Latest Update

High time I updated this almost abandoned blog!  If I still have any readers left, thank you for returning and I'll try to keep this as concise and as positive as possible.

In January I had an appointment with a geneticist from Cambridge who travelled to my local hospital to meet and discuss the proposed diagnosis of Ehlers Danlos Syndrome.  After an hour of assessment he agreed with my GP that I have this disorder, hypermobility type which has been the cause of my painful knee and shoulder joints and formed a link to my Gastroparesis.  He recommended I try to strengthen the muscles around my joints in order to prevent future dislocations and pain, easier said than done, but I have been trying my best!  His suggestion for the chronic lack of energy which I have been experiencing tenfold since my tube infection in December is most likely due to CFS (Chronic Fatigue Syndrome) but with no current treatment, this is not a particularly helpful diagnosis.  Things have been very up and down over the past four months, both physically and mentally.  Some days I don't feel too bad and if I 'save' up energy, I am able to do a few 'normal' things even though I feel wiped out for several days afterwards, I am determined to try and live as well as possible.  Other days are a terrible struggle, I am sleeping anywhere between 12 and 20 hours a day and much of my awake time feel somewhat shaky, weak and nauseas.  I am still working although currently experiencing a gastroparesis flare which has seen me take a couple of weeks of work which has led to my mood deteriorating somewhat, it's very difficult not being able to go to work since it leads to feelings of failure which doesn't sit very well with me.  Despite this I am managing to go to the field once a day to look after my pony which is something which brightens my day somewhat!

I had an appointment with my gastroenterologist yesterday.  The great news is, I weighed in at 46kg which is a HUGE improvement and now puts my BMI at 18.7 (A healthy weight at long last!!!) as opposed to 15 which it stood at before I got my J tube.  He has prescribed some new meds to help with my ongoing nausea and possibly assist with my gastric emptying.  He has also made another referral to Professor Epstein in London for the gastric pacemaker, he seems to think I would be a good candidate for it but as I think I've mentioned before, I have heard mixed responses to this ranging from success to no improvement whatsoever.  It's quite a big surgery and I am very unsure about it at the moment but knowing what the NHS are like, I don't think I need to rush any sort of decision about it for a fair few months at least!  Tube feeding is going well and I am feeding at 70ml/hr during the day and hydrating with sterile water at 50ml/hr overnight.

On to more positive matters, I have finally booked my wedding for mid August which will be an extremely low key affair on a beach in Scotland, just Dave and I and a couple of witnesses which we will meet just before the wedding.  Some people have pointed out to me that I don't seem as excited or 'bridezilla' about it as perhaps I should, but although (unsurprisingly!) I am absolutely thrilled to be getting married, anybody who has lived, or currently lives with a chronic illness will know and understand, it is very difficult to make plans and moreover look forward to things, not knowing how one will feel from one day to the next, let alone in a few months time.  Being overly excited often, in my experience, leads to disappointment which I could really do without right now so I prefer to be realistic and take things day to day, week to week.  I am just hoping that I will feel OK when the time comes, at least enough to enjoy the ceremony and a small celebration afterwards.

I think that just about wraps everything up for now.  Oh, not quite!  Just wanted to give my friend Nat a quick mention who is currently really struggling with her GP and in hospital, you can check out her amazing blog at http://helpme-minx.blogspot.co.uk/ She has been a massive source of help and inspiration to me and many others so please, drop by and give her some support!

Much love.

Ziggy. xxxxx

December 2011

Hi everyone, I am so so sorry for the lack of updates lately, I've been meaning to write one but everytime I've started writing a post I've got sidetracked and when I went to continue it, it was already out of date. I'm going to try to make this as brief as possible so this time I may actually finish it!

Tube feeding has been going really well and I'm currently boasting a 4kg weight gain since my tube was inserted in August and although this is fantastic, there have of course, been a few set backs.

I came off my elemental oral diet mid way through September after my GP told me that the nhs would no longer fund my peptamen since I am now tube fed, this wasn't so much of a problem since I am getting all the nutrients I need through my tube but I missed having something to sip on with some 'substance' so began on purees and soft foods with varying success and have been feeling very sick this past week and just sipping clear liquids, better than nothing though!

