#ThisIsMyEDS

Annie Segarra (@annieelainey on Twitter) created #ThisIsMyEDS to show the wide variety of experiences of those with EDS. She intended it to be a series of videos, but as I detest the sound of my own voice, I’ve opted for a blog post instead. The questions are Annie’s, the answers mine. The series is intended to raise awareness during Ehlers Danlos Awareness Month (May). It’s now 11pm on May 31st, so I think I’ve just about made the deadline! 

PART 1: WHAT IS EDS IS LIKE ON MY BODY #ThisIsMyEDS
Introduce yourself: name, pronoun(s), and EDS type.

My name is Melissa and my pronouns are ‘they/them’.

I was diagnosed with Hypermobility Ehlers Danlos Syndrome. 

First things, first, in one word, how are you feeling today?

Exhausted. 

For those who don’t know, can you explain EDS [medically] in a sentence?

EDS is a connective tissue disorder that effects any part of your body contains connective tissue, which is most of it. 

What’s your favorite analogy for how EDS feels? Or what EDS is like?

It’s like a building made with faulty concrete. Unstable. 

What are your symptoms and comorbid illnesses/conditions

Chronic Pain, Joint Pain, Muscle Pain, Hypermobility, Lax and fragile joints, Frequent subluxations, Easily Bruising, Chronic Fatigue, Chronic Migranes, possible POTS, Dysautonomia, Gastroparesis, Anxiety, Depression, Lower Vision, Cardiovascular Issues, Cognitive Impairments: Difficulty concentrating, poor memory, Irregular body temperature, Limited ability to walk, Limited ability in upper body, Physical disabilities, Dysmenorrhea, TMJ disorder, hiatus hernia, lack of appetite, gastritis, Peripheral Neuropathy.

How does EDS impact your daily life?

It limits what I can do, where I can go, how much I can socialise. 

How often are you in the hospital? 

Only when I need various tests e.g. MRI, endoscopy, laporoscopy, echocardiogram etc. So, a few times a year. And I spend a lot of time visiting consultants as EDS effects so many different parts of my body. For example, I have seen cardiologists, neurologists, gastrointestinal specialists, 

What physical disabilities impact your daily life? 

My unstable ankles and weak joints make walking difficult and often painful. I get dizzy quite a lot and sometimes faint. My peripheral neuropathy has recently started to effect my fingers so I fumble a lot. My fingers get sore if I write or type too much. 

 Devices you use for your survival?

I don’t really use too many devices. I type as much as I can e.g. for writing notes, as handwriting is difficult. I use a cane from time to time. I probably should use it more. I use a shopping bag with wheels as I cannot carry heavy items. I’m considering getting a shower stool. 

 Do you work?

No, I haven’t worked since my son was born, so over ten years. I’m not sure I’ll ever be able to work again. 

 Are you often on bed rest?

Not officially. But I do spend an awful lot of time in bed. I am often weak and tired and get dizzy if I get up. 
 How does it impact you emotionally, your mental health?

I have a huge amount of anxiety when it comes to leaving the house or socialising. I need to know that I can come home again quickly if I need to rest. I am very isolated and have no friends in my area. Obviously this can make me depressed at times. Also, dealing with the medical profession can leave me anxious and depressed as well. 



PART 2: Diagnosis with Ehlers-Danlos Syndrome #ThisIsMyEDS


How long did diagnosis/self-diagnosis take? When and how were you ultimately diagnosed?

I’ve always been in pain and had low energy levels. When I was first pregnant, at age thirty, things got much worse. My obstetrician said it was a normal part of being pregnant. When my second child was two, so age 33, I realised I couldn’t blame my symptoms on pregnancy anymore. After about a year I was diagnosed with fibromyalgia. But I didn’t feel that was right, as it was mainly my joints that were effected plus mostly my left side, while fibromyalgia is usually bilateral in presentation. When my son needed help from an occupational therapist, she explained about how Hypermobility was effecting him. I had no idea what that meant so googled Hypermobility and that let to Hypermobility Syndrome and EDS. I finally found a rheumatologist who knew about it and he diagnosed my son, and then me, in about ten minutes. He was aged seven, and I was thirty seven. 

