Half term is over and the kids are back at school. Or that's what I thought I would be writing. Instead, I've had Big Fella at home with me today after being awake last night crying and complaining of tummy ache.
He spent the night in bed with me and Hubby, clutching the sick bowl and didn't really seem himself this morning when it was time to get up and get ready for school. But as is always the way, as the day has gone on he has perked up, demanded lunch and snacks and been playing games on the laptop, so it's back to school for him tomorrow.
Me, on the other hand, I seem to get worse as the day goes on and usually by 6pm I am good for nothing and in pjs, ready for bed. This is the reason for my less than daily blogging- I'm simply too exhausted to put pen to paper (or tap out a post on my iPhone).
Today I've spent most of the afternoon/evening tucked up in bed as everytime I stand up I go all dizzy, the room spins and I feel like I'm going to pass out. My Hickman line is sore and throbbing but I don't want to go to hospital because if it is infected (which i think it might be) then they will keep me in to give me IV antibiotics and I really don't want that.
I have an outpatient appointment at St Marks on Thursday with Dr 7 so I'm hoping that I will last until then without the need to present at an A&E department. I'm hoping that I will be able to persuade Dr 7 to let me have the IV antibiotics at home like I did before Christmas. I'm also hoping he can help me feel a bit better because my eating isn't going too well either.
Yesterday I thought I would try an avocado. I thought it would be ok because it's soft and the thought of eating something fairly healthy was appealing. However the hours of pain it gave me told me that I can't tolerate avocado just yet so today it's been Ensure shakes and mash and gravy again. I also chucked some arborio rice in the slow cooker with some vegetable stock to make risotto which I was going to have for dinner but I'm too tired to go downstairs and get it.
Being at home during the day means that I have the pleasure of watching daytime TV. Today Sam from TOWIE was on This Morning after being diagnosed with Crohn's disease. (I had no idea who she was to be honest as I don't watch TOWIE -or celebrity big brother which she was also in)
I personally suffered with colitis but have friends with crohns and have spent lots of time in hospital with crohns sufferers and know that both diseases are pretty similar and both can have devastating effects on your life.
Although it is good that it's being talked about publicly I often feel that they don't tell the whole story. Yes, Sam spoke about having stomach cramps, diahoria and weight loss but she didn't really explain how it can affect your whole life and how awful a flare up really is. She didn't tell viewers about needing to go to the toilet 50 times a day, or getting up 10 times a night. Or explain that if she went shopping she would need to know the exact locations of the toilets at all times because when you've got to go, you've got to go fast! Or that sonetimes you might not make it at all. That's my experience of living with a colitis flare. Maybe hers isn't that bad, and that's good for her because I wouldn't wish it on my worst enemy.
I think they glossed over the fact she's likely to be on medication for life to control the symptoms and the flare ups and while she briefly talked about being on special shakes to rest her bowel for 6 weeks but no real details were given.
On This Morning they also had no expert on offering advice only Dr Chris (who is a GP and as well meaning as GPs are they really don't have any depth of understanding or specialist knowledge in my experience) so I was quite disappointed by how un-informative the piece was (if that is actually a word!)
After the footballer Darren Fletcher was reported to have had surgery for colitis, it seems that Bowel diseases such as crohns and colitis are the latest celebrity must-have accessory. Lots of 'celebrities' are now coming forward saying that they've been suffering but I wonder how many of them are disclosing it for anything other than self promotion.
I suppose any publicity for either of these two awful, awful diseases is good but if the stories are mis-reported then it can do more harm than good to those suffering in the real world. And we have to remember that these celebs have access to the best, private medical treatment. They're not waiting months for an appointment with a consultant and I'm pretty sure that the 9 blood tests that Sam from TOWIE said she had to have were not at her local community hospital with an hour wait with half of the local pensioners in the queue in front of her!
Anyway I will get off my soap box now. I just get so frustrated that the reality of living with crohns or colitis is often not what you see portrayed in the media. It's hard. It's bloody hard infact and can feel quite lonely at times. I'm very open about my illness and friends/family are very supportive but unless you've suffered with it, you can't really understand what it's like to live with it. And celebs offering a glammed up version will give those newly diagnosed false hope of what life is like.
Maybe having spent so much time on the Intestinal Failure Unit at St Marks has shown me how bad things can get with these diseases but then I have to remember that not everyone with crohns or colitis will get that sick. Good job really...there's not enough beds at St Marks as it is ;)
NB x
Comments
Post a Comment