Friday, 9 December 2011

Dealing with Doctors!

In response to a question I got this week about dealing with doctors and other healthcare providers.

"Thank you very much for replying, please could you give me any strong tips on dealing with professionals and other services who don't understand my condition and keep harassing me. I would be very grateful." 

The best way to get the most from your healthcare provider is to be organised and well informed. Arm yourself with as much information as you can, but don't just read the stuff you find on google. You can access thousands of medical journals online for free (there is a link on the "Gastroparesis" page to a great free site) and you can try searching google scholar if you feel good enough to wade through the jargon that is lol.

Dealing with Dr's can be very difficult, especially if you feel intimidated by them. When you are ill you feel especially vulnerable and more likely to forget what you want to say, or in a hospital situation,  feel too intimidated to to stand up for yourself. So ALWAYS take someone with you to appointments. Make sure that person is also well informed about your condition and what life is like for you. They will often hear things that you don't take in and can stand up for you when they see you backing down. Make copies of any letters and test results you have and keep them in a file to take with you if you end up in hospital or when meeting new healthcare providers i.e. dietitians. You never know when you might need them and it could save you a lot of time, especially when it comes to explaining your condition to someone new.

If you don't have a good relationship with your consultant and you don't feel they are doing the right thing for you, its perfectly alright to seek a second opinion. Go to your GP and for a referal, it is a good idea to do a little homework before you do this because they will most likely just send you to the next nearest hospital. It is hard to find motility or EDS specialists but the support groups are now an excellent way of finding tried and tested GP/EDS friendly doctors! Be prepared to travel if you do find a good one, it's worth it, but expect long waits between appointments and you also need to think about who is going to care for you locally if/when you need immediate care.

The motility experts I have come across so far here in the uk are:

NHS.... Hope Hospital Manchester
NHS.... Durham University Hospital
NHS.... St Barts and St Thomas' London
NHS.... The Royal London hospital
NHS.... Salford Royal
NHS.... Royal Free London
Private.... Princess Grace Hospital London
Paediatrics... Great Ormond Street

What do you do if you need medical treatment or advice out of hours?

Obviously... if there is something dangerously wrong... you must go straight to A & E! 

However A & E is not usually the best place to go with gastroparesis symptoms but sometimes it is necessary. Don't expect them to fully understand your condition, that doesn't mean they can't help you, but expect a long wait while they try and figure you out. Here in the UK, I find it much better to use the out of hours service, you ring your GP and there will be an answer phone message with the phone number for their out of hours service. Then you call that number and they will arrange to see you or give telephone advice. If they ask you to go and see them you won't have to wait as long, and they can arrange direct admission if needed. 

Never let ANYONE, Dr or otherwise, bully you into something you don't want. At the end of the day, it's your body, your life and you have to live with it!

When you need someone who understands...

Patient forums are an excellent way of sharing information and experiences with with people who have faced similar situations to yourself... I started my own support group on facebook to try and provide a support network here in the UK. You can find us at
Of course there are international groups too such as inspire and G-PACT. There is a great community on facebook and twitter, not to mention all my fellow bloggers. So please don't feel alone, there will always be someone there to help you along the way, all you need to do is ask xxx

Here are some links to GIFT and other pages I created x

GIFTuk Facebook Page

GIFT support group

Living with Gastroparesis & EDS

Thursday, 1 December 2011

What to do if you think you have Gastroparesis #Part 2

Please click here for #Part 1

So, you went to your GP and the chances are... you came home with a bunch of pills and were told to go back if things didn't improve. This is standard practise and you mustn't feel that this is a brush off in any way. There are several medications that help improve gut motility and nausea so it's highly likely that you will try a few before you find a regime that suits you.

Remember: When they say come back.... they mean it. Doctors don't chase their patients and if they don't see you they will presume you are ok.
  • It is best to give any medication a good chance to get into your system so don't expect immediate results. 4 weeks is usually enough time to know if something is working for you or not but some medications can take longer than this.