What was your emotional reaction when you were diagnosed or self-diagnosed? And now?

Relief. Also, if I’m honest, a certain smug satisfaction that my self-diagnosis was correct. Now I’m weary and angry as there is such little support. 

When did you first start experiencing symptoms? When did you acknowledge them as symptoms?

Pain, fatigue, appetite problems: since childhood. 

Other symptoms seem to crop up every few years. 

Was there a specific age where your health drastically changed? If so, when was that?

When I was 23 I started to get extreme exhaustion. At age 30, the extreme pain started. And about two years ago, my stomach issues and heart issues and dysautonomia got much worse. 

What medicines, treatments, and/or devices do you typically need? 

I take two different antihistamines, Zantac and Zyrtec. I take a stool softener, Movicol. I take a nutritional supplement, Fortisip. Today I started taking magnesium citrate as my doctor thinks it might help with multiple issues. I have tried numerous painkillers but none have worked. I do use various gels and heat packs and ice packs. I have a TENS machine but the pads don’t stick well. 

How often do you go to the hospital? How comfortable are you in medical environments?

 I don’t go too often, only outpatient procedures. I have a lot of anxiety in medical environments. If anything, it’s getting worse each year. 

What kind of resources and support do you use? (are doctors helpful, support groups, personal research, trial and error)

My GP is very supportive. My gastrointestinal specialist is too. I think it helps that they both have other patients with EDS. I used to be part of various Irish EDS support groups, via Facebook. I use Facebook less these days so my support comes mainly from others with EDS that I found on Twitter. I like to read research into EDS and have various book I’ve bought as well. 

PART 3: Letters from an EDSer #ThisIsMyEDS


What’s something you wish your friends/family knew? “To or Dear friends/family”

Dear family,

To those of you who have EDS as well, I’m glad I was able to help get you diagnosed. Before I started investigating my issues, none of us had heard of EDS. We didn’t even realise we were double jointed, though my brother’s party tricks used to amuse us. We certain,y didn’t think our separate issues were actually linked. I’m sorry you share my genetics, but I’m also glad as we get to compare symptoms and treatment and support each other, and listen to each other whinge. 

To those of you who don’t have EDS, please be patient with us. I know you think we complain a lot. You may think we can’t really suffer as much as we do. But please trust us. I also know it’s hard to watch loved ones suffer and you are coping as best you can. I wish you had more support too. 

Dear friends,

I know I dont see a you as often as we’d all like. And it may seem like I’m not making enough of an effort to visit or keep in touch. But even leaving the house for a few minutes is difficult most days. Im glad we can use technology to keep in touch. And when we do get to meet in person, please believe me that it makes me incredibly happy to have you in my life. 

What do you wish strangers knew about EDS? “To or Dear Strangers”

To Strangers,

Yes, I know I’m often quiet and standoffish. I may come across as rude. But that’s mostly because I’m exhausted and trying to cope with intense amounts of pain. Please do not judge me. And offer me a seat. 

What would you like to say to the doctors that caused you harm? “To or Dear Harmful Doctors”

To harmful doctors,

Please believe me when I tell you my symptoms. I’m not doing so for attention. You take enough money from me, the least you could do is actually listen. I’m not looking for a quick fix or a miracle cure. But I’d like to be taken seriously and at least a little effort put into problem solving. Let’s work together and see what progress we can make. 

What would you like to say to the doctors that have been a great help to you? “To or Dear Helpful Doctors”

Dear helpful doctors, 

Thank you. Thank you for listening. Thank you for believing me. Thank you for not giving up on me. Yes, it’s tedious going through all this trial-and-error as so little seems to work. But I appreciate the effort you put in, the extra reading that you do, and the thought you put into seeing what else we can try. 
What would you like to say to those seeking diagnosis? “To or Dear those seeking diagnosis”

Dear those seeking diagnosis. Don’t give up. It’s a long and confusing road, especially with the new diagnostic criteria. But there are lots of us who have been down it and can guide you. I hope you get your diagnosis and that your life improves and you get more support. We are all in this together and if you ever need help or advice, we are here for you. 

