#EDSAwarenessMonth Blog Challenge

Chronic Illnesses, Invisible illnesses

 

zeb

Hey Guys,

As the sun is shining it is clear summer has started … but for those of you who don’t know  May is also Ehlers-Danlos Syndrome Awareness Month.  As University is winding down for the year I am hoping to get back in the swing of blogging.

I found the #EDSAwarenessMonth Blog Challenge by Kali at  This Spoonie Speaks. I have decided to participate but please bare with me as I catch up… To begin I will answer the first six questions but if any of you fellow Zebras want to participate in the challenge, I have listed the questions at the end of this post.

my name


1.Introduce yourself and explain what type of EDS you have.

I am Morgan, quarter of a century old in my second year studying BA (Hons) Business and Management at Oxford Brookes.  From my knowledge there are 13 types of recognised EDS, but I have the most common type which is type III known as hEDS. I was diagnosed with EDS at 23 years old by a rheumatologist but I had showed signs from an early age.

One of reasons why I was not diagnosed earlier is because hEDS does not have a specific blood tests and symptoms can vary between patients.  However, there are more stringent guidelines for diagnosing EDS now, known as the Beighton Score.

You don’t need to wait to see a doctor to see if you can do the 9 tasks you will be asked to perform when seeking an official diagnosis.  I don’t remember my Beighton score but I remember it being relatively high with more flexibility in my upper body ( you don’t need to be able to pass all 9). My lower body has become more flexible over the last two years.However, a common misconception is your only symptom is hEds is hyper-mobility.  My other main symptoms of EDS are joint pain,  bladder and bowl pain, chronic fatigue, bruising, problems absorbing vitamins and severe photo sensitivity.


2. What other illnesses do you have that are related to your EDS?

It is common for EDS to coexist with other conditions, however this is not always the case.  Unfortunately, for me this is not clear cut.

I suffer with multiple allergies and gastroenterology issues which are still under investigation. I was born lactose intolerant and then developed allergies to gluten, nuts, tree pollen, grass pollen cats and nickel being sensitive to numerous other products and being diagnosed with oral food syndrome and IBS.

I am suspected to have Crones or Celiac Disease but have not been able to intake gluten for 6 weeks to be tested. I have also been waiting over a year to see a mast cell specialist and bladder instillation’s due to chronic bladder syndrome.  When I was younger I suffered a lot with urine and bacteria infections associated with eating certain foods. My POTS test came back inconclusive but I I an renown for  low blood pressure.


3.How long did it take you to get your diagnosis? How many doctors did you see?

After my brother suspected I had EDS it took me about a year to get an official diagnosis. However, my parents paid for me to go privately as my GP was convinced it was all in my head despite my brothers diagnosis and similar symptoms for years. Initially I saw a Rheumatologist but due to  the time of my diagnosis and the changes in EDS regulation I saw another one on the NHS to confirm I did  have EDS.


4. What do you want newly diagnosed EDS-ers to know?

Its okay to feel relieved when you receive a diagnosis but also overwhelmed.  The difference is know you have the resources and language to help you start recovery when you are ready. However, do not expect a diagnosis to be a quick fix, the NHS has long waiting lists and you may find a EDS diagnosis is the start of your journey to rule out other conditions.

Although it may not feel like it a label can help you out in so many ways. It can make your GP more understanding, support you apply for mitigating circumstances in your studies and your employer is likely to let you take more short-breaks.  I would say don’t try and figure everything about EDS in one day because this can leave you panicked or frustrated. You can find a local support group, or if you have a busy life or feel unwell social media has many virtual ones online. I find because everyone experience of EDS is not always the same I prefer to listen to specialists, but I know this does not work for everyone

It is all about finding out what works for you!


5. How have you adapted to your diagnosis?

I am still coming to terms with my diagnosis because mental health plays a big part in a physical illness and stress makes joint pain worse for me.  The biggest change is now knowing I cannot keep up with everyone else and going out one day will make me tired for two.  My life is having really productive days and long periods of nothing.  I am trying to get into a routine to do a 3 week inpatient physical therapy rehabilitation course at RNOH I have started taking Tramadol, Codiene and co-codamol when the pain becomes unbearable again.I also consume loads fizzy drinks for bursts of energy – Although, I don’t recommend this.

Hot water is my best friend and I find I always have a hot water bottle to hand and take multiple showers a day because  heat helps loads.   I am soon to be go back to full-time work properly for the first time in years but I will keep you posted on this – As I am still spending loads of time in bed.


6. How has EDS changed your life for the better? 

I am not going to lie to you and say EDS has changed my life for the better overall but it does have some positives.

