Frequency of blog posts

After last weeks fenzy of posts, which was probably an overload for a lot of readers I’ve decided, unless something exciting happens I will be updating my blog only 2/3 times a week so I can concentrate on quality rather than quantity.

Also as many of you are aware I’m pretty rough health wise at the moment and I can’t put the pressure on myself to post daily when I’m barely able to make it out of bed for more than a few hours at a time.

My blog is never far from my mind and I’m thinking up posts / topics even when not actively blogging.

I would like to say a big thank you to Ellie for helping me get this blog going again and thank you to my regular readers.

Just to make it up to all of you I will finish with a picture of


Dyscalculia – the forgotten learning disability

Ever heard of dyscalculia? No?  Nor had I until watching BBC breakfast a few years ago when a woman who is a professor in mathematics was talking about her issues with basic maths. I’m really sorry that I can’t remember her name as I would like to email her and say thank you for talking about it and making me realise when it comes to maths I’m not stupid I just don’t think like everyone else.

I’ve hated maths with a passion for years. It was the only subject in school that I couldn’t’ get to grips with. In every other subject I was an A grade student. Maths was my nemesis!

Maths made me freeze up, even now the thought of not having a calculator when maths are called for can give me sweaty palms. Thank Goodness mobile phones (cell phones) come with calculators on them! At one point when I was working I owned 4 calculators so I was never without one.

Maths is everywhere you can’t hide from it. If you cook you use maths                 (weighing out ingredients, doubling up a recipe, cooking times etc) banking, shopping, telling the time, even playing a board game can involve maths. I could never join in playing darts down the pub because darts involves maths, the kind I just can’t do unless you have a calculator handy!

I knew something was wrong with me as a child but I thought it was plain stupidity. How can it be that I can be taught multiplication tables daily and still not know them? How is it I can’t add 8 + 5 without counting it on my fingers? It is 13 right? And yes I had to check by counting on my fingers even though I’ve been using this sum for two days in my head whilst preparing this post. Who does that?

The weird thing is I know that 8 + 4 = 12 and can do that without counting on my fingers. However I don’t see what everyone else would describe as the obvious when it comes to maths. That 8 + 5 has to be 13 because 5 is just one more than 4. My brain doesn’t see the connection and there’s nothing I can do to make it. I’m lacking the innate mathematical ability that the majority of people are born with. But that doesn’t make me stupid it just makes me different!

I was a child of the 80’s and I thank my lucky stars for that as digital watches were all the rage. It covered up my inability to tell the time beautifully. I actually couldn’t tell the time until I was 18. I was ok with quarter pasts, quarter to, o’clock and half past but the bits in between, I had no idea what so ever. Someone telling me I had to meet them at 25 (minutes) to, meant I would be there at half past because I knew 25 to, was somewhere between the half past and the quarter to but I just didn’t know where.

I developed a habit of being chronically early which endures to this day. My reasoning was if I got there early I couldn’t be told off for being late. Now if my husband and I leave the house later than I have planned in my head it makes me anxious and makes things seem like they are out of control. I don’t ‘do’ late and I get really cross when other people have a laissez faire attitude to time keeping. I’m getting better but I still have to stop myself saying something because its my problem not theirs – unless they are taking the piss and stroll in two hours late and I’ve had that happen!

Dyscalculia can be described as dyslexia and dyspraxia’s poor relation. It was identified as a learning disability 1974 by Dr. Ladislav Kosc.

Little has changed since it was identified kids aren’t tested for it routinely and still all these years on kids like me are labelled as being “stupid” when it comes to maths. Where as many people including teachers are aware of dyslexia many people are unaware of the condition dyscalculia.

Testing for dyscalculia is still being developed and current tests are only available for primary school children. I’ve not been officially diagnosed as having dyscalculia but as with my medical conditions (postural orthostatic tachycardia syndrome, Ehlers Danlos syndrome and severe autonomic dysfunction) when I read the websites the description / symptoms were me exactly.

Much research has been conducted on what area of the brain is involved in mathematical problem solving. Dyscalculia can be congenital or it can come about due to stroke or traumatic brain injury. My dyscalculia is congenital, Ive never known my mathematical ability or lack of it to be any different. It is also believed by some researchers to be an inherited condition.

Dyscalculia affects individuals differently we mainly have issues with mathematical concepts, learning things like multiplication tables as we can not retain the information. I have problems if a news article says someone has been awarded a six figure salary, it means absolutely nothing to me. I have problems with thousands, hundreds of thousands and millions. Not as written words but when they appear in their numerical form. So much so Im not even confident about writing what they would look like.

