Yesterday turned in to a really strange one, one that I had totally not expected when my day began. Just after I had posted my blog the doorbell rang, I was expecting it as it was my fortnightly delivery from ASDA, something that is always the same, fast, simple and provided by helpful and thoughtful drivers, well until yesterday. The delivery person had been here before and he as always been the least chatty and the only one I have totally failed to get a smile from. All the drivers know that I like them to empty the boxes into my hallway, from there I put away the frozen and fridge item, and Adam moves and puts away the heavy items when he gets home. The first boxes arrived at the door and I let him in, to my surprise he dumped the boxes right in the door entrance, then turned to head downstairs, so I asked him to empty it, to which I got a mumbled answer that he would do it once he had all the boxes upstairs. I immediately said that with the boxes there all our heat was being sucked into the outer hall, he shrugged his shoulders and went to get the rest. I have to say that stunned me a little and I said nothing over the next 10 minutes as he piled up all his green plastic crates. Eventually he started to unpack and his first move was to put a bottle of coke right in front to the hall heater, our only heater and extremely hot as it heat the whole house. I pointed out that it would explode so he picked it up and dropped it heavily clear of the heater. I was stood the by the kitchen door as he slowly boxed me into my corner, I wasn’t really thinking about it by that point as my shopping was flung around my hallway. He handed my his little black box to sign for delivery then started to grab his crates, I then spotted I couldn’t get past all the shopping and I started to ask him to move some but he was on his way out and he wasn’t coming back. I managed to move slightly a couple of things so I could step over the rest and get back to the living room.
Adam called as he always does at 1pm and I asked him to come down to the house and move it all as I couldn’t get to the kitchen or the bathroom. He was here in minutes as the Hospital is just up the road and before moving everything he took a photo as I intended to email ASDA’s about it as I find it hard to think that they would see this as service of any level. While he was here he told me that he had spoken to my consultants secretary, he sees her almost daily as part of his work, she told him that she at last had the results which had been the hold up. Of course couldn’t tell him anything, but she offered to speak to me if I called her that afternoon. As he hadn’t expected to be coming down to the house, he had left her number at his desk so he called me once he returned after his lunch hour. I often find that Adam’s ideas of what all these tests and visits to the hospital are at odds with the reason I believe that I am attending these appointments. If you read back in here the whole thing started because basically my digestive system has given up. I am digesting food but not all of everything, and unless my bowels are full and I eat more, nothing moves through me, I guts seem to be working on a overflow system rather than the normal daily finished and get rid off action of a healthy bowel. My GP, the continence Nurses and the district nurse had all failed to get things under control, so I was sent to see the Gastro team to see if they could help. The test they did were more about ruling out, rather than looking for, if everything was clear then the real point of being there would begin, the real point being to get control again in anyway that is possible. Adam on the other hand didn’t seem to see any point in going back if there is no cancer or growth or anything else they can operate on. From the start I have said that the problem is my MS and nothing else, so we are approaching the whole thing from different angles.
Once I had the phone number I called secretary, she had just written me a letter and she read it to me, it was exactly what I had expected. All my results were clear and there are no sign of any other condition, in their opinion all of problems are down to my MS and they will be sending me out an appointment to return to the hospital to discuss what if anything they can do. The wording did come across to me as them once again saying they couldn’t really help. Adam and I discussed it again when he came home from work and yet again we were still at odds with the purpose. Adam seems to feel that it should now be all handed over to the Pain Clinic, I see that to a point but it isn’t just pain, there is so much more to it than just that. I am hoping that they will know of some drugs that might control my bowel actions, including the diarrhea and incontinence, drugs specially designed for that purpose, also with it being their specialist area, they may well know of a drug that is more effective on controlling spasms in the intestine and therefore the pain. In fact I feel the next appointment is actually what the first appointment should have been, I have always said it is my MS, the Nurses all believed it is my MS and now the hospital does as well, with us all in agreement, maybe now, nearly 10 months, on the things I at first asked help with can really be discussed. I suppose I also have to ask them what to watch out for with my newly discovered Gallstones, well as we know pain is a difficult thing, if they manage to reduce my pain levels with stronger of different drugs, how am I supposed to know if they are causing huge problems, if I can’t feel them as others would. I know from the last visit that they aren’t going to operate as I expected, I am not a great candidate for going under the knife. So now I wait, not for the letter to arrive as I know what it says, but for the next appointment to be sent out to me, I would prefer that I see them before the Pain Clinic on the 8th, which is unlikely, but we will see.
Last night was another night that I went to my bed and cried. It was mainly the tensions of the day, but I now had the words that I suppose even I had that tiny hope wouldn’t be the answer, that once again this is something else I just have to live with, from here on in I can look forward to more pain, more discomfort and another thing that is on my list of “Sorry we can do nothing”, it’s a list that never seems to get shorter, just longer and longer.