Wednesday, April 25, 2012

A quick update

This is James posting on Janet's behalf: Janet has been in The Wesley Hospital for the last week with a vestibular migraine, massive nystagmus and general dizziness/nausea and vomiting. I've been posting updates on how she's doing over on my blog at under the 'health' category.

Wednesday, April 4, 2012

The lows of rehabiliation

I'm still here, I just haven't had the writing mojo lately. After being so excited to be beyond what I thought was the time frame for further radiation symptoms, these past few weeks have been hard.

Two weeks ago I went to the UQ Neurology and Balance clinic. They did all sorts of test like making me stand with my eyes closed, walk with my eyes closed, move my head back and forth and so on. All of the things I have been avoiding for the past few months. I scored well on these tests. However, I scared myself. I was working very hard to stay upright, to keep moving. Subjectively, the dizziness was severe. And I paid for it the next day - I was simply exhausted. I also felt overwhelmed, demoralised, and dejected. I don't feel like I've really recovered since then.

I am supposed to do head turning exercises and walking up to 5 times a day. I simply don't have that time with the kids around. Nor do I feel like I have the energy. After one week (which was already busy as it was Angus' birthday week and party) I couldn't see any improvement. The next physio session was just as challenging, however the next day I didn't feel quite as shattered. Since then I think I can see some improvement.

Then on the weekend I had another setback. I developed an intense pain in my ear and at the base of my skull - just where blobby is. I could feel a real pressure sensation in my ear. Sunday morning I started vomiting so of course my paranoia levels went into overdrive (given that vomiting can be a sign of increasing intracranial pressure). We found a GP to just check my ears for signs of an infection, which was negative. I was then left with the option of going up to emergency, or just waiting it out. Thankfully the pain eased. However it is still there. An offhand comment from a friend has made me wonder if it is actually musculoskeletal from the exercises, so I have decided to give them a rest and see if it improves.

I hate this paranoia. I am scared about everything. Another friend did put this into perspective though - I had some symptoms which no-one thought were serious and it turned out to be a brain tumour. Of course I'm going to be paranoid about any twinge or niggle.

Right now I feel I'm in the doldrums a bit. I can't see that my symptoms will improve. I don't know if or when I will feel comfortable with blobby being there. I know I need to work on my new "normal" but I'm not ready to do that yet. I am actually more fatigued now than a few weeks ago, so I'm not sure if the radiation is still affecting me, or whether this is just how I'm going to be. I still feel like I'm "sick", which I hate.

I'm hoping that some fun easter activities we have planned will break this cycle. One silver lining I can take from this is that my empathy as a health professional will have increased dramatically. I can now truly appreciate how hard rehabilitation is (not that I didn't realise before, but it is different from the patients side).