What would you like to say to someone who was recently diagnosed? “To or Dear those recently diagnosed”

Dear those recently diagnosed. Welcome to the herd! I hope you are feeling re,keg at finally having a name for what has been troubling you. There may not be much official support or treatment, but please know your fellow EDSers will be here for you. Try and take it easy, no need to rush into figuring out what it all means to you. You’ll do that eventually. 

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Faeces Shaming

Content Notice for faeces, obviously enough. 

I want to write about a subject that, for some, is taboo. And while I agree that it’s a sensitive subject that requires the consent of the person you are talking about, I do think we need to talk more openly about disabled people and…poo. Because, quite frankly, there are a lot of shit ideas (pun intended?) about what it means to clean up shit. And I’m sick of them. 

Humans, like all animals, shit. It’s a fact of life. We eat, we digest our food, we excrete the undigested food along with dead and living bacteria and various other substances. Yes, it’s smelly. Yes, the bacteria can be harmful and we need to be careful about that. But, it’s not THE WORST THING IN THE WORLD. And yet, the way people act, it might as well be. 

It seems that, once you are not an infant, once you hit whatever age is deemed ‘socially acceptable’ by your culture, having someone else clean your shit is seen as the greatest of indignities. And to clean up someone else’s shit is a horror beyond horrors. And this attitude has led to a lot of bad outcomes for people. 

I’ve lost count of the number of times I’ve read parents of autistic kids use the fact that their kids are incontinent, or even (horror of horror!) smear faeces, to ‘prove’ how ‘low functioning’ their kids are. That I cannot possibly understand what they are going through. Well, continence is not a measure of anything. Bowel issues effect a lot of autistics, and so does faecal incontinence. Even us ‘high functioning’ autistics. And yes, I have personal experience of this. It’s icky and annoying but I get on with it. I don’t go around shouting about it and using it to show what a ‘burden’ incontinent people are. 

And yes, it is used over and over as an example of people being a ‘burden’. I read a newspaper article last year about people caring for their elderly parents. The writer wrote about the heartbreak of finally putting their parent in a nursing home. And the reason they did so, the last straw as it were? The fact that their parent was now incontinent and that they would have to clean their shit. Because, that’s too much to ask of anyone other than a paid professional, right? People will feed and dress and even bathe their loved ones beyond infanthood without too much complaint. But, clean their poo? No way!! 

Like I mentioned before, all animals shit. The same people who won’t clean up their parents shit, or who martyr themselves for cleaning up their children, seem to not have a problem cleaning up after their dogs. And, before you talk to me about the relative size of the faecal matter, have you seen what comes out of a Great Dane’s bum?! And yet, I have yet to read about Great Danes being a burden. Somehow, that’s reserved for non-baby humans. 

I believe that this is also a factor, maybe even an unconscious one, in why there aren’t many accessible toilets for people who need a changing table and hoist. The idea that, unless you are a baby, if you need to wear nappies you belong in a nursing home or other facility. That you should not be out in public. There are so many parents and carers who clean up after incontinent people, and who do so without complaint. Who don’t see these people as a burden. But because society treats them as such, because it doesn’t accept that they have a right to be out in public, life is made extra difficult. 

There is a campaign called #ChangingPlaces, aimed at getting more public facilities such as cinemas, shopping centres etc to install toilets with ‘adult size’ changing tables and hoists. It’s a campaign I support fully, but it seems to be a slow burn. And I do believe the stigma of ‘non-babies in nappies!’ is part of the reason. But at the end of the day, everybody -young, old, able-bodied, disabled- shits. It should be NO BIG DEAL. Some people require a bit more help than others, sure. But that does not make them a ‘burden’. And the more we talk about this, and the less taboo and stigma attached to it, the more we can make their lives a little bit better. 

