Thinking about living....

When I was 5 days old I almost died. No really. My mum went to check on me and I was lifeless and not breathing in my cot. It turns out she caught me in the early stages of SIDS (sudden infant death syndrome) For the next 6 months she had to wake me every 3 hours to prevent me falling into a deep sleep and to essentially I guess, check I was still alive.

When I was a teenager I plummeted into a very deep dark depression and developed an eating disorder to boot. Even now when I see the photos of myself standing at 5'11 and weighing just over 7 and a half stone I am still shocked. I really did never realise how physically sick I got.

I can't and won't lie. On more then one occasion the illness nearly killed me. I nearly gave up hope that I would ever have any future and contemplated taking my own life several times. Wow I've never told anyone that before. Many many years after my recovery I once found an old suicide letter I had written. I wrote two letters that night. One was a suicide note and the other was a letter telling my family I had run away. In the end. I ran away. That was the beginning of my healing though. I guess once you reach crisis point the only way really is up.

Then when I was diagnosed with Hypermobility Syndrome (Elhers Danlos) I had to wait 5 awful months before learning that I did not have the vascular form which can be life threatening. I didn't tell ANYONE that was a possibility. I didn't even tell Tony until the night before we were going to the appointment just what news we may hear the next day. I cried the two and a half hour ride to my grandparents house (we were getting on a train from their town) and had to give him an explanation for my turmoil!

I don't know why I have been challenged with so many 'near death' experiences. I can't say it makes me contemplate my own mortality more then anyone else does. I never even think about it day to day to be honest but something someone said to me today really made me wonder.

Over the weekend the amazing community I live in all rallied together to put on an amazing musical fundraiser to help Tony and I manage with the many many extra costs incurred because of my HMS, Such as having to travel to hospital appointments over 3 hours away and all the equipment I need to make life easier. We have been blown away with the support the community have shown. Local shops all grouped together to help cover the costs of the over heads. The local theatre gave up the premises for the event. Raffle prizes came flowing in. All in they raised over £1700 on that night. An amount of money that is quite frankly breathe taking to us.

I was talking to a shop owner today and he said "Well, you make it easy to want to support you. You live. You're not sat at home feeling sorry for yourself, you've got this obvious drive to live your life. It's easy to help someone that wants to carry on as much as you do".

It's not often that we are able to agree with someone when they compliment us but in this case I do. I said to him "I've got a life to live, I've got to carry on! Can't be sitting at home doing nothing!" I do have a very deep desire to live. And I don't mean heart beating and breathing I mean to LIVE.

To feel the rain on my skin, the sun on my face, a laugh in my mouth, tears on my face. I want for Amelia-Rose to look back on her early years and think 'Jeez, my mum was ALWAYS there for me. Playing with me, baking with me, teaching me crafts, tickling me, goofing around with me, going on walks with me.' I want Tony and I to look back on these years and think 'We never let a day go by when we didn't say and FEEL 'I love you''.

This life, my life, is such a precious gift. Your life is a precious gift. It's all too often people let life whizz by in a blur of 'I must do this'. When was the last time you stopped to think "Was I alive today or did I just get on?" No one else can live our life for us. We and only we are responsible for that.

I believe every living thing has a right to live a good life. It's one of the reasons I don't use ANY product tested on animals and I strive to be a vegan (unfortunately my meal replacement shakes from the nutritionist prevent me from doing this right now) I don't believe my life is anymore imperative then that of an animal and when you suffer as much as I do you would NEVER have ANY hand in causing suffering to another life.

Although I've had probably more then my fair share of encounters with almost not being here anymore the thing that I am often overwhelmed with is a deep burning desire to live. It isn't about life and death it's about LIVING. I'm not talking about not wanting to die I'm talking about wanting to make every second of every day count.

It should always be the first thing on our list but so often it is the last.

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 

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!)