I have had non stop problems with the stitches which hold my bumper in place constantly tearing out. When I went to the hospital for the seventh time to get them replaced I was unfortunate enough to see a A&E consultant who we will call Dr Shitface for reference. He refused to believe it was difficult to see my surgeon/consultant and also refused to restitch the bumper saying there was no way the tube would come out then reluctantly glued the bumper to my skin - well, surprise surprise, it had come away within hours and I had to use half a roll of tape to hold the tube in. Things became worse as the constant friction of the tube moving in and out constantly produced a great load of granulation tissue. Still no appointment. Finally last week the pain became too much to bear and after taking more than 2 hours to get out of bed, every movement set me screaming as though a serrated knife was being shoved in my stomach, I went to A&E where I was told I had a severe infection and prescribed antibiotics. Two days later the pain was worse and 4 inches of the tube had come out so I stopped feeding and went back to the hospital. By the time I was seen, the infection had got even worse and my stomach was swollen and stretched around the tube site and spewing blood and pus (lush) The doctor was shocked and while he was deciding what to do the rest of the tube popped out. It was all I could do to stop myself from sobbing; I waited so long for the tube to be put in and in a split second it had gone. He called a surgeon who suggested he tried to reinsert it before it closed up but as soon as he tried to push it past the swollen and infected granulation tissue I screamed and flew down the bed. I can honestly say that is the worst pain I have ever experienced, far worse than my shattered clavicle or the following surgery. The only option was to book an emergency surgery which happened in the next hour and when I woke up, to my absolute delight, I had a new tube!! Talk about relieved! I was sent home the next day with antibiotics and fortunately am feeling much better now!

To jump back a few months, I went to see my GP with regards to the pains in my knees and ankles which for the past few years I have put down to malnutrition. I couldn't understand though why they were getting worse the more healthy I became. he looked at my joints and realised they are hypermobile; I have always been very bendy, which had aided my dancing majorly and I always saw it as a positive thing until what he continued to tell me...He looked at my other joints, my skin and discussed my stomach issues and told me it was almost definate that I had Ehlers Danlos Syndrome (hypermobility type) which explained my gastroparesis and pain. I was referred to a rheumatologist who, as I was warned was useless and told me I had flat feet and sent me off to get physiotherapy, another bone density scan and orthotics. Thank goodness for an online friend, Nat, who was more than helpful and told me about a private specialist in London who I intend to save up to go and see, this will take a while and my physio doesn't even start for another two months so in the meantime I'm just going for damage limitation. I can't walk long distances due to pain and fatigue but I do have a micro sports wheelchair which we have taken with us on a couple of day trips, just in case. I've only had to use it once but it did mean we could spent a few more hours out rather than going home early as usual. Sometimes I cannot believe how much my life has changed but fortunately the people around me haven't, my friends are all as brilliant as they ever were and don't treat me any differently to before!

My mind is starting to drift away now so I will finish and post this now before it gets abandoned again. Thank you so much for reading and again, I am so sorry for the silence.

Hope everyone is good and groovy.

Much love,

Me. xxxx

One week from surgery!

Heya! I'm so sorry I've not updated before, I ran out of mobile broadband credit so had to wait until today to get online to update!

My surgery was a week ago today and fortunately I was in theatre within an hour of arriving at the hospital and my fiance was allowed to walk down to theatre with me which settled my nerves a little. The surgery itself took around 2 hours and I was taken to the ward quite swiftly afterwards and unbelievably they let Dave take me outside in a wheelchair less than an hour after I woke up! I was given morphine in recovery which wore off after a few hours wherupon the nurses tried to mamage the pain with a combination of paracetamol, codeine and ibuprofen which were partially successful but still didn't allow me to get a wink of sleep that night. I had my usual post anaesthetic problem of not being able to urinate so needed a catheter fitted but when I finally managed to wee by myself I could go home! I stayed at my Mum's house for a few nights then felt well enough to come home and even invite some friends over on Friday night. I only managed to drink some lemonade and stay up until 9pm but it was a good start! I took my first trip out with my pump in a bag on Saturday for coffee and then managed to go shopping yesterday! I bought a few girly treats (new underwear and pyjamas!) to celebrate being out and about and even stopped for a drink on the way home! High on progress and getting cocky I decided to walk upto the stables to see Dream, which wasn't the greatest idea I've ever come up with; it took me an hour to struggle there and back and when I got home I had to get straight to bed as the pain was eeeeeevil!!!!

