Archives For physio

The 3rd of May.

I have been putting this off because writing it down makes it real.

It’s been a pretty quiet, mildly shitty day. I still have this stupid dry cough which wakes me up throughout the night, although my throat is less scratchy now, which I suppose is a plus.

We went into Birmingham this morning so I could pick up my copy of the new Jeffery Deaver novel, The Burial Hour. I also needed to get a thank you card to give James tomorrow when we have our last ever appointment, and Mommy wanted a blank card to put a cross-stitch in but couldn’t find one.

This afternoon, I phoned Andrew’s secretary, Emelda, again, but he hadn’t got back to her and there were no spaces in his clinics until the beginning or end of June. At this point I got upset and I tried to explain about the wedding. I didn’t do it on purpose, but she then said she’d keep trying for me and I’d hear back as soon as she spoke to him.

Mommy then went to Grandma’s, and I watched the new Pretty Little Liars and started the book. Mid-programme, Emelda called me back, and I’ve got an appointment for 25th May, so I will “go to the ball”, as she put it. I didn’t tell her that really I need to see him much sooner because she’s obviously pulled strings to get me in there, but I’m going to have to attend the wedding in my wheelchair, on oxygen and with a giant, swollen arm. I am so tired of this. My hateful body.

The 4th of May.

Nothing like bad news from a friend to prompt a reality check. Dean had his operation on Wednesday to remove the tumour on his rib. That part went as predicted, but what the had not expected was to find new tumours elsewhere that weren’t visible on his scan four weeks ago. Obviously this has been a shock to everyone, so they don’t know what the plan will be. I am just devastated for him, for Adam, and his family. I know how it feels to relapse but he hasn’t even been in remission yet. He knows I am here, for whatever he needs, This is the worst of days.

Up until hearing this news, I was having a pretty good day. I don’t think I have coughed so much today, but I won’t get my hopes up about improvement just yet. I had an appointment at Black Sheep to see James to re-tone my hair, my last session with him! I gave him his crocheted monkey and a card with a rainbow sheep on – I thought it was the most appropriate. I was not there for so long today, he was just going over the colour again, so now I’m a bit more vibrant. It has been our best work.

Home briefly, then back out, to the QE for my physio assessment. They were very on time, so I had barely started reading my book before I was called through. I filled in a questionnaire about my pain, then a chap came to see me. We talked a little bit about medical stuff and my current limitations re: oxygen, then he wanted to see what I could do. He had me stand up and bend forwards and backwards, then sit on the bed and twist left and right. Apparently I am quite stiff when going backwards and left. I then had to lie back and do some stuff with my pelvis and legs. Basically, he can give me some exercises/stretches to try out for a few weeks, then I’ll go back and we’ll see what progress has been made. He was very impressed with my enthusiasm and determination, which made me laugh because I used to be so terrible with physios, always pretending to be asleep when they came. I learned the hard way that that is not helpful.

The 11th of April. 

Surprisingly good breathing today. Especially considering the fact that this morning my sats were 87, but now they’re 98 on air. I am very glad about this because I have had an oxygen-induced headache all day. I have managed to be off it since lunchtime, but still the headache persists. 

Rosemary came for one of her lunches with Mommy, so she and I had a lovely conversation about surgery under local anaesthetic and the way nurses have to try to distract you, while Mommy heated up the soup. When it was ready, they ate it in the dining room, while I ate my lunch and watched Agents of S.H.I.E.L.D. 

She had to go home to walk the dogs, so then we watched last night’s Criminal Minds, and were sad about Reid being in prison. I so want to read ahead to find out how he gets out (surely he must) but I don’t want to spoil it. 

Mommy went to Grandma’s, and I sat and crocheted while listening to the Pappy’s episode of Comedian’s Comedian Podcast. I also had a look at MyHealth and have discovered I have appointments in May with Mr. Titley, the plastic surgeon Miss Byrom was going to write to about me, and with the eye people. Always finding new things to fix. 

The 12th of April. 

Two good breathing days in a row? What can I have done to deserve this? However, I can only have one thing right at a time – the left eye has been irritated and blurry all day. So I can breathe, but I’m sort of half-blind. 

This morning, I was very slow at getting up, so all I got done after breakfast was sort out my appointment for a physio assessment, which will be surprisingly soon – the beginning of May!

After lunch, Mommy and I went out into Sutton. We needed multiple birthday cards, which were much more difficult to source than you might expect. It took three shops to find a suitable card for each chap. I had to get an Easter card for Grandma, and some hand cream and shower gel from Boots. Super exciting. I was quite grateful that I didn’t need to wear the extra oxygen on, because I did not feel like having to deal with the stares of all the youths who are not in school. 

When we got back, we watched The Oliviers, skipping that speeches we had not interest in, and I did some more crochet. I need to pay a bit more attention to what I’m doing, because I had to unravel a lot today because I found a mistake that I couldn’t ignore. Bah. 

The 28th of August.

I woke up at about ten to three, really angry because I’d had a dream that someone nominated me for the ice bucket challenge (it would be categorically stupid, by the way) and I’ve been pretty much wide awake ever since. 

More Photopheresis this morning, then went into town afterwards where I got a blanket-y type shawl thing and two jewellery trees from M&S as the only one I have is too full and all my necklaces are getting tangled. 

This afternoon, Grandma went back to hospital because her leg swelled up again which wasn’t supposed to happen, so Mommy went with her and I tried to make friends with Hamilton but he but me again. I think we’re just going to have to be go back to Pets at Home and just find out what happened with his previous owners, like if they had grabby grabby children. 

I have been so tired today – the kind of mood where I just want to eat all the things. Oh and a physio came to see me during Photopheresis this morning to talk about combatting the muscles wastage but we are basically doing everything we can do – squats, deep as possible, little and often. And we now have the wonderfully humiliating addition to our bathroom – it’s a frame to fit around the toilet so I can get off it more easily. 

I’m basically 90 years old.

The 29th of August.

Lorazepam day. So I didn’t get up until which was ever so yummy. I had nowhere to be, nothing to do, no brain function necessary.

Grandma’s scan revealed that she has a clot on her lung, so she’s got to go back every day? She has to have Warfarin and avoid green vegetables (which I was craving and ate an entire box of M&S’ triple layer courgette thing).

This afternoon we spoke to the Pets at Home lady and she gave us some advice regarding blankets-as-transportation so Hamilton has been out in his ball for a good two hours tonight! Plus I sprayed the bars with yucky-tasting stuff so hopefully he will be put off chewing them quite so much. We will become friends, in time. I must just dig out my patience (it’s very deep, and I don’t have a lot of it). 

Today we have gone down to 25mg of pred. Slowly but surely. I hope coming off it also helps with the fluid retention because my feet fucking hurt.

Every so often, I keep hearing Hamilton bash into something. Thankfully, the ball is secure. He is daft. 

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