Another dyscalculia give away is problem learning to tell the time, I’ve developed my own coping strategies to deal with this. Even when I write the time I tend to run into problems as I write the time military style so 1810 not 18:10 or 6.10. I get really funny about people saying that they don’t know if I am referring to a year or the time. It may be funny to them to point out what they perceive as a mistake but to me it takes me back to the Friday afternoon humiliation of my primary school teachers maths quiz, where we weren’t allowed to write down how to work the answer out but had to do it in our heads. To a person with dyscalculia trying to work out something in your head is akin to learning a foreign language with no text book or teacher. I cant see the numbers in my head they just don’t exist. Now even thinking about the Friday afternoon quiz has upset me and made me angry. How as a child could I voice the fact I couldn’t do it when surrounded by 29 other individuals who could? And what if I had, would my teacher have known about dyscalculia or would have been just another weird thing I had said ?(I’m a lifelong vegetarian, with my sister we were the only vegetarians in the school) .

I am chronically oversensitive when it comes to maths and being perceived as stupid / thick/ unintelligent etc etc.

Dyscalculia can exist on its own, its believed 3-7% (depending on whose material you read) of the population has this learning difficulty. There are much higher incidences of dyscalculia in people who are dyslexic or dyspraxic. Some source material stating as high as 40-50% of those with dyslexia or dyspraxia also having dyscalculia.

Some websites describe dyscalculia as like dyslexia but with numbers. I don’t have dyslexia so I couldn’t tell you. To me it feels like I have a phobia of numbers / maths it terrifies me because I know no matter how hard I try I will on 99% of occasions get the answer wrong. Math causes me an awful lot of stress. To try and do mental math is impossible because in my head nothing is there it just goes blank. This probably sounds bizarre to those of you that don’t have this learning disability. Your ability to do mental math astounds me!

Its hard to explain my problems with numbers having never known what its like to live without this problem and the condition is so varied amongst those it affects there is no one size fits all description.

In very basic terms we don’t get numerical relationships, (don’t even get me started on fractions!) we don’t see what you would call the obvious and we can also have visual / spatial reasoning issues. The latter probably explains why I am rubbish at IQ tests, you know the ones where they ask you which number comes next in a sequence of numbers or what shape comes next? I must have baffled my teachers at school as clearly I wasn’t stupid but my IQ tests results would have put me south of average.

I remember my GCSE maths teacher coming and seeing me when I returned to the sixth form a month after the GCSE results had come out. I had been predicted an E for Maths GCSE. I actually ended up with a C, to this day I have no idea why or how! Mr C came up to me and congratulated me on my result. He said to me something along these lines ” whenever you handed in your basic maths coursework you would be in the bottom percentage of the class, but what I could never understand was when we were doing the advanced stuff you were the only one that ever got 100%. I just don’t understand it.” Well now Mr C you and I both understand why it happened I have dyscalculia!

I’m including some links that I’ve found helpful in putting this blog post together, for those of you who identify this in yourself or others around you.

If I could also ask a special favour of you as well? Please can you share this blog post to help other adults / children who have this forgotten learning disability. Thank you from the bottom of my heart.

quick update

I am still here and still committed to regular blogging but EDS, POTS and autonomic dysfunction are kicking my arse at the moment.

Whilst I’m not blogging properly there is a post planned for Monday 10th March 2014, which I’m hoping to put together tomorrow as hubby is on nights so I will need to be quiet during the day so he can sleep!

My laptop is back up and running and I’ve treated myself to a wireless printer so there’s no stopping me.

Thanks everyone for reading my blog and feel free to ask any questions or leave comments. Sometimes your questions / comments lead into blog posts.

And for the dog fans out there. . . .

losing what little ground I had gained and a tale of two naughty hounds!

This post was supposed to be about something else entirely but the energy theives visited and I’m stuck in bed!

Since the beginning of February after the tilt table test which I’m now seriously starting to regret having my health has been in a precarious state.

I’ve had a couple of good days in the last month but that’s it. Currently its just constantly lurching from one bad day to the next. Pretty much every day by 2:30pm I’m done, by 4:00pm I’m ready to sleep. I have to try and keep myself awake otherwise I end up waking up after 7 hours wide awake, which makes it a long day if you’ve been up since 3am.

