More than just a bag lady

Yesterday was a super busy day and today I’m knackered. I had 4 hospital appointments at 3 different hospitals and spent all day either sat in a waiting room or driving between hospitals!!  First off I had an appointment at 9am at the Treatment centre. This was to get my 3 monthly injection that puts me into menopause to control my endometriosis symptoms. Because it was so early I had to be organised the night before and make sure I was connected to my feed early. It runs for 12 hours and I have to factor in the time it takes to disconnect in the morning so I had to be hooked up by 7.30pm at the latest on Wednesday night.  After I had been jabbed in my bottom I went over to QMC hospital to see the specialist nurse on F22, the gastro ward. In January I had a new Hickman line inserted on the right side of my chest and where they removed the old line from the left side I had a wound that took ages to heal. For 6-8 weeks there was green gunk coming out what was basically a hole in...

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...

So today I went for my first influximab infusion as an out patient at the day case unit at The Treatment Centre. They needed to cannulate me as it’s given in a drip and didn’t believe me at first when I told them my veins were bad. After 3 nurses spent an hour having 3 attempts each in various places in my hands, arms and feet they then got the doctor.  Even using a paediatric cannula he couldn’t get one in so they called my gastro consultant to ask if they could use my Hickman Line to which the answer was a resounding ’NO’ as it’s too precious. If they didn’t follow the correct sterile procedures I could end up with a line infection and sepsis and back in the hospital and to be honest I would rather them jab me a million times than get sepsis.  So they had to call the anaesthetist to ask him to cannulate me. I had to go to the short stay ward  to see him and it took 2 of them half an hour to get one in. In my wrist! And yes, it hurt. A lot.  Back on the day case uni...

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...

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...

This morning I saw my consultant on the ward round. I was excited to find out the plan to get me home later this week but it looks like the plan is a little bit different to what I thought… The gastro consultant had spoken to the microbiology consultant who said I need two weeks of antibiotics from the first date I had them. Depending on which antibiotic we are counting from (as I’m currently on three different types) that takes me up to either the 18th or 19th December. So far this was what I was expecting and so in my head I was thinking that I would probably be home for the weekend, just in time for the annual tradition of Christmas bowling with Bestie and her kids on Saturday 21st December.  But then he told me that we need to leave it 24-48 hours with no antibiotics and then do another blood culture from my Hickman line. After taking the blood culture we then need to wait 2 days (minimum) to make sure no bugs grow on the culture and only when they are satisfied that the line i...

Most people celebrate their birthdays with a nice meal out, a trip to the cinema or even with a few cheeky vimtos in the pub. What did I do to celebrate? I had a little trip up to the hospital.  The night before my birthday as I was connecting my feed I noticed that there was what could best be described as green gunk coming out around my Hickman line. Safe to say there should not be snot like stuff dripping down my line so I knew that I would need to get it checked out.  With pain all around my line and a full diary over the coming weeks I wanted to get it looked at asap as I simply did not have time to be ill or God forbid, have a stay in hospital, so I rang the specialist nurses first thing Monday morning and had an appointment to be seen later that day.  I went up to the hospital, had swabs taken of the gunk around my line and to be on the safe side the nurse even did blood tests to check for any infections in my line. While I was there I didn’t say anything about it ...

Over the last few years when I was stuck in hospital for long periods of time Hubby and I would talk about what we would do if I ever got ‘better’. During some of those times when I was so, so poorly the idea of just being at home for more than a few weeks at a time seemed like a far fetched dream. But I’m currently living that dream! And obviously I know I will never ‘get better’ but for these purposes ‘getting better’ meant being well enough to be at home, not in pain 24/7 and not in bed all day, every day. Not too much to ask now is it??  So in our talks, once I was at home and was well enough to do the real basic things like watch Big Fella play football, Big Girl play netball, go to Tesco, play with the dog, go to the cinema etc one thing kept cropping up. We would love to have a motor home and tour round the country. We talked about the places we would like to visit, how much Buddy the dog would love it and how it would give us a chance to reconnect with each other.  But...

  Today marks two important milestones: firstly my Hickman line is 1 year old and I have managed to stay out of hospital for a year too! I think this is the first Hickman line I’ve had that has made it to its first birthday, so this is quite a big deal. Most people have their lines in for years and years with no problems but in the past mine have blocked, split or become infected causing me to rack up a grand total of 17 lines in 10 years. But maybe my luck is changing… And the fact I’ve been at home without any inpatient hospital stays for a whole year is a milestone I didn’t think I would see.  2019-2023 was a particularly difficult four years where on average I spent more time in hospital than I did at home. And even when I was at home I was so ill I couldn’t get out of bed. There were some times during that period when I didn’t think I would live to see another Christmas because I was so, so unwell and I couldn’t see how I would ever recover. It was a long, hard slog and t...

It’s been a while since I wrote a post. Not because I’ve been poorly and in hospital but because I’ve been well and living life! Don’t get me wrong, I haven’t magically been cured and it’s not all sunshine and roses but things are probably the best they’ve been in years. I’ve managed to stay out of hospital (other than for appointments) for over 9 months now which at one point seemed like an impossible dream. I’m even daring to wonder if I will make it to the magical one year mark but it feels like I will jinx myself if I think about it let alone talk about it!  So what have I been doing? I’ve done what most people would consider the boring, everyday stuff that I so desperately wanted to do when I was an inpatient. I’ve been to the shops, sorted out some life admin at home, planted some flowers in the garden and planned a summer holiday. I’ve watched Big Fella play football, went to a gig with Big Girl and to the cinema with Hubby. I’ve sat down to family meals, had breakfast in We...

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sl...

I’m back from a week in Fuerteventura and it was amazing. This was the holiday I never, ever thought I would get to go on as the last couple of years my health has been so bloody awful. I couldn’t really talk about it much before we went as we were flying out to surprise Hubby’s brother. He had turned 40 a couple of weeks ago and his wife had booked for them to go on holiday as his gift. Almost a year ago when she booked I had joked that we could go out too and be the babysitters for my niece and nephew and my sister in law was up for it. But having been so poorly I didn’t think we would ever actually manage to go. That was until 6 weeks ago when we booked it after I had managed to stay out of hospital for a while (Do you know it’s over 3 months since I was last in? I can’t quite believe it myself!)  So we managed to surprise my brother in law and we had a fantastic week all together. And while I am grateful for the week in the sun with my family I have to be realistic and say that...