In that time, there are many things that you can do for yourself to help minimise your symptoms. Dietary changes are a must when it comes to gastroparesis, no matter how hard we fight it! Some simple things you can try are:

  • Reduce Fat intake. Foods that are high in fat actually slow the digestive system down. However...if you are fighting to get enough calories to maintain your weight don't worry about the fat content, if you are only eating bits and bobs then go for the stuff that's going to give you the most calories in the smallest volumes.
  • Reduce Fibre intake. Fibre is hard to break down so cooking fruit and vegetables well will help you to break it down and help prevent the formation of bezoars (hard lumps of food that get stuck in the stomach). Avoid things like salad, raw fruit and veg and red meat.
  • Most dietitians will tell you to have 6 small meals a day instead of 3 larger ones
Still not working for you? The next step:
  • Puree / Liquidise everything. Liquid is much more easily processed than solid food and will empty faster.
  • Supplements are a good way of getting maximum calories from small volumes and they come in a range of flavours/ brands. They can be used as a sole source of nutrition if tolerated but I have yet to find anyone who actually enjoys them!
  • Vitamins! If your not eating, you're not getting what your body needs, so top it up with a good A-Z...the kids jelly ones are very popular!
  • Probiotics... not the stuff you buy at the supermarket in cute little bottles, you want the good stuff! The one I use is VSL#3 you can buy it over the counter at boots but you will need to ask for it because it needs to be refrigerated so won't be on display. You can also get it on prescription if you ask your doctor. It is not very well known so don't expect some of the smaller chemists to stock it. It comes in powder form so you can mix it with your supplements if you can't tolerate volume very well. 
If you have tried all these things and you are still losing weight... please don't feel alone like I did. For some of us eating at all is an impossible task. What goes in comes straight back up! If that sounds like you then be prepared for a bumpy ride and some big decisions. There are some good patient groups online like where you can go and chat with other gastroparesis patients world wide...some diagnosed, some still waiting for answers. It is a great place to ask questions and get support from people who live it like you do! For those in the UK, I have created a facebook support group. You can find us at and This is a closed group, only members can view posts and it won't pop up in your timeline for friends and family to see, so we can talk freely without embarrassment!

It is highly likely that at some point you will be told that it is stress related, take this into account and try to reduce the stress in your life, but please don't start to doubt yourself! You're not going mad and it does not mean that the problem isn't IS! It is not all in your head and quite frankly... if you weren't stressed before... you probably are now lol.

Please Click Here for #Part 3  

Wednesday, 16 November 2011

What to do if you think you have Gastroparesis #Part 1

Gastroparesis literally translated means stomach paralysis. Some other terms you may hear used along the way are: Delayed Gastric Emptying, Motility Disorder, Functional Disorder, Functional Vomiting/Cyclic vomiting, visceral hypersensitivity/hyperalgesia, Visceral Neuropathy.

This advice is based on my own personal experience, it is not intended to substitute professional medical advice and if you do think you may have Gastroparesis you should seek advice from a doctor.

Gastroparesis is a chronic (long term) condition and diagnosis and subsequent therapeutic treatment can be a lengthy process. You need to keep a strong head, even if the rest of you feels like it's falling apart. Arm yourself with as much information as possible to help you make the decisions you may face on your journey.

Now we have that out of the way, what I will tell you is... you don't have to take one doctors word for gospel! If you are not happy with the treatment you are getting PLEASE PLEASE ask to see someone else. It is vitally important to feel that you can trust the people involved in your care, at the end of the day it is your body and you deserve the best.

Due to a general lack of understanding and wide variety of overlapping symptoms, gastroparesis can go undiagnosed for years. This leaves many patients struggling to cope on their own and suffering in silence.

Many doctors believe "functional disorders" to be a mere annoyance to most patients and dismiss it as a mild complaint which is not life threatening. In many cases this is true, lots of patients can live a normal life with a modified diet and a few small lifestyle changes.... however for some, the story is very different. In severe cases it can lead to a total inability to eat or drink adequately which then leads to long term malnutrition and dehydration. Living with any long term illness can have a serious effect on the QUALITY of life and that is what is important to Gastroparesis patients.

We don't simply want to be alive, we want to be able to live life.

Take a look at the "Gastroparesis"  page if you would like to know more about the signs, symptoms and treatment options. Also take a look at "useful sites" for informative websites that have helped me along the way.

So, step one:

Before you visit your GP it is a good idea to do a bit of ground work first. This will help you get the most out of your appointment and give him/her a clear understanding of what life is like for you.
  • Keep a diary of your symptoms, include the time of day and what you were doing ie exercising, resting, sleeping, eating.
  • Keep a record of any food you eat, if possible write down how you felt after you ate ie pain, nausea. It is a good idea to do this in the form of a common pain scale ie 0 no pain 10 worst pain. 
  • Keep a record of bowel movements if this is a problem for you.
  • Weigh yourself once a week to monitor weight loss.

It sounds like a lot of leg work but it's not so bad. You can make up a simple A4 chart to contain all the information. You don't have to go into great detail, it needs to be clear enough for your Dr to read it quickly... so stick to the number scoring and simple descriptions to make it easy.

