Thursday, 28 May 2009

Puffy, Tired and Whingey!!!

Over the last few days I think everything has definitely caught up with me. My brain is still as active as it has ever been and I forget (or at least try to) that my body can't keep up with it.

One minute I can't sleep and am awake at 3 am, the next i'm sleeping all day and all night (except for the obligatory midnight run to the

I thought once I dropped to 5 mg of the steroids my swollen, bloated mass that masquerades as my body, would start to go down. It's been 4 weeks now since being told not to drop any further and staying at 5mg and I can't really see any difference at all. I know I shouldn't really whinge as at least on the steroids I can kinda breathe ok and am relatively mobile (to an extent) but i've gone from a size 10 to a 14/16, i've developed the most horrendous stretch marks and the appetite the size of a man twice my size (which i'm having to be really careful with so as not to spread my bulk any further). The only real positive is that I know have the most enormous I've gone from a 34A to a 38B....which hubby doesn't mind so

I just think it's not the best start to married life for my wonderful hubby, although he keeps telling me that i've never looked so beautiful......think i'll book him into

Anyway, my step dad has now finished playing and having a whale of a time redesigning my greenhouse and building a bench to potter on and we now have tomatoes, sweetcorn, lettuce and strawberries growing as well as a few plants that need starting off before being put into my garden (will try and get some pics for my next blog).

My sister and 2 of her mother and baby friends turned up today to go for a "swim" with the babies in my hot tub which has totally knackered me out but my sister has persuaded me to go out with her tomorrow (think i'll need my wheelchair though) to do a bit of baby clothes shopping followed by an evening with one of the other mummy's who's holding a candle party. Well it's a night out and a glass of wine.....which I think after the last few weeks I may treat myself to as I don't drink that often.

Well i'm off to start my evening round of meds. Just want to also say well done and big congrats to Jo for getting through the assessment process and being approved to go on the transplant list for some new lungs. I'm so happy for you Jo, hope you don't have to wait long babe.

Blog more later


Tuesday, 26 May 2009

Bank Holiday Blow Up

Well as usual I over did things over the bank holiday and am now paying for it.

I first started with organising and preparing for my brothers 30th birthday. Making trifle, blamange and banoffee pie as well as organising everyone else to bring the usual sarnies, sausage rolls, pasta salad, mini sausages and lots of other party foods was a huge feat. By the time everyone turned up with their plates and it was all put out I was ready for my

Anyway a good time was had by all and even managed to get a reasonably early night.

Just as well as hubby and I decided to empty our garage and other junk we've been storing at a boot fayre on Sunday. This meant early morning, so 6am the alarms went off and by the time we got to the boot fayre it was already 3/4 full! What time some of these people got to the fayre I don't know but they must be mad. Anyway, according to the fayre people it was the biggest fayre ever with the rest of the field filling up with stalls after we arrived. Considering we got rid of a load of stuff that we were originally just going to junk at the tip we made approx £150.......all going into the extension fund. To top it all off, come midday we were done so headed home for a well earned rest in front of the box watching Jensen Button storm to victory in my most favorite place on earth, Monaco. (If you ever get the chance to go, it's a must....just an amazing place).

Monday was a completely do nothing day. My body had blown up again (thank you steroids) from over doing things over the last few days. I now look liked a cross between the Michelin man and Jabba the Hutt, and I just felt permanently tired. I pretty much napped all day and then slept all night.

Today i've still been pretty wiped out. My sister however, phoned and begged me to help her and take her to Canterbury, so she can buy a baby mattress, as little Isabella is not so little anymore and has pretty much out-grown her moses basket. So after running around after her (in the purely metaphorical sense) i'm now totally zonked out.

I still haven't heard from the Brompton yet about my assessment chat. Might give them a call in the next day or so.

Well that's me all up to date......time for some more meds, then and then an early night.


Thursday, 21 May 2009

Naughty Me!!!

Sorry for not blogging sooner but life has been utter madness for the last few weeks.

Between cooking cakes and making party food for my sisters party, granddads party, as well as for my hubby's party, clearing out the house (going to do a boot fair this weekend) in readiness for our extension build, which hopefully should start next month, getting poorly and getting more antibiotics to try to stabilise AND a visit to the Brompton to discuss the possibility of transplant, things just haven't stopped.

I made the most enormous chocolate fudge cake for my hubbys and since then have been taking orders from friends and family to make cakes for My mum has even entered me into the local horticultural show next month so i'm doing lots of practice runs, much to hubby's delight.

Am holding a party for my brothers 30th this weekend and as well as cake, am making bannoffee pie as it's his favorite. The things you do for families

Anyway, went to the Brompton on Tuesday and my lung function had dropped a little bit (25% from 27%) but i've also dropped my steroids from 12.5mg to 5mg so they were happy. I've put on a little more weight but they think that i'd put on a lot more and have begun to loose it from the steroid reduction. They confirmed i'm probably suffering from sleep apnoea, but that should ease as I loose the weight.....fingers crossed. They also think that by staying and maintaining on the 5mg of steroids the breathlessness should ease and I should hopefully stabilise.

We discussed the options of transplant and they think now is the time to go for assessment. So as the Brompton does assessment in house, i'm waiting for my cf nurse Mille to phone me with a date to go up for the 1st part of the assessment which is a 2 hour chat and "presentation" from her. Then it's onto the 4 day assessment of tests, hopefully in the next 6-8 weeks.

With all this going on i've also got my in-laws coming to stay for a weekend next month and the start of our extension happening, so it's still all go.

Anyway, I will leave it there as i've gotta go and take a couple of nebs before bed....the joys of

Night all xxx