Firstly, it helped me become an EDS advocate and find this hobby of blogging, sharing my experiences to help others.  Secondly, EDS has brought my family and I closer together because now they understand I am not being a drama queen and I am actually in pain.  Although I have lost friends by staying inside I have found by being in pain all the time I now found I appreciate the special memories I make with my friends and boyfriend.


Sharing is Caring 

Please help me in my quest of raising awareness of EDS by sharing this post.


Have your Say 

Do you have EDS or know anyone with it with similar or different experiences – then why not comment below? 


Like what you see? 

Join me on my journey;

Facebook page

WordPress

Twitter 

Instagram

Pinterest


 #EDSAwarenessMonth Blog Challenge Questions 

  1. Introduce yourself and explain what type of EDS you have.
  2. What other illnesses do you have that are related to your EDS?
  3. How long did it take you to get your diagnosis? How many doctors did you see?
  4. What do you want newly diagnosed EDS-ers to know?
  5. How have you adapted to your diagnosis?
  6. How has EDS changed your life for the better?
  7. What are your top 5 coping tips?
  8. What are your top 5 goals that you want to accomplish despite your chronic illness(es)?
  9. How do you stay motivated in daily life?
  10. What do you want people to know the most about your life with EDS?
  11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?
  12. Did your related diagnoses come before or after your EDS diagnosis?
  13. What’s your biggest pet peeve about trying to explain EDS?
  14. Has being sick impacted your relationships?
  15. What were your initial thoughts about being diagnosed?
  16. What healthy habits have you adopted since getting diagnosed?
  17. How do you feel about your current treatment plan?
  18. What do you think is the most misunderstood aspect of EDS?
  19. What are your top things to pass time when you’re stuck in bed?
  20. What is your favorite motivational quote and why?
  21. What is your favorite piece of medical equipment that you own?
  22. What things have you learned from being chronically ill?
  23. What was your worst medical setback? How did you overcome it?
  24. What was your worst encounter with a doctor?
  25. What is the worst unwanted advice you’ve ever gotten?
  26. Have you found books that have helped you cope with being chronically ill?
  27. What would your coping advice be to friends or family of someone who’s chronically ill?
  28. What is the strangest question you’ve ever been asked about EDS?
  29. Do you think changes to your diet helped or contributed to your symptoms or the severity of them?
  30. What has been your biggest outlet to help deal with being sick?
  31. What are your favorite memories from EDS Awareness Month?

 

 

 

5 Challenges Blogging with a Chronic Illness…

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses

 with a sprinkle of advice.

Hello, there 🙂

22580266_694779720711953_8334593537802764288_n

If you haven’t read my other posts, welcome. It’s not a secret anymore I am a spoonie. I am Morgan Isabella Shaw, a 24 years old that suffers from Ehlers Danlos Sydrome. However, recently when I was procrastinating, I remembered I haven’t confessed how challenging it is to blog when you have a chronic illness.

I will admit I find multiple things an uphill battle. Cooking, washing myself, walking, relationships and blogging is no different. Actually, it doesn’t happen – unless I am blogging from bed. Even then, five minutes into starting a post I tend to experience a  flare up and struggle to finish writing it that day.  As, I throw my laptop down, I feel disappointed in myself I have not met the strict self-inflicted deadline.

If you land on my homepage you will notice I endeavour to publish one post week.

One post a week – is that it?

Many fire back at me with an eye roll or one raised eyebrow. This made realise how many people do not understand how many challenges are behind the scenes for me to keep on generating posts.This post will let you walk into another part of my mind and reveal 5 challenges a chronically ill person may face when they decide to become a blogger…


5 Challenges of Blogging with a Chronic Illness

1. Blogging is Addicting

 I don’t know if blogging is addicting for everyone or if it just applies to me because of my addictive personality.  I use blogging as a natural remedy for my clinical depression so I try to do it as much as possible to release emotions.

The problem with this is, I have found is I end up not getting other important things done. For example,  I sit very confused looking at University briefs, because I can’t find a private tutor this year –  so I turn my mind to blogging instead.

blogging-for-business

If you find yourself in this position you need to like me – try and snap out of it and  make a loose time management schedule, so you can do everything.  As I move through the academic year I am aware that my blog is going to have to take a backseat if I am to pass it, not because I am abandoning you! I also have to admit the more I want to blog the more I shut myself away from my friends. However, I don’t want to give up blogging.  For once I am starting to enjoy one thing again, which in turn makes me feel less suicidal on the whole.


