A little setback

I saw my neurologist today for my monthly review, and he was a little bit concerned with me. This hasn't been a good month - I've had several bad days, the nausea has been persistent if not increasing, and the dizziness is still present. On examination today I also had some nystagmus and my thumb tremor (although that is now coming and going). He believes all of this is still related to the swelling, and that it is likely the swelling has increased again. So he wants me to increase my dexamethasone dose, up to 2mg a day. My neuro didn't really offer a reason for the increase in swelling, but that it can happen, and we just need to take our time with lowering the dex dose. (I've actually read on Dr Google that the swelling can come and go for no real reason).


But my neuro remains optimistic that I will get back to "normal". I mentioned to him that I was thinking about going back to work but he actually advised me not to until at least the start of the new year (obviously depending how I feel then). I was hoping to be able to start earning some money again! He thinks I will still be on the dex until early next year. So he wants me to have another MRI within the next two months. I also need to have a bone scan, just to check for signs of osteoporosis since it can be a side effect of the dex. I've also got a script for an antacid to combat another side of the dex, crippling heartburn. Stupid (lifesaving) dex.

One other thing that my neuro confirmed today is that losing weight on the dex is a near impossibility. Due to it's impact on the cortisol levels, I put weight on around my trunk, face etc. And it doesn't want to go anywhere. I've been a bit focussed on my weight these past few weeks as I don't like what I see in the mirror. I guess I have to learn to just be grateful with what I see staring back, as at least I can still see!

I'm quite disappointed at all of this, but also a bit relieved. I have been struggling these last few weeks and I'm over feeling nauseous. So increasing the dose will hopefully help with that. However, to have a setback is a bit of a downer, and unfortunately makes me a bit anxious that I might get even worse. I just have to remind myself that even on my bad days, I am so much better than what I was 4 months ago. I might just cheer myself up by thinking about Unicorns. Ones that poop rainbows. Yes they do exist.

Unicorns pooping rainbows   (clipped to polyvore.com)

A simple task

No-one ever likes housework, but once upon a time it used to be a simple task. Get in, clean bathrooms/vacuum/make beds, all done.

Now it goes something like this:

Me: Lets go and change the sheets
Children: Yay! (all run upstairs)
Charlotte: Can I jump on the bed?
Me: No, get off so I can take the sheets off
Charlotte: here I'll help (pulls everything off and dumps it on the floor so that I then have to sort through it)
Me: Where's Angus?
Charlotte: I'll go find him. (scream). Found him
Me: Don't squash your brother (runs up the hallway, separates children, goes back to room).
Me: Lets find some clean sheets (rummages through cupboard, silently curses my lack of organisation of linen cupboard. Vows to do better but know it won't happen anytime soon.)
Charlotte: Mum!!
Me: What
Charlotte: MUM! (Door slams)
Me: Where's Angus? (run up to the bedroom, remove Angus from en suite bathroom, return to bedroom). Let's put the sheets on the bed
Charlotte: I'll help. (Jumps on the bed).
Me: Charlotte please get off so I can make the bed. Where's Angus (I shake out the sheet: THUD; Scream) Ooops, there you are Angus. Sorry.
Charlotte: (runs off). Mum! Angus
Me: What? (goes to investigate. Find Angus with his hands in the sudocream pot, and with cream all over him.) Sigh. (clean up Angus; must remember to shut all bedroom doors).
Me: OK, lets finish. (places all pillows back on the bed. Charlotte jumps on bed and throws them off.)
Me: Time for a cuppa and then the vacuuming (sigh).
Charlotte: Yay! (sigh).

Our house

Our house is on a nice street, in a nice suburb. There are nice trees around it, and some nice parks. We can walk to our local shops which have nice people in it and the local schools are nice. Our neighbours are - mostly - nice. I can't see us moving from our house for a long, long time.

Yet I wish there were a few things I could change about our house. We have been here for 5 years now. I remember when we moved in we had so many plans. I even wrote them down. We had some short term plans (things to finish off within 12 months), some 5 year plans, and one or two bigger things that could wait a bit longer.

