it's friday


it's felt like such a long week this week. had a few appointments which have gone very well.
started a little regime that i really hope i actually stick too, it's hard though and my muscles are screaming today; let me tell you. had some tea at my mums. done SO MUCH SHOPPING, both online and my favourite type of shopping, food shopping. used my wheelchair three times only whilst out and about. looked after roxie (the little yorkshire terrier we used to have) while my auntie who looks after her now went on holiday. finally, ate a lot of food. i think that is just about it.

i have just gone looking at my "to-do list" page and i have managed to strike 3 things off today, which was quite exciting.
okay so first thing i scrubbed off was 'i want to bake soft chewy cookies like dominos' … i am not gonna completely tell you a lie, but they aren't exactly domino's standard, HOWEVER.
are they soft? YES.
are they chewy? YES.
i'd say job done, wouldn't you?

next to be scrubbed off was, 'i want to get at least one month without needing IVs' … i am very pleased to tell you that as of yesterday it has been 4 whole weeks since i got discharged from my last admission and i am still going strong off IV's. okay i might not be doing this alone, i have a little help off the oral antibiotics i have been on for the past two weeks but even that is still bloody good going for me. the relationship between me and the oral antibiotics has been very rocky. we have battled with on and off sickness and vomiting but we're still together; we're working through it with some counselling off some anti-sickness and i think we'll make it.
i had my CF clinic appointment on Wednesday and it went great. 4 weeks down and my weight is still stable and good, my diabetes is under the best control it's been in a while as an outpatient and my chest is holding up good too. i was asked what i think has done it for me and i can't put my finger on it but i can only assume it's a combination of a few things really.
1. the time of year could be a factor, there are a lot less virus's and bugs creeping round and the weather being warmer could also be beneficial for me.
2. i had a terrible 2 month admission back in May and i was totally dependant on NIV. it was really scary for me, i was coming up to a year on the transplant list, i'd had no false alarm calls and to take such a huge decline rapidly was devastating and frightening. i didn't know if this was how i was going to be until that call came and at one stage i was wondering if it would come and would i be well enough to have it even if it did. i very slowly got better and got my strength up just in time for my birthday and the massive celebration and since then i have kind of got myself into a regime of NIV overnight and oxygen all day every day. i think coming to terms with that rapid decline has helped somehow. they say having the right frame of mind can impact hugely on your overall health and i really do agree with that.
3. the doctors never usually put me on oral antibiotics, they were adamant that they don't work for me and deep down i felt they didn't either but for whatever reason. the past 2 admission breaks out i have took orals in-between and they're working. they'e keeping me out and well enough to stay out.
4. keeping busy. when i sit here and think back on my week i actually don't do as much as everyone else does. i obviously don't go to work every day or have children to stay home and look after or my own house to cook and clean in with a long list of daily day-to-day chores to fulfil but i have my own little schedule that is very health consistent but it keeps me busy for the majority of the day and then i am free to arrange and plan my late afternoons and evenings.
i am not a morning person. i have never been and probably shall never be but i have recently preferred to be waking up by 9 or half 9, from there i sit myself up have the usual morning wee, get back into bed and on the NIV and if it hasn't already started from the short walk to the bathroom then it's time to get the sputum going by coughing it all up! this is done by doing some different breathing techniques through my NIV. i usually watch youtube videos throughout the morning of physio. next it's time for a few nebs whilst watching youtube. by the end of nebs we're probably looking at 11-11.30, this is the time i like to come off the NIV because i have found that if i stay on it past half 11 it makes my chest feel sluggish. i think my lungs get used to the support and so after a certain amount of time they become lazy. i could be very wrong but that is just how it feels to me. so once the oxygen is on and NIV is off, it is time to arrange my tablets for that day and take my morning dose of insulin. i then do make-up and hair. it doesn't take me very long at all for these things. i only wear eye liner and mascara. no foundation or primer or concealer or eyebrow stuff or highlighting things or bronzer or eye shadow and lipsticks. i do curl my eyelashes though because they point down otherwise. so a line of eye liner and flick of mascara and my hair usually goes into a little messy high pony and that is me good to choose something to wear.
i am comfort over fashion so i usually throw on some jeggings, vest top, t-shirt and zip-up hoodie or cardigan with my navy blue converse. i throw everything i could possibly need from upstairs into my MASSIVE bag and trundle downstairs in time to make my dinner as it is now usually bordering 1 o'clock. After making lunch and eating lunch and cleaning up afterwards we can be talking 2-2.30 and then it's time to make some plans for the late afternoon and evening.
i am rarely at home from 4-5ish till 8-9ish.
that might sound like a leisurely day for everyone but i am literally pooped and achey by 8pm; i do definitely think it contributes to keeping me well and out of hospital though.

the next thing i got to scrub off my list was, 'i want to dress like a 1950s girl'.
for my 21st birthday i got to throw a 50's themed party that was fancy dress and we had 50's and 60's music playing all night. a hot dog and popcorn stand and a jukebox birthday cake. we had it at a place in Oldham called "The Limo Lounge" it was 100% everything i could've asked for. the set up of the venue was perfect and i would highly recommend for anyone living in and around oldham and looking for a venue for a function.

i am thinking about leaving it there for today as it seems like a big post and i don't want to bore you more than i probably have done.
not to worry though, i will come back soon, i have said it before i know a thousand times and i am always a let down but i do want to try and be a regular blogger.
it's quite refreshing to chat out everything that comes to mind and i also realised yesterday that my memory is so bad. maybe if i jot things down more i will actually remember stuff.

well thank you for having a little nosey.

new lungs?.. i'm ready for ya! ❤️

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1 comment:

  1. I always have a little nosey sophie ☺ keep fighting girl xxx