Take a friend or family member with you to your appointment and don't be frightened of suggesting gastroparesis as a possibility! We can all be guilty of thinking that Dr's know everything and leaving it up to them (after all Dr knows best right?). I have had the "eye roll" from Dr's numerous times for making suggestions etc, but if it sparks a basis for diagnosis then you could knock months off the diagnositic stage! Now that's got to be worth speaking out for!

I have compiled a list of Gastroparesis specialists for the UK, follow the link below x

Doctors List 

Click Here For #Part 2 I hope this helps get the ball rolling for you x

Friday, 11 November 2011

Weight gain!

As promised here is an update on my visit to the dietitian on Wednesday.....

I've gained 3lb!!!!!!

We suspect that this is due to taking on more fluid through the increased feed rate so I must have been severely dehydrated last week! Not surprising I was feeling so low! It was so nice not to stand on the scales and feel that the weeks effort was wasted.

My plan is to increase the feed rate whenever I can tolerate it by 5mls/hr until I get to the magic 60ml point. Then I can start thinking about having a few hours NOT attached to my backpack! I'm so pleased that things are starting to go in the right direction and am looking forward to making some real headway over the coming months. My wounds are healing nicely too, and each day I am able to stand up a little straighter.

I have been very pro active this week and am once again trying to raise awareness for all those who suffer as I do. I have started a facebook page:

You can also friend request me: Minx Natalie.

I'm hoping that this will help my GP community to talk more freely and share research and resources with each other.

Please help me spread the word and get my new project going...I hope to see some of you guys there!

Much love


Thursday, 3 November 2011

I'm back!

Finally I feel up to sitting at the computer...just!

I will post some journal entries in my diary section that I hand wrote in hospital if you would like the full run down. For now I will just bring you up to speed with where I'm at today.

I had my surgery on the 21st of October. All went well and I'm now working hard to get myself well again. I have had a few issues with the feeding regime already but I expected it to be a bumpy ride. After almost 2 years of eating nothing, my body is a little overwhelmed by the new set up. I'm sure that it will all settle down eventually but for now it's like one step forward two steps back. I left hospital on a feed rate of 50mls per hour over 24 hours. This was fine for all of one day but I soon started to feel unwell once I got home. I think it was all just a little too fast for my slow digestive system. I was in so much pain that I had to switch it off all together. After a full night's rest from feeding I  set it going again in the morning at the same speed...determined not to let it beat me! That didn't go too well's all going but it ain't coming out if you get my drift. So after much consideration I had a few hours rest from it and then started it up at a slower pace of 30ml/hr. This is nowhere near enough for me to gain weight on but it's better than nothing at all. So, back to the doctors for some Movicol, which I can now put through my jejunostomy tube (I couldn't take it before because I am unable to drink it). I'm hoping this will help to move things along ASAP! For now though I feel pretty low and very nauseous but hey what's new! I'm psyching myself up for my appointment with the dietitian this afternoon but for now I'm going back to bed.

Tuesday, 18 October 2011

Pre-Assessment for Gastric Neurostimulator

Tuesday 28th October 2011

Ok now back to the future guys, got to keep strong and live for the living. I am still in a sense of total despair but I can't afford to loose my head now. I have a family to think about and that's all that keeps me going these days. Yesterday was my pre-assessment for my surgery. It brought it home to me just how much I need to get on top of things.

For those of you who are new to the page, I am having  a surgical jejunostomy (feeding tube), full thickness biopsies and a gastric neurostimulator. You can view information about the device at:

The surgery is scheduled for this Friday (21st oct). My appointment went as expected, there were lots of questions about my general health, body weight, height, blood pressure etc and a blood test. I didn't need an ECG this time, as I had a cardiac echo in June this year. The nurse was lovely and again, genuinely interested in my condition. She couldn't tell me much about the operation because she hadn't come across the neurostimulator before, so my mother and I explained it to her. She told me to expect to be in roughly 7 to 10 days due to the fact that it involves a laparotomy (the type of incision). I also presume that it will be a slow process getting the feed up and running again.

I am getting really nervous and have had lots of moments where I have nearly called it off, but then I look at myself in the mirror and see a shadow of what I used to be. I look around the house and it's filled with medical kit, boxes of feed, tubes and syringes. I live in hope that this is not the way it will always be and that is why I can't change my mind... although I'm sure I'll change my mind a thousand times between now and Friday!

