An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won 🙂 Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.
This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.
New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.
We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).
I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.
I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.
Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both 🙂
Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.
In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly :P). Johan is finding it difficult but hopefully he’ll get used to it soon.
Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later 🙂