Skip to main content

Lit up green photos 💚

On Monday the Council House and Green’s Windmill in Nottingham lit up green to support HAN week. Unfortunately I wasn’t able to go and see them as we had gone to Birmingham to watch some sport at the Commonwealth Games but my incredible parents went and took these photos for me. 










My story also got picked up by The Mirror and Walesonline…seems crazy to think of how many people may have read it and might have learned about artificial nutrition for the first time. 



I’ve had lots of positive feedback, especially from friends and family about the articles but there is another side of living with bowel disease and all it’s associated complications. Lots of people have told me I’m ‘brave’ and ‘inspirational’ and I’m not a big fan of those words. Because what these people don’t see was me sat in bed crying this morning because I didn’t have the energy to take the 10 steps to the bathroom. What nobody saw was me having to text Big Girl (who was in her bedroom across the hall from mine) to tell her I’m too poorly this morning to take her to the hairdressers and ask her if she can she get the bus there. Nobody saw me sobbing for 15 minutes with Hubby in between his zoom meetings telling him that I don’t know if I want to chance going on holiday to Cornwall even though not going will break my heart. The amount of stuff I have to sort out to go away is ridiculous and I don’t know if I will have the energy to do it. I am also terrified of getting down there and ending up in hospital like last year. And since going to the Commonwealth Games on Monday I’ve been unable to get out of bed. Is there any point of me travelling 7 hours to Cornwall just to spend most of the time in a different bed?? 

Big Fella desperately needs new trainers as his feet just won’t stop growing and I have no idea when I might be well enough to take him to the shops. And it’s not just as simple as ‘well Hubby can take him’. My poor husband works 12 hours a day, sometimes more, has to do all the household chores and all the adulting in the house. Plus look after me when I’m at home. I sometimes wonder if I’m more of a burden to him at home or when I’m stuck in the hospital. So I’m not brave. I’m not inspirational. I’m just a mum, who is very poorly, struggling mentally and just doing her best to survive. One day at a time. 
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