A Zebra's Journey To Independence

So today I have made a page on Facebook called 'A Zebra's Journey To Independence'. The reason behind this is because I have been using a self propelled wheelchair for just under a year now and my health has started to deteriorate rapidly just recently with increasing pain in both of my knees, frequent dislocations and a lot of falls. 

This has resulted in me loosing a lot of my mobility and independence. I started to get really down and depressed as I am only just 24 and unable to get out and about. 

The wheelchair that I currently use is lightweigh but unfortunately it is still to big and heavy for me to use causing my shoulders/ wrists and thumbs to dislocate and I am no longer able to self propell. 

Wheelchair services are very helpful but they are unable to supply the kind of wheelchair I need which needs to be a super lightweight carbon/titanium wheelchair. The price range is around £3000 upwards. I will need to raise the money to be able to gain back my independence. 

I know this is not going to be easy as there is not a lot of fund raising events I can do due to not being able to get out and about but I will do everything I can. 

I have learnt myself to crochet and have made some owl phone cases which I would like to try and sell to put towards the funds. 

If anyone has any fund raising ideas that I will be able to do then please let me know.

I understand that there are a lot of people in my position that do not have a great deal of money but if anyone would like to make a donation then you can contact me via my blog or my Facebook page: www.facebook.com/rebeccaeds3 

Thankyou for taking the time to read xx

What's been happening?!

Well I am so sorry I haven't been very active just recently, it hasn't been by choice... 

Last weekend I was really struggling with the pain in my knees and shins and come Monday morning I could no longer cope! The pain was so intense I could not stop crying and I just could not function. 

I called my GP Monday morning and explained that my knees keep subluxing and the pain is getting unbearable, there was a lot of pressure in my knees too! I had taken Zomorph, Oramorph along with all my other pain medications but it didn't seem to be making any difference.

My GP was very concerned and advised me that he was calling an ambulance to transport me to hospital and they would be with me within two hours. 

I went to Queens Medical Centre instead of my usual hospital of Kingsmill Treatment Centre. It seemed like I was waiting forever to see a Dr but when I did I couldn't of asked to have seen anyone better. 

The Dr had a nurse put a canula in my arm (which wasn't fun as my veins seem to move all over the place) and they have me some IV morphine. The Dr explained that there wasn't much else pain relief wise that they could administer as I had already taken a lot and have tried a lot of previous medications that do not have any effect. She asked me if I was keen to get home and I said yes of course, but told me to be prepared to stay in hospital. 

She knew what Ehlers-Danlos was but wasn't experienced with dealing with people with our condition so she went to consult with her senior. When she came back she said that they have decided that it would be better to admit me to hospital so they can try and get on top of the pain before letting me go home. 

I hadn't eaten all day so when I got on the ward they made me some toast and brought me some biscuits and someone went up to costa coffee and the shop for me :) 

I had a latte as it is my favourite and got myself one of their flask things as they seal really well and can be carried around without spilling it. I also got a giant Sudoku book which I really enjoyed doing as it helped take my mind off of the pain a little. 

The staff on the ward were great. I couldn't sleep all night due to the pain, my blood pressure dropped really low so they kept coming in to check it every hour and try put me on a IV paracetamol drip and then gave me some fluids. At around 2am the pain started to get really intense again so they called the Dr down to check on me and administer some more pain relief. 

Around 7am Tuesday morning I had just managed to fall asleep when the doctors came to do their rounds. I was sent for an X-ray which came back ok and my bloods didn't show a huge increase in inflammatory markers but they decided they wanted to keep me in for another night. 

I was eventually allowed to go home but I didn't feel like I was any wiser for being in hospital, my medication has stayed the same and I was still in a lot of pain but i was just soo glad to be home. I literally spent most of Wednesday just catching up on sleep. 

On Thursday I was supposed to have hydrotherapy which I have every week but I really didn't feel able physically to leave the house so I didn't go and spent the day relaxing. I decided to do some crochet. 

I have never made anything before but my mum has been looking for a phone case for her new phone, she loves owl and her favourite colour is pink! So this is what I made her: 

I love it and it is soo pretty <3 

Friday, yesterday, I was feeling a little bit better. I went to my physio appointment at KMH. It went pretty well but I'm not able to do a lot of physio due to my knees and left hip dislocating so frequently. I am unable to hold my right foot up and have a lot of muscle loss. When I got back from the hospital we decided to go to Skegness. 

I haven't been out for the day for a while and I really enjoyed it even though we were only there for a couple of hours. We went to the beach and then had some dinner and come home. By the time I got home I was absolutely exhausted and went straight to bed. 

Today I am in a lot of pain again but it was definitely worth it yesterday to get out of the house for a bit. I shall be spending the rest of the day relaxing :) 

Now I am home and feeling a little better I will be able to keep up to date with posting. You will hear from me shortly! Xxx

Visiting the Gastroenterologist 🍀

Yesterday, Friday 15th May I had two appointments... 

As some of you may know I have been having a lot of Gastro problems, not keeping food down and feeling constantly nauseous 😔

One of my appointments was with a Gastro Dr and Kingsmill Hospital, I was really nervous about the appointment as I had no idea what to expect or what was going to happen... 

In the last month I have lost a significant amount of weight and gone from a size 12-14 to a small size 8. 

