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Sunday, 28 June 2015

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



Wednesday, 24 June 2015

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

Thursday, 4 June 2015

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? 


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 diabetesamyloidosissarcoidosislupusSjogren's syndromemultiple 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 syndromeanxiety 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

Monday, 1 June 2015

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