Going home, staying in

After meeting with Mr E last Thursday I was due to be discharged the following day. I was so excited and Hubby even took one of my two bags home with him after the meeting so I wouldn’t have so much to pack up the following day. But then in the night I started to go hot and cold and was feeling really rubbish but I didn’t tell anyone as I was so determined to get home. But then first thing Friday morning I started vomiting and that was the end of my discharge dream.

I spent the next three days in bed, very, very unwell. My blood pressure was very low; at one point it was so low that I wasn’t allowed out of bed unless I had a nurse with me as I was feeling dizzy and on the verge of collapsing all the time. You know you’re in a bad way when the drs visit you at the weekend. Luckily the gastro registrar from the ward was oncall over the bank holiday weekend so he came to see me each day and delivered the news that I needed stay in a bit longer.

After the bank holiday normal ward rounds resumed and the ward sister asked me whether I honestly thought I could carry on the way things are until September. I cried and said that I didn’t think I could so she agreed to contact Mr E to see if he could bring forward the date of the surgery.

Unfortunately he only operates once a week and the next couple of weeks his schedule is jam packed. Then he’s away on annual leave, so the original date of the end of a July is the earliest he can operate. So now I think I’ve agreed to move the surgery to July but I’m not really sure. What I do know is that if things carry on as they are there’s no way I will manage to get down to Cornwall on holiday (and the thought of ending up in hospital down there is scary) and there’s not even any guarantee that I will even make it home before the surgery. The thought of being in here for another 6-8 weeks is enough to CCXX me but for now I’m literally taking it one day at a time.

Part of the biggest problem is controlling the amount of pain I’m in. Because I’ve come off all the opiates the team are reluctant to put me back on them but while things have been bad I’ve been having sub cut morphine. This is morphine injected just under your skin which the nurses are allowed to do, instead of in a vein because only the drs can do that.

This is what’s known as a sub cut butterfly and the nurses insert the needle into the yellow end piece and inject the morphine. It stings like hell but it only lasts a few seconds. I’m able to have this every 2 hours but usually after about an hour the pain is back so the gastro consultant has asked the pain team to come and see me.

The pain nurse came and suggested I try ketamine- yes really! I have had ketamine infusions at UCLH in the past but I’ve never had it as a regularly given painkiller so I didn’t know how I would react. I needn’t have worried so much- it didn’t do a thing. I was still needing to have the sub cut morphine on top of the ketamine so after 2 days they decided it wasn’t working and stopped it.

So now I’m on sevradol tablets which is what I take at home for pain. Now I’m not throwing up I’m able to tolerate tablets and getting off the morphine injections is a step closer to me potentially going home.

I did manage to have some ‘home leave’ this week which was bloody amazing. I managed to spend a couple of hours with my parents in their garden and then Hubby picked me up and took me to his parents where all the family was. I got to see my brother and sister in law and my niece and nephew who live in Liverpool as they were visiting during half term. I hadn’t seen them in over a year so it was amazing to not only be able to see them in person and to be able to hug them! I also saw all my other in laws and nieces and nephews as well as my own kids and my dog 🐶 I purposely didn’t go back to my house as if I did I knew I wouldn’t want to leave again.

I was out of hospital from 3.30-9.30pm and when Hubby dropped me back I was exhausted and in pain but my God I was happy. I didn’t realise how much I needed to wear proper clothes and be around other human beings. I’ve paid for the good times though and I’ve had what me and my friend Kitty term an ‘energy hangover’. I’ve barely been able to move since Wednesday and have struggled to get on top of my pain and get enough sleep but believe me it was worth it and I would do it again in a heartbeat.

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...

More than just a bag lady

Search This Blog