Here is what happened... 

My appointment lasted around 40 minutes, the Dr was a nice gentleman but I feel he had no interest in Ehlers-Danlos Syndrome, probably due to a lack of knowledge which I seem to find a lot with Dr's at the minute. 

I explained I have been having a lot of pain in my upper abdomen, nausea and weight loss. 

At first he tried to say that it could just be my IBS but I explained that is not the case, I haven't had an IBS flare for a while and I'm not having toilet issues as I'm not actually consuming a great deal. 

I told him that I had been taken into hospital numerous times due to being sick to the point I am bringing up my stomach lining, my blood sugars dropping dangerously low and passing out. I mentioned that people with EDS are prone to gastro problems such as gastroparesis. He dismissed this saying that he doesn't believe EDS has any part in what I am experiencing and was more interested in whether or not I could make my thumb touch my wrist and how flexible I am 😡 this really annoyed me. 

After me expressing how worried I am about what is happening and how frustrating it is not being able to eat properly without feeling constantly sick and told him that my GP had already tried numerous anti-sickness medications, iv tried a soft diet, liquid diet, going lactose, gluten and wheat free, iv tried fortisip drinks to stabilise my weight to no avail and I'm really struggling, he then decided to book me in for the following tests, 

An endoscopy (urgent) 

A barium test 

Blood tests 

And gave me a different tablet to try for the meantime. 

He then said that between now and when we have the test results if I am still not keeping food down and my weight continues to decline then I must admit myself to a&e and then they will fit an NG tube until they can figure out what is happening. 

I feel like I am non the wiser after leaving the appointment but I am grateful that tests are being carried out and hopefully we may find out what is wrong. 

What is an upper GI endoscopy? 

An upper gastrointestinal endoscopy is a procedure to look at the inside of your oesophagus (gullet), stomach and duodenum using a flexible telescope. This procedure is sometimes known as a gastroscopy or simply and endoscopy. 

What are the benefits of an upper GI endoscopy? 

It is a good way of finding out if there is a problem, if the endoscopist finds a problem, they can perform biopsies to help make a diagnosis. 

What does the procedure involve? 

You are told not to eat in the six hours before the procedure and to only drink small amounts of water for up to two hours before. This is to make sure your stomach is empty so they can have a clear view and will also make the procedure more comfortable. 

The endoscopy usually takes around 10 minutes and if appropriate the endoscopist may offer you a sedative. (This will be given through a small needle in your arm or the back of your hand) 

They will usually spray your throat with some local anaesthetic and ask you to swallow it. (This may not be effective for those of us with EDS) 

You will then be asked to lie on your left side and a plastic mouthpiece placed in your mouth. 

The healthcare team will monitor your oxygen levels and heartrate. If you need oxygen, they will give it to you through a mask or small tube in your nostrils. 

A flexible telescope will then be placed into the back of your throat. They may ask you to swallow when the endoscope is in your throat, this will help it to pass easily into your oesophagus and down into your stomach. From there the endoscope will pass into your duodenum. 

The endoscopist will be able to take pictures and biopsies if necessary to make a diagnosis. 

The procedure is not painful but your stomach may feel bloated because air is blown into your stomach to improve the view. (Mr Simmons Parsons DM FRCS (Gen. Surg.) 

I will talk about the barium test in another post as I do not currently know enough or have enough information about the test itself in order to make a reasonable explanation. 

My second appointment was with the orthotics department... 

In my Braces post I talked a little about my Lycra suit, because I have recently lost a great deal of weight it is no longer supportive enough to hold my joints in place, so I had to have all my measurements taken again. 

The orthotist also gave me an aspen collar. I don't currently know whether or not I have chiari but I do suffer with severe migraines, pain in the base of my skull and I also have what they call "bobble head". I am to wear the collar for 1hour and 30 minutes a day to give the muscles in my neck a rest and to help support me.  

 Hopefully this will help to reduce the amount of migraines I am getting 😊. 

That is all for now, hope you enjoy reading and if you have any questions please feel free to message me and I will get back to you x 

Painsomnia

I think we all know what pain is, especially those of us who have EDS. 

But what is Insomnia? 

Insomnia is difficulty falling asleep or staying asleep long enough to feel refreshed the next morning. 

The most common symptoms of insomnia are: 

-  Difficulty falling asleep.

-  Waking up multiple times during the night. 

-  Waking up early in the morning and not being able to go back to sleep. 

-  Finding it difficult to function during waking hours.

-  Feeling irritable and tired. 

So what causes Insomnia? 

-  Stress

-  Anxiety

-  Medical conditions linked to sleep

-  Depression

-  Asthma 

-  Environmental factors and lifestyle choices 

- And of cause pain... This brings me to Painsomnia... 

What is Painsomnia? 

Painsomnia is insomnia caused by pain. 

Unlike Insomnia that is caused by environmental factors or lifestyle choices  that can be adjusted, there isn't a great deal we can do about Painsomnia except from trying to manage the pain and staying comfortable. 

I would advise anyone that is suffering from a lot of insomnia due to pain to contact there GP and see if there is anything that can be done to manage your pain more effectively as lack of sleep can cause you to be more prone to accidents and falls and heightened pain. 

What can be done to help with Insomnia? 

-  Avoid caffinated drinks later on in the afternoon. 

