May was a Mess but that’s okay

8349C0FF-E085-416B-8CE3-96468F093FAE

I quite like doing these monthly reviews so I think I’ll continue them as much as possible.  But May was a not very fun month. Fun things happened but my body definitely took the sacrifice until I found the d-ribose and the adrenaline I’m in right now. Yes I’m aware harnessing the adrenaline isn’t good ME management advice but I do what I do.

The beginning of May actually feels like a decade away right now but I decided to commit to an ME awareness daily photo challenge on Instagram which I actually completed, like what? Everyone who knows me knows I get to about day 15 of these challenges and give up. But with a lot of pre-preparation and sometimes posting two or three days in one I managed. When I could dedicate the physical and cognitive energy to photo taking I really enjoyed expressing my creativity and posting different content. But I also liked  how I could go through a wealth of photos on facebook, google photos, my phone and post old content if I didn’t have the energy or muse. There is now a picture of 9 year old me in a tree on Instagram (Where else would I be?).

I also got to see my family again and I am loving being fed and my dog and my fingerboard and there being a tree I can climb in my nans back garden. It’s probably not safe as it’s probably taller than a bouldering wall (getting down was terrifying) but my brother climbs it all the time and I’m competitive. Yes even against a 14 year old because if he’s better than me at anything he endlessly rubs it in.  Also trees and doorframes are all I can climb right now so if I’m in the vicinity of a tree and feeling vaguely well enough I will.

But my health was not vibing in May. In all the ways.

I spent the month a really not fun gastro flare because my body was like “Hi your doing too much for me to have the energy to digest food.” The only reason I’ve kept weight on is because my family feed me and eat the typical unhealthy westernised diet so the calorie density has been higher, especially with my evening meal. I’m really hoping my stomach works this month because I’m done with the agonising all consuming nausea but also scared of gaining weight. I weigh the least I have since a bad gastro flare four years ago and I weirdly feel worse about my body than I did at Christmas when I was heavier. But such is life. I can’t do huge amounts about it when living with my family. If I wasn’t working I’d make separate dinners for myself more but I really don’t have spare energy to cook and wash up the cooking every day or walk to Tesco and back for fruit whenever. My nausea is something I really should see a doctor over as even though I can’t commit to one end of the country I could atleast get some anti-emetics. Over the counter and herbal remedies are of really limited effect right now and no I can’t concentrate on my job effectively if the all consuming nausea hits. But I also can’t concentrate if I’m hungry so I can’t really win.

My bladder also waged a bit of war on me, although that’s been going on since before lockdown I found it more noticeable when trying to work. I should really see a doctor about that actually as it’s been really painful over the last few months but COVID and not being committal over staying in one part of the country.  It’s also kind of scaring me because from my limited none medically trained knowledge it sounds like I’m having retention issues which is a common EDS comorbidity.

I still have an elbow injury even though that’s had a lot more rest (Should really do something about it) and my LCL is still injured even though when I got it checked out I was told a month. That was three months ago. I hate it when medical professionals underestimate injuries because of a high pain tolerance or maybe I just heal slowly because of my EDS. Everything else that got injured during the same heel hook is better now though!

Migraines, pressure in the back of my head, migraine like headaches that aren’t actual migraines and pain in the rest of my body has been a constant battle. Yes another thing I should consult the GP about but I have 99 problems and I don’t know which to prioritise.

I was finding myself on the floor multiple times a day, although that did reduce at the end of the month by starting D-ribose and getting back on another supplement that I think I probably was on at some point but stopped because I couldn’t afford. It’s very weird living in an abelist family who don’t even believe that is a thing, collapsing multiple times a day but never in their sight or rarely because adrenaline is a wonderful thing. It’s honestly even more hilarious when your younger brother has issues with you not emptying the dishwasher and your dad gets in on the “Why can you do X but not Y?”

Especially when you can’t explain because they don’t let you get a word in and lets face it no one will ever understand ME until they have ME. No one will ever understand that yes I can do this thing but this thing makes me very dizzy and I have to work after lunch so no I can’t do this thing right now. I can do this thing but it’s unsafe for me as I often can’t feel my feet and am dizzy so if I am able to walk down the stairs carrying a hoover down and then hoovering the mess I made after exerting a lot of energy before now is something I need help with.

I did the hoovering. Not the carrying.

I feel like able bodied people also don’t understand that we’re allowed to have fun. And I’m not blaming my brother for his “Why can you climb a tree but not empty the dishwasher.”  But it’s something I’ve come across my other people who are old enough to educate themselves and allow themselves to be educated.

May also ended in a bit of a mental health crisis. I won’t go into details of why or what but it was terrifying, especially as I had been doing really well. Honestly if I had records of my recent anxiety and depression questionnaires I could prove it. (I have to do them before each therapy session.) But seriously being worse mentally, even if only for two days than you have been for two years is terrifying.

So May was not great but hopefully June will be better. On one of the last days of the Month I was able to walk for 10 minutes without too much PEM. Still some PEM but less.