I wasn't deterred though as today I went to see Izzy jump her mare at a nearby horseshow and had a lovely morning and went to see my Mum afterwards and we went for an ice lolly! I'm not really consuming much besides the tube feed (1000ml Nutrison energy @ 50ml per hour (day rate) and 35ml/ hour night rate) Totalling 1500 calories. I'm managed 1 - 2 bottles of peptamen per day and aside from that just clear liquids and boiled sweets, all of which are staying down. It's amazing!!!!!! Aside from the tube pain and tiredness due to the Tramacet I'm taking, I haven't felt this good for years, literally! My head feels so much clearer now the brain fog has gone and I feel like I'm really taking interest in things again, clothes, make up, career, getting out and about,- all the things a 30 year old should be thinking about - not lists of food I can and can't eat, my calorie intake, a pain scale, spending most of my time curled up in a painful ball or throwing up in the loo!

I hope this goes out to everyone that things WILL get better, maybe not in the way you'd like but in a way that you can get a handle on your life and start to live again, bit by bit.

All the best my lovelies.

xxxxxxxxxxxxxxxxxxxxxx

Last update before surgery!

Hey Monsters! Hope everyone is doing Ok!

Friday kicked off with an email from my new/old dietician who said she was prescribing some flavour pots to improve the taste of my Peptascuzz er Peptamen and a quick meet with my Mum for morning coffee. In the late afternoon I hacked several miles upto the showground with Dream, Iz and her mare, where the show was to be held at the weekend. My poor pony is so unfit that in the end we decided we would have to locate a horse box to take at least Dream up there. Just as well because I'm obviously unfit too and felt like I was about to drop by the time we got back! I couldn't however because we were celebrating Dave's birthday that evening (his actual birthday is Monday) so as soon as I arrived home from the stables we trundled off to his local town and met up with some friends for drinks which was great fun!

Saturday was mostly spent resting until the evening when I went back upto the stables to give Dream his costume fitting (Punk!) and try to get them both in the horsebox as a practice. Dream hasd been in horse boxes before and went in without too much fuss wheras Midge (Iz's Mare) has many issues having been a very badly treated racehorse and just wouldn't go in, leaving Iz the only option of hacking up there. Didn't get home until after 9pm with a very bad stomach ache, we had some friends round but unfortunately the pain was so excruciating I had to go straight to bed.

We arrived at the show at 9am this morning and got off to a great start when Dream kicked my arm whilst I was cleaning his hooves. Arghh! In my first round (best turned out) he kicked another pony which was so out of character, I've known him over 2 years and he's never done that in any situation before and it frightened the life out of me. Especially because he is extremely strong and I just can't control him when he starts misbehaving. He redeemed himself in the afternoon as in my second round (fancy dress) he behaved well and we won a pink rosette! When we got back I crashed into the gate and smashed my collar bone scar line (from my plate surgery) and sternum on the gate which was horrific so not only do I have a bruised arm from the kick, I also have a badly bruised chest now as well. Grrrrr! I really enjoyed my first show though and despite the mishaps was very pleased to have finally experienced a show since I missed the last one due to breaking my collar bone practising jumping the day before. I'm so accident prone it's unbelievable!

Finally, it's my tube surgery tomorrow morning at 10.30am so please send good wishes, if you can, my way! I'll update when I'm in hospital since I'm taking my laptop in with me.

Take care everyone.

Big loves. xxxx

Anyway

Fun times!

Alrighty, this is more of a fun and postive update!

I'll get the health bit out the way first. Yesterday kicked off with a visit to the hospital where I will be having my surgery on Monday. The nurse took my medical history, vitals and bloods and told me I'll have to stay in for a few days for refeeding syndrome since my BMI is now under 16 but I did find out that I'll be working with my favourite dietician, Jennie, who is an absolute star. (Incidentally she emailed me today to say Hi and that she's sending me some nestle flavour pots in the post in order to make the Peptamen taste a bit better. Hurrah!)

After the appointment I went for a quick coffee with Dave and we met our friend, Les (who's birthday I missed) and we went to Pizza Hut for their lunchtime buffet. Goes without saying I didn't have any BUT I did have some ice cream - great thing about the place is if you ask for an 'Ice Cream Factory' they give you an empty bowl and spoon and you can help yourself to as little or as much as you like and decorate it with sauce and toppings of your choice. Very handy if you have a digestive disorder since you can work within your own limitations and not feel bad about handing a still half full dish of dessert back to the waiter (I don't know why, but it always makes me feel bad) I asked for my dish to arrive at the same time as the guy's lunches so we could all eat together. It was the first time I've eaten out (and kept it down!) since all this nonsense began 3 years ago which made me feel fantastic!!!

In the evening I took Dream (my pony) out for a walk for the first time by myself (I have always had someone walk with me before since I'm afraid he might misbehave - but he didn't! He was an utter angel!) We had a great time and I spent the rest of the evening cleaning tack and listening to the radio.