-  If possible try not to take naps in the afternoon. 

-  Avoid eating heavy meals too close to bedtime. 

-  Using blackout curtains/blinds or an eye mask to keep out light and ear plugs to block out noise. 

I have recently come across something called Sleep Phones, they are great for wearing in bed, whether you are using them to listen to relaxing music to help you sleep or if you are wearing them whilst relaxing in bed because the speaker is completely flat and you can lie on your side without anything pressing into your ear/head making you uncomfortable. 

These are the ones I own, there are a lot of different designs on the Internet. 

I am actually struggling with Painsomnia myself this evening and that's why I'm sat here writing a blog post at 12.15am! 

I hope this helps :) thankyou for reading! 

My first day out in forever!

So I woke up this morning feeling rather anxious and in a lot of pain on top of my current gastro problems but I was determined not to let this get in the way of my first trip out in what seems like forever! 

I am in a wonderful support group and this is who I was going on the trip with. I suppose you want to know where I went right?! 

Cadburys World !!!! 

Although I felt really sick I managed to muster up a smile and get ready to go! 

This was me on the way to the pick up point where I would be meeting the group and getting on a coach to Birmingham, 1 and a half hours away. I must say I really wasn't looking forward to sitting on the coach for all that time but the lovely ladies kept me occupied, involved in conversation. 

So here are a few photos I took :) 

This was the entrance. 

I didn't actually get a picture of inside the shop but it was huge and I brought lots of goodies including, a purple cadburys hoodie, a chunky pen, a broach and of course chocolate gifts. 

I made a little wish for all my fellow zebras :)! 

The chocolate smelt so beautiful!!

This is beautiful and was made to celebrate the birth of Princess Charlotte Elizabeth Diana.

This egg was huge and was made entirely from chocolate as well as everything inside! I wish I could of taken it home :) 

The old chocolate bars and advertising, it was amazing to see how things have changed over the past 100 years. 

There are a few other photos which I will post on my Facebook if anyone wants to take a look. 

So now I shall tell you about the day itself... It was a wonderful place and I am soo glad I managed to push myself to go, I had a great time and it was awesome to be out of the house for a day out for the first time in a long while. 

I was a little disappointed that I could not access all areas of the tour due to lack of wheelchair access and a lot of steps and I also didn't make it to the end of the tour as I started to feel really fatigued and my pain levels were pretty raised by this point. 

When it was time to come home I was definitely ready, it was a very long day out for me and I found it really exhausting. As soon as I got home I managed to get myself to bed at 5.30pm and had a little nap. Unfortunately that means I am now wide awake at 11.45pm. 

Overall it was a great day but thanks to EDS I won't be going anywhere else for a while again now and will probably spend the next few days bed bound recovering but it's good to get out once in a while! 

Much Love Everyone, Stay Positive xxx

Im Still Alive... Just!

So i haven't been able to do any blog posts for the past few days because my health has taken a turn for the worse.

I am still struggling with nausea and vomiting and of course loosing weight. So because im not able to keep a great deal of food down I am feeling very weak and tired Constantly! This has been happening now for around a month and I have been hospitalised quite a few times as a result because of my blood sugars dropping down to 2.2. The hospital in my area is pretty useless and doesn't ever seem to want to do anything in the here and now, they would much rather make referrals. 

So I have been seeing my GP a lot lately and he is rather worried about the gastro problems so he made an urgent referral to a gastro Dr who has knowledge of EDS over 3 weeks ago. One week in we hadn't heard anything so my GP sent over the referral by fax directly to the Gastro department, Week Two we still hadn't heard anything so my GP called the department and they said that they will get an appointment letter sent out to me. It is now Week Three and still no appointment letter. 

Yesterday I forced myself to have something to eat and shortly after eating I started getting intense stomach cramps, palpitations and sweating. I stood up to go to the bathroom as I felt really sick  but didn't actually get very far before i fainted and collapsed... 

When I came round both of my knees were dislocated, I was in soo much pain it was unreal. I managed to pop them both back in place but my right leg was having a lot of spasms and my left knee cap was sitting a little too low so I ended up having to go into hospital. They put my kneecap back where it should be and just told me to go home. 

The hospital in my area is appalling, they are really rude an arrogant! Before I was diagnosed with EDS they were really good but now I have a diagnosis they just don't want to know or just don't want to touch you!

Today I am feeling really sick and really weak and tired so I am literally doing nothing all day, I haven't even got dressed and I don't intend on doing so until I have a bath later and I will then only change over into some fresh Pj's. Im sorry this isn't a very interesting post, I will try and update my blog as much as possible whilst im feeling ill but obviously cant make any promises!

I hope your all feeling as well as possible, Much Love, Peace Out!

Ps. You will notice that from now on I will be making the writing a little larger and will also be putting colour behind the text. This is following a request made by a lovely lady with dyslexia that was finding it hard to read the writing as it was before. xxx

Lets Talk Pacing!

So what is Pacing?

Pacing is doing small amounts of regular activity guided by time rather that pain. A lot of people will carry out an activity using pain level as an indicator of when to stop. Pacing aims at stopping an activity before the pain increases and knowing when enough is enough.

