Update 07/07/2015

Hey everyone, I hope you are all as well as can be <3 

Well I have been lucky enough to not be admitted to hospital for over a week now... Yay me!! 

I haven't really been up to much apart from sorting things out with regards to moving which will hopefully be sometime soon. I was assessed by an OT from social services who decided that where I am living at the minute is not at all suitable due to there being a 9 inch step to get in the flat, the door ways and hallways being narrow and the property just not being big enough overall. A lady from wheelchair services also came out and did an assessment and they feel that the safest thing for me would be to have an electric wheelchair but unfortunately they are only able to supply an indoor electric wheelchair so this does not solve the issue of me getting out and about and being idependent. There is also the issue of the property being too small to accommodate the chair so that is all on hold and I am in the process of trying to raise the funds needed for a ultra lightweight self propelled wheelchair. 

They have decided that the best type of property for me would be a fully adapted bungalow which will be wheelchair accessible and have all the facilities in order for me to carry on living independent. I have been put on the housing list but as these type of properties are hard to come by we could be waiting a long time. 

I still haven't seen my gastro doctor with regards to test results following the gastroscopy and abdominal ultrasound scan, instead I have received a letter asking me to attend the hospital for a abdominal and pelvic CT scan but in not sure why. Hopefully we will have some answers soon. 

I have a lot of upcoming appointments so I will update you all on that as and when. 

I am unfortunately in cast again. I fell on Sunday and dislocated 2 joints in my thumb :( it hurt like hell and there was a lot of swelling so I ended up going to the hospital to get it checked out and they think there may also be an airline fracture so have out me in a cast and I have to attend the fracture clinic tomorrow morning and see what they decide to do.

I didn't like how dull it looked so thought I would jazz it up with some on my waterproof KT tape which would also help keep it dry :) 

 

That's about all for now :) I shall be posting some more helping information on living with a chronic illness shortly. Stay safe <3 

Becoming an Active Self-Manager of a Chronic Illness

I recently did a short overview of self managing a chronic illness but now I am going to talk to you about actually becoming an active self-manager because it is impossible to have a long-term condition without being a self-manager of some kind.

Like I said previously, people deal with their chronic illnesses in different ways, some people manage by withdrawing themselves from life and their illness becomes centre of attention and some people, with the exact same condition and symptoms, somehow manage to get on with life. The difference between the two is not the illness or the symptoms, it is rather how the individual person DECIDES to manage it.

Self - Management is always a DECISION; a decision to suffer in silence or seek help, a decision to do something or do nothing.

Active self-management is a skill and like any other skill it must be learned and practiced. You are the manager therefore you set your own goals and aim to achieve them. Have a think about the following things:

1. Decide what it is that you want to achieve.
2. Look at all the different ways of accomplishing you goal.
3. Make a short term action plan, carry it out and check the results.
4. Make any changes needed.
5. Reward yourself for your success.

Firstly, we will look at Problem Solving.

Problems usually start with a general feeling of uneasiness and you may feel unhappy but just not sure why? On closer examination, you realise what the problem is... 

You are feeling alone and isolated because you haven't seen your family in a while due to not feeling well and them living too far away. 

Now we have the problem identified you decide to take steps to go and visit your family. But it's not that easy when you have a chronic illness. It would be irresponsible and may affect your health if you simply just jump straight in. 

Now you know what it is that you want to accomplish, you need to make a list of ways in which you can achieve it. 

The trip will seem overwhelming as there is much more to prepare for when you have an illness but nothing is impossible if you plan ahead. Before you became ill or before symptoms became problematic  you would have simply got in the car and made the journey but now you find driving tiring. 

You could consider leaving early in the morning and take regular breaks or maybe leave later on in the afternoon and stop in a b&b, making the journey over two days. There is also a train that you can take and stops 20 miles away from your destination or you could always fly. After a lot of thought you decide to take the train. 

To prepare yourself for the trip it is best to write down the steps necessary to make it a reality. These include: 

- Deciding on the best time to go. 

- Buying your train ticket.

- Working out how to handle your baggage. 

- Working out how you will get to the station.

- Wondering if you will be able to walk about on the train to use the toilet or get food. 

