Somehow over the last couple of years he’s managed to dodge it but the dreaded Covid had finally caught up with him for the first time. And although Covid isn’t really a ‘thing’ in the real world any more, in hospital it still very much is, so of course, this meant that he wasn’t able to come and visit on Sunday with the kids like he always does.
I found out on Thursday that my Hickman line was going to need to come out but I was hoping that it would all be done and I would have a shiny new one in time for Big Fella’s birthday at the end of the month. But I was talking with one of the nurses about it on Saturday and when I said that she told me that there would be no way I would be discharged within the next 2 weeks. Apparently waiting lists for line insertions and excisions are the longest they’ve ever been and she said that although she felt bad telling me that she wanted me to have realistic expectations so I wouldn’t be disappointed.
At that point I just cried and cried. And the nurse sat next to me on the bed and held me while I let it all out. As the tears flowed so did the words; I just told her how fed up I was with everything, that it felt like I was trapped in some fucked up Groundhog Day and that it felt like things were never going to get better. I told her that I’m terrified that this year will end up exactly the same as last year and that I’m going to spend more time in hospital than I am at home. That I’m fed up with my illness taking things from me and that it just feels so unfair. That I feel like a shit Mum and wife and that I worry my kids will look back on their childhood and see that I was absent for huge chunks of it.
And you know what? She didn’t patronise me by telling me it would all be ok. She told me that things were shit and that it was ok to be angry and upset with the world and I appreciated that. But she also told me that none of this was my fault, that she knew how fiercely I loved my kids and that she reckoned it would be better to have me as a mum albeit part time on occasion than a full time one that didn’t care. That today was a bad day and we just needed to ride it out.
She also said that they would try to get me some home leave for Big Fella’s birthday as long as I was well enough and that they might even be able to swing an overnight stay at home depending on the timings of all my meds. To be honest I just don’t want to have to take photos of my boy opening his birthday presents in the ward dayroom like last year. I think it would break my heart.
I think it hadn’t helped that on various days this week on Facebook memories I had seen all the different posts over the years where I had been in hospital around this time of year and I had written about wanting to be home for Big Fella’s birthday. And I guess it hit me how many birthdays the poor lad has had to celebrate with me in hospital. I reckon over half of his birthdays I haven’t been there to see him wake up, or to watch him opening his presents at home. Over half. If you’re a parent, just imagine being absent from half of your child’s birthdays. It’s when I think of things like this that I get really down and realise just how much my illness had stolen from me over the years.
So I’ve spiralled a bit this weekend and found myself really, really down.
It hasn’t helped either that I’ve been a human pin cushion. With my Hickman line infected it can’t be used at all so I’m reliant on having a cannula for IV antibiotics and fluids. But my veins are bad. And when I say bad, I mean like bloody awful. They’ve been struggling to get blood out of me all this week and had to resort to using the veins in my feet, which, let me tell you, is not nice.
And then my cannulas aren’t even lasting 24 hours so I’m continually being prodded and poked with needles. Every. Single. Fucking. Day.
Yesterday I had blood tests in the morning (3 attempts and then they used my foot) and then someone came to try and cannulate me. They only had one attempt because they said they could only see one vein that looked promising and when they couldn’t get the cannula in then they thankfully said there was no point repeatably stabbing me when they couldn’t even see a vein to stab. So they put the job out to a doctor, who came and tried and failed. Who then put it out to a doctor trained in ultrasound guided insertion.
This doctor came with the ultrasound machine but then the bloody thing wouldn’t turn on! She thought it was that the battery was low so while it was charging she was looking at my arms and hands to try and find a suitable vein. There was none. So she turned her attention to the ultrasound machine that still hadn’t turned on. Turns out there was a loose wire and once that was in the right place we were in business.