People suffering with Chronic Pain tend to wait for "good days" in terms of pain levels to come around and then they will do a lot, pushing themselves to the absolute limit and as a result will end up in more pain and resting for a longer period of time. Pacing teaches you to do a realistic amount of activity so as to not completely exhaust yourself resulting in not being able to do anything for long periods.

It is very important to pace every activity up little by little, even things like sitting down and standing up.

Just standing up can be difficult for people with EDS-HT because it is a constant battle to 'just be'. We have reduced ligamentous support and proprioception so we spend time exploring with each joint just to get a sense of 'where we are', which is even harder when standing. What everyone does subconsciously we have to consciously think about all the time, which is why we become fatigued so quickly due to using up extra brain power.

So how do we measure Pacing?

When measuring pacing, two measurements are taken of a particular task or exercise.
For example, Standing... I would start off by measure my standing tolerance one day and then repeat the same thing again the next day, giving me two measurements. This is how we would work it out.

So if on Monday i managed to stand for 60 seconds and then on Tuesday i managed to stand for 90 seconds we would add the two totals together, divide by two and minus 20% to get a baseline reading.

60 + 90 = 150 seconds
150 / 2 = 75 seconds
75 seconds - 20% = 60 seconds

That gives us a baseline starting point for standing of 60 seconds. You may then decide to 'pace' up this activity by 1 second a day. So if you started at 60 seconds on day 1, by the following week you would be on 67 seconds.

Applying Pacing to a Task – The Rule of the 3 P’s

Prioritise -  Do you need to do the entire task today / in one go? Can you get someone else to help? Does the task need to be done at all?
Plan - Can you break the job into different stages? What do you need to carry out the job? What basic activities does each stage involve? (e.g. walking, sitting, standing)
Pace - There are 3 main aspects to pacing: 1. Breaking tasks down into smaller bits – Part of prioritising 2. Take frequent short breaks a. Do something for a set time b. This breaks the overactivity / underactivity cycle c. Helps to even out your activity over the course of a day d. ‘Taking a break’ does not mean stopping completely e. Change your position or do something else for a short while.

The benefits of pacing are that you will be able to do things more reliably, rather than being able to do a huge amount one day but then nothing for the next 3 days because you were recovering. 

I hope this makes sense :)

PROPRIOCEPTION...

One of the problems people have with Ehlers-Danlos Syndrome is Poor Proprioception.

So what is Proprioception?

It is the awareness of our joints in space, or should i say lack of awareness of our joints in space and the end range of movements. This is partly why we get into the situations that we do and are so unaware of how 'bad' our alignment looks because we cannot sense it.

Due to the collagen laxity in people with EDS-HT there is continual movement into an extra range of joint movement and means we are more prone to injury because of the poor sense of spatial awareness of joint proprioception. Proprioception is determined by the spatial awareness of one's joints. For people with EDS-HT this judgement is impaired due to their poor joint proprioception, particularly at the end range of movement into their hyperextension.

People have questioned whether or not EDS is a problem of the neurological system? I think not. EDS-HT is a connective tissue disorder, this affects the connective tissues that will indirectly affect the neurological system because there is connective tissue and collagen surrounding the neurological pathways but this does not mean it is a neurological disorder. Poor proprioception is as a result of lax tissues which result in the nervous system not getting the feedback from the joints or the tissues. The nerves cannot sense the end range because they are not getting the feedback required from the soft tissue.

A poor sense of proprioception could explain why people with EDS-HT are more prone to accidents and injuries, because they are not aware of there end range of movement. In females the onset of menstruation can cause symptoms of joint pain and instability to worsen, This is because menstruation increases the release of the hormone progesterone, which further relaxes collagen further impairing proprioception.

Poor proprioception is very debilitating because the proprioceptive system is such a basic system in being human and in most people it just comes naturally but if this system is not working properly, the sense of not knowing where your joints are in space is basically eroding a sense of identity.

This can result in a whole list of difficulties which are linked into EDS-HT. These difficulties can be, overuse, dislocations, subluxations, soft tissue injuries and poor healing due to constant re-injury.

So it is thought that people with EDS-HT are prone to have poor proprioception because of tissue laxity of the soft tissues.

Motor coordination is reliant upon accurate proprioceptive feedback, so as a result of poor proprioception there can be a delay in motor development. This means that children with EDS-HT tend to learn to walk alot later than a child without EDS-HT and may experience problems with coordination.

So how do we manage proprioception?

It is possible to improve proprioception through exercise and exercise will also improve muscle tone which is why it is important for EDS-HT patients to be gently and slowly rehabilitated with exercises because improving proprioception and muscle tone may potentially reduce the number of ongoing traumas.

The following things can help with the management and improvement of proprioceptive dysfunction:

• Joint stabilising exercises
• Avoiding hyperextending joints 
• Reversing the deconditioning of muscles which is as a result of muscle disuse
• Enhancing fitness and stamina through appropriate aerobic exercise ( please do not attempt these exercises without speaking to your physiotherapist first ) 
• Improving your core stability
• Using coping mechanisms and managing pain by pacing

It is no wonder that people with EDS-HT that are experiencing poor propriception also suffer from anxiety. It is like a constant battle of stability and can be very difficult being in a body that feel chaotic and out of control. It is thought that EDS-HT shares some of the genetic bases of anxiety but surely poor proprioception and physical instability caused by tissue laxity must also contribute to this.

