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Monday, 10 March 2014

It's been a while...

Well this is my first blog of 2014, and with good reason, I don't believe in just writing my blog for the sake of it, and wanted to wait until I had something new to write about.

Since my last post, I've had various health issues, and have had yet more time off work. I've had Tonsillitis twice, which may be Glandular Fever, but the Doctor said that this doesn't always show up on a blood test...great. This would make sense, as my Glands have been swollen since October, and after the Tonsillitis seemed to disappear, I still felt really generally unwell. I had a blood test to test the Lymph glands, and that came back as slightly raised, but my Doctor said as it's been slightly raised in the past, then it's probably nothing to worry about, so to see her in the New Year. I then got Tonsillitis again recently, and she signed me off with anti-biotics.

I'm going to see a different Doctor this week though, as when I saw this Doctor last week, I said I still felt unwell, maybe the Tonsillitis has affected my fatigue, so she just signed me off, wrote 'Fatigue' as the reason, and didn't bother to check my throat or glands. Now, the term 'Fatigue' really does belittle how I feel, and is somewhat insulting - this is an illness mixed with MS related fatigue (which is not fun by itself anyway). Hopefully if it is Glandular Fever, it's something that will go away soon, I seem to get waves of being okay, and when I do I can see people and socialise (rather than doing my usual cancelling on them), so people I know don't really see me at my worse (believe me, it's not a pretty sight!)

Anyway, going on to the positive aspects of my life, things are progressing (albeit slowly), with my going on to the Gilenya medication, and I am sick to death of injecting Rebif, and have now reduced it to 2 doses per week, rather than 3, otherwise it makes me feel worse than the MS!

I was originally going to have to travel to Chertsey to take the first dose (you are admitted to hospital as an outpatient, while they monitor your heart rate on the first dose, as it slows your heart rate down), but thankfully a Brighton team has now been set up. The Brighton Gilenya team do things differently in that you have a portable ECG fitted for 24 hours (which isn't great when sleeping, as I managed to get entangled in the wires), and you have an eye scan before the first dose, you still have to be admitted as an outpatient, and have your heart monitored on the first dose.

I submitted a mammoth complaint to my NHS trust in my treatment from diagnosis until now, which got me a neurologist appointment (I should have had one anyway, but at least I got one, despite having to complain). The complaint department are yet to formally respond, even though I complained in October - someone joked I should complain about the complaints department! The woman who has been dealing with my case gave me an excuse of something being wrong with their office; I am unaware what this is, as I wasn't really listening.

In other good news, I have now moved into a flat by myself, (no more house shares). It's a council flat, so it's affordable for me with being on part-time hours, and also if the worst were to happen, and I had to retire for medical reasons (hopefully that won't happen), then it'd mean I could claim full housing benefit fairly easily. So, I am secure. Plus it's only a 1 minute drive from my Mum and siblings.

Anyway, I'll write more once I've started taking Gilenya, hopefully it will have a good effect.

Ciao for now.