I may go down to one post a week in June. It’s certainly not felt right to make two posts this week with everything going on. I’ve been sharing resources and info #blacklivesmatter related over on my IG stories @spoonielivingfree which will likely continue but writing a blog post on the matter when I can only come from my own white privileged view isn’t something that’s felt right. We need to share voices from black people without putting pressure on them to educate us. I may however write some criminal justice/sentencing pieces if I can find the energy although I’m not sure whether they’ll be posted here or somewhere else.

That was a tangent. But yeah, I’d like to do two posts if I can but it’s not something I’ll pressure myself to do!

How was May for you?

 

 

 

 

The lesser spoken symptoms of ME and EDS

adam-niescioruk-hWzrJsS8gwI-unsplash

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

wolfgang-hasselmann-6e_fwXcSXQI-unsplash

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.

 

Hypermobile Ehlers-Danlos Syndrome

zdenek-machacek-FjhCWctnFQM-unsplash

It’s May. Which is apparently all of the awareness months. Feels like some sort of conspiracy to be honest. But one of those is Ehlers-Danlos awareness month. (EDS)

All forms of EDS are genetic disorders of the connective tissues. Connective tissue makes up pretty much everything in the body, other than the muscles which means the symptoms and signs can be prevalent throughout the body and there are a number of common comorbidities that arise.

I’ve recently been diagnosed with the Hypermobile type of EDS (h-EDS). And I’m still kind of in denial and maybe that’s because I’m not that bad. I’m not that hypermobile and I’m certainly not flexible because I have v tight muscles. I score 5 on the Beighton Scale, but also have hypermobile ankles, hips and shoulders and suspect my neck is hypermobile as I am getting more issues there. Weirdly I do partially dislocate parts of my body that aren’t hypermobile, but based on things that have been said to be by physios about how I stand and how that’s caused other issues, it’s likely I was in the past.

There’s no genetic test for h-EDS yet and diagnosis is made by ruling out other conditions including other forms of connective tissue disorder and EDS if you look like you may be a candidate for one of those diagnoses and by ticking a certain number of boxes based on hypermobility and wider manifestations of a connective tissue disorder. (Stretchy skin, velvety skin, Easy bruising, mitral valve prolapse etc) Family history and actually being symptomatic is also taken into consideration.

You don’t need family history to get diagnosed or even to have EDS as spontaneous mutations are possible, and it could be that previous family members are less effected than you or doctors just failed to diagnose them and that’s why there’s no family history.

I don’t have a diagnosed family members but I don’t think I’m a spontaneous mutation.

Denial or not a diagnosis of h-EDS explains my entire life. It explains the proprioception issues I have, it explains my bad handwriting. It explains why I went through I phase of spraining my ankles every two seconds and them not being the same since.

Me constantly having injured ankles was the first time I experienced people not believing me when I said I was in pain. I was 8 and my teachers believed I just wanted to sit out of PE. I see how that can be interpreted, especially when it happens week in and week out but that wasn’t the case. I actually loved PE, especially back then as I had friends to go with. But the impact of running wasn’t good on my ankles. My parents belived me at this point although they didn’t take me to a doctor and just said I’d sprained my ankle.

It explains the constant nausea I experienced since the age of 10 until I figured out how to cut things from my diet and control what I ate to manage it as best as possible. Now I’m able to start reintroducing things. The headaches, the knee pain caused by running and horseriding. I eventually quit horseriding because an hour of my feet in the stirrups was just so uncomfortable. Let alone two. The shoulder pain the hip pain.

I could go through my life bit by bit in order of what joint went wrong first.

I now have multiple daily subluxations (partial dislocations), many of which the outsider is unlikely to notice. They’re not all excruciating traumatic experiences. And often I hide it. No one wants me to share very single subluxations and I don’t have the time and energy for it. I fully dislocate less often but it happens and it hurts. My muscles tighten up to prevent these things from happening and that also hurts. I’m in daily widespread pain. I also suspect my bladder issues are EDS related and although they’re not bad by EDS standards it still hurts, and it’s a nightmare. I suspect I have retention issues and it means the more I need to go the less I can go. I have painful bladder spasms and get frequent UTI’s. I constantly need to go because I never get the feeling that I’ve emptied properly. I’ve also experienced incontinence which was embarrassing when I was younger. It has a very real effect on my life.

And that’s why we need awareness. Not just to the general public but also to medical professionals who still struggle to connect the dots. It takes a lot of emotional energy to go back and forth to the GP over what is often taken as 101 different symptoms. It’s exhausting to tell each new doctor the same story. It’s exhausting to get 101 referrals for all the issues you have, and that’s why I haven’t yet solved the entire puzzle.

I have so many symptoms that it’s simply overwhelming. We need allies, we need advocates we need doctors to stop putting it down to “growing pains” or some sort of hysteria or psychological distress.

We’re really sick, albeit at different levels of sick and the earlier the diagnosis the more chance of people not deteriorating as much as they otherwise would.