My heart is constantly racing again, on the fludrcortisone my blood pressure has only reached the dizzying heights of 100/61. To tell you the truth I am sick of it.

The steroids make me grumpy and angry. They are wrecking my skin and despite the increase of salt I seem to be constantly dehydrated. Its been so bad that my skin is extremely slow in going back down after you pinch the back of my hand. Everything I drink just goes straight through me.

I will be quite honest I’m feeling miserable!

Now something to make you laugh

This is Frankie lying on our new rug. The day we bought it he wouldn’t get off it. Today he managed to puke on it, he had been eating grass out in the garden which I was unaware of. Whilst I went into the kitchen to make myself a drink he puked bile (bright yellow bile) and grass onto the top corner of the rug. As I am quickly cleaning the rug as hard as I can as I do not want it to stain and the carpet shampooer is in the shed, I hear a rustling in the kitchen.

 I’ve left the cupboard door open in case I needed more cloths or towels.

 I know what is happening, I should have realised this would happen.

Mollie has jumped up and pulled a bag of treats down to help herself being aided and abetted by Willow. This is what my husband and I refer to as a rookie mistake! The thing is I’ve left that cupboard door open countless times and she’s never done it. She’s so sneaky she knew I was too busy cleaning the rug to stop her!

By the time I got back into the kitchen all that was left was an empty wrapper and two dogs making a hasty exit! Ears down and tails between their legs. You have to admire their audacity. If I hadn’t been elbow deep in puke I would have taken a photo!

Here are the naughty girls! Like mother like daughter. I couldn’t be cross for long and it has given me something to chuckle about today!

So glad I have my babies to make me smile! Even if they are cheeky beggars!

If you think you have Ehler Danlos Syndrome…

I wrote this post in September 2011 and I think its such an important post ( my god that sounds so boastful!) In helping others get the diagnosis that they need that I’m reposting it today.

I am having laptop troubles at the moment, so far all of my blogs this year have been composed on my tablet but I need to get onto my laptop to sort some bits and pieces out with my blog. There’s a post I want to write but I need the laptop as I’m struggling to post links etc as I’m just not very computer savvy!So here’s the original post from September 2011 oh and a picture of Frankie boy for all his fans!

 I am writing this in response to a comment from my last posting. I haven’t had a brilliant week so I am sorry I haven’t posted before.

This was the comment….

“I have recently met someone who believes she has EDS…she has hypermobile joints, migraines, and the other day a very sudden onset of complete fatigue !!! What a mess ???I am finding it hard to understand all she is going through..why is she not diagnosed…would it make a difference if she was ??/ Apparently has always been ‘double-jointed’ and had ‘growing pains’ as a child..Some days you wouldn’t even know she was afflicted but this only lasts for a few days…she is about five foot one, petite, dark hair and huge dark eyes…like a bush baby…does this sound familiar to anyone…. on Changing the course of other peoples lives whilst stuck in bed!

So what do you do if you think you have EDS? The lady mentioned in the comment certainly sounds like she could have EDS, migraines are extremely common in EDS – another big clue in my family as my parents and sister suffer with migraines as do I. Plus our paternal grandmother also suffers with them. The hypermobile joints are the biggest give away.

The best think to do before even approaching your Dr about the possibility that you have EDS is arm yourself with information. There is an excellent web site with the diagnostic criteria for EDS which can be found here  and    go through these diagnostic criteria honestly and objectively and mark what applies to you. Print them off as well to take to your Dr to show them that your joints range of motion is beyond that considered normal.

Unfortunately many Dr’s are still working under the misguided notion that EDS is extremely rare, the figures they used to work on were 1 case in 20,000 in the population. Recent research shows its around 1 person in 5,000, with many leading doctors in the field thinking this is a conservative figure with many cases of EDS being undiagnosed and many medical practitioners believing that a condition called Benign Joint Hypermobility Syndrome is actually Ehler Danlos syndrome 3 (or hypermobility).

EDS is a syndrome so its not one size fits all, many people live with the condition all their lives displaying very few symptoms other than they seem uber flexible. Others live in constant pain, crushing fatigue and find their mobility is severely compromised due to it. Hence due to the wide range of symptoms many people slip under the radar when it comes to being diagnosed.

EDS at the moment seems to be the illness de jour in Britain, with many popular TV programmes covering the condition and raising its profile in the general population. Not all portrayals have been positive but raising the conditions profile can only lead to more people being diagnosed.

