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Thursday 26 April 2012

What a nerve!

I know it's been a fair while since my last post. Usual excuses apply, and maybe a few more! I've decided that this post is going to be mainly about my health. I feel that I really do need try and get some of the feelings, the stress, the pressure, outside. I'm very good a bottling things up and putting on a brave face, and not always so good at expressing my emotions. Bishop Damien and Roy have both commented that they have noticed a change in me. They have said that I seem to smile less! This change has been noticed over the past few months, since my hospital experiences in particular. I recently saw a friend that I haven't seen for ages. He also noticed a change in me, he actually asked if I'd been to war as my eyes seemed "empty". He said that I had the same look as some soldiers do when returning home from combat zones. He should know, he is an ex soldier. I'm not in perfect health. Firstly I have a huge and unsightly scar to my abdomen which also has a big dip in it. This is as a result of the life threatening position that I was in last year. I am developing an incisional hernia in the same area which causes discomfort at the moment, sometimes more so than others. I have been told that they will wait until it is particularly problematic before operating on it, not that I would even want the operation at the William Harvey Hospital. To be honest, the thought of having the operation there actually causes me some concern, and no doubt, causes some underlying stress. Secondly I have type 2 diabetes, although this is generally well controlled, so doesn't cause me any major concern. My main problem is that since having my surgery in July last year I have been suffering from neuropathic pain in my left leg, in particular my left thigh. It would seem that the femoral cutaneous nerve is the offending one! I first noticed a problem when I woke from having my appendix removed. I had a very intense pins and needles type pain in my thigh, at the time I just put it down to perhapos having laid awkwardly during surgery, and so did not report it. Even over the following couple of weeks it continued, although I had other, more serious, problems so did not think to mention it, instead thinking that it would settle. Over the following weeks it did not settle, the sensation changed somewhat, but did not improve. It became increasingly more painful. Painful when resting, walking, sitting, lying doown. Painful to the slightest touch, even water from the shower or bath became painful. Wearing clothing on it or having the duvet on it when in bed resulted in pain. I felt that it was starnge that this should first happen following surgery, it was the same leg that they shaved and attached a diathermy pad to. I decided to look on google for some possible answers. By searching "thigh pain diathermy pad" I started to see some results. In particular there were some forums with people reporting the same problems following the use of a "grounding pad", this is what Americans call the diathermy pad. Some people have reported having problems for days, weeks, months, years. I spoke to a doctor at my GP surgery. I explained to him the problem and he immediately blamed my diabetes and stated that I must have diabetic neuropathy. I would not accept this as a diagnosis as it came on suddenly! I explained that I could not sleep properly becuae of the pain, etc, etc. He prescribed a drug that he thought might help the nerve pain....I tried it....it did not help! I have been back to the surgery many, many times and have seen a variety of doctors. I have tried a variety of drugs and combinations thereof. Mainly without much success. The pain is constant, 24 hours a day, 7 days a week. It makes no difference if I rest or if I am active, the pain is there. The level of pain does vary, but I would say that it is never comfortable. I was taking morphine sulphate tablets to help with the pain. They were the slow release ones, which meant that you take them every 12 hours. I found that they worked to a certian extent for a while and then stopped. I was changed to taking them every 8 hours instead. This helped a little more, but still not great. My sleep was still being affected, my motivation for life was starting to diminish. I was recently seen by a neurologist who was a nice chap and gave a few ideas, but wasn't able to tell me when or if it would improve. He suggested that a few things might be worth trying such as a nerve block and pain relief patches instead of the tablets. He wrote to my GP with his suggestions. His opimion was that I have Chronic regional Pain Syndrome (CRPS), this seems likely according to google! My GP started me on the pain relief patches. The first ones I tried did not help at all, these were Butrans. I was changed to Duragesic patches and these helped a little with some of the background pain (which the tablets NEVER helped with). However, there was still a lot of breakthrough pain and so I was prescribed oramorph. This helped a little, but again didn't take the pain away, just helped a little. I was sent to the pain clinic at the Kent and Canterbury Hospital recently. The consultant wasn't much hep in my opionion. He ruled out trying anything that the neurologist suggested...although I'm not going to accept that without a battle! He has said that I should have an MRI scan of my lumbar back to rule anything out there. I do actually agree with this idea and am surprised that