You can put these required steps into an action plan. You will phone the rail services to find out what they can help you with. You also decide that you will walk a short distance each day including a couple of steps and build this up so that you will be steadier on your feet when it comes to making the journey.

A week later you check your results. The phone call you made to the rail services answered a lot of your questions. They are able to provide extra help for people with mobility problems and have ways of dealing with many of your concerns. Although you have been walking short distances each day you are still unsteady on your feet and are worried about walking. You decide to speak to a physiotherapist and they suggest using a cane or walking stick. You are not keen on this idea as it is something you have avoided for as long as possible but taking time to think about it, you realise that using a walking stick will give you the extra security needed on a moving train and decide to go ahead. 

This is simply problem solving in order to achieve your goal. You are now able to take the trip. 

Here are a few step in problem solving and can be used for almost all of your problems:

1. IDENTIFY the problem: This is the most important step in problem solving, it can also be the most difficult step. For example, you may think that the problem is that you can't climb the stairs, when infact the real problem is the fear of loosing your balance and falling down the stairs.

2. LIST all the possible way of solving the problem: You may be able to come up with a good list yourself but don't be afraid to ask other people for help with ideas but be clear on what the problem is. For example, there is a big difference between saying you are unable to walk because your feet hurt and saying that your feet hurt because you are unable to find walking shoes that fit properly.

3. CHOOSE one of the ideas from the list to try: It can be difficult when trying something new but be sure to give your potential solution a fair chance before deciding it won't work.

4. Once you have given your idea a fair chance, check the results. If all goes well, your problem will be solved. 

5. If necessary, TRY again: If your first idea didn't work then choose another and try again.

6. Use other RESOURCES: You could involve other people from your circle of support for more ideas on ways to solve your problem.

7. If the problem is still unresolved: If you have exhausted all of your ideas and your problem is still there, you made need to accept that your problem is insoluble. This is sometimes hard to admit and in no way means you have failed. The fact that the problem can't be solved immediately doesn't mean that it won't be later on, nor does it mean that other problems cannot be solved. Don't give up. 

Next we will look at, Making Decisions: Weighing the Pros and Cons

Making decisions is part of problem solving and is an important part of self-management. Here is a useful process: 

1. Identify the options: You made need to make a decision about getting help in your home to carry out everyday tasks or continue to do all the work yourself. 

3. Identify what you want: Identifying your deepest, most important values, like spending time with your family, helps you to set priorities and increase your motivation to change. You may feel like you want to carrying on your life as normally as possible but by pushing yourself you will have to sacrifice other things. 

4. Write down the pros and cons for each option: Taking into account the emotional, social and physical effects, write down as many items for both pros and cons. 

5. Add up the ratings for the pros and cons columns and compare them: you should go with the column with the highest ratings or if the totals are close or you are still not sure, skip to the next step.

6. Apply the gut test: If something feels right to you then you have probably reached a decision. If you are unsure then you should probably leave it to the math of the pros and cons. 

Here is an example: 

The decision in this example would be to get help because the pro score is (11) which is significantly higher than the con score (7). If this feels right in your gut, then you have the answer. 

We will now look at Taking Action: 

Taking action is key to successful problem solving and decision making. 

You have made a difficult decision or have looked at a problem but knowing what to do is not enough. It is time to take action and here is what to do: 

1. Setting your goal: You need to decide what it is you want to do before you can take action. Make sure you are realistic when setting a goal. Some goals can seem like dreams because they are so far off, or so difficult that we are overwhelmed and don't even try to accomplish them. 

2. Work out how to reach your goal: There are many ways to reach any specific goal. The job here is to list the options and then choose one or two to try out. When choosing your options be cautious because many of your options are never seriously considered because you assume that solutions do not exist or are simply impractical. Never make this assumption until you have thoroughly investigated each option. Assumptions are major enemies of self-management. 

Now make an Action Plan: 

Take things a week at a time, what can you achieve within the next week? This is called an action plan: something that is do able, and sets you on the road toward your goal. When making an action plan, it should be something YOU WANT to do, not something you feel you should do to please others. 