So you’ve had a look at the diagnostic criteria and your symptoms fit, where do you go from here?

The first thing would be to book a double appointment with your GP, so that you aren’t rushed and they are not under the pressure of seeing a patient every 7 mins. Take copies of the diagnostic criteria with you  clearly marked with what applies to you. A good GP should be open to your ideas about your condition and wants to work with you. Hence why I had to change GP’s this year, if I had stayed with my old GP I would still be without a diagnosis and heading for psychiatric care. If your GP doesn’t listen to you see another member of the practice and keep seeing them until some one listens. If no one is willing to entertain the possibility move to a different practice. You are allowed to move GP practice’s and you won’t get into trouble, some people find that prospect daunting but if they aren’t listening to you what option do you have?

Once you have a GP on side they maybe reluctant to make the diagnosis themselves despite it being quite obvious. It maybe worth doing this next bit before you see your GP, find out what Dr’s at your local hospital deal with joint hypermobility / EDS they can usually be found in the Rheumatology Dept. You need a Rheumatologist that knows about EDS, other wise you could still be left without a diagnosis. So once the GP understands that it is highly likely you have EDS you need to get a referral to a Rheumatologist. Expect reluctance (although hopefully you won’t encounter it) on the GP’s part as this costs the practice money….. as we all know the NHS budget is being squeezed. If you can afford it get a private referral, expect to pay anything from £150-£300. Its not cheap being sick, I should know! Again make sure you do your home work on who you are being referred to you don’t want to spend all that money only to find out it was a complete waste of time.

The person that left the comment said they didn’t know if it was worth being diagnosed. EDS is a genetic disorder there is no cure only treatment. Diagnosis is important, although I am going through a rough patch and I’m not really getting on with physio I don’t want people to think why bother?

I couldn’t get adequate pain relief until I had a diagnosis, I was fobbed off with paracetamol and diclofenic. That combination barely touched it and would leave me confined to bed due to the pain. I am extremely unlucky as my “version” of EDS has affected my spine – one of the most painful types of EDS. I am now on morphine slow release tablets, I don’t revel in the fact I am on strong pain killers. I take the lowest dose I can 10mg in the morning 10mg at night. (This dose has now been increased to 20mg twice a day with oramorph to take with breakthrough pain. With my GP’s consent I am allowed to increase my slow release morphine up to 40mg, but if I need to do it for 4 consecutive days I must contact him- 5th March 2014). I still have pain and there are days I take 20mg or even 30mg to numb the pain.

Also for 10 years I had constant nerve pain in my left thigh a problem I saw my old GP about on a regular basis. Since the diagnosis I have been put on a medication (which for reason I can’t spell today) that has resolved that issue almost completely.My old GP did X- rays of my spine and hips but unfortunately with EDS a lot of the problems are in the soft tissue which doesn’t show up on a X-ray. Having a diagnosis means the Dr’s will now do the appropriate tests rather than rely solely on X-rays.

With EDS Hypermobility there is a 50% chance of an aortic aneurysm, plus there can be issues with the mitrial valves of the heart. Another good reason for a diagnosis, at present I am too sick to attend any cardiology appointments for scans but both my father and sister have had their hearts checked and are clear of any of these issues. Great news.

Another good reason to have a diagnosis, especially for the female of the species is that after menopause we lose bone density, in EDS we lose a lot more than regular folk. So its important that we receive a bone density scan before hitting the menopause and once after the menopause receive regular scans to ensure we aren’t losing too much. With crappy collagen which is at the base of our problems we need to ensure our bones are not being put under undue stress by muscles, tendons and ligaments failing to do their jobs properly.

Also as people with EDS we have the risk of passing this genetic condition on to our children (not applicable to me!). There is a 50% chance that children with  an EDS parent will inherit the condition. By getting the diagnosis you will be helping your off spring so that if they do have the condition you will be able to assist them in protecting their own joints. This has been one of the reasons why I have fought hard for a diagnosis, I have a nephew that is soon to be 2 years old. I didn’t want him to be in the same amount of pain as his mother and me.

EDS also increases the risk of peridontal disease so its important you have a dentist who is aware of your condition. My dentist X-rays my jaw yearly to ensure I’m not losing bone density which would mean I could start losing teeth. Dentists in particular need to be aware of the issue patients with EDS have concerning local anaesthetic in the fact it either doesn’t work or we burn through it faster than “normal” people. In fact local anaesthetic anywhere on the body won’t work as well, as I found out on several occasions before my diagnosis. When I complained of pain I got told by the Dr I couldn’t possibly feel it as I was anaesthetised. So on that fact alone I do feel a diagnosis is necessary!