Wednesday, 12 October 2011

Just one more day

Wednesday 12th October 2011

So far this week I've managed to stay away from doctors and hospitals... an achievement in itself these days. I have just about managed to balance myself out enough to do what needs to be done.

It dawned on me this weekend that I did not have anything smart to wear to the funeral, all my clothes are far too big for me these days. So my mum and I went out to try and find something that fits. Surprisingly I managed to find the perfect dress in the first shop we went often does that happen? So thankfully I didn't have to expend as much energy as expected. Although it has been a struggle to get through this last few days, I feel that grandad is there making sure it all goes well. Tomorrow is the day of the funeral and I have GOT to keep going for that, I am just hoping that life is kind for a change and allows me just one pain free day. I am resting today in the hope that I will be able to stand up for all the necessary parts of the service, I want to be able to stand tall and honor him as I should.

I had a letter last week for an outpatients appointment with my surgeon on the 1st of November. So there I was thinking I would be waiting at least a month for the operation. However today I got a letter with my pre-assessment date as this Monday 17th October and and admission date for Thursday 20th October. That's next week... scared, yes!!!!

For now though, I am concentrating on just one day. The rest can wait.

Sunday, 9 October 2011

Belated Diary entries

The following journal entries are from my written journal. I keep one when I'm too ill or tired to use the computer. Those of you who follow my diary will understand my current situation and I just hope you can bear with me through this roller coaster ride I'm getting right now. I hope to get back to my usual chirpy self some time soon but for now...things are going from bad to worse.

Thursday 6th October 2011

Following my recent bereavement, my own health has decided to take a nose dive too. By Monday morning I was getting the palpitations and nausea in a big way. My hubby dragged me to the doctors and she was not too pleased with my overall condition. She rang through to my consultant in Durham who arranged for me to be admitted the next day, after my botox injections (which were scheduled for Tuesday anyway).

So... here I am again, the last place you want to be following a bereavement. I know I need some rest now as my weight has plummeted from 46.3kg to 42.5kg today. I have promised the family that this time I won't come home without some form of nutrition  to keep me going.

My consultant popped by to see me and said they would keep a close eye on me and if the weight loss continues we may need to change the plan.

I also met my surgeon for the first time today. He was very understanding and promised that I could attend the funeral next week. He initially offered to put the PEJ tube in for me tomorrow, given my nutritional status, but then he went away and read through my notes. He came back to say that they wanted to do all the surgery in one go so I would still have to wait a few weeks for the tube. He was keen for me to have a new NJ in the mean time to keep me going. He told me that we are looking at the end of October or beginning of November for my operation.

I then saw the physician who does all my gastroscopies and NJ placements but he said that he would not be able to do the procedure until Wednesday. He told me to speak to my consultant about it and get back to him asap to book the space.

Friday 7th October 2011

Today is my 30th Birthday.

What a way to spend it. I'm going through moments of shear exhaustion to floods of tears and pain. I've seen my consultant this afternoon and we decided that there is little point in going through another invasive NJ placement only to have it removed after a couple of weeks. So I'm back to going solo. I guess the good news is, that I can go home this afternoon and spend what's left of my birthday with my loved ones.

Perhaps I can have permission to postpone the big "30" until I'm well enough to party a little! So let's just say I'm still 29...just for a little while longer!

Friday, 23 September 2011

Surgical options for gastroparesis

I had my appointment in Durham yesterday to discuss my surgical options. We went through step by step listing the interventions along with a few pros and cons. The options for me were as follows:

1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective.

2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension.

3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future and some would go to medical research to help learn more about gastroparesis.

4. Both the jejunostomy tube AND fixation of a gastric neurostimulator. It is similar to a cardiac pacemaker and works by sending electrical impulses to the wall of the stomach. This is said to reduce the nausea and vomiting associated with gastroparesis. Gets everything done in one surgery. Could help with the nausea enough to enable me to eat again. More invasive as it involves a laparotomy. 50% success rate. The unit will protrude from under the skin and may be very uncomfortable due to my low body weight. Could make things worse by creating scar tissue, especially if it is not successful.

5. Do nothing. Not really an option for me, I would simply starve to death.

An awful lot to take in in a short space of time, but that's where being an informed patient becomes invaluable! I had to make a decision that day, as the tube placement is essential. It will take at least 6 weeks to arrange any surgery so time is of the essence. So, hubs and I went off to have a chat about it and I also rang my mum for advice. The last thing I want to do is make myself worse in the hope of getting better, so I really struggled with my decision. In the end we decided that, if there is any chance that something will help me eat again, then I have to take it, 50/50 or not. So we decided to go with the jejunostomy tube, the biopsies and the gastric neurostimulator all in one go. It was very scary agreeing to have all that done and I may change my mind yet, but for now it is in the pipeline and my options are still open if I do have a change of heart. I will also be having the botox in couple of weeks time.

