muscle groups effectively to achieve how it should be done. Do you see how complicated this all is! After a few more transfers I got back in to my chair and it was time to show Jo how I had been managing with the bathroom routine. I showed her the way in which I had been transferring and she `critiqued` my method and then talked me through a different way. Then it was time for me to try what I had been told. I felt much happier with the transfers having had some instruction on how to tweek the way I had been doing it. Tomorrow morning will be the time I can put the instruction into practice and see how I get on. My physio session then came to a close and lunch was served.
I had my assessment for weights after lunch at one o’clock with Georgie. She gave differently weighted dumb bells and told me to do certain exercises with each weight. This she would write down on to my sheet and this would then be the starting weight I would use for each exercise. Obviously this is a long term programme that is done for those patients who come in for rehab straight after their hospital stay is finished and they are transferred to the spinal centre. I only have three weeks, but I intend to smash everything I have the opportunity to do, this will be something I will be able to continue with after I leave and get home. My arms were a little sore after all of the physical exercise yesterday but if I was able to do the repetitions with the weights after all of that then it showed I had good strength in my arms at the moment and that it would mean in time I could up the weight of the dumb bells. This session ended at around twenty to two and I decided to go for a little relaxed roll around to warm the muscles down. I got to the foyer and Steve was doing some wheelchair skills, he asked if I fancied joining him and “Heir Kirsty”, it was a nice offer and would give me the perfect opportunity to practice some more of the skills I had learnt or was developing. Steve is getting used to a new chair he has been given to try. Something I like about this place is that they have a good selection of different wheelchairs that they let you try for a few weeks to let you find out what you are comfortable with, which one you feel more confident in, which chair you feel suits you better and a whole heap of other things right down to what you think looks best for you. After practicing with Steve for a while back wheel balancing, rolling on the main wheels and negotiating curbs, his session ended. I popped off to make myself a tea and then slowly headed off to the physio department to catch up with Andy the wheelchair maintenance guy as I had an appointment about my chair. Some castors were being brought in for me to look at so I could choose the ones that would be going on to my chair while Andy very kindly adjusted it to fit me better. On the way I bumped in to Izzy who was with “Heir Kirsty” ready to do some wheelchair skills. It seems like the rest of the people who were down to get the more personal instruction and practice with Kirsty had not shown up and I was asked if i wanted to join in. Why not, so although I only had ten minutes before I had to meet Andy, I headed off to practice some more. Izzy is in one of the groups that I do the skills lessons with, we went outside and she did some of the curb work. I have pretty much got the curbs squared away now but there is always room for improvement. I think that it also gives the others in the group or the individual if there are only two of you, a bit of a break and an idea of how they need to get their positioning to accomplish the task by being able to see another person doing it from the side view. With my time up, I had to dive off to Andy in the physio department and wait for the wheels. I myself had been timetabled for three o’clock for a group session of intermediate wheelchair skills and I did not want to miss it. Whilst I am aware that I am capable of doing some of the more advanced skills, I have had to teach myself and there may well be something I have not learnt as I have not had to use that skill yet. Furthermore I may learn an easier way to do things and to that end I jump on everything I am able to do so I get the maximum benefit from my stay here.
With the new castors chosen and an arrangement to meet Andy in the morning to sort out the payment for them so they can be delivered allowing Andy to adjust my chair, I just had enough time to meet up for the intermediate skills group. It was back to the foyer where we would be practicing the back wheel balancing some more. Ryan has been given a different chair and is therefore having to get used to the different effort needed to get the chair on to the back wheels in the first place and then the balance point and keep it there.
He did sort it out though and even managed a look for the camera. Kirsty obviously stands behind to prevent the chair going over in the event of an overbalance, other than this she does not interfere which means it is all on the wheelchair user.
After the foyer we headed outside to do the curbs. Obviously I have done this a lot today by this point but it is exactly what I need to be doing, practicing. Ryan had a go and after a few attempts he got used to the difference of this chair compared to the last one he tried and he got up and down the curb. The next person to have a try was Kirsty, not “Heir Kirsty”, but Kirsty who is a patient here. She too got up the curb and down after a few attempts as she too had a different chair to that which she had last time we were practicing.
The other members of our group also completed the task and then it was time for this session to end ready for the advanced group immediately after. I met up with the rest of the advanced group and whilst waiting for the last of them to arrive I had a go at rolling down the slope on the rear wheels. I know how important this is certainly from my own point of view and experience and want very much to learn how to do it. I am going to have to try more on this as it requires you to have the castors really quite high compared to where you would, to do this you need to lean back in the chair which I can do but when it is rolling it feels that it is going to overbalance and I instinctively slow the main wheels down which in turn brings the castors down and then you cannot pick them back up. Another little activity I need to practice in any spare time I have. When the rest of the group had assembled we headed outside to the steps. The task was to go up the steps, that’s right UP the steps. Our teacher “Heir Kirsty” instructed us on how to do it and Tom was the first to try, succeeding in a very good time. Josh was next who also achieved the aim, and then it was me. I positioned myself in front of the steps and reversed until the back wheels were against the first step. I reached back with my left hand and took hold of the hand rail. Next, under instruction from Kirsty, I reached across my belly (that was no easy task I can assure you!), and grasped my left wheel with my right hand. From here I had to get the chair on to the back wheels which I did, and then Kirsty positioned herself behind my chair to stop me from falling backwards and also to give assistance by pulling slightly on the chair to complete the movement if you had nearly got on to the step. This would continue step by step up to the top. I tried and tried time and time again but I could not pull sufficiently in my left arm to make up the short fall in effort or power from my right arm to get me even up one of the steps. I did not get disheartened as there are after all elevators in most establishments and if there is not the means for me to get to the upper floor of the establishment then I will just remain on the lower floor! Joking aside, it is something that Kirsty has said we will practice more as time allows, so now I had two activities to practice. The slope I can practice on my own as if it does go pear shaped and I fall out of the chair, the slope is outside of the physio anyway near as damn it and so I will simply slide on in and ask for a hand! Having finished the steps and more curbs (higher ones!), it was time to end this session and go for tea.
I spoke to my kids tonight, which was nice. My eldest Daughter had played in a hockey match after school against another school and they won which was great to hear. It was nice to know that she is taking part in the after school games and representing her school, really proud of her for that. My Son has received through the post two certificates, one for his Maths diploma and one for his English, so again, really proud of him for achieving those! My Son and Daughter study in their own time to put the missing blocks in place that they did not understand fully when it was taught at school. With these blocks missing, it is more difficult to understand the things being taught further on. They learn by the DVD and then answer the questions in the books. Once they are happy they understand, they can go on line and do the diploma related to the study level they have just done. It does cost us money to do it monthly, but by God they are doing well. They used to go to a lady who would help them with their school work and she worked wonders with them, but now we have this “programme” which also gives them certificates when they pass. It is unfortunate that I could not afford for them to do both the “programme” and to stay with the lady who has done so much for them but it is not possible and so we have had to go on to the “programme” instead. I spoke to `Pickle` too, she told me that she had been “Helping Mummy tidy up”, what she actually meant was Mummy was tidying up after `Pickle`!
So as you can see I have had another amazing day. I am pushing myself as hard as I possibly can to ensure I do not leave here wishing I had done something or tried harder. I am happy that as it stands I could not have participated in any more activities than I have, so I am confident I am making the most of this opportunity. Off to bed for me now, here is hoping that I don’t oversleep tomorrow!