It was a busy week getting ready for my friend's baby shower that I hosted yesterday. As she spent some time living in Mexico before she met her now husband and settled down to have babies (this is number 3) and her baby is being named after Frida Kahlo the famous Mexican artist we decided on a Mexican theme! I tried to do as much as I could before my big appointment Wednesday but there was a lot that I had to do in the 3 days that followed.  


Charlie thought that she was coming for a slice of cake and a cup of tea with her friends but behind the scenes I was furiously making decorations, preparing games and cooking up a feast! 

My friend stepped in to help me out on Friday, I had already asked her to help me out on the day of the party but she said she would help me with the shopping the day before and could then also be on hand to help me with everything that needed doing Friday. 

Honestly I couldn't have done it without her. I am so blessed that she was able to help out as much as she did because it meant I really got to give Charlie the shower that I had planned. It's so easy to get carried away with pinterest when you have all of those fantastic ideas at your finger tips but I decided what was most important and stick to that. 

I am going to do a post dedicated to that with photos etc probably on my very bendy baker blog which I have TOTALLY neglected! 

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Ok so a few days have past now and I have been a bad blogger and not finished this post. I am struggling to find 'blog' time at the minute which is sad because I love sitting down to write my blog! 

I do have a good reason though! I have restarted my YouTube channel and that's been taking up most of my 'spare' time because I have to edit the films before I post them up. I started a YouTube channel back in December because I wanted to be able to capture what day to day life was like with HMS and do information videos about chronic pain and how to support someone living with a chronic disease. I am trying to use as many mediums as possible to raise awareness of chronic pain/illness etc. 

I will figure out the balance between my blog, vlogs and other writing projects but at the moment the scales are tipped more towards the filming and writing projects. 

I have also been getting out and about which is fantastic and had two hospital appointments the last 3 days! 

The first was with the nutritionist who has put me on a new liquid meal replacement diet. I didn't really know what to expect going into the appointment to be honest but she was really lovely and is the first person to really listen about all the trouble I am having with nutrition at the moment and the extra detrimental effect it is having on my health. 

I happened to discover this vegan hemp protein shake last week that actually stays down!! Man was I excited when I drank it and it didn't come back up! My nutritionist would like me to have the shakes she has prescribed me and carry on with the hemp ones too. I am also to take a tablespoon of ground flaxseeds a day as well which I have been mixing in with the shakes. 

I use to eat ALOT of raw nuts and seeds as it was my main source of protein and only source of omega 3 but since the food intolerance began like everything else it slipped out of my diet. 

Just in the few days having the shakes I already feel so much better then I did before. My skin feels less dry, I have more energy (although I am still tired it isn't fatigue tired) I feel less irritable and generally happier. I feel sunny again. 

I then had an appointment with a specialist clinical nurse about the awful state my bowel is in! I had an appointment in London last week with a top consultant about my bowel and gastro system and it was so disappointing. I now make sure I go into these appointments expecting nothing but it still left us both feeling very flat. 

Firstly Dorset hadn't sent over ANY of the results from the extensive testing I have had on my bowel so she literally knew nothing about me. The clinic was running just under two hours late and during the appointment the Dr kept switching between English and Spanish (which we did just have to laugh about!) Of course it wasn't her fault that she had no test results or that she was running so late, these things happen but it was so frustrating because we couldn't make any progress. 

Right at the end of the appointment she declared she was going to write to the GP to have him remove me from ALL my pain medication but wouldn't explain to us why or listen when we tried to explain exactly why the pain service had put in place the 'cocktail' I am on (mainly to protect my bowel.) It's taken 2 years to get my medication to a point that it was at least reducing my pain so this news is a huge step back. 

My overall goal with my illness is to be 'drug free' but I am realistic and know this will take time if I ever do even manage to achieve it (which my pain consultant doesn't think I will) If my medication is stopped over night it will take my life away from me. There will be no going out, no cooking, no baking, no craft, no gardening, no getting up. It will be me stuck in bed like it was when I first became disabled. I can't go back there again :-( I have worked WAY too hard to build my life up around my illness. 

The very positive thing it has done though is given Tony and I the final push we needed to decide we are going to try to maintain my illness using alternative therapy. Sadly the NHS won't fund this type of treatment but there is a lot of evidence that shows HMS responds very well to alternative therapy. It's about taking responsibility for my health and instead of relying on Drs relying on myself. 

I will of course continue to work alongside Drs but from here on in I am in the driving seat. I just need to be a responsible driver! 

Anyway so back to the original update! The second appointment of the week was with this nurse who DID have all the results to my bowel tests. In a nutshell ALL the muscles in my bowel aren't working. That's both voluntary and involuntary! I now have to start a treatment that I will have to do everyday of my life... yes that is FOREVER! 

Bowel chat is not pleasant but it is a problem for MANY hypermobility syndrome patients so I will write about it. Cover your eyes now and meet us at the end of the blog if you don't want to know anymore! 

They originally did the tests to see if I needed surgery but as there are other complications with my bowel they can't risk it. 

The 'complications' being that where the soft tissue in my bowel has over stretched my bowel is full of 'pockets' which is there nothing they can do about.

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WOW I really am a bad blogger more days have passed and it's not over a WEEK since I started this post :-( I'm sorry! I have just been so busy this week! 

I am going to go ahead and post this just to get it out there and then I will start afresh tomorrow! 

Blessings x x