I myself have poor proprioception and it is not as easy as said to just 'put it right' or 'improve it'. I wear a lycra suit as seen in my braces post, this helps support my joints but it also helps with proprioception because it is tight to the skin and therefore gives immediate sensory feedback regarding the misalignment of my joints when moving. It also helps me to hold myself in a better position because with the suit on i am aware of where my body is.

Using KT tape can also aid you. I use tape on my knees, shoulders, elbows, wrists and hips, to help support my joints but because the tape will pull on skin during movement it also gives immediate sensory feedback.

I hope you find this post useful. I have taken alot of information I have read in Isobel Knights Living with EDS book and just conveyed it in my own words. The book is very informative and a good read :)

Let's Talk Braces!

Some of you may know that when having EDS - Ehlers-Danlos Syndrome joints are very lax and prone to dislocations. I suffer with multiple dislocations a day and they are horrendously painful no matter how many times it's happened you NEVER ever get used to the pain. 

I would like to show you some of the braces I wear on a daily bases to help support my joints, unfortunately it doesn't always stop them from dislocating but it does tend to help me when pain when my joints feel more stable. 

These are the supports/braces I am going to talk about today. Different things work for different people, so just because this is what works for me, it doesn't always mean they will work for someone else. 

So I will start off with my Lycra suit 

This was specifically made to my exact size. It is a Sensory Dynamic Orthosis. This helps hold me together as much as possible and helps me be more aware of my joints in space due to lack of proprireception (not sure if I spelt it right but I will do a separate post on this). 

The top half of the suit has reinforcements across the top of the back and shoulders, helping to keep my shoulders in there rightful place, the bottom half of the suit comes from the waist right down to the mid calf. They have reinforcements in the hip area and knee area, again to help keep my joints in there rightful place. The Lycra is skin tight and can become very warm on hot days, but is great as support and an extra layer in winter! 

Next are my ankle braces.

My ankles tend to roll very often when I am walking and overall feel really weak. These braces help to stabilise them and prevent them rolling too often. They are surprisingly lightweight and breatheable. They also fit nicely in your normal shoe size as they are not at all bulky. 

Next are my knee braces... 

I have tried many knee braces and they have failed to do what I need them to do. 

My knees are very hypermobile and tend to hyper extend a lot. My patella dislocated and subluxates many times during the day. 

They do give me a great deal of support but they do not stop my knees from hyper extending. These are patella stabilisation braces so have extra support around the patella to help prevent it from dislocating. 

What I don't like about these braces is that they have to be pulled on. This hurts and sometimes dislocated my shoulders and even my knee in the process. 

The positive is that they are very lightweight and not bulky so can be worn under clothing easily. 

Next are my wrist and thumb braces... 

These a two different kinds of braces. 

The black ones immobilise the thumb and are to help prevent dislocation and the nude colour ones have a thermo plastic insert that has been moulded to the shape of my thumb and these are worn after a dislocation to help support and protect the area. These braces I wear a lot and they have served there purpose as much as possible. 

I also have this, a thumb spica. My right thumb tends to dislocate more as I am right handed and I have to wear this when I have had multiple dislocations to fully immobilise my thumb. 

Next are my finger splints also known as O8's and my index finger splint. 

The O8's help support the finger joints and prevent dislocations. I have found these great and will be thinking about having some made in sterling silver :) 

The thing next to it is my index finger splint, and some self adhesive tape. The tape holds a thermo plastic splint over the top half of my index finger to stop it hyper extending when writing. 

Next are my resting splints. 

I wear these every night for bed as I suffer with severe pain in my wrists and a lot of cracking and crunching. These help keep the wrists/hands fully rested and prevents them from curling in whilst sleeping. They don't look pretty and they are pretty bulky but they definitely do the job! 

And lastly is my shoulder brace... 

I am not a fan of this brace at all. I personally find it very bulky and uncomfortable. It can be used to help support the shoulder and prevent dislocations.

All of my braces have been made and supplied by the orthotics department.

I hope you all found this useful, if you have any questions then please feel free to ask and I will do my best to answer :) 

EDS && Stomach Problems...

Unfortunately I haven't been able to be as active as I would of liked to have been on my blog these past few days due to Stomach pain and nausea... 

It all started a few months ago, I had an intestinal impacted and was hospitalised until it had all cleared. It wasn't at all pleasant. 

After coming out of the hospital I started experiencing problems with lactose, gluten and wheat. After eating any of these I would experience stomach cramps and pain. It started to put me off of my food and I switched to lactose, gluten and wheat free products where possible. 

More recently I lost just over a stone in weight in just over two weeks.. A lot of people would be pleased with the weight loss but I wasn't as I hadn't been on a diet or done anything to assist the weight loss and it worried. 

Then last week I started being sick, the pain in my stomach was unbearable and I couldn't even keep fluids down. 

I went to see my GP and he said he suspected a stomach ulcer due to my medications and advised me to stop them completely, this caused more problems and the sickness got worse. I was beginning to pass out and feel really dizzy. I saw my GP three days in a row and he finally suggested I may need to go to hospital but I was reluctant. I was told if it continued and the pain worsened then I must call for an ambulance. 

The same night I went into hospital and was given fluids and sent home. The next day I was taken into hospital again, given more fluids and had blood tests which came back fine. There was nothing wrong but I couldn't keep anything down. 

