Thursday, 31 October 2013

Feeling like you're drowning is the worst feeling

Sorry it's taken a while to write this blog but I've been so ill past few days and just not had the energy to focus and type.
It's hard to explain to people how it actually feels when you're struggling. I think people assume that it's how they feel when they have a cold or just think "but you deal with it all the time so surely you're used to it?" But you're not and with each tiny breath you hope that you'll bounce back quickly and wont deteriorate any further.
On Tuesday they admitted me in to Frimley, I wasn't too surprised as I'd had an extremely rough weekend and although I kept a smile on my face I knew that I was heading for a little stay so it wasn't a shock.
I'll start from the beginning..Last Thursday I came home from work with a cold starting & by Friday evening my cough was all the time, I couldn't go more than a minute without coughing. 9am I was exhausted so went to bed. I woke up at 2am with that all too familiar feeling of a high temperature. It was 39.1 and stayed like that for ages but eventually it started to come down but it took until 4.30am to get to 37.7. I just really couldn't breathe well and that took it out of me. The exact same thing happened all weekend, my chest felt like it was full of glue and was so uncomfortable to breathe; it sounded like I'd inhaled a bowl of rice krispies. I managed to get out for my best friends 21st on Saturday evening as it was just a meal so I could sit down and relax, didn't have to be running around anywhere. 
In clinic on Tuesday we found out my lung function had gone from about 2.3l (65%) to 1.3l (37%) so I was not happy at all, it's a massive drop in such a short space of time (a week). Feeling like you're drowning is the worst feeling. Dr Ho put me on IV meropenum and IV aztreonum and I managed to get a room in the evening. I had a little bit of O2 on the first evening as my SATS were a bit up and down and it helped my lungs along. 
You can't always explain how horrible it all feels and I wish someone could feel what it's like, just for 5 minutes, so they can get some perspective. 
At 2am Wednesday morning my poor night nurse woke me up, "I'm so sorry, they want you to come for your x-ray now" - apparently the radiographer who'd had my slip for ages decided that 2am would be a fabulous time for me to go. I was not a happy girl! And when I got back there were lorries outside my room unloading things and beeping so I didn't get much sleep at all that night.
Dr Ho saw me this morning and said he wanted me on some steroids (pred), much to my disgust..I hate steroids with a passion. They make my face so rounded and make my moods all over the place. But if I need them then I'll have them. I did ask when I can go home as I previously had said I'll stay in if I can go home by the weekend and he said he'll see me tomorrow and if I am improving maybe tomorrow or over the weekend I could go, but he really wants these huge coughing fits to ease up a bit as just as he walked in I was throwing up from coughing so much! 
Fingers crossed that everything starts improving and I can finish the course of IVs off at home - I'm having patches where my breathing is easier so that's a promising sign. The physio said we might try 'the bird' which is a machine that pushes air in to your lungs to help you breathe so will hopefully expand my airways and help shift all the mucus that's stuck.
Happy Halloween :) 

Saturday, 19 October 2013

Progress & exciting things

First thing! After a month of mucking about with various tummy meds Dr Higton reviewed my latest xray on Friday and said that the blockage is pretty much gone, finally. You would think it would be a massive relief, and in a way yes it was - I was glad I could go back to work, have my driving lessons and go out with friends, Tom & family. However my heart did sink a little; why am I still bloated and in pain? I look pregnant when I've eaten, have stabbing pains and am always so full up. Dr Higton and I had a chat; she said that my stomach could still be irritated or it could be more like an IBS type thing. So she suggested I take some peppermint tablets, carry on with a smaller dose of the tummy meds so I'm able to go out, work and everything and if in 3-4 weeks it hasn't got any better or gets drastically worse they'll refer me to a stomach specialist as it could be an intolerance to certain foods (although I get it no matter what I've eaten) or another problem that she cant identify. 
Fingers crossed that it's just irritated and the peppermint tablets, lots of water and exercise stop it all and I can get back to looking normal and not like I'm expecting! 

Second (much more exciting) thing! Mum and I went to our cocktail masterclass last weekend, it was amazing! The guy who hosted was hilarious. We enjoyed 3 cocktails that he made and then we were let loose behind the bar to make our own cocktail! Mine was crushed fresh strawberries, vodka, sugar syrup, gingerbread syrup topped up with champagne. It was really interesting the things they told you - about the how the freshness of the ingredients make a difference, how you need a certain percentage of alcohol and the quality of the alcohol too. 

