Archives For ache

The 21st of September. 

Yeah everything hurts. Literally every muscle. I just got stuck in the middle of the living room because it hurt so much to move my legs. Mommy has found it all vastly amusing and has been laughing at me all day. 

This morning I did very little seeing as moving was so agonising, but this afternoon I had to extricate myself from the armchair because we had to go to the GP for our flu jabs. When we arrived, they weren’t actually open yet and people were queueing outside. Thankfully we didn’t have to wait too long before they opened the doors to let us in. We were told to have our left arms ready and Helen called our names. We both got jabbed and off we went!

When we got home, I looked into the whole blog-hosting thing, and it seems that SquareSpace don’t do domain transfers yet. Seeing as I just got a bunch of business cards made with my website address on, I kind of need to keep it. I still think I’m going to do an overhaul of the site but that can wait. 

When I came back downstairs, we watched the final episode of One of Us (I worked out the twist about two minutes before it was revealed) and I complained about being freezing. Thermal vest, jumper and cardigan. 

The 22nd of September. 

Today has been marginally better. My movement is about 2% better. Seriously, I am broken. I have actually tried not to move because I can feel how stiff I am and I know when I do have to get out of my chair, it’s going to be excruciating. 

Our only trip out today was to the Women’s Hospital for my follow-up appointment with the specialist nurse to see how I’m getting on with the dilators. She is very punctual – 1.45 on the dot she called me in, I didn’t even have time to open my book! She asked how it was going and I said not well; I am still on the first one and feel like I’ve made no progress at all. She asked a couple of questions to make sure I’d been doing it right and I have, so we had to go to an examination room. Jeans and pants off (with difficulty), legs akimbo, and she had a feel (it was more professional than this sounds). She said it feels quite badly stenosed, which is something you can get from radiotherapy or chronic GvHD, but to determine as to whether it’s that or muscle spasm, I’m going to have to have a general anaesthetic to be examined. So that’s fun. I do like the magic liquid sleep. 

Since getting home, I have stayed in the armchair and crocheted. I really want to stretch out on the floor but I’m not sure I could get up again. 

The 21st of October.

I feel like hell. It took me hours to get to sleep because I couldn’t stop coughing, and this morning it took about an hour for me to get up and dressed. 

I’ve basically not moved from the armchair because everything is massively difficult. I’m not sure how I’m going to get back upstairs. My abs, ribs and back ache so much, every cough is painful. I’m quite glad I have photopheresis tomorrow so they can take samples of the cack I’m bringing up and then see if it’s a virus or something they can actually treat. 

I am so tired. I need to go upstairs really early because last night it took me forever to actually get into bed. 

The 22nd of October.

More coughing. I had a Zopiclone which I think was beneficial, and I’ll do it again tonight. 

I had to move out of the armchair to go to hospital for photopheresis. They gave me a sample pot for anything I bring up (unfortunately nothing has come up far enough so far) but they also took bloods and a viral swab so they might show something. They showed that my haemoglobin was 8.4 though so I’ll be having a bag or two of O-neg in the morning, meaning I have to get up early tomorrow so that just fills me with joy. 

Ugh I just feel like shit because I’m exhausted and all my muscles and bones ache from the coughing. And I’m not even allowed ibuprofen because I’m on steroids! And we can’t taper the steroids while I’m poorly because that’ll make the gvh kick off more!

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