I saw two patients cry here yesterday for two different reasons. One was unrelated to being wheelchair bound but the other was not and I could not help but wonder if it is normal to NOT cry about the situation we now find ourselves in. I find myself looking at patients and watching how they are, how they do things and how they talk and I see some who, whilst they play down that they are now wheelchair reliant, they are seeing different things that they took for granted before but believed that there would be some way of making those things possible only to be told there is no way. I was glad that one had shed tears from something they were told as I had been worrying a little about them, I just have a feeling that the reality has sunk in yet and really hope that if an emotional `crash` is going to happen, it happens here where there is so much support. I really do hope that there is not a `crash`, really I do but I think it is going to happen. I just hope I am wrong. There are a few others here who I have seen to be people who are fine in the “safe” environment of the hospital surrounded by staff and other patients of all ages meaning there is always someone around your age to engage in conversation or game with. The harsh reality which I have found is that your friends list will change dramatically. I think that it is part of the reason that I have enjoyed my stay in the Spinal Centre. I love being at home with my Wife and kids, frustrating as it is at times for all of us but my friends list is different now. I have few people who I could now call good friends, and fewer still that I could say that I spend a lot of time with. Alison is one, when we `st-roll` to Ilminster, but having `wheelie` friends is different. Not having to crick your neck to speak to them. Having races and balancing competitions. Rolling while having a chat and not having to shout ahead. Being able to use a gradient to your advantage and not have to wait, and not having to push yourself really hard so as to not hold up for too long the person who has waited for you on an uphill gradient. I know that this is a rehab centre and that we will play sports and go to clubs, but it is still possible to do that outside. I am still waiting to find out the fate of my driving license so as I can drive to Yeovil to go and play sports with them there. I worry that when some of the patients that are here leave the `protection` of the invisible dome of the Spinal Centre and the other patients here, that they will miss the interaction and the realisation of them being in a wheelchair full time will hit, I hope that they are strong enough to dig in and crack on after a brief period of down.
Yesterday (Friday) was much the same as I have been doing here for the past three weeks but Jo wants to try different things from the wish list of things I would like to be able to do or at least be shown how to do for me to practice when I get home. Yesterday we tried a bath transfer. I had to get from the chair and in to the bath and then back again. I was clothed and there was no water in the bath. With trainers on, my feet would not slide meaning that I could not get them to slide down the bath as I got in but Jo helped with that. Then I had to lower myself slowly in to the bath and wait. It was the slowest decent I had done for a transfer ever I think and this had put me in a really positive mind set for the massive triceps lift to hoist my slightly less fat body, (it is still fat but not as fat as it was I don’t think!), up and out of the bath on to my chair. I tried to remember where I had placed my hands to lift in as this would be the tried, tested and proven method used on the way in and so would be a bloody good place to start on the way out! I placed my hands and without any thought I lifted and sat on the edge of the bath in one hit, solo, no help. Then I quickly relocated my hands, pulled my legs back and then got on to my chair. Finally I removed my legs from the bath and I was done. I have to say, I was astounded by how bloody amazing I had managed to do the transfer and I think it is fair to say that Jo was mildly impressed as well! Tom had asked if he could be taught and so Jo had invited him along to my physio session as I would be doing the bath transfers, so next was his go.
Tom has a very different injury to me in so much as his is a lumber injury. The lumber of your spine for those who don’t know is the very bottom of your back. The lower your injury, the more control you have of working muscles. Also, generally you will have your abdominal muscles and occasionally, as Tom has, part use of one or both of your legs. This is not always the case as all injuries affect people differently even though the breaks may be identical to another patient, they may have very different things working. Anyway, back to Tom. Tom has some quite well developed and defined bicep muscles and weighs probably a very similar amount to a corn on the cob. He is proportionate don’t get me wrong but his strength is really very good. Suffice is to say that he did not take as long as I did but I think mine was better! (Sorry Tom but it is my Blog after all!) Ironically enough though; despite me managing to lift out of the bath, I completely buggered up my transfer off of the toilet. Jo has decided that next week we will do lifting practice. I was only half an inch low but it would appear that size doe’s matter.