 Also if you are in employment a diagnosis means that in the UK the Equalities Act which replaced the disability discrimination act will apply to you. It means that your employer should make reasonable adjustments for you in your place of work. These could be anything from providing a more supportive chair, adjusting working hours or getting an occupational health advisor in to help you and your employer to work together to find solutions to problems.

Having a diagnosis won’t get rid of the condition, its genetic and currently there is no cure. However having the diagnosis helps with so many aspects of your health and life it would be silly not to pursue it. Having a “rare” condition is never easy but there is help there it maybe that you have to push a little to get it.

Thanks……off for a nap now!

Meet the hounds

I talk about my dogs a lot, they are after all my babies. Without them I don’t know what I would do with my days.

Frankie is my early warning system if I’m going to be ill           ( when I say ill I mean sicker than normal). He knows three days before it happens. Its not something he’s been trained to do its just something he’s always done. His warning is quite subtle and to the untrained eye would probably mean nothing. Sometimes I don’t even notice it until it becomes more persistent and I can’t use the bathroom without him barging in! He is stuck to my side constantly in the three days before I crash and continues until I’m out the other side of it. I worry that its an awful lot of pressure for him to deal with and its no wonder he is so protective of me that he will occasionally bark at my husband if he comes into my room whilst I’m under his watchful gaze.

This is nurse Frankie when he was on duty two weeks ago. He puts his legs on head on me so that I can not move without him being aware of it. He’s going to be 8 this year and a more soppy loving dog would be difficult to find. Although if you met him out and about you would think he was a wild barking brute. Give him a bonio and things change dramatically! Frankie is my dog and has been right from the start.

Willow, Farnkies sister is a different kettle of fish. I think she would have been happier in a house where she was the only dog. The runt of the litter who we didn’t expect to live as she weighed 100g less than all the other pups in the litter had attention lavished upon her from the day she was born. Willow believes that humans purely exist to ensure she is cuddled and adored from the minute she wakes until the moment she sleeps. Everyone who visited the house ends up with willow stuck to their side having to cuddle her! She is the leader of the pack and can be quite bossy. She’s not a massive licker, to receive a kiss is quite an honour. She’s a nervous dog taking after her mum Mollie. She likes to bark and has on occasion barked herself hoarse. Luckily for the neighbours her barking mainly takes place in the car.

This is Willow sharing the sofa with me after settling down for yet another cuddle. Willow doesnt have a favourite when it comes to my husband and I. She is happy as long as someone is cuddling her. She is 8 this year and is Frankie’s sister. They came from our 2006 litter born in our spare room. A litter of nine pups, three girls and six boys.
Mollie is the grand dam, mother to 18 puppies, two litters and Frankie and Willows mum. She’s best friends with Frankie and still to this day cleans Willow and Frankie’s ears every morning! Mol will be ten this year and over the last twelve months has suddenly started showing her age. Earlier in January she was diagnosed with the early stages of canine dementia. The symptoms started very slowly and probably wouldn’t have been noticed initially had it not been that I am with them 24/7. She stares off into space intently gazing at nothing, occasionally gets lost in the house and has now started running off out of the house every evening when my husband gets home from work. Even though its just two to three metres from the house to the car she has to put on a lead to ensure she doesn’t run off.
Mollie is my husbands dog through and through. The only time Mollie has been my dog is when she was in season or when she was pregnant. During those hormonal times she would want me all the time. It was very special to have her wanting and needing me much to my husbands disgust. 
The dementia is slowly robbing her of her mind however there has been something good come out of it though as she now is much more affectionate towards me and her behaviour has reverted back towards that of a puppy. There have been a few accidents in the house but as long as she is happy we aren’t too worried. She can grow old and batty like we all will at some point.
So these are my babies, three weimaraners who are very much loved and adored.

Medical terminology – I know I tend to use it a lot!

I know I have an awful habit of using medical terminology to describe my symptoms or conditions. So I thought I would break it down for anyone who is new to autonomic dysfunction or Ehlers Danlos syndrome.