Medtronic are the company who supply the gastric neurostimulator worldwide. Here is a  link to their site and a map of hospitals in the UK who perform this procedure: 

I would love to hear from anyone who has had these procedures, your advice would be invaluable to me. You can only get so much information from the medical journals, I want to know what it's really like for if you have one please contact me by leaving a comment below or email me at:

Sunday, 18 September 2011

No water!

Wouldn't it be nice if the systems that are put in place actually work! I have had some major issues with the company that provide all the kit for my feeding tube. I was supposed to get a delivery of sterile water on Tuesday this week. It didn't arrive but I had enough to keep me going and the dietitian ordered it again for me on Thursday when she came to visit. They promised to have it to me by didn't arrive. So I rang them myself and they apologised and told me they would send it on express courier and it would be here by 10:30 on Saturday morning. Yes you didn't arrive! I don't have the 24hr number to ring and they don't deliver on sundays so it's going to have to wait till Monday for me to sort it out. In the mean time I'm left with the problem of no water to irrigate the tube with. I had to trek out to the chemist to ask them if they had any but they don't stock it. They suggested I go to the little minor injuries unit at the local hospital and ask them. So, off I went, with my pump (I still don't have a backpack for it!) and two kids, to find some water. They did have some there which was a huge relief but its in IV (drip) bags, so I really did look like a hospital escapee when I walked out of the building with my drip stand, a tube in my face and two bags of IV fluid under my arm! I was just missing the hospital gown with the split up the back lol. The kids found it very amusing!

Thursday, 15 September 2011

Demon Days

Sometimes in life you really do have to question your very existence on this earth. As much as you try to get back on your feet...something always knocks you back down. This is the way it has been for us for as long as I can remember. So, what do you do? Pick yourself up, dust yourself off and start again. It's just what you do right? That's what the world expects. But what happens when you get tired of the knocks and scrapes and too frail to get back up again and again? My baby girl decided it was time for drastic action, so...she decided to write a letter to God. We are not a religious family but allow the children the freedom to make up their own minds about such matters. Here it is:

Dear God,

Thank you for the world, even though people do bad things, you have to stop people being bad. I want the world to be good!

From E. 
Aged 9

Nothing quite like the sheer straight forward sense of a nine year old eh! She gave me the letter and then promptly asked me if I knew Gods email address ha ha well this is the 21st century lol.

Those are the moments in life that keep us going. They may be few and far between sometimes but they are just enough to get us through the darkest of those demon days. When life keeps knocking you down...go ask a nine year old what they would do!

Sunday, 11 September 2011

Face Ache!

OK OK that will teach me, never speak too soon!

I have the most excruciating pain in my nose, face and throat. I have had 4 tubes in total now so I know roughly what to expect these days...but this is something else! I started with the mega sore throat yesterday so I went to the chemist and stocked up on over the counter anaesthetic throat spray. It helps a little but it soon wears off. So, step two was to try and eat some ice-cream to soothe it. Bearing in mind I have not eaten ice-cream since a bad experience over 8 months ago. It was brave, but hey, I was having a good tummy day so why not?

Today I know "why not"....vomiting your guts up is not a good way to soothe a sore throat! Especially when you have a tube to contend with too. What on earth was I thinking????? In shear desperation to soothe my throat I managed to aggravate every nerve in my face, to the point where I'm struggling to speak or even swallow and my eyes are streaming with tears from the pain in my nose. 

What a plonker!

Friday, 9 September 2011

Home Sweet Home

Friday 9th September 2011

Hey folks, I'm back!

Everything went according to plan, I went into hospital on Tuesday to have the naso jejunal tube fitted. It was a bit of a painful experience this time round, the medazolam (sedative) started wearing off just at the worst possible time. Needless to say it was not a pleasant experience and my nose and throat hurt like hell...BUT I don't care...I'm finally getting some food. I would put up with anything for that and at the end of the day it was only 5 minutes of pain in exchange for months of agony and starvation.
I'm so grateful to everyone at Durham for helping me to get some quality of life back after all these months of uncertainty.

The treatment...