Action plans are the most important self-management tool. There are many things we can do to make us healthier but we fail to do them. An action plan 

Here are the steps of an action plan:

1. Decide what you will do this week. Make sure you are action specific. For example, rather than saying you want to loose weight, this is not an action but a result of an action; you will replace crisps for an healthy snack like an apple. 

2. Make a specific plan: WHAT are you going to do? HOW MUCH will you do? ( this question is answered in terms of time, distance, portions, or repetitions.) WHEN will you do this? HOW OFTEN will you do the activity? 

Deciding on Some Guidelines

1. Start where you are and start slowly. 

2. Give yourself some time off. 

3. How sure are you that you can complete this entire plan? Score yourself on a scale of zero to ten, zero being totally unsure and ten being totally certain. If your score is 7 or more then your goal is realistic. 

4. Write your plan down and place it where you can see it every day. 

Carrying out your action plan and Check the Results:

At the end of each week, see if you have managed to complete your action plan. If you are having problems this is the time to use your problem solving skills. 

Rewarding yourself:

The best part of being a good self-manager is the reward that comes from accomplishing your goals! 

I hope this helps and if anyone has any questions please feel free to message me xx

Self-Management Of A Long-Term Chronic Illness.

So what are self-management skills?

• Recognising problems, solving them and responding to your condition should it get worse.
• Realising the importance of a healthy lifestyle and putting this into practice with regular exercise, healthy eating, stress management and good sleep patterns.
• Management of your common symptoms.
• Being able to make the decision about when to seek medical help.
• Working together with you GP, consultants and other medical staff.
• Using medications safely and effectively.
• Using community resources.
• Being open about your condition and talking to family and friends about it.
• Adapting your social activities.

These are just a few of the tools of self-management. I personally think that the most important skill when it comes to the self-management of a chronic health condition is responding to your condition on a day to day basis and solving the day to day problems. You are the person that lives with your condition 24 hours a day, 365 days a year (or 366 if it's a leap your lol) so you know your condition more than a healthcare professional who will only see you for a short period of time. This means that you must manage your condition, someone can't do it for you. 

No two people are the same and this is the same for there condition, two people may have the same condition but will function differently. This is down to how each individual manages their condition and the mindset of the individual. One person may be able to slightly minimise the effects their symptoms have on them by having a positive attitude and being focused on healthy living, but the other person may struggle with these exact same symptoms due to being solely concentrated on their condition.

What goes on in a persons mind is just as important as what is going on in their body.

Before beginning self-management it is important to understand your condition. Not just what causes the illness and the symptoms it may cause but observing how the condition and the treatments affect you as a person. You will become an expert at recognising all aspects of your illness unlike any else could ever understand and this is a great thing. Use it to your advantage.

If you find you suffer with migraines, IBS or frequent flares, could there be triggers, is there something you could change to minimise these? Keep a diary and this will help you to pin point these triggers. It's all about self management but don't be afraid to ask for help. 

That's all I'm going to say for today as it's a very bad pain day so I'm gonna self help myself into my pjs and crawl into a ball on the sofa because it's okay to do that some days! <3 

Where Have I Been?!

Hey Everyone... 

Firstly I would just like to apologise for not being around at all lately, things have been pretty hectic and I will explain but as from today I will now be back online and will be keeping my blog up to date and hopefully have a lot of new and exciting things to come!! 

I was admitted into hospital on the 8th June 2015 (earlier this month) with severe lower back pain that had been present for several days but had been getting worse over the previous weekend and had resulted in me loosing function in my right leg intermittently and pain in my left hip. I had called my GP first thing that Monday morning and he called for an ambulance to have me admitted for pain management and investigations. 

I went through the normal procedure, waited for the ambulance, which surprisingly was here within 30 minutes and they took me to the a&e department, once there they did there usual bits and then put me on the emergency assessment unit where a team attempted to keep on top of my pain over night. I didn't manage to get any sleep and it was a very uncomfortable night :(. 

Tuesday morning I saw a doctor who had no idea what eds was (surprise suprise) and she decided she was admitting me to a ward for further investigations. Later that day I was moved to ward 36. My mum came and brought me some fresh pjs and some things to keep me occupied which I was very grateful of :)! 