I had worked with the weights in the morning completing the exercises that Kirsty had written on my exercise sheet a couple of weeks ago. I had now upped the weights on almost all of my exercises now which has made it a fair bit more difficult but obviously I will benefit later on. I will be looking to continue when I get home and slowly up the weights so I will be sure to get a copy of my exercise sheet from Kirsty before I leave next week. Having completed the days sessions on my planner it was time to call it a day. Not the busiest day of the week but Fridays are when people go home for the weekend and so it is not packed. It is also when physio shut down the gym early to give everything a good disinfectant cleanse to keep any nasty little bugs that may cause any infections at bay. I really did feel good about the bath transfer it gave me a lot more confidence in my lifting abilities, I now just have to keep that confidence for the toilet transfers. It is very strange, I get the height but then seem to just give up and sit back down. I know I can do it, I’ve damn well done it and had done it in the morning, but it is something in my head that says for me to stop and sit back down, weird but I will crack it….eventually. I had an appointment with the psychologist in the afternoon before my physio session. It had been requested by the physio department not because they think I is a little bit on the bonkers side or that I can’t cope and that was explained to me from the off. The reason was to see if they could suggest a `coping mechanism` for my spasms. The spasms in my legs seem to be triggered by worry or anxiety. When I have to do a new transfer or a transfer that I have struggled with in the past my legs will bounce. I will try to stop them by leaning over them but a lot of the time they will not stop, over the past year or so that I have been trying to transfer or even before that when I have been in my chair I have only been able to stop them by thumping the muscle at the top of the leg, effectively giving myself a dead leg. I know to you the reader that may seem a little extreme which it is but you have no idea how bad they got unless you are in a wheelchair and know what I am talking about, and it meant that I would get frustrated and angry with them.
So then; back to the transfer which would make my leg bounce. I would lean over it and as it would not stop I’d get frustrated. Frustration makes it worse and so frustration turns to anger which makes it worse and then it escalates to a leg spasm and then almost immediately a full body spasm. I have kind of taught myself while I have been here trying transfers, to close my eyes, take a deep breath in and then out slowly and that can calm it. Similarly, I can now tell almost every time that a spasm is going to happen and I am learning to stop it before it happens but not every time do I to catch it or is it successful. With this in mind it was suggested that the psychology team may have an idea or two to run by me to try. The chat with the psychologist confirmed that I am a little crazy but nothing to worry about, that I was along the right lines with the coping mechanism and to keep doing what I was doing, (I was not serious about me being a little crazy ok). I did accept the offer of a CD that they have made so I may listen to it if my way doesn’t work or even if I decide to explore any different ideas. All in all the meeting went well and I am glad that physio had suggested it, after all, they see this all the time and know what help patients will benefit from and I am here to try all the assistance I am offered or able to get.
Andrea and Lara came to visit in the evening for a couple of hours so we chatted, had cups of tea (we limited Lara’s coffee intake for the sanity of my Sister!) and we played Rummicub which they appear to have got me hooked on. I won a game as did Andrea but alas there was insufficient time for Lara to win a game so that will have to wait for next week maybe. Saturday for me has been an extremely lazy one. I awoke this morning at five minutes to eight. There is nothing on at the weekend but I want to stay in the routine of being awake around seven so I can help more at home with the children. I am not entirely sure what happened but I am guessing it involved closing of eyes because I next woke up at nine o’clock. Well this would never do, very frustrating, not good, must do something about it and so I did…..at ten o’clock when I woke up again. I repeatedly called myself a lazy bastard and then got my arse on to my chair, time for a shower I think; then let’s get this day started (or what is going to be left of it by the time I get my shit squared away). My lift on to my chair was frankly shocking and it resulted in my grazing my butt somewhere as there was a bit of blood on my towel. After my shower I had a nurse quickly check to see if she could see anything obvious and so we are going to get it checked properly when I go to bed. This may seem slightly strange or overkill to you unless you are a wheelchair user but the simplest graze can result in you having to be on bed rest for a week or so to prevent any serious damage occurring, so as you can imagine I am hoping that they do not find anything. Because of the possibility of a sore I tried to prevent any aggravation of the potential problem area and have spent the day in my power chair so that I am not moving around unnecessarily which could and probably would occur while pushing my wheels round. Better to be safe than sorry.