Well....I threw the list out a while ago. We had only crossed off one or two things. Unfortunately, we had some unexpected expenses (called Charlotte, Angus and blobby!) which put a dent in our renovation plans. We did spend the first year fixing up a lot of things that you never think of when you buy somewhere (we installed new guttering, resurfaced the roof, and fixed up some dodgy electrical work). And there were a few big things that we did manage to do. After the first summer here with temperatures in the upstairs bedrooms reaching 32 degrees, we installed ducted airconditioning. And of course we managed to renovate James home office. So I really should feel happy with what we've achieved.

But....I want a new kitchen. And a new bathroom (the shower screen is held together with duct tape). I have some grand plans to renovate the laundry, and I would love an outdoor kitchen (with some new paving too). I might need to make a new list. In the meantime, I am doing some renovation ogling, and a little bit of dreaming. Hopefully nothing else happens in the next five years to derail our plans!

Not my kitchen, but wouldn't it be nice!

What dreams do you have for your house?

Blobby: 1 Me: 0

Today blobby got the better of me. It's been a while since that has happened so I really shouldn't be too upset. However today I had a little cry about it all.

Last night I went out, to meet some lovely people, and had a nice dinner. This was the first night I have had out by myself in....a very long time and it was nice. The food was great, the companions great. But I felt like a bit of a fool. Because my words don't work. I had to work so hard to try and speak clearly. Many a time I simply couldn't get the words out, even though they were at the tip of my tongue. I know what I want to say but I have to stop and think. Not only that, but paying attention to the conversation in a busy restaurant was very challenging. Either I couldn't hear properly, or the room was a bit spinny, or I had a bit of delay to process what was said. This was probably the first time I've been in a situation like this, and I truly wasn't prepared for how hard it all was.

Of course it was a late night, and there is a reason why parents don't go out very often. Angus was stirring when I got home (around 11.30) so it took me a while to get to sleep. Then Charlotte was up at 2 needing something or other. Then Angus woke up for the day at 5.30 am.

And sometime during the night I woke with an excruciating pain in my ear. Just like when I started to get sick. In the morning, apart from feeling shattered, and nauseous, I also had a blobby ache. Both the ear pain and the blobby ache have been resistant to pain relief although after some therapeutic baking and an afternoon nap I felt less sick.

So today I am a teensy bit paranoid that I have overdone it, and that I am on the edge of having a massive vertigo attack. Or that it means the swelling has gotten worse. I hope that it just means I am simply tired and a good nights sleep will sort things out. But to say that I am frustrated, and angry with blobby, is an understatement.

On that note I had better head off to bed and hope for a better day tomorrow. I have promised Charlotte that we will make a collage picture and I need to have my wits about me if I am to supervise her and Angus doing that!

6 months on and moving on.

It has been 6 months since blobby was zapped. To say it has gone by in a blur is an understatement. I am revelling in every day that is slightly better than the one before. I am still having bad days, and I am far from "normal", but when I think back to how I was 6 months ago,  I am so much better.

However it is time to start thinking about the future. We've already started getting back to a normal routine with swimming which is great. After the diagnosis I really went into hibernation mode. A lot of the time I felt too sick to make plans, or I was too anxious to organise something in case I then didn't feel up to it. We have hibernated for the last few months, almost deliberately avoiding people. But now I feel able to make plans, and just see how it works out. I'm sure there will still be bad days where I am not up to doing anything, but they are getting fewer and fewer.

I have even made some plans for weeks ahead. Something I haven't done for a long time. A dear friend is getting married in September and James and I have booked a night at the hotel where the wedding will be. Eeek. Scary. Not only have I committed to something weeks in advance, but James and I will have our first ever night away from the kids (not counting hospital stays).

And we are planning a bit of a trip to visit our new niece and catch up with family and friends. That will be a big test for me. If I can cope with that, then I will start to think about returning to work. The thought of that is actually quite exciting, so some big decisions to be made in the coming months. I obviously have to be well enough - there is no point in exhausting myself just so that I can return to work. I always get a bit surprised at the things I can't do. For instance, today was a good, but busy day and now I am tired. I am strugging to write this, so please forgive my poor grammar and blurbiness. And that is annoying; to realise that I'm not 100% yet.

But in the meantime, if anyone is up for a playdate, I will book you in!