Chronic illness and an update

There are so many things that I wish I had done in my life pre-Ehlers-Danlos Syndrome. Of course, I never knew I would get it at the time that I did, but as we all know; hindsight is a wonderful thing.

I came back from university today, and felt like going for a run. It's just a dear shame that I have not been very well for the last year or so, ridden with infections and GI problems, and couldn't go because I'm so weak.

My best friend has been most wonderful to me though, and I know she really deserves a mention here. Without her, I would have more bad days than good days, and somehow she manages to understand why I may be sad or upset, yet tell me that it's okay and I should move on. I'm just a very, very lucky girl, and I know it. She's also having a hard time right now with chronic illness, and her school isn't helping any. In fact, I feel like they're picking on her for it, and I feel terrible that I can't be there with her to stand up for what's true.

Another very dear friend to me has gone with her family to Disney on a Wish Trip, and I've been thinking of them all every day since they left. It's such a joy to read the updates and see photos of what must be such a happy time. It's only sad that illness is forever close by, but my thoughts and prayers remain with them in Florida, for a safe, exciting trip and return!

So, I've been put on Clindamycin as of last week (I do, in fact have osteomyelitis), and I am really bearing the brunt of the symptoms. Apparently it's a high dose, and I'll be on it for two months - I've already had GI upset, and yesterday didn't  make it to uni, as I was unwell on my way in (let's not go there...). I saw my GP yesterday and he's also sure that it's the antibiotic making me this sick. I feel weak and wish that I could just spend my days in bed to recover from what has been such a harsh week on my body. It's a shame that there are still many more weeks to come.

We are no clearer as to what comes next for treatment. I keep seeing people over and over again, but I don't want to and don't like it. My surgeon wants to get all the opinions possible but I am growing tired of being sent around, having to explain myself all the time and hear the same kind of stuff repeatedly. I also have issues with my orthopaedic surgeon and some of the letters he writes, as they portray me in a different light to what's reality and makes me feel awful about myself. I will definitely ask to be copied into the letters in future. Anyway, sorry for the long absence, I'm looking forward to the Christmas break now, and hope you are too. Lots of love x

Vascular clinic appointment

I totally forgot to write yesterday! I was trying to make this month a "blog-a-day" month, just for fun, but I've obviously failed this time. I was, and am ill with the sick bug - or at least something like the sick bug. I had to go to the optician this morning and almost couldn't leave the house, but we made it there and back! I received my parcel too, of medicines and the protein shakes that I've been told to drink. My mother bought me some tops today, four vests and two Disney t-shirts, which I absolutely love!

I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.

Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation  like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!

I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!