Sticky Blood-Hughes Syndrome Support

Not sure what hit me!

I came down with some virus or something last weekend. Felt really good and then bang I was floored. Fever, aches, pains, nausea - the whole lot. I have spent the last week pretty much inside my bedroom aside from getting up to go to the bathroom. What a waste of one of my precious weeks in Western Australia.

I think I've almost kicked the virus into touch. It keeps trying to rear its head and get back in but I'm knocking it back so far. Today will be the first day I am venturing out in a week. It's a case of need really as the cupboards are bare and my housemate here has gone away for a few days so I'm going to have to walk the mile or so to the shops for supplies.

I'm feeling very weak and still a bit wobbly on my feet but at least I'm not feeling the sickly ill that I have been all week and am even starting to feel a bit hungry now. That's not surprising as I have had hardly anything to eat this week. Of course all of this and the paracetamol have totally thrown my INR into chaos and yesterday it was up to 7. Thank goodness for my self-test kit as I am able to keep a close eye on it now.

I'm determined to continue to make the most of my last 6 weeks in Australia but this has been a bit of a reminder not to overdo things when I'm feeling good. I do it every time and should have learnt by now but as soon as I have a couple of good months on the health front I go into a 'thank goodness I'm cured mode' and then start doing all the stuff that puts my immune system under stress like working long days and taking on too much. Need to get it into my head that when I'm feeling great I still have APS and I need to consider that at all times not only when I'm not well.

6 Replies

I hope you feel better really soon, there seems to be quite a lot of pokey virus around currently! MF x


Thanks Mary. The virus (or what ever it was seems to have gone now) but has taken its toll on my energy levels. Walked into the town today for food and felt just like after I had one of my PEs so I wonder if there was a bit more too it than a virus. Who knows but the good thing is that things are improving thanks.


Get better soon - I have felt lousy the last week and I think the Lupus is flare -ing up and then my INR goes funny and then I woke with a bad head, decided to take a self testing and it was 3.1, I am at my best at about 3.5. The lupus is probably flaring because of worrying a little. I went to Hept last week and he said that it was the Lupus rearing its ugly head - and then he tells me that the pains I have been experiencing in my tummy is due to a artery with calicification and so I am having a CT scan on Tuesday. And then when they decide i am having an angiogram!!! I am so worried, but for about 4 years experienced pain on eating and people tell me its IBS, and tell me to cut out wheat etc which I did but still the pain. I told my consultant I want it sorted it out as soon as possible so I can go to Australia for three months end of year!!!!! - I keep looking up on website and decided to stop looking as its frightening me!

I am going to Haem on Monday for test and then consultant Tuesday so busy week for hospitals.

I need some SUN - I feel better when I see a blue sky and sun despite the cold.


Hi Travelnut

I am sorry you have not had a ggod time so far hopefully you will be better enough now to enjoy the rest.



Really sorry to hear you have not been well.

I have fond memories of a trip down under to Hayman Island where I celebrated my 25th wedding anniversary and got remarried. We then got a seaplane ride over the great barrier reef which took us down and landed along side Whitehaven Beach on our own for a picnic. It then came back to pick us up and whisked us back to Hayman.

Fantastic memories and would recommend it not least because the only way to get there is by a speed boat!

Enjoy the rest of your trip and bring back some great memories too.


Just realised I posted the above twice - sorry! Confusion setting in again lol...


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