Still on that boat…

Strawberry blonde in a dizzy world!

Ups and downs

May29

Sorry for the comms down I’ve been a bit too fed up with it all and I didn’t want to bore people with the same old same old. It’s certainly boring me! The treatment has been really tough and as this is my ‘break’ protocol I’m a bit concerned about the protocol being ramped up next month. I can’t even think about that when I’m feeling so pants now.

I can’t totally complain though. I had a lovely ‘night off illness’ where I had a great night out for my birthday seeing a cover rock band. There is nothing like a bit of Jon Bonjovi to make you forget your troubles. Well a few troubles caused by multiple really odd guys in stripy t-shirts but that’s another story. We still managed to have a really brilliant night out.

I also managed to get to a friends wedding. I had decided not to go as I didn’t want the pay back and the risk of a ‘power down’ was quite high. Then at the last minute I decided sod it, this illness can’t rob me of EVERYTHING and I got there just in time. It was worth it. Oh dear I was sporting the ‘eyes in different directions’ look – I don’t think it will catch on!

Things are not great now. I’m having some horrible side effects from the drugs so not only am I all over the place my face looks like I’ve had a chemical peel. My chest and shoulders have flared up with something crazy i.e. unidentifiable on Google. I look like a spotty teenagers’ forehead is on my chest. I call it my frackne (front backne).

I tried to go out the other night. Once again to try and have some normality. Big mistake this time, huge! We went to Café Rouge for the evening as we have not been out for ages. More like ‘Face going Rouge’! I had a ‘powerdown’ as soon as I walked in. Going down like a sack of potatoes meant that the ‘event’ wasn’t exactly discrete. I had to be dragged to the side so that people could get in and out – it was all very dignified! Needless to say we left and I’m NEVER EVER setting foot in there again.

So I’m not really looking forward to adding in more drugs. Fortunately (or unfortunately depending on how you look at it) I have a holiday booked.  Its slightly concerning that I can’t even make it out for dinner without disaster. Hopefully I can have a nice relaxing time before bringing on the big guns.

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Hi, My name is Susan and in 2010 I suddenly got very sick with vertigo and extreme fatigue. My life as I knew it changed forever. I had to leave my job as a junior Doctor to move back home with my family as I was unable to look after myself, let alone other people. It took a very long time, about 2644 doctors visits and ALL the tests to be told ‘congratulations, all your results are normal there is nothing wrong with you’, which was the most devastating news of all as there clearly WAS something horribly wrong, we just could not identify it.

 

Eventually, I was diagnosed with Chronic Lyme Disease which was great news as I finally had a reason to feel so ill. That was until I realised that there is no real recognised treatment and I was once again left to trying to navigate debilitating symptoms alone. More doctors, more tests, protocol after debilitating protocol and plenty of ‘ah ha’ moments later I finally started to heal. It was quite the journey and I have learnt a lot about what treatments are out there, and perhaps more importantly, the body’s amazing capacity to heal. I am now in a position where I want to help others to reclaim their health.

 

@still_on_that_boat