To and fro T' london we go

I was going to Facebook  about today but I feel so mixed about it and it's not great so I figure I will blog and then people have the choice to click on the link (or not) but more specifically it's out here for everyone that reads the blog but I don't know in 'the real world'.

Actually on that note I just want to say a huge THANK YOU to everyone out there reading this blog, it blows me away how many people have read my ramblings now. If it helps just one person with HMS I will be thrilled!

So today was THE appointment with the gastro team up in London, I was told that they are the world leading specialists so felt really blessed to be seeing them and I only had to wait 3 months which is incredible!

We normally go and stay over night when I have an appointment in London but as it turned out we couldn't get booked in anywhere. We did look into staying further a field but it was going to get too complicated with transport because of the whole me being in a wheelchair thing!

This morning we all woke up earlier so we didn't have to rush. I took a shower which was really lovely and everyone was really nice and calm. Amelia-Rose was so ready (like socks and EVERYTHING!) by 8am and Tony treated her to an episode of Dr Who on the tablet!

I have a strict no tv before school rule apart from on a Friday so today was a real treat! On a Friday once I start doing Amelia-Rose's hair we put her shows on and she gets to watch one or two before school. I'm really big into Friday treats, I think it's a nice way to start the weekend and it means Amelia-Rose has something to look forward too. We aren't big on T.V and there will be days where she goes without watching so the Friday morning is a big deal!

Anyway I have gone totally off focus! Amelia-Rose went off to school really happily which was great as she has been a bit wobbly about us going to London again. The last time we went was for my operation so I think she's still holding on to a lot of those feelings.

We then got all mad rush which I really didn't want to happen but it ALWAYS does! We swung into slimming world early to get Tony weighed (he started 2 weeks ago and I am so proud of him!) and went down to mums so she could take us to the station. I had arranged with my friend that I would drop some stuff off for her as her next door neighbour goes but I realised I had forgotten so mad rush back up to the hall to drop all of that off. *more stress*

We some how managed to leave on time though! We even had time to get a coffee for the journey which was super! As I was waiting for Tony to come back with the drinks I got a phone call from the dietician asking if had gotten my appointment letter through and I said no I was still waiting and had been told it was more then likely going to be September. She then told me that actually I had had an appointment Monday but they've had trouble with people not being sent the appointment letters!!! WHAT!!!! I have been waiting to see her for three months and like I say I was told it would be September so I was bummed out to hear I had actually missed an appointment because they are having admin problems!

Fortunately she could offer me an appointment this coming Monday at 8.30am which I snapped up!! It's super! I have a meal replacement shake I want to talk to her about as the one I was on my doctor said he wouldn't prescribe it on repeat as it's too expensive and it was making me sick  (not that the doctor knew that) so I am hopeful she will let me at least try it!

It's been 6 months now that all solids come up and I can't begin to list the many ways the sheer lack of nutrition is affecting me! I guess the most glaringly obvious to me is how grouchy it makes me feel inside! The fatigue is awful but I can pull myself together to look 'ok' for Amelia-Rose (although it's really hard! I think it is what makes me grouchier inside because I don't want to show it) internally it's really starting to show now. You wouldn't believe how good I am at hiding the amount of suffering my body goes through! Honestly, people haven't got a clue! I am so determined it's not going to change who I am that I very rarely show the suffering.

I like to put on pretty clothes and do my make up nicely and be my goofy self when I am around people I am not willing to give myself over to the physical disaster that is 'm' body ;-)

The doctor today was well over an hour late and when I went in it was clear she hadn't read my notes and didn't really know why I was there. My local PCT hadn't sent over any of the results from the very extensive tests I have had done here so there was very little she could actually do. We went into my history (which is huge... think War and Peace or ya know one of the later HArry Potter books!) and her body language screamed 'oh god why did I ask'! Haha! Poor woman, the last thing she wanted today clearly was a complicated patient. Bless her.

I've been referred for bowel retraining (doesn't that sound like a barrel of laughs!) and have to organise (some how!) to get gastro emptying test done more locally.

There were times she kept slipping into a foreign language which was a bit strange but Tony and I were able to chuckle about afterwards!

I asked about nutrition but she was very clear that wasn't anything to do with her. Thank God I do have that appointment and don't have to wait until September!

Oh and did I mention she said she is going to write to my GP and get them to stop ALL my pain medication. eeeerrrrmmmm ok. *cue being bed bound* I understand in her mind she's doing her job and is looking after my bowel but you either need to give me serious support in managing my pain drug free (which would be amazing) or you leave my very carefully thought through pain management system alone. You don't just click your fingers and stop it all! Surely that's quite irresponsible?

So all in all I feel pretty crap about the whole affair. My body is screaming at me and I have SO much to do tomorrow :-( Amelia-Rose asked if she could sleep at my mums house tonight which I thought was a fab idea but she decided right at bedtime that she wanted to come home and so Mum bought her back. On the train home I was thinking in my head "yes lie in! Steady slow start!' and when I got the text I honestly nearly cried! School rush it is! Never mind, maybe it's a good thing and will just kick me straight back into reality.

It is definitely the right decision, I want Amelia-Rose to know when we say we are going to London and back in a day that we mean it. She needs to know it's ok.

As rubbish as I am feeling I have decided two things. 1. I am never going to London and back in a day again EVER. It was ridiculous but we had so much riding on today (or so we thought) and I couldn't miss it. 2. I am really really done with leaving my health up to other people. I float along and am in a good place and every time I have anything to do with a hospital it causes us all a huge amount of stress and nastiness and I am just not doing it to myself anymore or my family. From here on out I am going to try my very very hardest to control my HMS myself holistically.

It's well known that HMS responds better to alternative therapy but the NHS won't fund it so we are given painkillers and then pills for the painkillers and pills for the pills and I am just absolutely done with it.

At this point if someone told me to go hang naked upside down in a tree dangling by my big toe I would!

So new angle to the blog perhaps, how to stay in the driving seat of your HMS! I'm not saying I am never going to see a consultant again because I think that's unrealistic at the minute BUT I am done waiting for someone else to actually try to help and I am going to help myself.

I can't tell you how much red tape and admin errors we have en counted in the past 2 years and I am just so incredibly done with the stress that causes! From now on it's me in the lead.


Oh there was another thing that I decided today! I am going to start vlogging too. My memory is the worse it's ever been (my physchologist thinks it is being made worse by the lack of nutrition) and I am worried I will miss out on big chunks of life because I literally don't remember soooo I am going to vlog and hopefully then I won't ever forget because it will be right there in front of me! Bish bash bosh!

(will grammer etc check this tomorrow!)