This morning Dave, Ned (another chum) and I went to a nearby pool with waterslides and had an awesome time, it was such fun whizzing down the slides into the plunge pool and dodging the waves in the main pool. I even wore a bikini! Must admit I felt very self concious and skinny and kept my mat wrapped around me while we were out of the pool but that was partly due to the fact I was so cold. A few people stared at my bony body but I just ignored them and remembered that most people feel self concious for one reason or another and they may have just been looking at my horrendous tan lines!!!!

Took Dream out for another walk in the rain tonight with a massive XL raincoat and zebra print wellies on, I must have looked hilarious! The coat came down to the tops of my boots and it's supposed to be hip length (did I mention I'm a shortie??!!) To be fair my wet hair was all over my face so I probably looked like a little girl taking her pony out (Awwwww, it's be funny if I wasn't 30 and getting married soon!) Been watching PeeP show tonight whilst working on Dream's fancy dress costume for Sunday. My Rock n Roll lifestyle eh?

Hope you guys are all Ok, feel free to message me anytime either here on on my Inspire!

Much love,

Zigster. xxxxxxxxxx

Total cock up because I'm silly

Alright alright I've done it again.

I went to see my Mum yesterday afternoon and ended up staying far longer than I planned to, she had just come back from a ten day holiday and we had a lot of catching up to do! When it got to the evening she wasn't able to drive me home having had a couple of glasses of wine so I decided to stay over at her house. All would have been grand except I'd only taken one bottle of Peptamen with me, which I'd already drunk and I needed something else before bed. I scoured the cupboards and the only thing I could find which appeared to be Ziggy- friendly was coucous so I made myself a small bowlful, chatted for a bit longer, had a shower and went to bed.

Four hours later I woke up with horrible stomach ache and had to run to the bathroom to be sick. I finally stopped vomiting after several hours but was left with a terrible cramping pain in my stomach which is still there now at almost 8pm. I did manage to take a short walk this evening upto the stables to see the horses which I thought might help but kept experiencing almost paralysing spasms every five minutes or so. The three worst things about this whole stupid incident was 1./ If I'd have been prepared and taken my Peptamen with me or even better, had a supply at my Mum's house, this would never had happened. 2./ It was one of my best friends birthdays today and we had planned a day out which obviously I had to cancel and 3. I know for a fact a few months ago this would not have happened so despite being on the same doses of medications, things are getting worse. Where will this end? Must admit I'm getting slightly worried.

HOWEVER and it's a big,fat, positive however, I am feeling a little better now if I just sit down and don't take large sips of anything, my surgery is only 6 sleeps away and I have a pre operative appointment at the hospital tomorrow after which I will (fingers crossed) be meeting up with the friend whose birthday is was today, so it's not all doom and gloom. I'm just annoyed with myself really for being such a disorganised twit. Oh well, I shall retire to bed, get cosy and watch a dvd in the knowledge that tomorrow will be a better day.....

Night princes and princesses.

xxxx

One week until surgery!

Heya, I've finally got my internet back so thought I'd update!

I've been drinking the new Peptamen for 2 weeks now but unfortunately still not met my goal of 4/ day. At first taste I thought there was no way I was

even going to drink one a day since it was so bad but I've got used to it a little. I've tried mixing it with cold soya milk and a little chocolate syrup which makes it more bearable and am slowly withdrawing the other ingredients until I can drink it straight. The best tip I can provide to anyone in the same boat is to make it REALLY REALLY cold which makes it taste less like witch hazel. I've accepted that it's never going to taste nice and to just think of it as fuel. There's not much point dressing it up, just need to get. It. Down!

Yum! On to more pleasant matters, I've been busy seeing lots of chums and preparing for a horse show next Sunday. Ended up having an inpromptu party at the weekend which was crazy and I'm still recovering now! My next party is going to be a 100lbs party which, as the name suggests is the party I'm going to hold when I hit 100 pounds! At the moment that's about 20lbs away so if I can gain 1lb per week we're looking at the end of January which doesn't seem like a totally

ridiculous time away! Obviously

the weight gain doesn't end there,

I'll still need to gain more to get up to a weight which is even considered healthy but it'll be a start at least.

So, surgery is a week today and hopefully by this time next week it'll all be over and I'll be on my way home. I'm a bit nervous about the actual surgery and trying not to think about it too much. I just want it all to be over so I can get on with feeding and feel more energetic. At the moment I just want to sleep all day.

I think that's about it for now, hope everyone is doing well.

Much love,

Me. xxx