I went home and battled the sickness as much as I could. At this point I hadn't eaten for three days but I was still being sick. That night I started bringing up my stomach lining and passing out, I don't remember anything. The next thing I knew I was in hospital. They put me on IV fluids 3 times, but I was still being sick. A nurse came in and took my blood sugar, it was 2.4 and that's when they started to worry. They put me on two lots of IV glucose, glucose gel in my mouth which I would bring straight back up but it wasn't changing my blood sugars. 

They tried to get me to eat cornflakes with lots of sugar on them, I really did try but it was making the sickness worse. Eventually my blood sugar put itself right and I was put on the emergency assessment unit overnight. The sickness subsided slightly and the next morning I was aloud to go home. No diagnosis was given, I was just told I would be contacted to go back for an endoscopy and further investigations. 

I haven't heard anything yet because it has been the bank holiday weekend so hopefully someone will contact me tomorrow.

I'm still in pain with my stomach and feel constantly sick. I really hope they find out what is wrong and do something to help put it right. My GP now thinks that it is linked to EDS, I guess we shall find out soon... 

I LOVE Art Therapy :)!

So we all have things we enjoy doing, but due to the effects of EDS we have to take a step back and do things a little differently. 

One of the things I have grown to love is colouring. I have accumulated a collection of adult colouring books and felts and pencil crayons. It is a great activity as it allows your mind to be active and creative but it's something you can still do on bad days whilst sat up in bed :) 

I struggle with the little bones in my wrists  dislocating and my thumb and forefinger dislocate more often than I would like lol. But this activity is still possible when wearing my braces and supports. I will do a post about all the different kind of braces I have shortly. 

Here are a few of the pictures I have enjoyed doing... 

I hope you like them :)! 

Pain, Pain And More Pain...

Okay so I may be feeling a little sorry for myself today but we're entitled to do that someday a right?! 

Before I went to bed last night my right knee started to hurt a lot more than normal and I knew it was going to be a long night ahead. 

In 2014 I had a lot of problems with this particular knee. I had had a lot of previous dislocations, starting around 6-7 years ago but the in March 2014 I tripped over my beautiful dog Jessie. This caused my knee to dislocate and I was taken into accident and emergency. They gave me pain relief and reduce my patella back into place and they stuck me in a full leg cast for two weeks. 

When I went back to have the cast removed my leg felt so weak due to muscle loss. Muscle loss begins very soon after immobilisation. At this point Ehlers-Danlos Syndrome was very evident and doctors had discussed that this was what I may have due to my complex medical history and severe joint hypermobility but it wasn't a definitive diagnosis. So because of this and lack of understanding by professionals I was free to go home, still undiagnosed and without a brace or any other kind of support. 

Just one week later I had a fall in the shower due to my knee spontaneously dislocating, I hit my head and bruised all of my face and fractured my scaphoid in my wrist. Again I was taken to accident and emergency and X-rays were done. They showed that the patella was sat very low down so I was taken in resuss given lots of analgesics whilst a doctor put my knee cap back in its rightful place. I was having severe muscle spasms that were causes my kneecap to further sublux so they kept me in hospital over night. 

The next morning I was again put in a full leg cast (bright pink) and also my wrist in cast. This proved to be problematic as with my arm being in cast and me not being allowed to weight bare I needed to use my trusty crutches but this was not possible with my arm in cast so I had to see the physio therapists and occupational therapists and they supplied me with a walker but was told that I was only to walk when absolute neccessary. 

I spent the next 11 weeks bed bound with chronic pain and muscle spasms. There was a huge mix up at the hospital with my notes and doctors leaving and I was forgot about. I should only have been in cast for 6 weeks! 

When having the cast removed there was massive muscle loss and I couldn't do a straight leg raise, I had lost so much muscle that my leg just wouldn't work and I had to lift it to get in and out of bed.  This time I saw a Dr that actually listened to me and put me in a patella stabilising brace and was aloud to go home. It was less than a week until my knee dislocated again and I was back in a full leg cast. The doctor wouldn't listen to me when telling them how much pain I was in and my worries about my knee were dismissed and was told I would receive a letter in the post notifying me of a date to come and have an mri scan. 

The date of the Mri came around swiftly and I had the cast removed. The doctor would receive the tests results shortly. 

I never received a letter for an appointment to discuss the results and suprise suprise my knee dislocated again and I was taken into hospital, I saw the same doctor that had requested the me I scan and he was very rude and told me that there was nothing wrong, I was sent home in a brace. 

When my knee dislocated again I saw a different doctor in the fracture clinic and he asked if I would mind him taking a look at the Mri scans that were done and I said your more than welcome to as I feel I was treated unfairly and I don't actually know the results myself. He took some time looking over them and said that, the Mri scan has revealed a year of the MPFL, TGG distance was abnormal and the groove that the patella sits in was very shallow, this is causing the patella to flip out. Because of these findings a was referred to the Problem Knee Clinic. 