I had a few days on IV Pabrinex (Vitamins) which has made me feel much brighter in myself. I have also been able to give my body a real rest this week with plenty of quality sleep and NO FOOD yipee!!! I am so relieved not to have to face the cycle of eating and vomiting every day, I can now get the calories I need virtually pain free! Yes my nose and my throat hurt and people stare a little but to me it is SO worth it!

I started on 15mls an hour for 24 hrs will be gradually increasing the dose every few days so that eventually I can just connect to the pump overnight and not have to cart it around with me everywhere. At the moment I am on 40mls an hour for 24 hours so it has to go everywhere with me. Meaning that I'm a little housebound at the moment because I don't yet have a carry case for during the day. Hopefully that will arrive next week and then I will be able to get out a bit more. I was sent home with 7 days supply of syringes, giving sets, sterile water (to flush the tube with) and the bags of feed. At the moment I have a Z stand to hang the bag from which I can carry around the house but the tubes do get in the way a little and a few times I have stood up to go somewhere and forgotten to pick it up (which really helped the sore nose!) so I think it's going to take a while to adjust to having it around.

If I have any problems like the tube getting blocked or dislodged they said just to go straight back to the ward. The staff are all lovely there and so much more organised than my hospital here at home. The community dietitian is coming to see me on Tuesday next week and I have a written plan of what to do until then, with all the contact details I need etc. Believe me after months of dealing with illusive Drs it is so refreshing to be given all this information without having to ASK for it! What can I say? What a team!!!

So all in all it went very smoothly and I'm back in my own comfy bed with very little pain and a belly full of food...yay! Maybe NOW I can start getting my life back!?

Oo and just to say thank you to the anonymous lady who sent me a wonderful message earlier this week, I have posted it at the bottom of the "your stories" page. I hope things improve for your daughter soon, but feel free to contact me any time, I'm always happy to help in any way I can.

You can email me at

Love and hugs and a big happy smile from Minxy xxxx

Sunday, 4 September 2011

Tips for Hospital Trips!

Only 1 full day left before I finally get my feeding tube. I have had no bad news from the hospital saying it's been cancelled or anything to suggest that it won't finally go ahead.  I have been packing my bag and thought it might be useful to post a list of essential hospital packing.

I won't go through the usual stuff like toiletries and nightwear, we all know that...but here are a few extra things that may help.

MP3 player
Laptop (and mobile dongle!!)
Warm blanket (so you can have a little piece of home with you!)
Scissors (always handy!)
Surgical tape (for those pesky tubes and cannulas)
DAY Clothes (so you can feel a bit less intimidated when the Dr comes round, plus it helps you feel human again! But be sensible and choose easy loose clothing)
Lip balm
Hair clips/Alice band (you never know how long it will be before you can wash your hair!!!!)
Sweets (For the nurses, they will come and talk to you more lol)
Cotton buds
Perfume... but don't take your favourite one, it will forever remind you of hospitals after!

If you are on an NG or NJ tube:

Soda water (to clear blockages, they never have any on the ward)
Throat lozenges (it always takes a day or so for your throat to settle into a new tube)

Quite a list I know but if you do it right you can fit all that into one medium rucksack which will fit into most hospital lockers....and oooh Don't forget your toothbrush lol!

Sunday, 28 August 2011

Blog changes

As I am spending so much time in bed again recently I have decided to take my mind off things and make some changes to the blog. I am going to try and improve the usability a little by posting all new diary updates on the HOME page and also archive them in the diary section for a one page overview (just the way it is now). This will make it much easier for you to just pop in and read the latest update. I hope this will help you all to navigate the site a little better.

I would like to say a huge thank you to all of you who have sent messages and left comments for me, they really do help!

If anyone has any suggestions on topics you would like me to mention feel free to email me with your ideas. You can contact me at or leave your suggestions in the comments box.

Friday, 1 April 2011

Tell me your story

 I am looking for people who want to share their stories of living with EDS and/ or Gastroparesis. Why not be brave and email me with your own mini blog. Or you could leave a note about yourself in the comments box. It would be great to hear from anyone out there. I also welcome messages of advice and tips for staying well. Really...what ever you want to say, you now have a place to say it. I will post all suitable entries in the "Your Stories" section, so together we can have our say!


Inspire health and wellness support groups

Tuesday, 15 February 2011

your stories here

please click "comments" to write your story here. I want to hear from anyone with EDS or any long term illness. I want to raise awareness of rare conditions and how people cope with the physical constraints of being chronically sick.  Be brave and stand up and be counted, why not be the first! x You can also post any comments about my diary on this page too...I need feedback people xxx