Half of the mornings, when I get up, or am gotten up by the little one, the first room I visit is the lounge room – which has the lovely view featured in this picture. The front room is pretty small but feels bigger because of the large windows. Yet some days this room feels tiny. At least half of the mornings recently, the room feels small and closes in around me. I never really know which way I’ll see it until I do.
When I wake (or am woken) the first thing I do is a roll call of my body; how’s my back ache? Are the pins and needles still there? How exhausted do I feel? And then the preparation for the day begins with some maths… I couldn’t get to sleep well last night and I have to work today but not tomorrow so that means I might not be able to spend time with my daughter this morning… if I want to get through it all, I better take her to care and rest up in the middle of the day so I can make it through my late shift tonight. It’s ok, I tell myself, plagued with mummy-guilt on top of it all, I can spend time with her tomorrow – as long as I rest tonight.
It’s all a weighty recipe for some sort of ‘getting through it’ – trying to accommodate all the things I can in my life. I read the blog of the lady dying of cancer I mentioned previously, who expressed remorse at having sent her daughters to care when she was well, just so she could have a break. She wanted those days back. I’ve been like this all year and I’m starting to feel pretty annoyed about it all.
My visit to the doctor the other day had another revelation of sorts. Before she spoke of the anti-depressants used to combat neurological symptoms, we reviewed my blood test results. I had seen some studies online linking people who have had glandular fever (mononucleosis, Epstein-Barr virus) and had a subsequent viral infection that has overloaded the immune system and resulted in months of fatigue. These studies suggested anti-virals could remove the burden of the viral load and with it, the fatigue and aches and pains. I apologised to my doctor before bringing this up, saying ‘I’ve been Googling’ but it really stuck with me – another tablet that could help. I think I’ve mentioned previously that the blood tests revealed a positive result for EBV which I had remembered as a previous infection and when I visited the rheumatologist he took the only copies of my tests that I had, but when we looked over them together on Monday, my doctor surprisingly said ‘Oh it shows recent positive for EBV’ like she was surprised as well. The note from the lab had mentioned the levels were low enough to consider a past infection. But this has stuck in my mind since the appointment and I am going to request my blood tests be emailed to me so I can look over them again. The doctor dismissed me in a polite way, saying it would be difficult to work out which anti-viral to treat me with since they are quite specific to each virus… but as a friend asked yesterday ‘ would it hurt to try?’.
I’ve been thinking all week about the Cymbalta suggestion… and even though the research suggests it may relieve the neuropathic pain symptoms I have, the thought of starting taking them feels like having brain surgery to relieve a headache.
I have a follow up appointment with the rheumatologist next Wednesday and while I’m really not sure it’s his area, he seemed to really enjoy talking about the affects of arthritis symptoms, and he saw the possible Parvovirus link so I wonder what he might make of the ant-viral suggestion too. It’s worth a try.
Make that, it’s DEFINITELY worth a try. I’m starting to feel like I’d give anything just to wake up and not think about anything. To walk into my lounge room and not notice it.