#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? 


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 #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?

 

 

 

The Agonising Truth Exposed: Chronic Bladder Syndrome

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, Well-being

Interstitial-Cystitis-

Hey Guys,

I hope you all had a lovely Christmas and Happy New Year!

After being offline along time, here is the one post,  I was nervous to write about – fearing people would have the misconception, I am dirty.

I feel it’s time to share a condition that restricts my quality of life.  Interstitial cystitis (IC) also known as chronic bladder syndrome is NOT  a STI or a UTI.  However, bacteria has been linked to a cause of bladder inflammation.   Being the queenof UTIS and internal inflammation remained a mystery, until recently. Though, it  use to be predicted to be down to my bladder being about the size of a £2 coin.  If you have  never had long-term bladder pain, I sit here in envy. 

Now, I welcome you to my story – the girl who lives on antibiotics. 

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“Antibiotics, the best friend or fiend of an IC warrior?”

Some argue, antibiotics do not necessarily solve IC, which explains why I feel in high levels of pain every day. However, some GPS claim they are essential, to cure it or…. in my case even prevent UTI’S, that worsen it.   For many years I took Trimethoprim, Ampicillin and Nitrofurantoin with little or no relief, even when infections did not exist. Being told in so many words , to abuse antibiotics, it is no surprise I have a weaker bank balance and now  have now become immune to these types.  Typically, I can be on a course for 6-12 weeks at one time.  Recently, I have moved on to three new types of antibiotics on a 6 week course. The pain got so bad I missed my University exams, but now I am figuring out what I can do about this, battling on.

“I don’t give up that easily – with love your swollen bladder”.

I normally finish the first two-three weeks of antibiotics and don’t feel any better.  The first week, I will still be spending my life in bed, wondering if the pills will ever work or will I be dead by tomorrow.  I know this sounds dramatic. Although, the hospital keep ranting on how I could be well on my way, to developing kidney failure. IC and UTIS are persistent, especially if you have had them a long time – in my case 6 years of misery.  It can have as much persistence as a guy you have cut out your life and then drops you that text ‘Hey,bby girl how are you?’ and your like enough already, please.

“Chronic bladder syndrome plays trick on you like the house of horrors”.

Regularly, when I am watching TV, a shooting strike of abdominal pain arrives. Once, this passes I get settled and comfortable and then I realise, I need the toilet. I take a wee, and that’s it I am gasping for air, like there is no tomorrow.Urinating has more sting than a bee. It is like pouring acid into an open wound. I get up struggling to waddle down stairs, to glug down water and send my mum off to buy pain relief…

For an hour or two, if I am lucky I may be numb… ONLY if that feeling could last forever.  I think a day, where I can relax.. Then the pain strikes again, and as I swell the pelvic pain becomes unbearable.  I try to take my mind off it and take a warm bath to sooth body. It does, until I get out.  I pull a funny expression, as if an object is stabbing my urethra, thinking – “why, why me?”

When the pain rife, I cannot sleep or function for many days”.

Awake most nights in throbbing pain, I hobble to the toilet with relief to empty my bladder whilst anticipating the agony to come.  I climb back into bed to realise I hardly emptied my bladder and I need the toilet again.   “I look down at my body with anger and think seriously? – Like it is going to respond to me and say sorry Morgan, you are just an easy target. Reluctantly, I get up once again squeezing my bladder like I would a fresh orange for fruit juice, which can occur up to 10 times in one night.

Finally, I fall asleep anxious the next day it will be worse. I wake up, debating if I have enough energy to go out. Normally the answer is no, my insides are on fire and more often than not I do not want to leave the house.  I am to  scared to go out – scared that if a toilet is not nearby I will wet myself or have to immerse myself in a bush.  I lay back down flat thinking OK, things will get better but –  deep down I know I am more complex case. I have multiple food allergies, which if I am not careful – encourage the mast cells to release histamine and mistakenly attack my bladder.   Eating and drinking like many others, put pressures on my bladder. Furthermore,  I never know if a UTI has returned or if it the IC symptoms. My dip tests always must be cultured before this can be determined.

“Cystoscopy Round Two”

I recently had a second Cystoscopy, whilst I underwent other procedures because I had been showing high levels of blood in my urine for many months. The first one, I had two years ago despite the pain, apparently was relatively normal. So, I had a bit of a shock when the Doctor spurted out  I have a defect in my bladder lining, irreversible damage, internal bleeding and scaring and that  I never have a normal bladder again. On another 6 week course, I also await bladder installations.  The biggest bombshell of them all, was, I must restrict my diet even further.   Ensuring, I am also on a diet that is low in histamine, acid, oxalate and potassium.  In that moment,   I felt like I was going to turn into a restricted herbivore – with my mother on guard, the 24.7 FOOD POLICE, as I call it.

“IC makes you feel like, you will never be happy again”.

As the symptoms are so similar to an infection and there pretty much 24.7, I always think how long to the next round of pain…. Worrying it will be back sooner than it should. I missed out going out on New year but I want to focus on a couple of helpful blog posts in the next few weeks to endeavour to inject positive vibes back in me.

Do you suffer from IC like symptoms?

If you had bladder symptoms lasting longer than 6 weeks, you may be suffering from IC and should see your GP.  I know its hard but you really need to try and stay hydrated to prevent migraines. Imperial Colleges’ guide is useful to help you manage IC like symptoms.

Have your Say?

Do you suffer with IC like symptoms and have good tips to manage it – if so, why not share them below?

Thanks for reading,

Lots of love,

my name

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