Physically things are so crazily hard! I've never ever experienced a struggle like this before. I've always had bad days and a massive decline the past year, but nothing compares to this!
After yesterday I have also realised that I'm not super human! I have great strength and positivity and I know those lungs and my new life are so close now. But yesterday I mentally couldn't cope! I was so stressed! I was so angry and scared and just cried so much and attempted to scream thru mask ha
It doesn't help how hot it is! But it was the smallest things triggering my emotions off, like an alarm to tell me my pump had finished. Or getting on and off a commode but being tangled in wires and drips and monitors. It's all too much when your struggling to breathe as it is!
My nose is really sore and dried and cracked and bipap pushes down on my nose, so that stings.
I also have thrush in my mouth due to all the drugs I am on, that's what happens and I was so wanting them to hurry up and give me the fluconzaole tablets, because I no it takes days to kick in!!
And I really wanted to start it and make sure I didn't get thrush going down into lady area because that is not what I need right now!!
Because of the thrush in my mouth my tongue is very sore and I can only eat really bland food.
But eating has been a struggle alone at the moment. I haven't been able to get off my bipap so I literally have to have it attached to my head but not tied around cheeks and hold with hands and once I breathe for a few seconds lift the mask, put food into my mouth and bipap back on and eat and breathe thru mask again!
Now with cf we all know eating at the best of times is hard and it's a known fact in general not cf related that the slower you eat the more full up you get. So you can imagine my frustration! Also now more than ever in my life, I really am burning more calories by breathing!
Also my bipap has been doing my head in making farting noises lol it's tight on face but all the settings are higher so more pressure.
I know mentally I'm still trying to cope with waking up in ICU and hearing what's happened and the fact I cannot leave, can't even go further than outside the ward, and even that the times I've done it have wiped me out!
I don't get panic attacks ever and I'm certainly not one to obsess over stuff like that and hate to put a name on things and generally I can self calm myself, but this last few days I honestly just haven't dealt with well!
The weather is beautiful but not when your stuck in here. I've been spiking temps, my infection markers been over 300 and white blood count raised, I've kinda shut off to numbers now, all I want to know is if it's ok or not!
I'm so gutted I have no independence! Think that's what's getting to me the most! Adjusting to the change!
I'm not saying I was completely independent before all this I was still very much in a wheelchair using oxygen constantly. But not being able to walk to a toilet or get on a toilet myself, wash myself (I can't even wash aswell as its impossible) and obvs just have nasal cannulas to eat! I can't even drink without it being hassle!
It's mentally draining for me!
All this is why I think I mentally broke down yesterday! But maybe it's a good thing to get out of the way!
So I thought I'd give you a rough idea of a daily routine.
Wake up at 5-6am ivs make me need the loo.
Commode comes in. I then stress because I am attached to constant heprin going they port to thin my blood because of the clot on the stent in my heart. So that's wire number one (ports under my heart side boob!
Then I obvs have this lovely annoying heart monitor that is constantly attached to me. So have to position this.
Then there's the groin lines. Now something's I have drips running so yet more wires to move about.
Then I have to get the energy to sit up, turn to side of bed, stand turn around with all leads in different directions, then pull knickers down.
Make sure bipap tubing in right direction!
Then gentle sitting down and making sure all tubing doesn't end up inside the commode lol
Then I can do my thing!!
By that point my heart rate is normally taking over my entire body, breathing is so much worse. And I sit longer on the actually commode recovering and preparing to get off than I do anything else!
Getting off pretty much is the same with added wiping! Ha oh and to add to make my little pain in the arse situation even harder, there weighing and measuring everything now so I can't just put tissues in the bowl! Fuckers! Haha
Anyways so that's toilet. Brings me to about 7am. I have to rest for a good 30-60 mins to be able to do next thing!
In the mean time nurse takes me bloods thru my line in my wrist. It's how they check blood gases and all that, the name has gone out of my head but it bloody hurts the position of it!
It's so handy to have instead of being stabbed every few hours. Anyone who has to have or has had a blood has knows how painful they are!
After they take the blood, they flush it and omg it's so weird but my thumb and finger go really hot and tingle for a few seconds and I have to itch it, its the weirdest thing!
I'm constantly attached to a pump or something, don't really understand it all but they can read my heart rate I think she said thru the line!? It's so clever! But again annoying to be attached to constantly!
So then there's breakfast and I explained the eating situation. Breakfast is prob my biggest meal of the day and I like to eat as much as I can. We all love a fry up and it's good when ya mouth burns like mine does right!
So that takes prob about an hour and have all my tablets.
Then I do pulmyzine neb thru my bipap.
Have a rest or normally sleep.
And nurse normally in and out setting up pumps or giving me ivs.
Physio comes around 11.30 so do ventolin nebs just before so all nice and loose.
After Physio I'm wiped. I try take something called oxynorm. The lovely Macmillan nurses suggested I take it to help relax me and heart rate. I'm very anti drugs like this because I don't want to be spaced out or not focused. But if it helped heart rate I was happy to agree and I can have it as and when or not at all!
This normally sends me to sleep. Or I see the doctors or dietian or call out nurses I think there called. They the link between hdu and icu. So lovely. Everyone he is!
Then there's lunch, if I can handle it.
Then the afternoon full of more bloods and drugs and Physio and nebs.
People must think you have all the time in the world in hospital. But you really dotn get a break! When I've had my really bad days, mums stopped people coming in and gone out to speak to them. For me sleep is a massive part of getting better at the moment!
Anyways can't be bothered to carry on with list of day but you get the idea of that's just up afternoon how stressful it is!
Now one thing I know I am not myself is, the use of my phone! Anyone who knows me knows I'm HOOKED to my phone! This past week I can barely look at it for more than 5-10 mins. Not because I'm not waiting to see messages or anything but it's hard to focus! And it tires me out so easily! I have to get mum or lee to read stuff to me and reply for me!
Even though yesterday was a bad day, Friday was good! I had the lovely Sarah Hurley who works at the royal Brompton on foulis ward doing reflexology! I have always found a very good connection with Sarah, feel very free, open and relaxed around her. She helps me so much and I appreciated her coming so much!
I had my lovely friends up the other night for a bit. Was so great to see them but exhausting. Although I had loads of visitors that day.
I had the best surprise visit from Veronica and Fred as she was in clinic! Obviously couldn't get close because she is post transplant but thru the window and she gave my mum bits and balloons and she made me and my family a lasagne!!
I love her so much and seeing her gives me so much fight because I saw how unwell she was pre tx and she's incredible now, it was also good for family to see, keeps a focus!
It was a good day, my story had reached the daily mirror and also I've reached and gone over my target on my just giving page!
But don't want it to stop! Want it to be record breaking!
Decided I need to stop visitors until I have the strength to do normal things like wash and eat and I need to just chill. As much as I know I should chill when people are around I want to talk to everyone and get hyped.
I started feeling a bit sick last night which I've been dreading would happened but I think it's due to not eating much. So not focusing on it and keeping on top of meds and in anti sickness!
Right so tired now but glad I got all that out! Each day I do feel a bit stronger and let's face it I was on a ventilator for days and I only have between 15-20% lung function before that so body is wiped and I'm so lucky I got off it!
I feel like I have over come a lot of fears and all this is setting me up for great things! Rome wasn't built in a day they say and my body just needs time! I'm gonna smash this I know I am, I have no doubt it's just hard at times to deal with the situation right now!
Love to all