I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly what I have just done. I am sure that my skillfully built cocoon contributed to it, but I still feel that it is probably the best place to be. When you have to live in your home, in just a couple of rooms you have to make it a world that supports and protects you. Without all the safeguards that have kept me going for years now, the perfect little world that I can deal with and doesn’t challenge me hourly is important, but I think I may have done my building just that little too well. I love the idea that I can sit here in my crystal tower, safe from the outside world hurting me and challenging me, but I can also see now that not having people who show you what is wrong and what is getting worse, may well not be the best way to live.
It is partly by design but partly because I have so few people still in my life, who actually come in and make me realise and face up to the fact that things are worse, that I haven’t been just coasting along level for months and years. Although Adam is here he doesn’t see it fully, he is here everyday so the slow slips downwards are just another day not a point to be noted. I also think if he did notice something he probably wouldn’t tell me anyway, thinking he was protecting me from by saying nothing. It is a hard one I suspect for all carers, do you tell someone that their speech is worse or not, is it helpful to do so or harmful, is it going to sound caring or feel like an attack. I guess that it is not easy to know what is for the best, and that it will be a growing issue as time goes on. I actually don’t know the answer to that, I think at the minute I would deal with being told things are worse, but as the damage increases to my brain will I be able to deal with it or react badly in the future. I put so much on Adam already but as time moves on, he will be the only one who can say this is worse, this is better, and he is the one that will be the one who not only tells me, but also the doctors. There isn’t an easy answer, I guess it will be something he will have to judge, can I or can’t I deal with any given situation. For now though I feel more in control, stronger and more able to make a day be a day not a trauma.
I am really glad that I am getting some control back not just because I didn’t want to spend the rest of my life an emotional wreck but I have my next hospital appointment on Friday to see what they are going to do about my Gallstones and what if anything has been found in the rest of the test. When I was there a couple of months ago I never thought that I might have gallstones, to be honest it wasn’t even on my medical radar and the pain and pressure feeling it causes were and are, lower on the list of problems than the terrible gut spasms I keep getting. I have all to often found that I am worried about the things that Doctors see as nothing and they are worried about something you mention in passing. I have waited a long time to get all this sorted out but I really wish now that it wasn’t this week, it seems all too much to deal with, bad timing as life often is. No matter how much I have slept in the past few days I never seem to feel any more rested after it, than I was before, getting up at 6am to be ready for the ambulance to collect after 8am is going to be fun, but it has to be done, after all I have only had this problem with my gut since December last year. 11 months of doctors and nurses tinkering round the edges and getting no where, well I have had enough of it, I need answers now not just ideas of things to try and see if it makes any difference. I just hope that this time we get closer and not be either sent of for more tests or sent home to just get on with it. Before any of that happens I do actually have to pick up the phone and book my transport to and from the hospital, well after all I have only had 2 months in which to do that and it still isn’t done. Time to make a phone call I guess.