Bloody blood tests!

That was yesterday. I think I did too much on Monday and yesterday I just couldn’t function. I needed to pack my clothes for holiday but just couldn’t get out of bed. So I decided it was going to be a rest day. I stayed in bed and dozed on and off until about 6pm. Hubby and Big Fella were off to football training and before they went Hubby asked if I might be able to get my case packed. He wants to be organised this year and get everything in the car ready to go a day before we set off instead of our usual last minute rush. So I forced my arse out of bed and started to pack.

But I didn’t just pack, I ended up feeding the dog, loading the dishwasher and the washing machine and a few other chores around the house. When I went back upstairs to put the last few bits in my case I knew I had overdone it and didn’t feel well. I could feel that I was about to pass out but there was nobody in the house to catch me so I hit the decks. Eventually I got myself up and ended up phoning one of my friends to bring me an emergency delivery of sugary fizzy drinks. I don’t know if my blood pressure is low or if I’m not getting enough calories from my feeds but I’m getting lightheaded quite often. I’m only getting 700 calories a day from my TPN feeds which was enough for when I was just lying around in my hospital bed doing jack shit but now I’m home and doing stuff the dieticians might need to increase it.

I felt better this morning and managed to get out of bed before lunchtime. This was mainly due to the fact I had to be at the GP surgery for midday for blood tests. When I got there I told the phlebotomist that I had bad veins and that the phlebotomists in the hospital had struggled to bleed me which resulted in one of the ward doctors taking blood from my wrist (and yes, that does hurt!) As with most phlebotomists she said “I’m sure your veins aren’t that bad” so I just sat back and waited for her to realise that my veins are actually non existent. After a few attempts she eventually conceded that I was difficult to bleed and she went to see if there were any nurses available to help her. Unfortunately there weren’t and she asked what happened the last time I came for bloods at the surgery. “Nobody could bleed me so I ended up going up to the hospital to have them done” was my reply.

So she admitted defeat and went to print out the form that I would need to take to the hospital only for the system to crash. Cue a 25 minute wait with her apologising profusely before I left with said paperwork. I decided to ring the ward to check what time you could turn up at at the hospital for walk in blood tests but they told me not to bother and to just head up to the ward and they would do them for me. I’ve got an appointment with the gynaecology team tomorrow to get the results of my bone density scan and to have the injection that puts me into menopause and keeps the endometriosis symptoms at bay so I’m going to pop up to the ward before that. At least if they’re being done on the ward if they can’t find a good vein then the doctor can go in my wrist or one of the nurses can access my Hickman line and take blood from there.

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

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