I saw an orthopaedic surgeon, Dr Kneedoff in the Knee Clinic on the 10th July. On arrival I was unfortunately in plaster again due to another dislocation so this was removed and I was examined. I could not perform a straight leg raise but the knee seemed stable. Around the patella there was discomfort medically and laterally and the was positive apprehension. Dr Kneedoff said that he would like to perform patella medial reefing and lateral release as this has a very good chance of helping the patella to stop dislocating. I was to come out of plaster and go into my knee brace again and come back in 4 weeks as the knee needed to settle down initially and regain some flexion before proceeding with surgery. 

I spent the next 4 weeks being extra vigilant and resting then I went back to clinic and was given the go ahead for surgery. I did mention that I had a questionable diagnosis of Ehlers-Danlos Syndrome but because this hadn't been confirmed it was dismissed. 

I went ahead with the surgery on the 24th September 2014, there was no significant bleed but the patella was still subluxing. Coming out of surgery I was in horrific pain because I had been talking morphine as a pain reliever for 7 months so it wasn't having the desired affect. I was put on a recovery ward and watching closely as my blood pressure was very low. They let me go home 3 days later in a immobilised brace and I was to rest. The pain was horrible and something I never want to experience again. 

Four weeks later I went back and my brace was removed, along with the staples. I was referred to physiotherapy, but after a few sessions I was discharged as my knee was again dislocation during session. The physio was appalling but I will leave that for another post. 

I never recieved a follow up appointment after then to see the surgeon and after a month of increasing pain I called the department and my surgeon had gone off sick so I saw a different doctor, Dr Machin. He was a lovely gentleman and after examining me and giving me a 9/9 Beighton score he said "have you ever heard of Ehlers-Danlos Sydrome" I said YES! There has been a questionable diagnosis since being diagnosed with joint hypermobility 6 years ago. 

He referred me to a Rheumatologist that had knowledge of EDS and she formally diagnosed me, stating that I had one of the most severe forms of hypermobility she had ever seen. She referred me to all the relevant people including a geneticist and gave me some information booklets . 

I am now back under another orthopeafic surgeon due to constant pain and swelling in my knee and abnormal muscle spasms. He says that surgery has made my situation worse and we are trying everything we can to try and get some relief but not getting anywhere at present. He said we could try surgery again but due to the EDS it's not likely that there will be a positive outcome. 

I have been having hydrotherapy but this is causing me dislocations in other areas and I will be back in clinic in a couple of weeks to discuss how we are going to proceed. I hope there comes a day when the pain is more bareable. 

For now I continue to use KT tape and knee braces to support my knees. 

Please don't ever jump into surgery, as I have learned it is not a quick fix and with EDS it is more likely to have complications than positive outcomes. 

I hope I haven't drowned on about my knee. I would just like to think that my experience may help someone in the same situation before thinking about surgery xxx

Welcome to my blog :)

Hi, as you can see my name is Rebecca and im 24 years old.

I wasn't diagnosed with Ehlers-Danlos Syndrome officially until the 14th of January 2015, 2 days after my 24th birthday but it has been very evident all of my life and more so the past 6-7 years.
The journey to diagnosis is a very long one and it can be very stressful and a very lonely time but there is hope. I saw a wonderful Geneticists from the Nottingham Trent University Hospital, he helped me put all of my life into perspective. He explained that unfortunately I am one of the most severe cases as I present almost all of the possible symptoms of EDS but he says that he believes I am also a strong person, i would like to think so!

I have been diagnosed with:
Ehlers-Danlos Hypermobility Type
P.O.T.S
Fibromyalgia
Gastroparesis
IBS
Borderline Personality Disorder
Chronic Migraines
Photophobia, Osmophobia and Phonophobia
And all the comorbities that go along with these conditions.

I try to be a positive person. I believe there is always some good in the bad and that everyday is another day worth living.

My current situation:
I came out of hospital yesterday after a week of chronic upper abdominal pain and unable to keep food and liquids down. I dont really remember much of this last week as i was either being aggressively sick, asleep or passing out. I stayed home for as long as possible and it wasnt until 2 days ago i went into hospital when i was bringing up my stomach lining and unable to hold my own head up. It turned out that my blood sugars were only 2.4 and i was severley dehydrated so i was admitted. The doctors believe that this is due to the Gastroparesis, which is very common in people with EDS. I have since been aloud to come home and i am coping. I have to return in the near future for a endoscopy and further tests.

I seem to spend alot of my time in hospital. Most weeks I will have up to 6 appointments in a week. Theses consist of Physiotherapy, Occupational Therapy, Hydrotherapy, Orthopeadic Surgeons, Fracure Clinic (i have alot of falls), Opthamology, Cardiology, Orthotics, Rheumatology and many more.

At the minute I use Smart Crutches to get around, I cant walk very far due to chronic pain in all of my joints. At the beginning of the year I was using a self propelled wheelchair but as my joints have become even more lax this is no longer possible as it causes my wrists and shoulders to dislocate. I was assessed by wheelchair services and they have now come to the decision, along with doctors input that I now need to use an electric wheelchair. This was heartbreaking for me as I feel like my mobility is being taken away from me but I wont let it get me down. The property that I am in is not big enough for the wheelchair I will need so now I also have to move to an adapted bungalow.

Like alot of people with EDS I experience a lot of Dislocaions and Subluxations (partial dislocations) and this can be anywhere up to 15 times a day. It is possible for any of my joints to dislocate from my little toe, to my hip or my rib cage. There is no cure for EDS, but there are things that can be done to make each day that little bit more manageable.