Moving away from my rehab for a moment I want to talk about some news I received which was thought provoking, upsetting and to a degree triggered a sense of desperation. Many of you will know that I have been fortunate enough to be involved in a project called Operation Nightingale whereby service personnel who have been injured both physically and mentally work together with other injured personnel and where possible civilians, to take part in archaeological digs. There is no rush to do too much, time is spent slowly excavating with tiny trowels and brushes while talking to the person or people whom are working together. It gives chances to share experiences, to be around military banter and phrases again and it encourages some to open up and share their feelings. All of this is so massively important, makes such a huge difference to those involved and keeps them coming back which is testament to how much the injured get from it. Some even go on to study archaeology achieving degrees in it and then successfully becoming employed and doing archaeology as full time employment. A little while ago I was the Platoon Serjeant/ CQMS for a dig in Caerwent where I met many new people and students who had joined us as part of their studies. One man I met was a gentleman who had been on HMS Sheffield during the Falklands conflict. The ship was hit by an Argentine missile and all had to abandon ship. This gent was one of those who had to abandon ship but also one who survived, or did he is the question that I asked myself after meeting him.
PTSD, Post Traumatic Stress Disorder. That is what this gentleman was suffering from and had been for many, many years. The once very proud Sailor had effectively died in the water that day and the shell that housed that young man came out. I did not know the gentleman before Caerwent but I had been told a little about him. I spoke to him a few times but got very little in response, the shell was not massively interested or possibly comfortable with someone who was unfamiliar but then I saw the man inside the shell, the embers of the man who surfaced when a senior officer of the Royal Navy, a Father of the family he was a part of came to visit. The two knew each other and when the `Father` walked to him he stood tall almost as if he was temporarily back in uniform and it was for me very moving. As the days went by the shell became someone who would engage a little more in conversation and one day, after some discussion with one of the key role members of Op Nightingale, I asked the gentle man if he would s[peak to the group. To let them know who he was, what he had served in and then about the archaeology but essentially it was his show and he could be as long or as quick as he wanted and talk about what he wanted. We made sure that someone he trusted was in the room in plain sight as a safety blanket if you like who would also jump in if needed to help him out with a question. His talk was brilliant and I was amazed at the contrast in what I had seen to what I was seeing. The shell had embers in it, and those embers ignited some kindling which burned faintly as the gentleman who had surfaced began by telling the room who he was, what his job had been and what happened in the Flaklands. The fact that he had got off of the ship but then what he had endured and witnessed.
The kindling then ignited a touch paper, the gentleman that had surfaced suddenly began to tell us about archaeology and suddenly the shell had become a scared, damaged but proud Sailor of the Royal Navy to what can only be described as a fountain of knowledge, almost a professor and it was both incredible and a pleasure to witness. His knowledge again spilled out while the finds were being cleaned but when the day was done, the professor like person retreated back to the Sailor and then ultimately to the shell. I appreciate that referring to someone as a shell is rude, inconsiderate, disrespectful and a whole host of other words but though I search my brain for another more respectful word to use I simply do not have one, and if you had seen what I had you understand. Because of Operation Nightingale the gentleman was able to interact with and be around the one thing that had been missing from his life since his discharge; Military personnel, military speak, military banter that only forces personnel both past and present will understand or relate to. He made three very good friends whom he trusted and who I saw dig out blind for him which is also really touching. So why am I going on about this? Sadly this week, this gentleman. Sailor. Friend to those few people who he bonded with and clearly trusted enough to spend time with, and member of Operation Nightingale passed away. I know that one person in particular who I spoke to was very upset about it but I tried to tell him that he had done what he could and should be proud of what he had done, also that he can help everybody.
I think now of the forces personnel who have served our country, done the bidding of our Government and fought for the freedom of other countries and I wonder and worry of how many may end up like the once proud Sailor that I have just been writing about. It should not fall on the shoulders of charities to look after these men and women. Help for Heroes should not have to purchase the things they do for the forces personnel that they help, SSAFFA, The Royal British Legion and other military charities who have also helped my family and I for which I am grateful beyond words to for their help should not have to be inundated. The men and women who suffer injury both mentally and physically must be looked after by the Country who they so proudly defended and fought for to prevent Soldiers, Airmen and women, Marines and Sailors such as the one I have been speaking about, do not suffer in silence, do not end up drinking themselves to death or ending up living rough on the streets.
Rest in Peace Mike.