Unfortunately I started to feel more and more ill the longer I was in hospital which is usually the case and I don't really remember what happened on the Wednesday but apparently not much. 

Thursday morning I was taken down for a MRI scan of my back and then I sneaked out for a cigarette (very naughty of me) I really needed to get out of the stuffy place for a little while, but whilst I was outside I started to feel really dizzy and started being sick. A lovely lady saw me and fetched a wheelchair and took me back to my ward and I passed out on the way, I was in and out of conciousness for the rest of the day but the nurses didn't seem to worry about it... My mum on the other hand was really concerned when she came to visit and I couldn't even open my eyes or string a sentence together without passing out. 

Friday morning two Dr's came to see me to explain that the MRI shows that I have degenerative disk disease of my lower back, this is incurable and will possibly need surgery in the future. I was aloud to go home later that day. 12th June 2015

Over the weekend I was absolutely exhausted and out of sorts as they had also changed my medication from Zomorph to Oxycodone longtech and shortech to see if it would help with the pain. 

Come Wednesday 17th June 2015 I was rushed back into hospital as my hip was dislocated and fully rotated due to my illiotibial band being very loose :( it was so painful but luckily enough I was only there over night and was home early hours the next morning. 

But just my luck I ended up back in hospital again on Friday 19th June 2015 because I took a funny turn after taking my medication and was in and out of conciousness and they made me stay in overnight. 

Since then, I haven't had anymore 'bad' EDS luck but I won't hold my breath... I guess it's just something we have to just get on with. I won't ever let it beat me that's for sure! 

I had my abdominal ultrasound scan on Saturday morning so that should conclude all of the gastro investigations now and we should hopefully have some results soon :)! 

This morning I saw my orthopaedic surgeon about my knees and he has suggest doing medial reefing and lateral release on my left knee, which is the same surgery I had done to my right knee, he feels that there will be a better outcome as the knee is stronger to start off with than what the right one was but he can't make any definite promises. I have asked for some time to think about what I would like to do before making a decision so I am going back in 3 months time. 

That is basically what has been happening and why I haven't been online or able to post... I hope you are all as well as possible and I will be back very shortly with a blog about what Degenerative Disk Disease is, How it affects us, Treatmeants and Prognosis. Thankyou for taking the time to read xx

POTS - What is it?

What does POTS stand for? 

Postural Orthostatic Tachycardia Syndrome.

So what is POTS? 

It is an abnormal increase in a persons heart rate after sitting or standing up. 

When a healthy person stands up, to avoid blood dropping down into the limbs and abdominal cavity, blood vessels contract immediately and heart rate increases slightly to maintain blood supply to the heart and brain.

But In a person with Pots, for some reason the autonomic nervous system doesn't function properly, so when you become upright there is a drop in blood supply to the heart and the brain. As a reaction to this, your heart begins to race and your body produces lots of the hormone noradrenaline (this is one of the hormones that prepares you for "fight or flight"). 

What are the symptoms of POTS? 

The following was taken from this website: http://www.potsuk.org/symptoms

Symptoms

Orthostatic intolerance:

is a term that is sometimes used to describe symptoms of PoTS. It means symptoms that occur on standing and are relieved by lying down. In addition to heart rate and blood pressure, other bodily functions that are regulated by the autonomic nervous system can be affected.

Symptoms can be debilitating, ranging from mild to severe and varying from day to day.

---

• Dizziness or light-headedness or presyncope (almost fainting)

These symptoms usually occur when standing up,  but can occur with prolonged sitting.

• Syncope (fainting or blackouts)

Approximately  30 % of people with PoTS experience fainting.

• Palpitations

Palpitations are a sensation of your heart pounding in your chest.

• Headaches

Approximately two thirds of those with PoTS have orthostatic headaches which means they occur as a result of being upright and may be caused by reduced blood supply to the brain.  Most people with PoTS also have migraine type headaches.

• Tiredness or weakness

These are common symptoms of PoTS and can last for a considerable time after a bout of symptoms of PoTS.

• Brain fog

People with PoTS often complain of ‘brain fog’ which is difficulty in thinking or concentrating.