Because I don't really get out much I love to keep myself occupied at home when I can.
Here are some of the things I love to do:
Reading - this is definitely one of my favourite things to do and im always welcome to new book suggestions.
Colouring - I find this very therapeutic.
Arts and Crafts - I love to try new things.
And hopefully blogging will now be a new favourite.

Im not sure what else to say so I hope you enjoy my blog and il will be back soon!!

My Letter "To A Normie From A Zebra Spoonie"

May is Ehlers-Danlos Syndrome Awareness Month and I would like to do my part in raising awareness. My disability is invisible, but just because you can't see it, it doesn't mean it is not real. It is very real.


Ehlers-Danlos Syndrome (EDS) is a rare inherited condition affecting connective tissue as a result of faulty collagen. The "glue" that holds our joints together does not work properly. This can cause problems in every single system of the body. A lot of people have never even heard of this condition or those that think they do are actually misinformed. This includes professionals and this is very distressing to sufferers.


There is a famous saying "Never judge a book by its cover", I think people should definitely bare this in mind especially when it comes to people because you have no idea what's really hiding behind a smile. I would like anyone that wishes to judge me to first take into consideration some of the following things I go through on a daily basis.


Every morning when I open my eyes, if I have managed to get those mere 4 hours of precious sleep I wonder why me? I feel like my body is trying to destroy me and I feel trapped. I can not just simply get out of bed and start the day I have to do a once over to find out which joints have dislocated whilst iv been sleeping, have they all gone back in or is my hip still subluxed? If I just got up with out doing this I could end up in a pile on the floor and an ambulance on the way.


I am scared of what the future holds for me, or whether I even have a future. EDS is very unpredictable. Will I really have to start using that electric wheelchair or will I be one of the lucky ones and be able to carry on using my crutches for a while longer? Are the 5 hospital appointments a week going to be forever? Maybe, I just don't know. So when I'm distant and quiet, please take a minute to be patient with me, I'm not upset with you. I'm trying to overcome my fears.


Growing up I had so many hopes and dreams like everyone else does but gradually I feel like I have lost the person I once was. I struggle to do some of the most simple daily tasks that some people don't even have to think twice about. Having a shower is exhausting, brushing my hair can cause me to dislocate my shoulders and that's all before iv even attempted to get dressed. I can no longer do many of the things I enjoyed doing. EDS has taken so much away from me, there isn't a second that goes by that I can be free from this as I am always reminded by the constant chronic pain. So if I appear angry, it's not you I'm angry with, I'm angry with EDS.


Unfortunately I have to think about everything before I actually do it and be careful how far I push my body due to multiple dislocations/subluxations. You may not think I am capable of doing certain things but only I can make that decision, only I know my body. I still want to be included and invited to do things. I am still human after all, EDS can not take that away from me. EDS has affected my joints and my internal organs, not my ability to think for myself so please don't think you know what is best for me. If I make the wrong decisions, it is I who has to deal with the consequences.


I refuse to live my life being miserable everyday. If I was to live my life being miserable because I have an incurable condition then I would become severely depressed. But I just want people to understand the difference between being "happy" and being "healthy". When you see me/speak to me and I seem happy, it simply means I am happy. That's all. It does not mean that I am healthy. I am still in pain. I am still struggling. I could even be sicker than ever but I just refuse to let it win.


Please please please don't suggest "cures". I have probably tried everything you could possibly suggest anyway and I know you may only be trying to help but Ehlers-Danlos Syndrome is incurable. It is a Genetic disorder. So unless you can change my "genes" I'm stuck with it. All I really want from anyone is understanding and support.


There is a lot of misunderstanding of the pain, instability and dislocations of EDS. It is so unpredictable, one minute the pain could be severe in your knee and the next it could be in your hip or shoulder, it affects the whole body and can move around. We can suffer from bad flare ups causing us to be bed bound for days on end, in severe pain. Then other days we may be able to manage to do that little bit more. So just because I could do something yesterday, or earlier, it doesn't mean I will be able to do the same thing today or even later. Standing for just short periods of time can cause me to become fatigued and cause a lot of pain and in some cases I won't be able to anything for the rest of the day.


I don't want to be told you know how I feel. You don't. I'm not after sympathy, that's not what I want. I don't want your pity. I know sometimes i look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and fatigue. When I do have all of my braces on and they are visible, don't stare. It hurts. I already feel like a freak.


Getting out and doing things does not always make me feel better. Sometimes it's impossible or just too stressful, please understand that. Telling me that some fresh air and some exercise may make me feel better is not correct - if I could possibly do it then I would. Some days I just don't want to do anything apart from curl up in a ball on the sofa in my pjs. How would you feel if you had a body that could you pain 24/7 and could spontaneously rearrange itself through no fault of your own?


It's important that when I say I need to sit/lie down, need to take pain relief or I need to go home, that you listen to me. I need to do it now. It can't wait because I'm doing something more exciting. EDS is not forgiving.


I am still the same person I was before I was diagnosed and before my symptoms started to progress so please try not to treat me too differently and leave me behind. I still have feelings . I still laugh, cry, love and hate. I am me not my disability. EDS sucks but I'm a fighter and I won't let it win.

All I ask is that you understand, support and love me Written by Rebecca-Katie Burton-Thompson