Skip to main content

I'm still here!

I thought I had better write to confirm that I'm still alive and well. I haven't blogged since getting discharged from hospital because as soon as I got home I got right back into family life and was busy spending time with Hubby and the kids making up for the four weeks that I had lost while in hospital. So what happened in the end? The short version is that I got a new Hickman line, was declared bug free and sent home. The slightly longer version would include the issues they had getting the line in, the difficulties I had with the Consulant in Nottingham and how unwell I still was when I got home but I don't have the time or the energy to go into all that and it's all water under the bridge. 

Luckily though I managed to get an emergency appointment at St Marks two days after being discharged from Queens Medical Centre and went down to see my team. I had the opportunity to sit with a gastro consultant, specialist nutrition nurse consultant and a dietician all at once and discuss the problems I had been having with my pouch, how eating and drinking caused me so much pain and so many bowel problems and just how crap I was feeling physically and mentally as a result of all of these issues. They decided that some investigations needed to take place and within a week I was down again having a scan. I'm still waiting to have a camera inserted where the sun doesn't shine and to do a defecting pouchagram (the test where they X-ray you pooing- remember I had one of those a while back? Search through my past blog posts if you want to find out how much fun that test was!!) but at least they have got the ball rolling. 
I have so much more confidence in the team at St Marks and there's no way that I will be transferring my care to Nottingham. I would rather suffer the expense and difficulty of traveling down to St Marks than have the convenience of seeing a consultant that I have no respect for and who clearly doesn't care for me either. 

Since being back at home so many things have happened; little, everyday things that would have made a funny or interesting blog post if I had actually written them down. Why haven't I then? Partly due to exhaustion, partly due to discovering Game of Thrones and the subsequent need to watch all 6 series in as short a time possible and partly because I've felt down and haven't been able to motivate myself to write. I know that blogging makes me feel better in myself; there's something very cathartic about getting stuff out of your head and on paper (or in this case online). However it's been hard for me to muster the enthusiasm to write because most days I don't have any energy left. I spend the mornings shopping or trying to keep the house clean and the wardrobes full of clean, ironed clothes, then have a nap in the afternoon before the kids come home from school. Then once they're home they want feeding and either my skills are then used to entertain them or to stop them from killing each other and then Hubby gets home late, I have to feed him and then I flop into bed wrecked where all I want to do is watch TV and get some sleep before starting the whole cycle the next day, and the next and the next ad infinitum. 

Game of Thrones by the way is amazing and if you haven't watched it then I highly recommend it. It's a very enjoyable way to lose 60+ hours of your life!! Especially when this fine specimen is heavily featured!!


There's only two more days until the kids finish school for the summer holidays and I can't wait. No early morning alarms, no packed lunches to make and no school uniform to wash and iron. Bliss! I'm hoping that my health holds out so I can do some nice stuff with the kids but on days where I feel crappy I can always curl up in bed and search for my next boxset to watch!

NB xx

Comments

Popular posts from this blog

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day!  Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40.  To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works.  I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold.  ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days!  I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit.  As someone who is receipt of both PIP and ESA disability benefits I find this whole situation…  🔲 terrifying  🔲 baffling  🔲 rage inducing  🔲 disgusting  🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own!  Now I do b...