Very Scary Times......

Emzilla · 14 June 2019 at 5:45PM

Another £7.82 from Prolific has pushed me over the £100 mark.

I've just come back from seeing my boss and he said I can basically pick and choose my hours/days when I go back

. Spent about an hour there and it was lovely chatting to people. Can't wait to go back.

Emz xx

[Deleted User] · 14 June 2019 at 5:53PM

Great result Emz xx

Emzilla · 26 June 2019 at 10:29AM

I haven't posted for ages

, although I have been meaning to, just never seem to get round to it.

I was supposed to go into hospital last week, but there were no beds available. I was waiting every day for a call, thinking "am I going in today or not" and by Wednesday, I was fed up of not knowing, so told them I'll have the IVs after Wimbledon in mid-July. I'm perfectly fine at the moment, my chest is feeling good and there's no rush, so I don't see the point in holding a bed when there is no need and they are so busy.

Mind you, might have been good to go in this week as the in-laws are visiting. The less said about that the better (regular readers will know!! :mad:)

I have been earning bits and pieces, but in all honesty I have completely lost track now. I'm going to forget about adding it all up and just detail on here every day what I have done in that day I think. Much simpler and I won't get myself in a muddle!! I do know that I've got £75 in my Amazon account and £25 in PayPal though, so that's good. I'll wait until the in-laws have gone and will start knuckling down again on Friday.

Other news is I'm starting back to work on Wednesday next week. Just doing 5-8 and my favourite colleague is working that evening too, so I'm looking forward to it.

I officially started the gym yesterday too. Met my physio there and she helped me out with what she thinks I should be doing and what I should aim for etc. She said I did well and it felt good that I've finally bitten the bullet and gone there. Won't seem so scary now, and I'm going back tomorrow. I want to aim for 2 days a week to start with. I know once I start seeing the benefits of going, it will just become part of my medical routine.

That's about it. I'm off to the cinema this afternoon with my friend to watch Toy Story 4. Partly to stay away from the in-laws and partly because it's air-conditioned in the cinema!!

Emz xx

beanielou · 26 June 2019 at 3:33PM

Oh yes the lovely in laws :eek:

jwil · 27 June 2019 at 9:50AM

Hope the in-law visit isn't too horrendous.

Enjoy Toy Story

Emzilla · 19 July 2019 at 11:49AM

Hi everyone

Sorry I haven't posted for ages. Been busy with various stuff.

I went into hospital on Monday and came out yesterday lunchtime. So glad I'm out, but am feeling pretty shattered most of the time. They've upped my IVs because I weigh more now and they said my body can handle it, which I don't think has helped. So the next 11 days or so are going to be a medical blur. I started my meds (tablets, IVs and nebs) at 7am this morning and finally finished the last IV at 10.30.

So my lung function has dropped to 24%, however I'm pretty sure that's something to do with the rooms they put you in there. It's called the Isolation ward and they are all sealed rooms where you can't open any windows and they just have a ventilation system for your air. It always makes my mouth and throat feel really dry and when I have to walk around the hospital (which isn't very often), my lungs and breathing feel a lot worse than when I'm out and about in normal life breathing normal air. I've heard other patients say that too, so I'm not too worried about the lung function drop and hopefully it will go up after my IVs have finished.

They are putting me on a new drug, which is the next one up from Orkambi. Orkambi has done wonders for me in terms of my weight and keeping me stable, so I'm hoping that Symkevi (or Symdeko in the US) will do even more as it has given slightly better results. I'm still hoping for that amazing triple drug though. I've got another month on Orkambi whilst they wait for the Symkevi to come in.

I went back to work for a couple of shifts before my IVs and they were fine. Felt a bit awkward and nervy at first, but soon got back into the swing of things. It was lovely to be part of the team again and I've had so many people saying how nice it is to have me back. I'm off this week and next, but am hoping to start the shifts back up again from August.

Wimbledon was AMAZING!!! We had seats right at the front, on the side of the court, opposite the player's seats. It was a great day and everything went really smoothly with the driving up there and keeping my oxygen supply going. Even got a ride in a golf buggy!!!!

Not much else to report I don't think. I want to get the earning back up and running again once I'm feeling less like a zombie. OH and I are hoping to go on a cruise in October. I spoke to my medical team and they think it would be fine for me to go on one and actually think it would be a good idea to have something to look forward to. We would go from and back to Southampton, so won't need any flights and there's a company that supply oxygen for cruises, so that should be nice and easy to sort out. I just want to try and earn some money to put towards it, maybe enough to pay for my oxygen and the excursions. Should be easier to keep going with the earnings if I have a target and something fun to put it towards too.

My stomach is screaming for some lunch, so I'll post again soon.

Emz xx

beanielou · 19 July 2019 at 3:19PM

Glad all is ok & that you enjoyed Wimbeldon

A cruise sounds a fab idea

xx

jwil · 20 July 2019 at 5:36PM

Lovely to hear from you. Cruise sounds fab!

Emzilla · 24 July 2019 at 7:53PM

Can't wait for my IVs to be over. It's taking me around 6 hours a day at the moment to do my medical treatment and for the rest of the time the IVs are making me really drowsy, but I'm sure the weather isn't helping with that either. Get my line out on Monday morning and it won't be a moment too soon.

We've decided to sideline the cruise idea until next year. There isn't a lot of choice in terms of where to go in October/November, and it would cost us around £3k (including excursions), whereas if we book more in advance for next year, I reckon we can knock at least £500-£1k off that. Still want to start earning towards it though.

I clearly haven't got the energy to do much at the moment, but I did earn £8.50 on Prolific yesterday, and I'm very impressed with their new instant payments to PayPal, plus they have scrapped the fees, so you can cash out even if it's just a fiver

I'm glad I'll be more 'with it' before the end of the month, so I can start August afresh. I want to get some stuff done I've been putting off and will join some challenges. After Monday, I'll start making some August plans.

Emz xx

beanielou · 24 July 2019 at 9:51PM

Roll on Monday.
Take care Emz

xx

Very Scary Times......

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