UVB light therapy is a lot, a lot harder than I expected it to be. Today, things came to a head. My skin has basically got worse while I’ve been having it; so painful, dry, red, peeling etc. I don’t feel human. I was told it can make your skin worse initially but for some reason I didn’t feel it actually would. I am about 11 treatments in now, I was really upset today about how my eczema was compounded by the fact I was feeling unwell in a general sort of way i.e. feeling like I was about to pass out. I told them what was happening and they got a doctor to see me who said that this treatment dries skin out and mine is indeed very dried out. I was asked if I wanted to continue with it or not. But was told if I didn’t then quite frankly I will be looking at ciclosporin/azathioprine as discussed previously to get my eczema under control. He said I really needed to keep on top of moisturising like 4/5 times a day which I’m not sure how I am going to manage. If anyone has ever been coated head to toe in thick heavy ointments then they will know how horrible it feels especially in this hot weather. I have agreed to continue with UVB for now and they’ve said that instead of leaving straight after a treatment they will cover me in ointment before I leave the hospital to combat the drying effect of the treatment. I’ve been told roughly 12-15 treatments in I should maybe feel a difference, this at the moment feels like complete rubbish as I have had 11 treatments now. I have been told I will likely need 30 -35 treatments so I’m basically a third of the way through. I hate standing in the machine with the door closed and counting the minutes, seconds in my head and feeling the heat on my skin. I think if I was allowed to take music or something inside the machine with me I would tolerate it a bit better. It’s just turned out worse than I expected, I’ve been putting off UV therapy for a long time due to some non specific fear of it then actually thought it didn’t sound too bad, but the reality I’ve found is far worse. I really hope I am still on the treatment in the next month and not packed it in and feeling better. I’m feeling really negative despite being told it can (and usually does) make a huge difference to patients’ skin. I’m just feeling right now that it’s not going to work and I really sincerely hope I am very wrong about that.
Mentally I’m not doing so great at the moment; becoming very tearful, apathetic, stressed, low mood and tired. I feel like I need constant reassurance at the moment which I don’t really get because I don’t really tell most of my friends how I really feel so I’m left feeling chewed up by it all which is so pathetic. I’ve had two consultations with GPs, first one went awful and was left inconsolable due to his insensitive and inaccurate remarks like how I am losing all my skin- that really hit a nerve and basically telling me my health won’t improve. Second consultation with a different GP was about some care coordinator thing I’d been selected for due to admissions risk which is a load of rubbish as I won’t go in, discussed DNR of all things and he decided it would be a good idea to resuscitate me in the event of whatever to which I was thinking ‘well I’m glad you think so’. But other than that I felt like I could bring up some of how I was feeling and he thought it would be a good idea to send me for bloods to check my thyroid for whatever reason. I still haven’t gone for this blood test as I’m really more needle phobic than usual at the moment for some reason.
Apathy is something I am really struggling with at the moment, I see all the mess of paper etc on my desk and my heart sinks and I go to lie down because I just feel I can’t sort it all out. It feels impossible. I’m sleeping really badly at the moment and it leaves me with no motivation for the day. I’m having some really low thoughts at the moment and I’m not really seeing a way through it all. I used to be this really determined person and now I really am not. I miss who I used to be.