Mothers day, so yes I am on my own. Adam and his sister always go to see their Mum on this day and they always go together as it is a rather long hour and a half on the bus there and back again. They did try this year to get her to drive into Glasgow so they could take her out to lunch, but she wasn’t having it, she wanted her family in her home for the day as she said that all the restaurants would be too busy, understandable on that level. So anyway, he was up at 7:30, dressed and gone without any time to say much other than Goodbye and have a good day” and he will be home in time to say “Goodnight, I love you”.
I have to admit to feeling rather sorry for myself this morning, despite going to the loo yesterday and being as sure as I could be that that was it and I would get a few days peace at last, within hours it was back, well not literally. My stomach was flatter and soft, but all the pain and discomfort I have lived with for months, was all there as though nothing had happened and it is still here this morning. It was when I got up after my nap that I first felt it, there it was the unmistakable feeling of pressure right across the front of me and I was feeling sick again. As the hours past it was getting stronger and stronger, even though the only thing I had eaten since was my lunch, I honestly would have said I had several days of food stored waiting again. I did try several times to press my hands into myself to check over and over to see if it was possible there had been more hiding and it had simply moved but other than the normal strip across the top, I could find nothing behind it that could possibly be causing the pain. I kept telling myself that it was possibly a reaction to being clear, that my guts just needed the chance to readjust and that it would pass, but it is still here this morning and even woke me up with pain low down in my stomach, a place that doesn’t normally hurt until the last couple of hours before relief. I have had pain like this for a couple of hours after having taken too large a dose of laxative, but I didn’t, I have been really careful about that since the last stupid mistake and even that one, didn’t cause pain that lasted right into the next day. Right now, well I would describe it as every inch of my gut is aching with a much more acute, sharp pain at either end of my body. Whatever is happening in there, it has taken another step as there shouldn’t be any pain this morning at all, nor should there have been enough pain to wake me during the night, which it also did.
When I was lying awake in bed waiting for the alarm to sound, I started to think about the appointment that my doctor is making for me to go and see the guys at Gastrology. I am so aware of the issues I have when it comes to talking to people and being able to vocalise my thoughts, those I don’t forget, that I was wondering about doing more than just writing a crib sheet for myself, but actually writing a sort of post for the doctor. I know what it is like when I go to hospital, the whole process is inclined to wipe my brain, part of the reason I am so glad that Adam is always with me, but I know even with him there, that things still don’t get said and I am also very aware of the fact that if you see them more than once, you never actually see the same doctor. I found myself coming up with the idea that it might be an idea for me to just write it all down, being sure that everything is there and without any floweriness around, just keeping it to what is important and what the effects on me are. That way with any luck it will be scanned into my notes and on return visits or if they are discussing it with other doctors, my words are there for them to refer to, rather than what they might or might not personally feel is important. One of the things that I have learned is different doctors all have their own personal trigger words and unless they hear them, they dismiss what appeared around the word they were looking for. I have lost count of the number of times that doctors have asked why I didn’t say something before, when I had, I had just said it in my own style. I am also aware that one of two things also happen once you are living with a chronic condition, firstly they blame it for everything and anything that they can and secondly, once you are on strong painkillers, they forget that point so when I say it hurts, they measure me against the norm as if I wasn’t on Morphine, what if I wasn’t I would be more likely to tell them it’s agony.
It isn’t all their fault, I will take the blame for some of the miss-communications, when you have lived for most of your life with pain, you do become dismissive about it. That doesn’t mean I don’t notice it, or it doesn’t hurt, but it is normal for me, if I had never had pain beyond that of the average person out there and I wasn’t taking Morphin, I am sure I would probably have been in the emergency department long ago due to my stomach. I never thought that you could actually get used to pain, but you do, that statement shouldn’t be confused with either not feeling it or not minding it, it just becomes part of your life, just like feeling hungry or wanting a drink of water, it’s there and you live with it. I honestly don’t know what I would do if I were to wake up one day and find that I wasn’t in pain, nor did movement not cause it, nothing in my life is pain free, it’s more a case of degrees of pain. I have also totally given up on the dream that one day they will give me something that will totally take the pain away, managing it seems to be the best available without putting me into a coma or complete zombie state. It is one of those tough things that goes hand in hand with illness, decisions, knowing and working on, what is right for you. We all have to decide what we can deal with and what we can’t, do we want to feel as though we are on drugs or do we want to have a head clear enough to be able to function as a person. My decision has always been that I want to function, although, I have to say that within that, I would kind of like to have the option of having something to hand that I could take when things get too much. Pain is wearing, it eats you from the inside out and there are is no escaping it. I would really like the opportunity to escape should I want to, that would knock me out for 24hours, long enough to let my body rest and restore, only if it is slight.
As much as I would love to get my doctor to read my blog, no GP has the time to read all their patients ramblings, but if he did, well maybe we might get a lot further at actually maybe not beating this thing, but at least taming it better. I know that on the whole I am very lucky to have the GP I do, even though Adam seems to think that he should be coming to see me for a chat every now and then, but I at least have a doctor who is open to me calling him and saying, “please can I have……”, without getting him upset with me. I am sure that the day will come when the answer will be no, but as thing stand at the moment, we are doing not too badly together, as until he can give me a totally new body, well all we can do is muddle along as we are.
Read my blog from 2 years ago today – 15/03/13 – Endoscope number two > http://bit.ly/WjFD1a
I have to say that yesterday went very smoothly. The ambulance actually arrived on time to get me to my appointment and the whole process of the endoscope was painless and simple, I did like everyone gag as it entered my throat, which had been numbed with a sedative spray, but past that first few seconds although uncomfortable it was all rather painless. The only pain I had at all was after, I was just about to put my coat on………