it has not been done already. I have a scan booked for 16th May...a Sunday at 5pm! I have then got to go back and see him 2-3 weeks after. In the meantime my pain patch has been increased in strength, I also take a couple of tablets (3 times a day) and I am now using oramorph on a regular basis, especially at night. Sometimes the pain is bearable, mostly it is not. It is most often a lot worse at night, especially so if I've had anything so much as a semi-active day. i am usually awake for the vast part of the night, often sitting on the edge of the bed, crying, tears not just of pain but also despair. Some nights the pain is so intense that I cannot eveb walk from the bedroom to the bathroom if i need the toilet. Debbie has even had to walk with me, supporting me, as I have been unable to walk the very short distance without support. Although she is my wife and does not mind helping me I feel degraded at having to need such help. Often I am exhusted in the morning when it is time to 'get up', having been awake and suffering through the night. i then have to put on my 'brave face' for the day ahead. At night I often actually fear going to bed because I know what awaits me! Even on my better pain days I feel lacking in energy. I have found that my concentration levels can be affected also, my memory is not as good as it once was, not that I am suggesting that I have memory loss, I think it is just that because I am so drained within that it automatically gets affected. There are 24 hours in a day, many of these have become dark hours for me. The only things that give me any pleasure are my family, Church, my job and my friends, which includes friends such as Bishop Damien and Roy. They have been so supportive over the past few months, which means so much to me. I don't think they realise how much their friendship and support actually means, it doesn't help that I'm not the greatest person at showing my emotions! I'm going to share something here that I really don't know if I should. On more that one occasion, when I have been awake at night, sitting there with silent tears, I have thought about suicide. A few things have stopped me, namely Debbie and the kids, my faith/Church and my job and friends. Firstly, if I were to die Debbie and the kids would have nothing, my small life insurance policy would not pay out, we have no savings, etc. I am the main breadwinner so to speak and so they need my income just to live. Secondly, suicide is a sin, although thinking about it isn't. Thirdly, I do enjoy my job and the challenges which are ahead and I would never want to let the company, and in particular, Roy and Bishop Damien, down. I actually feel that I've let them both down my admitting to the fact that I've had such thoughts. But I hope that it can be understood that the reason I'm putting my thoughts into writing is in the hope that it helps me unbottle some of what is inside me. I fear that if I don't then I will explode. I know that I can be snappy at times, defensive, moody, etc...I'm hoping that this will maybe go some way to explaining why, not that I'm justifying myself. I have been living with this pain and problem for over 9 months now. As I said earlier, it is there all of the time, whatever I do. I can be doing nothing and the pain can be excrutiating, this is what makes no sense and why it is so difficult to live with. If certain things made it worse then they could be avoided, but neuropathic pain does not comply with such rules. Sometimes my leg is more hypersensitive than others, sometimes it has a burning pain, shooting pain, stabbing pain, tingling, throbbing, etc, etc. There is always pain of some type, often a combination of sensations. I have been asked to describe the pain on a scale of 1 to 10 (10 being worse), the lowest it ever is falls at about 7, that's with the current medications at their height. Other times (a large percentage of the time) it is off of the scale. I have read that some people often describe neurpathic pain as 15 out of 10...unless you've experienced it I don't think you can actually understand it. Living with neuropathy isn't always a life....it is more like an existence! I'll post more about my progress (or lack of) as time goes on. This Saturday I have an appointment with an EFT practioner. Roy has kindly funded it in the hope that it may be of some benefit to me. He has benefited from it and is convinced of it's potential. I am willing to try anything, so I really do hope that I can get something beneficial from it. I have a few things to look forward to. In June I'm going to away for a few days with my wife and kids, we're also take my mum. Then there is the fact that the shop will be moving premises, Dv, we are also planing to open a Christian tearooms. This will be a fantastic opportunity! Then I have a one week holiday in August, Debbie and I are taking the kids to Minehead. Biahop Damien has also mentioned a possible date for ordination to the Diaconate early next year, assuming my studies progress. Finally Debbie and I have agreed our holiday for next summer, to Egypt. I've also found out that from the resort I may be able to do a day excursion (by air) to Jerusalem...a prospect that I relish!! I'm going to try and do another post next week as I want to write a few things about the Archbishop's recent visit to the UK which went very well, it was great to have him here. Anyway, it's time for me to go to bed. My leg isn't too bad right now, I just hope that it stays that way tonight! Until next time....