2. Limited Energy

With most chronic illness comes chronic pain, fatigue and brain fog which makes it difficult to concentrate.  I spend every spare second I have whether that be on the toilet or public transport thinking of new blog ideas and content. The issue associated with this is, my brain goes into overdrive – I  now don’t know how not to think.I am awake until the early hours of the morning. I can’t blame blogging entirely for this – I have always been known as a lady of the night up with pain. However, before my mind got a longer rest.

When my I-phone is ringing in my ear  I know the next day  has hit.  I then *sigh* reaching for the closest can of coca-cola to be able to manoeuvre up right and override the extreme tiredness for a short period of time.  Due to my levels of tiredness I get fed up very easily…

sleep

So, even if I have the best idea for a blog – I lack motivation  to actually blog as even the computer screen stares back at me like a fiend.  A part of this is attributed that with a chronic illness, you never know when bad patches will attack you.  This means it is also difficult to plan a content and schedule and actually STICK to it.


3. Anxiety and Negativity

 I can be a very negative person. To date, I will be honest I only have 66 followers.   I become anxious that no one will like or share my posts and that even sharing my reflections will be worthless.  I panic that the more I write the worse my academic writing for University will become and I am convinced I am going to fail there too.

The reason behind this is, blogging is very descriptive writing and University expects a much more critical standpoint for assessments.  I then wonder if I am being too ‘open’ with the public in what I am sharing and worry that it will affect future opportunities. For example – I need to pull my finger out my arse and start applying for 12 month placements for my degree.

anxiety

I frequently question, if having a blog will be a hindrance and shed light that I used drugs in my past, have clinical depression and that I am disabled. I don’t want special treatment but I know I need to disclose my disabilities on a job application form because my pain affects me on a day-to-day basis.  Whilst, this is all spinning around in my small brain,  I then worry about when I take a back seat from blogging –  if I can ever get the passion back because for other hobbies when I lost them, it was lost forever…


4. Being a Citizen of the Blogosphere

It is also no secret I struggle with Dyslexia and Dyspraxia. I find that when I read someone else’s blog to try and learn about other illnesses I don’t always understand what I am reading initially. Everything just gets lost in translation.

How do I overcome this?

I spend a lot of time on Google to understand what the illness is first and then go back to the individuals’ blog.  All of this is interesting but very time consuming.  You may be thinking – well just skip this part, but that would be a vital mistake.  Commenting on posts is essential to improve your writing skills and how you engage with other people.

dots


5. Gaining Traffic and Post Engagement

In October, I received just over 3,000 unique visitors. Although, I am not sure I really did receive this many as it is likely  some of these visitors were in fact me stalking myself using my friends’ phones as I was without one for a while.

I am unlucky with any electrical product! ( I  was definitely was born in the wrong century)..

th

Additionally, I don’t have a strong social media following across many platforms.  I spend the most time on the one where I do have a following – Facebook, to try to gain traffic for my blog.  I am also putting ‘all my eggs in one basket’ and hoping when I finally set up a YouTube channel this will improve my traffic and engagement… as I try to figure out how to increase my Twitter and  Pinterest following.

On Facebook I post my blog posts on my wall, into a couple blogging groups and into chronic illness support groups when I have permission to do so.

 


That Sprinkle of Advice 

4

Do you have a chronic illness and are thinking about becoming a blogger?

 DO IT!

Just remember don’t punish yourself for not being able to post as much as you would like to gain a following.  Fellow bloggers divulged that blogging consistently is very important, where I have fallen short a little bit as the times and days I post content really does vary. This is something I am going to work to improve as I become more experienced and I hope my readers understand that this is not always be possible.

On groups, ensure you always read the pinned posts in groups or you can find yourself getting an inbox of angry admin messages and deleted out of groups.  I find the most effective way to promote your blog on Facebook is through Facebook pages BUT be careful you will be blocked by Facebook if you are a repeat offender.

I think if you post a series on one theme, you may gain more followers. However, I don’t do this because my mind is scatty and like to think of lots of different topics at the same time!


So, guys there are the challenges I have faced blogging with a chronic illness. Next, you can expect to find 5 more general challenges I found since becoming a blogger and what I’ve learnt about myself since becoming a chronic illness blogger.


Sharing is Caring

I would love if you shared this post to raise awareness of some of the challenges a chronic illness blogger faces!


Have your Say

If you a blogger what are some challenges you face?

If you’re a chronic illness blogger do you face similar or different challenges to me?


 Like what you see? 

Join me on my journey on social media;

Facebook page

WordPress

Twitter 

Instagram

Pinterest

Thanks for staying tuned in bed with me and I hope to see you back soon.

Lots of Love,

my name

Popular Related Post

My Invisible Illness ft Tramadol