I've wanted to get back in to swimming for a while now but every time I plan to go I end up ill. Finally I managed to get there yesterday. Pretty pleased with myself, I managed 1 length, then a break, then another length & so on and carried on for about 20minutes. My plan is to work my way up to doing more lengths in one go and staying for longer - it's a bit heartbreaking as I used to be able to swim for ages, just fast strong swimming and no stops. And now after 1 length I'm puffing away and having to stop to catch my breath. But I know I'll get there, it'll just take time - I wont be able to swim as much as I used to but I know I can get it better than what it is at the moment and I'm determined to! :)

I'm back off to work on Monday and then it's half term so at least it eases me back in gently! 
Have a good weekend xx

Wednesday, 9 October 2013

Hard to put into words how you feel..

It's hard to put in to words how you feel sometimes. Right now I feel as though my insides are made of Velcro and fuzzy stuff, my whole body feels so strange. I keep feeling quite out of it and when I look and move my hands it feels so bizarre. My head just pounds ALL the time as though there's a little man with a drum kit in there! The sickness swirls over me and it's so difficult - I know I HAVE to drink as the stomach meds make you so dehydrated but with every mouthful it makes me retch. Food was okay but I'm starting to feel less and less hungry and it's becoming more of a task - you shouldn't have to feel that eating and drinking is a chore. This is sooo much worse than last time I had these meds two weeks ago.
On Monday night I had horrific stomach pains, right up the top. It felt as though someone was stabbing me. Five minutes of intense pain then gone, all of a sudden. And just as I though it was finished it'd come right back. I was just curled up on the sofa unable to move, mum got me a hot water bottle to see if it would help and eventually I made it upstairs so I could go to bed.
It's mainly when I wake till about late afternoon that I feel at my worst, the heart races, head is so bad, sickness is high, I feel so 'fuzzy' as I like to put it and even though I can't always sleep, just no energy to do anything either.
I know that if I start to be sick I need to ring hospital as they can admit me for fluids etc to keep me hydrated but I really don't want that :(

On Saturday mum and I have a cocktail masterclass and lunch in Harvey Nichols in London - it's a present I got her for her birthday in July and I just cannot change it so I'm stopping the meds for a morning so we're able to go :) then as soon as we're back home I'm starting them up again.

So for now I'm just doing what I've been doing all week, either lazing in bed for the morning and then moving downstairs to the sofa to relax whilst having breaks to just walk around the house to stretch my legs. My chest is starting to join in on the action now too so I'm hoping it doesn't pipe up too much! Otherwise I will be having to ring hospital for a stay in..
I wish I could just sleep all the time as when I'm asleep I don't feel so ill.
Have a lovely rest of the week xx

- Posted using BlogPress from my iPad

Friday, 4 October 2013

Stomach & chest are both fighting for attention!p

Hey everyone :)
After a really bad week chest wise (temperatures, feeling like I was drowning, all the fun things!) I went back to work last week, managed okay considering, but by Monday the blockage pains returned - I did wonder if they would as I am still extremely bloated.
I went down to hospital this morning; my lung function was slightly better but still not great but Dr Higton decided that as I was improving we would leave that but that I must ring if I get any worse.
They re X-ray'd me to see what was going on and as we thought there's still a blockage there! So we're back to the same meds for a week, possibly two. Unfortunately the tummy meds stop the Kalydedo working as well so I am expecting to feel shit for the next week or so anyway due to that. The evenings can still be pretty rough chest wise at the moment too, coughing fits just exhaust you and hurt.
So that all means no work because of my stomach and my chest, so as you can imagine I'm pretty upset. The past week I've been feeling quite low anyway so this really has added salt to the wound. Mums been amazing, treating me to Starbucks, getting me some lovely Lush bath bombs and just generally being there for me to cheer me up :)
I'm hoping and praying that 1-2 more weeks of this and my stomach will just be back to normal - I've had enough of the pain and looking like I'm pregnant now! We're fiddling around with my Creon too as the dosage was upped when I was very very sick and very tiny so we're wondering if actually they're too strong and I need less so it'll be a bit of trial and error I think!

Cross your fingers everyone because I think if it doesn't work this time I'll be on even stronger meds or may have to stay in which is obviously something I really don't want.
If you have any ideas of things to keep me entertained whilst I'm off please give me suggestions!
Have a lovely weekend :) xx- Posted using BlogPress from my iPad