• Shakiness or Tremulousness

This is often worse with upright posture

• Shortness of breath

Patients can feel breathless when standing up or with slight exertion.

• Chest pain

Chest pain is fairly common in patients and can be worse when upright. The cause is not clear.

• Excessive or patchy reduced sweating
• Gut problems

Nausea is common. Other symptoms include diarrhoea, constipation, bloating, abdominal pain and vomiting.  Many people with PoTS are told that they have irritable bowel syndrome.

• Poor sleep

Many patients with PoTS have insomnia. This can be trouble getting to sleep,  waking in the middle of the night and trouble getting back to sleep.

• Visual problems

This can be described as excessive glare, blurred or tunnel vision.

• Bladder problems

Triggers which may worsen symptoms

• Excess heat
• After eating – especially refined carbohydrate eg sugar, white flour
• Speed of positional change – don’t stand up quickly
• Dehydration
• Time of day (may be worse in the morning, especially rising after wakening)
• Menstrual period
• Deconditioning or prolonged bed rest
• Alcohol which dilates blood vessels
• Exercise (occasional exercise can cause one to feel worse, but an ongoing exercise program can improve symptoms)

How is POTS diagnosed? 

The most frequently used test is the Tilt Table Test. 

This test is carried out in hospital as an outpatient, you will be strapped to a specifically designed bed with a footplate attached to it. During the test your blood pressure and heart rate will be monitored continuously. The bed will be tilted upright to about 70 degrees for up to 40 minutes or until you faint. (This is nothing to worry about as you are in safe hands) 

You may be given medication to take during the test. All observations are recorded and once the test has been completed they will be able to tell you from the observations whether or not you do have POTS.

So what are the causes of POTS? 

The following was taken from: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

In many cases, the cause of this nervous system problem is not known.

Teenagers will sometimes develop PoTS after a growth spurt and find it gradually disappears a few years later.

It can also develop later in life – typically at any age from 15 to 50 – and is much more common in females. It can develop suddenly after a viral illness or traumatic event, or during or after pregnancy.

Some of the other known causes are:

• an underlying disease – such as diabetes, amyloidosis, sarcoidosis, lupus, Sjogren's syndrome, multiple sclerosis or cancer (chemotherapy can also sometimes trigger it)  
• Ehlers-Danlos Syndrome - A genetic connective tissue disorder which effects the productions of collagen. 
• poisoning – with alcohol or certain metals 
• inheriting an abnormal gene, which causes too much of the "fight or flight" hormone noradrenaline to be produced – this inherited form of PoTS is less common 

PoTS can be misdiagnosed as chronic fatigue syndrome, anxiety or panic attacks.

I am not a doctor and although I do have suspected POTS (my genetics doctor wrote in his report) it has not yet been confirmed so I would not want to give anyone wrong advice on how to live with POTS, medication or self care. Instead I would strongly recommend visiting your GP and discussing this with them. 

I hope this has helped someone :) x

What Is A Chronic Long-Term Health Condition?

Firstly no one wants to have a chronic long term condition but unfortunately in the majority of people this is inevitable and is more than likely possible that each person will experience two or more chronic illnesses. This sucks! But there is a healthy way to live with a chronic long-term illness and that is learning to self-manage your conditions to help overcome the physical, mental and emotional problems these conditions may cause. It's not easy but nothing in life ever is, it's about learning how to live you life to the best of your ability dispute the difficulties life presents. 

So what is a long-term chronic illness?

A long-term chronic illness is basically a condition that can not be cured, instead only the symptoms can be managed through therapy and medications. 

A long-term illness is usually genetic (something you are born with) or something that begins slowly and proceeds slowly, may have multiple causes that vary over time and can be difficult to diagnose, unlike an acute illness which usually begins suddenly, may have a single cause and if often diagnosed pretty quickly. 

This can be frustrating especially for those of us that just want an answer right?! 

With an acute condition you can usually expect a full recovery whereas a long-term condition usually leads to more symptoms and a loss of mobility or mental functioning. 

I find the best way to deal with almost everything is to not be too hard on yourself and deal with things on a day-by-day basis :) xxx

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 :)