So clinic today was hard, which for some reason seams to be the norm at the moment. Sadly my inflammation levels which they like to be between 15-20 are now 33 and my lung function is now around the 60% mark, which considering I am still on high dose steroids from my chest infection a few weeks ago, is not good. As I taper the dose down, which I will do, my inflammation levels will go up and lung function will drop. In other words, I will end up wheezy and on very regular nebuiliser's - hopefully I will avoid admission but its not looking promising as my baseline is low now, before I even start reducing.
I don't think I am getting on too well with my consultant, he spends every appointment outlining just how much damage steroids are doing, and will continue to do to my body. This would be a sensible thing to say to someone who he thinks will eventually come off steroids if they manage their condition well, but hes already said that my lungs would not be able to cope off of them and so he cant see that happening. So saying 'You need to be on this so that you can breathe, but it will wreck your body so you have no choice but to be' isn't helping!
I am also really struggling with pain management. I live with some level of pain at all times, and then when I change my steroid dose even slightly it becomes too much. I need to be doing something along the lines of exercises to help prevent mu muscles from atrophying further, but there is only so much that I can work through and at the moment my pain levels are just too high. But when I mentioned this to my consultant he wasn't particularly helpful. Well, he was more unhelpful than anything.
I have an appointment booked with my GP tomorrow who is excellent - I trust him completely. I am going to ask for some physiotherapy in order to give me some indication as to what sort of things will build up my muscles without killing my lungs! I am also going to tell him that something needs to be done with regards to pain management, and if he cant help then I need to see someone who can. If we cant make it so that I am stable off of steroids then we will just have to manage the effect that they are having on my body now and give me back some quality of life.
If that doesn't work next time I am admitted I will make a point of telling them that I have needs which will need to be assessed before I go home. That way the hospital consultants can have me seen by the pain nurses who will then follow me up, the vascular team (for my port) and hopefully put in a referral for some physio. I am also going to, depending on what doctor I see and how I feel about them, ask to see them as an outpatient, just once, and see if a fresh set of eyes will help!
I am struggling with the way they cant 'fix' me. I like to fix things, I find a problem and I like to do whatever it takes to fix that problem. But I there is no cure for this, it doesn't exist and I am scared.
I am sorry this was such a depressing blog. I don't like to make posts which are full of me moaning about my condition, but this seams to have turned into it.
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