The chronically ill student’s quick-guide to success

Uni

It is hard enough for University students to balance their coursework and exams with their social life. So, when a chronic illness is thrown into a mix, it definitely puts a spanner in the works.  Surviving student life with a long-lasting illness can appear daunting, impossible.

Trust me, I know. I had a mental break down three weeks in my first year and nearly dropped out.  The tips I am going to give you, are the techniques that enabled me to find my feet ; study with more ease and achieve high grades.


1.  Apply for DSA

If you have a chronic illness, you should qualify for Disability Student Allowance (DSA).  You apply for this through Student Finance (SF). You will then be offered a ‘Needs Assessment’ . This assessment determines what you are entitled to, based on your individual circumstances.

If you take anything from this post, it is really worth taking the time to make an application because your disability will be on record – even if you switch unis or defer. Module leaders are also made aware of your specific needs and you should get extra writing in exams and coursework extensions. Other examples I received were; printing costs ,  individual £1 taxi journeys costing  to and from campuses and Dragon software.  The software works by you speaking into a microphone and it types up what you say.


2. Order groceries online

Getting your groceries delivered may sound like a trivial thing but if you have a physical illness, it is something you MUST do. Not only will the delivery man become your new best friend, you won’t break your back in the process of buying food. food

It is easy to want to buy everything online but don’t spend money for the sake of it unless you are mintedIf not – like the majority of the student population, it is wise to set yourself a limit so you don’t become the size of a hippo and can go out.

Most supermarkets add basket charges which cost between £3-£6 each time.  If you want to do lots of little shops, TESCO delivery saver gives you the choice to pay for unlimited deliveries as long as you reach the minimum spend (£40).


3.  Select a disabled bedroom

Most Universities, allocate disabled spacious rooms in halls with larger beds on the ground floor. You will need to apply for the room during the booking of the accommodation and disclose evidence of your disability. I recommend doing this otherwise you might find it difficult to get to sleep with pain.


4. Cook meals in bulk

When your illness flares up, I know it can be difficult to do anything. When mine does I don’t want to get out of bed unless it’s to eat – I am a proper foodie. Cooking meals in bulk ensures that you always have something to eat, should you feel hungry – which is important for recovery.   Quick and easy nutritional meals I recommend that are fresh are; stir fries, steak, pasta, jacket potato with beans, sandwiches and chicken with salads.


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5. Be upfront & request help

Being open can be a difficult thing; for many in a new environment with strangers.  You may worry more that people won’t accept you because your different. Don’t worry, just be honest about your illness. When I wasn’t honest about mine I lost a lot of friends because they thought I was boring when I couldn’t go out.

Don’t live a lie and just try to keep up with the pace of everyone else. The chances are, you won’t be able to for long and burn out. Also, talk to your lecturers and  about your condition.  Discussing your illness can make them more understanding than it written down on a piece of paper.


6. Visit wellbeing

Every Uni, has a wellbeing department.  Go VISIT it.  You will be designated a disability advisor, who handle matters on your behalf and can help you with queries. My advisor helped me talk through my options if I was to stay or drop out of Uni and drafted my disability memo to staff.  You may find that you are entitled to extra support that is run by your specific institution too. For example, stress-relief and anxiety workshops.


7. Buy an audio recorder

When you do roll up to those 9am lectures, with a potential hangover and chronic audio recorderillness; chances are you won’t be playing much attention.

If your Uni does not record lectures, buy an audio recorder – they are only about £20 from Curries or Argos.  This device was literally my savour throughout first year and helped me remember content. However, make sure you sit near the front to get clear audio. I don’t think I would have achieved my high grades without this gem.


8. Take your laptop to lectures

Some lectures, speak very fast.  So, I suggest you take a laptop so you can open up the slides and go back and forth at your pace to keep up.


9. Have a structure

Try to plan your days as best as you can. So, you can relax  at societies and find time to do your coursework.  This can be difficult when your ill and one day merges into another but the secret is you can have a loose routine as long as you stay organised. By this I mean completing coursework progressively and putting your notes in a folder.


10. Take the free support available

I know, it can be hard to accept help, because of pride – you don’t want your illness to define you.  I was reluctant at first to take help but I was really struggling to plan my workload.  You are likely to get a learning support assistant through DSA for one hour per week in a study room.

The assistants are not subject specific but are still useful. During these sessions the tutor taught me how to structure essays for exam, check my progress and helped me plan. Be aware though – if you miss 2 consecutively without 24 hours’ notice your Uni reserves the right to stop these sessions for the entire semester.



 So, there we have it guys. My guide for the chronic ill student’s success.

I hope you found it useful.

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PoTs – The Invisible Demon.

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, POTS

PoTs Explained and my Symptoms

Postural Orthostatic Tachycardia Syndrome also known as Dysautonomia (PoTs). That’s one a hell of mouthful, right? A condition I might have, that I can’t even pronounce properly. picture for blog

Before I start, I am not going to pretend I am a medical professional or a scientist. I do not have extensive knowledge on the Autonomic Nervous System or PoTs. This blog purpose is to give you an insight into the chronic illness.

 

I believe the best video to explain the condition is What is PoTs? (YouTube, 2017)

 

A brief explanation of the condition here based on reading (NHS-U.K, 2017) is; PoTs occurs when the autonomic nervous system which cannot function properly. 

