Skip to main content

Loving being home

I’ve been home now for by almost 2 weeks and I’m loving it! Since getting out of hospital I’ve been able to start doing all the things that I wanted to do with Hubby and the kids; just boring, mundane, everyday things but things that make me really happy. I’ve been able to do the school runs, help the kids with their homework, get their rooms tidy and even managed to help them set up online banking. We’ve been able to sit down as a family each evening for dinner which is really lovely as now the kids are older it’s pretty much the only time we get together as a family. 

Big Girl has been poorly this last week with really bad tonsillitis and a cold and has been off school. She is the worst patient! She’s been extremely demanding and has had me up and down to her every 5 minutes! But she’s hardly ever ill so I can’t really complain and it’s actually nice to be needed. Although it has wore me out! Big Fella has had mock exams so a lot of my time in the evenings  has been spent trying to get him off his Xbox and shouting at him to revise!  But I’ve also managed to squeeze in a coffee with my parents and I went to see Alan Carr at the Concert Hall with my sister so it’s been a pretty busy couple of weeks. 

I’m having to go to the hospital every week for blood tests to monitor both my phosphate and the adalimumab levels but that’s a small price to pay to be at home. I’ve been on the adalimumab (the immunosuppressant medication) now for 5 weeks and instead of having the injections fortnightly I’m having them weekly. The hope is that by doing them weekly we are throwing everything and the kitchen sink at the Crohns and that it force it into remission- and keeps it there. I’m also still on the steroids, although the dose reduces slightly each week, so I should hopefully be off them in 6 weeks time. I just hope that it won’t all kick off when the steroid dose gets smaller as that has happened in the past. 

To be honest I know that the chances of me ending up back in hospital again, either with another flare or an obstruction, are pretty high. But I just want to be at home during the Christmas holidays and be well enough to enjoy time with family. This year I’ve been unwell or in hospital for most of the school holidays and I just want to be able to spend some quality time with the kids. They’re at the age now where they’re off doing stuff with their mates and I’m ok with that- I remember being a teenager and all the fun I had. But I also want to make sure that I feature in their memories and to be around to help and guide them and to give them the emotional support that I think teenagers need. 



Labels:

Comments

Post a Comment

Popular posts from this blog

Holiday from hell

My first week in Cornwall was amazing. Me, Hubby and the kids spent the week near Porthleven along with all Hubby’s family in a big house with its own pool and hot tub. The kids had a great time with their cousins, we celebrated Big Girl’s birthday, went to the beach, ate together, played games in the evening and just generally had a wonderful time. It was the holiday I had dared to dream about while I was in hospital amd I couldn’t believe I was well enough to enjoy it. No, I wasn’t able to eat and drink but that was a small price to pay to be making memories with my loved ones. At the end of the week we packed up the car and drove to St Ives where we had booked a fisherman’s cottage one minute from the beach with my parents. My sister and her husband would be staying nearby and Big Girl’s boyfriend and his family were also staying in St Ives at the same time. I’m good friends with his Mum so I was really looking forward to having a great second week with even more of my favourite peo...
Post a Comment
Read more

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...
Post a Comment
Read more

Dexa Scan

The highlight of my day, possibly my week, was leaving the hospital this morning for an appointment at the Treatment Centre, all of a few hundred metres away! I was diagnosed with endometriosis last year after a scan on my bowels picked up an ovarian cyst. For those who don’t know what endometriosis is it’s where tissue similar to the lining of the womb grows in places it shouldn’t. https://www.nhs.uk/conditions/endometriosis/ I didn’t realise I had it because any pain below the waist I always attribute to my bowel problems. The gynaecology consultant said that they would normally carry out a laparoscopy (keyhole surgery) to formally diagnose and see the extent of the endometriosis but because of all my previous bowel surgeries this wasn’t an option. So the decision was made to give me Decaceptyl injections to put me into an early menopause. Doing this stops the womb lining from growing and from contracting when you have a period and therefore helps to reduce the pain. I have the injec...
Post a Comment
Read more