More than just a bag lady

Over 6 months ago I went to see my GP and begged for a referral to a pain specialist. St Marks do not have an acute pain team which I think is absolutely ridiculous given the fact that most people suffering with Inflammatory Bowel Disease also suffer with pain. And the reason St Marks don't help patients cope with pain long term is... because the budget for the service was cut. It all boils down to money. As usual.  Readers of the blog will know that the GP forgot  to make the referral that I had asked for. It was only noticed when I saw a different doctor and I asked them to chase up the referral. They checked the system and said no referral had been made so they did it for me. That was back in October and the letter came through a few weeks ago offering me an appointment at the end of January.  The appointment was at QE2 hospital in Welwyn Garden City. This was the hospital that I had all of my original surgery and treatment in 2009. The emergency surgeries I had done t...

I was opening the post this morning when out of one envelope came a letter telling me that I would need to attend a health assessment in order to continue with my claim for PIP (personal independance allowance, what used to be the old disability living allowance). I was pleased that finally my claim was being looked at until I read where I had to go. Of all the many assessment centres around the UK I had to attend one in Chelmsford. That's over 33 miles away and would take well over an hour to drive. And then I realised that I have been given an 8am appointment!  You must be joking! How the hell am I going to get to Chelmsford for 8am?? I would need to leave at 6.30am to get there in time for the appointment so I would have to get up at 5.30/5.45am! At that time I will still be having my feed and because of my medication and the way my illness affects me I struggle in the mornings so there is no way I could manage to get up at that time.  Plus I know I couldn't manage to drive...

I know it going to make my belly hurt.  I know I will feel horrid tomorrow morning.  I know I shouldn't.  I know I should know better. I know all this stuff but... ...sometimes you just have to say fuck it!

I've been struggling. I thought I was just tired last week after Hubby being out for the night but I reckon I must have had some kind of bug. I spent 4 days in bed feeling totally exhausted and just doing simple things like going to the loo or hooking up to my feed left me in pain and feeling as though I had run a marathon. Friends told me that there was a virus doing the rounds at school but I wasn't sure that was what it was until Big Girl felt ill.  I  know I must have been feeling crappy because I couldn't even be bothered to see Bestie. I didn't text her and if she text me I just replied by telling her I'm too ill to do anything. That's true but usually she would come round and we would just sit and watch tv together but I didn't even want to do that. I just wanted to lie in bed and sleep.  Big Girl came home from school on Friday complaining of headache and a sore body. She had some medicine, put her pjs on and got into bed with me and we watched tv. H...

Last week was the first time in ages that Hubby has felt able to leave me at home alone with the kids overnight. He had a work function in London at The Grosvenor Hotel (super, super fancy) and it came with a hotel room. Over the last couple of years he would have either not gone or made sure there was someone to babysit me and the kids. And he would have come home on the last train as there would have been no way he could have left me to cope with the kids alone overnight and first thing in the morning.  I had been feeling ok at the start of the week but it was Sod's law that on Wednesday, the day of the function I felt dreadful. I couldn't get up in the morning so a friend took the kids to school for me and I stayed in bed. I wasn't ill, I just didn't feel good. I was going to go to Boots to collect my prescriptions in the afternoon but I didn't want to go out in the cold and my whole body was aching so I decided to stay where I was.  I did go and collect the kids...

I've just finished doing the job I hate more than anything else. No, it's not the washing up. It's not the ironing. It's not cleaning the bathroom. It's sorting out my medication.  I take 13 tablets every morning and 15 at bedtime, not mentioning the ones in between. I used to count out my tablets every single day from my medicine box but I used to find it the most depressing experience ever. So instead I now count a weeks worth in one go, so that I only have to see the huge storage box that is my personal, mobile pharmacy, once a week.  It also makes it much easier if I'm in a rush getting the kids ready for school in the morning, or so exhausted that I practically collapse in the evening. AlI I have to do is grab a pot, shove the tablets in, drink, swallow, job done. Down in one! Although I'm very grateful that I'm kept alive by the medicinal cocktail I down each day, the actual counting them out, morning, noon, and night (oh, and tea-time!) didn't...

Following last nights issue with my feed, today I've been on the phone trying to sort it out. First call was to St Marks where I spoke to the senior  nutrition nurse. She was outraged by what had happened and informed me that there is a national contract to provide 24 hour nursing support to TPN patients. So last night raised a few issues: one, if that specific contract has changed then that goes against the national guidelines. And two, if the contract hasn't changed then the care that I received last night was disgraceful. So either way not too good.  The nurse from St Marks promised that she would call my provider and register a complaint whilst also trying to resolve the issue of me having missed a feed. Her opinion was that there was a fault with the pump itself because the steps I had taken to resolve the alarming last night should have fixed it. As it didn't the issue obviously lay with the pump and part of the national contract also states that if a pump is faulty a...

This morning was not quite as successful as yesterday but still we left the house with all the right stuff and on time for school. I didn't realise though that there was going to be a Bad Mummy moment again; the second in 2 days!  As I was driving along I suddenly realised that I was supposed to have picked up my friends kids as I had said that I would take them to school for her. Shit, shit, shit.  Cue dodgy u-turn and manic driving as I make my way back to get them. We set off again and I keep glancing at the clock and the traffic thinking that we will just about make it. Big Fella turns to his friend and said "you know Mum forgot you. That's why we were late picking you up". Cheers. Thanks for that son.  We pull into the carpark and as I frantically try to match the right bag with the right child we hear the bell (which signals for them to get into line and be quiet). We start running (or at least the kids do. I do some kind of funny walk cum jog because my bad leg...

It's the 5th of January today. Also known as Back to school day. Last night I made extensive preparations to ensure that we not only got to school on time but went with everything that we needed. So the list was made: Book bags ✅ PE kits ✅ Water bottles ✅  Football kit for Big Girl ✅ Packed lunch for Big Fella ✅ I was all ready. And this morning when the alarm went off at 7am, I didn't turn it off or snooze but instead got up, exhausted and bleary eyed. Big Girl had said no-one was allowed in her room while she got dressed (she's at  that age ) and when I went into Big Fellas room he was still asleep and looked looked like a little blonde angel. If angels snore and suck their thumbs! Anyway, the morning went really easy. No screaming, shouting or tantrums. Big Girl was sat in her coat and shoes having breakfast by 7.45am! We made it school on time and with everything that they needed. I went for a cheeky coffee at the golf club next to the school with some of the mums and h...