I’ve been letting my emotions run crazy today and I am in need of a release, I don’t really want to burden anyone in particular with the worries that are going around my head so I’ve decided that I’m going to get a bit more private with this blog and share some of my emotions.
I think it’s always easier to say things online or by text rather than to someone’s face. Or, at least for me, it is easier for me to tell people things when I am not face to face with them.
I think it is for this reason that I struggle to tell my family that I am in pain or I am struggling because of the pure fear of them not believing me. Don’t get me wrong, my family are usually quite supportive and concerned if I say that I am sore, but I have this fear that is embedded deep inside that they won’t believe me and I will be alone with my pain. I don’t know if it is because I have heard so many horror stories about health care professionals and patient’s families not believing that they are in pain or if it is because I don’t want the pity looks, but something stops me telling them how I feel.
Tonight I’m not having a good time pain wise. My hip is pretty warm and pink and is really sore, my ankle is aching like crazy and I also have a headache, which is probably from painsomnia. Mum has asked me what’s up and I just told her that my hip is sore, she said that she could feel the heat coming off of it when she was sat next to me on the sofa (she was sat really close so it’s not like my hip is burning hot).
And so that might sound like I tell my parents a lot, but thy don’t know about my ankle or my head and they don’t know about yesterday’s or today’s asthma attacks. That’s another thing that I really struggle to talk about. But I think the Symbicort is working fairly well, I’ve had 3 attacks in the 4 weeks since I upped my Symbicort to 3 inhalations twice a day which I would say is pretty good going. Baring in mind two of those attacks were pretty mild and happened within a day of each other (I think I may have pushed myself a bit to far) I would say that I am happy with the progress I have made on this dosage.
It’s not only my family that I struggle to talk to, my friends and health care professionals are really hard to talk to too. I mean I am petrified that my rheumatologist won’t believe me and will just take me off of her service. I have told mum about this and she says don’t be daft but this is a real fear of mine. I have had joint issues for so long, 6 years now, and although my blood does indicate juvenile arthritis, I still don’t have a diagnosis because I haven’t presented with swelling or warm/pink joints. Up until Easter I only had pain and stiffness so I am really hoping that these new symptoms will help me get a diagnosis, although I haven’t seen my Physio or rheumatologist for ages! I haven’t seen my Physio since Easter and I haven’t seen my Rheumy since December and I haven’t really heard much off of either of them. And that makes me feel even worse because at the moment I don’t have anyone “on the inside” fighting my corner. So I guess it is up to me, I’m pretty certain I am going to get the guts up to phone my phsyio tomorrow and ask what is going on, especially because I have lost a fair bit of movement in my right ankle (the picture shows how far forward my ankles will move. Note the difference between the left and right ankle flexibility)
So thanks for that guys, I feel like I have got a huge weight off of my chest but just letting everything out.