The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

The lesser spoken symptoms of ME and EDS

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It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.

That was way too long of an introduction! Lets get on with the content.

EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.

It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.

It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.

It’s reflux, sometimes so bad that it keeps you up at night.

ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.

It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.

It’s drop attacks, heart palpitations, breathing difficulties.

The brain fog that leaves you feeling stupid and can be really quite scary at times.

Cold extremities despite being in a heatwave and sweltering.

Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.

 

 

EDS Misconceptions

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Good afternoon, evening, morning. Thought I’d do a follow on from my h-EDS post by sharing some EDS misconceptions,

  1. You have to be flexible to have EDS No, although many people with EDS are flexible there is a difference between flexibility and hypermobility. Flexibility comes from the muscles, however hypermobility comes from joints and ligaments. As a lot of people with EDS find they’re muscles tighten to prevent dislocations they may not be flexible. Furthermore widespread hypermobility isn’t present in all  types of EDS. In vascular EDS the hypermobility is more in the hands and feet.
  2. You have to be severe to have EDS  No. EDS is a spectrum disorder. This means that although yes many people are severe and have multiple comorbidities it is not essential to be on the more severe end of the spectrum.
  3. You have to have a family member with EDS to have EDS No. Spontaneous mutations happen and the nature of awareness only recently increasing and many likely going undiagnosed in the past means that a family member may indeed have it but just isn’t diagnosed.
  4. You have to dislocate Mahoosive misconception. Some people only partially dislocate others don’t even do that.
  5. If you have high arches you don’t have EDS No – both flat feet and high arches are signs of EDS
  6. You have to have stretchy skin to have EDS – No No No No No. This is associated with the classical type more than other types although can be present in other types.
  7. EDS only affects the joints –  No just no. It affects skin, gums, the bladder, bowels, uterus, mast cells, stomach, uterus. Literally everything
  8. Exercise cures EDS Again no. For those who are able yes it can help but there are many with EDS who simply can’t be it due to the EDS itself or a comorbid condition.
  9. Everyone with EDS bruises easily No. Again this is just one symptom many with EDS experience, but not everyone.
  10. It’s just a name and it doesn’t matter what you call it No no no. EDS is often more respected by doctors than HSD or hypermobility syndrome or benign joint hypermobility. It matters.