She scanned my arms using the ultrasound looking for a decent vein. She thought she found one but strangely it didn’t have any blood flowing through it! I do sometimes wonder how I’m still alive! Most of my veins are very small, very wiggly and very scarred from repeated stabbings so the ultrasound helps them to see any deeper veins that aren’t visible. Eventually one was found but the needle couldn’t progress up the vein because of scarring, a second attempt was made further up the vein but it tissued and so she gave up with that particular vein. It was third time lucky when she finally got one in, after almost an hour of trying.
While she was looking at my arms one of the nurses came in and told her that I no longer needed bloods taking. (When you have a cannula inserted they’re able to take blood from it before flushing it with saline.) One of the antibiotics I’m on needs to have its levels checked daily to make sure that they’re not building up in the bloodstream as it can cause kidney and liver issues if it does. So I assumed that they’d used the bloods they’d taken that morning for that test. But then 2 hours later another doctor came in my room telling me she was here to do a blood test to check my levels and I lost my shit. I went on a bit of a rant about the fact they’d said they didn’t need it when they put the cannula in only a couple of hours earlier, that I had been repeatedly stabbed all bloody day, that my arms and my feet hurt and that I was fed up. She stood there and took it all and said she was sorry but that she still needed to take some blood. I then felt awful, it wasn’t her fault after all, and apologised profusely. I explained I was frustrated with it all but that wasn’t her fault and that she unfortunately took the brunt of that frustration. She was kind and accepted my apology and managed to get the blood on her first attempt!
Apart from my rubbish veins my rubbish insides have been making themselves known. The best way to describe the pain is that it has felt like I’ve been eating razor blades and they’re slowly cutting me up as they pass through my bowels. Fun huh? I was on and off the loo so many times on Saturday night; it must have easily been 12+ times so I was exhausted when I finally fell asleep about 4am. I have to say that the nurses and healthcare assistants are amazing and if I’m asleep in the mornings they leave me or quietly do whatever it is they have to do in my room. Apparently I had my obs taken while I was asleep and took a syringe of ketamine while still half asleep. They do have to wake me for that one as it’s a controlled drug and has to be administered by 2 nurses. It can’t just be left on my bedside table for me to take when I wake up like my other tablets, but I have no recollection of taking it this morning!
I finally woke up just before midday feeling really crap, physically and mentally. Obviously today was Fathers Day and although my own Dad was flying home from Spain I still would have liked to be at home to celebrate with Hubby. He is an amazing Dad who always puts me and the kids before himself so I wanted to make sure he had a nice day. To this end I’ve spent the last few days cajoling and reminding the two teenagers to get presents for him, to wrap the gifts I had gotten delivered and to go to the shops to get stuff they could cook him breakfast. Anyone with teens knows they are completely self obsessed and wrapped up in their own little world (or is that just my kids?). To be fair, Big Girl was at work all day yesterday and Big Fella had games to play on his Xbox but we got there in the end. I don’t think it was quite the day Hubby would have had if I had been home but I think it was ok. And in all the chaos of trying to sort my kids out I completely forgot to order my Dad’s present (sorry Dad if you’re reading this!) But Amazon prime next day delivery came to the rescue and it arrived just after my parents touched down on the tarmac.
Writing all this down really helps with my mental health and was one of the reasons I started blogging in the first place. It’s almost as if when it’s on the paper (or webpage) it’s out of my head and then I can move on. I guess it’s like my way of releasing all the pent up emotions while at the same time allowing people to understand what’s going on in my life without me having to relay it individually time and time again. I’m sure that I will wake up tomorrow and feel better. Nothing will have changed. My veins will still be bad, my line will still need taking out and this illness will still be ravaging my insides but how I deal with that will be different. The only thing you can control when there is nothing you can control is your attitude to it all. And while I’ve struggled the last couple of days I know that tomorrow instead of thinking ‘why me?’ I will remember that there’s nothing so special about me and think ‘why not me?’ instead. And if for any reason I'm still stuck in a spiral of feeling down I know there are plenty of nurses on the ward I can reach out to and say ‘hey, I’m not ok’. Because it’s ok to not be ok.
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