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 :)