Autonomic nervous system?

” If this is the first time you’ve heard that, you are probably thinking what the hell is that”.

Let me break it down for you. The Autonomic nervous system controls everything your body is suppose to do without having to think about the action.  For example, breathing, sweating, digesting food and drink etc.  

When someone with PoTs sits or stands their heart rate increases to abnormal levels because the blood to their heart and brain decreases. Subsequently, this is likely to cause them faint or feel dizzy amongst other symptoms. Not everyone shares the same symptoms, and someone does not need every symptom to have PoTs.

“There are different types of PoTs, just to make things more confusing”.

 There are Hypo PoTs and Hyper PoTs,  which apparently even have their own sub-categories. I  will admit, I still know very little about the different types but I will try to give you a very brief overview.

Hypo means something in the body is running low. For example, someone has low blood pressure or not enough blood or enough oxygen.Hyper on the other hand is the opposite and everything is rocking high in the body.  For example,  high blood potassium or sodium.

pots

“The problem with PoTs, is you cannot see it – Around 85% of PoTs patients have been told their symptoms are only in their head (Dysautonomia International, 2014).

That is why it is not uncommon with invisible illnesses to live for years in pain undiagnosed or misdiagnosed.  Even when patients symptoms are taken seriously, they are  frequently misdiagnosed.  Misdiagnoses occur because of  a lack of awareness surrounding the condition – it was only officially recognised in 1993 (Stream,N.D).

PoTs is a bit like snapchat, both include filters. A Snapchat filter masks what someone truly looks like on the exterior. Meanwhile, in PoTS, skin is the filter that hides what is really going on in internally.

“I worry if I have PoTs – not about the illness itself, but how others will perceive it”.

I think it is cruel that skin can make someone appear perfectly healthy, when they are really fighting an uphill battle.   I have already experienced discrimination due to my EDS and I fear this could happened again if I become diagnosed with PoTs.

“My journey for a PoTs investigation began when I was diagnosed with Ehlers- Danlos syndrome III (EDS)”.

 

I was asked that famous question, “What symptoms do you have?” I took a deep breath and reeled of my list of symptoms. I stated in the past the following had happened;

  • I can’t bear standing up without being in pain
  • Chronic fatigue – I am always tired despite how long I sleep
  • I had episodes of fainting and a history of low blood pressure
  • I felt better laying down in dark rooms
  • Palpitations
  • I experience regular headaches and stomach pains and…
  • I can hear sounds others can’t.

 Ear-PNG-HD

Hearing things others can’t…

I feared being honest would sound like Harry in the Chamber of Secrets when he was told to follow the spiders and I would be rapidly carted off to a mental hospital. I didn’t know which was more alarming.

The fact I had been honest or that the doctor look back at me like this was normal. I quickly realised to her this was normal for an EDS or PoTs patient. The doctor explained to me that people with PoTs are more sensitive to sounds and experience the other symptoms I listed.

The rheumatologist explained what PoTs was, stated that it is common for people with EDS to have it and recommended I went for an investigation. I agreed and the process was underway.

 

To find out what happened next…

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COMING SOON: POTS: Part 2 -Referral to Investigation


Over to You

I would love to hear from you!

Whether you have found this post useful, know someone who has experienced PoTs like symptoms or has a diagnosis.

I hope you have a good day,

Morgan x



References

Dysautonomia International (2014). Dysautonomia International: 10 Facts Doctors Should Know About POTS. [Online] Available at: http://www.dysautonomiainternational.org/page.php?ID=180 [Accessed 22 Aug. 2017].

 NHS-U.K. (2017). Postural tachycardia syndrome (PoTs) – NHS Choices. [Online] Available at: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx [Accessed 22 Aug. 2017].

Stream, C. (N.D). [Online] PoTS UK. Available at: http://www.potsuk.org/gp_guide [Accessed 22 Aug. 2017].

What is PoTs? – YouTube. (2017). Dysautonomia International 2016. [Online] Available at: https://www.youtube.com/watch?v=ch6ipV3M4yo [Accessed 22 Aug. 2017].

 

 

Welcome

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Hello, random person.

Thank you for visiting and  welcome aboard my health train.

From Morgan.

This blog sparked from a famous Meme that I was getting tagged in frequently, as seen below.

meme

I found it very difficult to eat when I was diagnosed with food allergies and an intolerance in 2014.  Gluten and nuts  was all I knew, with lactose  for the most part. I kept thinking how I am meant to figure this out alone.

I wish  more information was readily available to make my life easier“.

In 2016, my world came crashing down.  I was then diagnosed with Ehlers Danlos syndrome III, Dyslexia and Dyspraxia in the space of two months. These revelations made my depression and anxiety heighten.

I am going to use space to;

-Discuss mine and others medical conditions and sensitivities to raise awareness 

-Provide information on how to identify symptoms

-Explore journeys to diagnoses 

-Give you tips on how to live a happy and healthier life.


I hope my blog will evolve into an online community that share my posts by finding them engaging and useful.

Want to know more about me? Click here.

     As a new blogging enthusiast, I would love if you showed your support and followed my new Facebook page.

 I am  happy to provide honest advice on any questions you have.

Lots of Love,

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