Friday, 18 July 2014

Good News!

I'm cured! No, not really but I am feeling better! My new drug is definitely starting to work. 

A month ago I couldn't get to the bathroom from my hospital bed in Hammersmith and I had to stop twice going up the stairs in my house. Now I'm probably managing over double the distance that I was before. Although when you could only walk 15 steps in the first place that isn't much but it makes doing things a thousand times easier when you can walk 30 steps without getting breathless. To potter around the house you don't really need a great deal more than that. It's made a huge difference to me. 

More than simply walking further, I feel better in myself. I still feel tired. Actually I probably feel more tired because I'm doing more but I'm not in pain anymore. My tummy swelling has come down a little. Not enough to stop me looking pregnant but enough to ease the pain, which was the main problem. I feel like I can concentrate better now, probably because I'm actually getting oxygen to my brain. I feel safe enough to drive now and I've got my seatbelt exemption, which just makes things a thousand times easier because the belt hurts my pacemaker on one side, my line on the other and the strap across my stomach feels like I'm being squeezed to the point if explosion because of all the swelling. Obviously continuous flinching and rearranging my belt doesn't make me the safest driver so I've held off till I've got that. I still can't go wherever I want because I need someone at the other end to help me get around but I'll be able to see my gran whenever I want and take her out. It was brilliant for when my boyfriend came down because we were able to go out quite a lot. Bit of shopping, a trip to the cinema, lots of meals out and a day in the country village Painswick - can't get a much better week than that!

Even though the Flolan is helping in a huge way, I'm not massively keen on the side effects. My cheeks are swollen, I have rashes all over my arms, I'm permanently hot and I keep getting these weird hallucinations at night that my random body parts are growing and shrinking really fast. It's hard to explain, think of Alice in Wonderland and the "drink me" potion. I have to get up turn the light on and wait for it to pass. I keep forgetting to mention this to everyone because it only happens when I'm trying to get to sleep at 1am. It's only the rash that's a bit too much for me to cope with and I think that's mostly because it's so hot here in England. I've tried steroid creams and two different allergy drugs from the doctor but nothing is shifting it. I'm waiting on advice from Hammersmith but I think I'll have to lower my dose to get rid of it. I'm not sure if it's the Flolan but my hair is falling out like mad. I haven't got any bold patches or anything but the amount of hair that comes out when I wash my hair is scaring me. Everytime I run my fingers through my hair a good ten strands fall out and I notice it on my bed sheets and clothes too. Hopefully I still have some hair on my head a few months from now!

The fact that it's working is brilliant because it means that when the call comes it's going to be a lot safer than when I'm weak and sickly. So I think it's worth a few side effects for that! 

I've had a really nice week, itchy rash aside. It's been busy and I feel a bit wiped out now but it's refreshing to feel tired from actually doing something rather than spending all week resting and still feeling tired.

I've got a few blog posts in mind for the next few weeks so stay tuned!

At the Rococo Gardens in Painswick in the boiling sun! 

Proof there was sunshine in England this year! (My city managed to have a flood and a drought at the same time a few summers ago!)  


  1. Hey Lovely, I have yet to find anything that works on my rash and mines not too bad. My friend Erika also has the rash and she hasn't fund anything that works either. Hopefully they'll find something that eases it for you though :) I'm pleased it's making life easier for you in regards to walking a bit more and stuff :-D
    Much Love
    Stacie xoxo

  2. Good to hear I'm not alone! The cooler weather has calmed it down a lot so perhaps I'll only suffer in the heat. Thank you! It's great being able to get around easier :) x x



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