POTS – postural orthostatic tachycardia syndrome ( its full name) This is diagnosed by a tilt table test. You are strapped to a table with a blood pressure cuff and heart rate monitor attached to you. Its usually done in a dimly lit room and you lie flat for 15 minutes or so, so that base lines readings of your pulse and blood pressure can be recorded. Then out of nowhere you are pushed into an upright position to stimulate standing. Pots is diagnosed if your pulse increases by more than 30 beats per minute or goes above 120 beats per minute during the first ten minutes of the tilt. Non pots people have an increase of 15-20 beats per minute and then their heart goes back to normal. Vomiting, fainting and feeling like crap are all quite normal during this test. I ace this test! In very basic terms your body can’t cope with changes in posture and sends your heart mental.

Orthostatic Intolerance / OI – This is a drop in blood pressure on standing and is again diagnosed via a tilt table test. For the first time I demonstrated this on a tilt table test last month. I have no idea what my pre tilt blood pressure was doing but it dropped to 80/40 on the upright tilt. I will be honest I felt like crap, lost my vision but could hear the technician panicking and suggesting the table be dropped back down! As a result of OI  I have to be careful when I get up from lying down or being seated as I can faint if my blood pressure drops ( as anyone would!)

Arrhythmia – A normal heart rate range is between 60-80 beats per minute. Very fit people tend to have slower heart rates of around 50-60 beats per minute. Below 60 and you are entering bradycardic territory above 90 and you are entering into tachycardia country. I can suffer with both. A heart rate that doesn’t stick in a rhythm is also an arrhythmia. Mine bounces around all over the place and is probably why I feel like shit most of the time.

Autonomic dysfunction / dysautonomia – This refers to problems with your autonomic nervous system. Your autonomic nervous system deals with the bodies functions that you have no conscious control over so breathing, heart rate, blood pressure, digestion, temperature control to name a few. Pots/ OI etc are symptoms of autonomic nervous system dysfunction. Why mine has now been classed as severe I have no idea. I was too out of it after the tilt table test to ask!

Post prandial hypotension – this basically means your blood pressure drops after eating. This is a problem I’ve had all my life I just never realised what it was and didn’t bother to do anything about it until it got much worse. After I eat I get very sleepy and I get palpitations. Some days its really bad and I will end up going to sleep / blacking out no matter how hard I try to stay awake. When I come around an hour or so later I am very confused, I think that I’m back at my parents house and I haven’t lived there since 1996 or I think I’m back at our flat – haven’t lived there since 2003. It gets quite frightening especially if my husband is at work as I have no one who can tell me what is going on. The condition is caused by too much blood going into the abdomen to digest your meal. This causes your blood pressure to drop and in turn causes the blackout / faint . I’ve tried all the first stage interventions low carb meals, ibuprofen taken 30 minutes before a meal, espresso drunk whilst eating. Nothing works and out of all my problems its the one I find hardest to live with.

Low Blood Pressure so what exactly is low blood pressure? The world health authority classes it as blood pressure below 100/60 in the UK most drs think low blood pressure is any reading below 90/60. My blood pressure is constantly low, sometimes even my blood pressure monitor can’t read it and displays error! Your blood carries oxygen and nutrients etc around the body. When your blood pressure is low your brain and other organs simply do not get an adequate supply of oxygen. Too little oxygen and you start to feel fatigued, dizzy, nauseous to name a few symptoms and if it goes low enough you will faint ( syncope as the drs call it). Normal blood pressure is anything above 100/60 or 90/60 high blood pressure is anything above 140/80. Everyone has their own blood pressure number that their body likes to function at. I function best when its around 110/80 but I haven’t seen that in a very long time!

Ehlers Danlos Syndrome / EDS – is a connective tissue disorder that effects the bodies collagen. Collagen is the bodies glue, without it you would fall apart. EDSers as we call our selves have faulty collagen its too stretchy / floppy leading to dislocations, partial dislocations, joint pain, easy bruising, gastro problems and a whole heap of other issues.
There are quite a few different types of EDS mine is the hypermobility type. It means the majority of my joints can move way beyond what’s considered normal. For example I can place the back of my head on my back, I can touch my thumb to my forearm, my fingers can all be moved past 90 degrees, I can do prayer hands behind my back etc etc whilst it was fun when I was younger and when I first got diagnosed I’m in constant pain with my joints. Every day is a battle to work out what I can do to redfuce the pain and have some level of activity. Recently after a week in bed I could barely walk so using my joints as much as I can is important to retain functionality.

I’m sure there are loads of other medical terms I drop into my blog at the drop of the hat but I just can’t think of them right now! If I haven’t mentioned one and you want a basic explanation please leave a comment!