One Day With EDS

As EDS Awareness Month (May) draws to a close, I thought I’d take an idea from @MortuaryReport on Twitter and mention every symptom I have in one day. Instead of a thread of Tweets, I’m going to write them out in this blog post. So, here goes:

As soon as I wake up, I am overcome with nausea and retching. I slowly turn over in bed, exhausted. I have to sit up slowly or I will get dizzy. My neck aches. 

I put one foot on the floor. I dread standing up on my feet as peripheral neuropathy in my soles means agony in every footstep. It feels like walking on razor blades. Even when I don’t walk, my soles alternately burn, tingle, go numb or ache. I am aware of them from the second I wake up until I finally fall asleep. 

I finally get up, and go wake up the children and get them dressed. They have their own constant issues due to EDS. But their story is not mine to tell. If they don’t have school, I can skip this part and things are a little easier. But today is a typical Monday morning during term time. 

I head downstairs to the kitchen. I walk slowly as I am very dizzy. I prepare breakfast. My fingers and wrists ache. I make myself a cup of tea as the thought of eating makes me feel sick. I take my stomach meds and my antihistamines. I no longer bother with painkillers as none of the ones I’ve tried make any difference. 

I let the dog out and get him some food. I retch multiple times from the smell of the dog food. I feel dizzy as I place the bowl on the ground. 

I make the kids school lunches. I get them into their shoes and coats. My husband walks them to school, with the dog. When he gets back, I make us both a coffee. I still haven’t managed to eat anything. 

Because I brought the dog for a thirty minute walk yesterday, my whole body aches more than usual. Every joint, every muscle, especially in my legs. I am exhausted. I crawl back into bed and doze for a couple of hours. 

Finally, around noon, I get dressed. I debate whether or not to have a shower. I decide against one, as I’m already dizzy and I’m just sitting down. On days like this, I have a tendency to faint in the shower. I grab clothes that are easy to get into, and go back downstairs. 

I am finally able to eat. A pot of toffee flavoured yoghurt and some dry crackers. I moisten the crackers in the yogurt to make them easier to swallow. Dysphagia means swallowing food can be an ordeal. But the saltiness of the crackers helps my nausea, so I’ve improvised this meal to try and suit all my issues. 

 I catch up on Twitter while eating, trying to distract myself both from the stomach pain and from the headache that’s starting. My neck still hurts so I have to be careful to keep adjusting the screen so I’m not straining my neck even more. I constantly shift in my seat as I cannot find a comfortable position. I end up spilling some of my food. I then go lie on the sofa, propped up, to try to digest some of the food. I still feel very very queasy. 

I slowly get up. I go into the kitchen and begin emptying the dishwasher. I have to go slowly and be careful when bending down so I don’t get dizzy. I also have to be careful when reaching up, as my shoulders are unstable and make it hard to put away the dishes that belong on high shelves. Some days this chore can take five minutes. Today it takes twenty as I need to sit down halfway through. 

My jaw aches as my TMJ disorder kicks in. I must have been clenching my teeth in my sleep again, as the jaw joint on my left side is ‘stuck’ in a clenched position. I massage it from the outside to try to free it. Eating has loosened it a little but it aches like mad. I consider putting a heat pack on it but that would mean getting up and finding one of my many heatpacks. I might do that later if the pain becomes worse. 

I start to fill the dishwasher with last night’s dirty dishes. I was too exhausted to do it then, but not sure I’m any better now. I turn the machine on and head upstairs. My children call our stairs ‘Mt. Everest’. It has sixteen steps. My left knee crunches sixteen times, each time sending shooting pain up my thigh. I head into my daughter’s room. I need to wash her bedclothes. I’m tempted to lie on her bed instead. I remove the dirty duvet cover, sheet and pillow cases. And then sit on the bed for five minutes. I head back doenstsirs and put the laundry on. I am exhausted again. I seem to have done something to my back. I think it’s my SI joint. I wriggle around and press it until it slips back where it belongs and feels better. 

I now attempt to make lunch. My husband is working from home today so I need to make lunch for the two of us. On days where he’s away, I don’t bother and just sip on a Fortisip nutritional supplement. I realise we’re out of bread. We often run out of stuff because my brain fog makes meal planning difficult. I find some tortilla wraps and make tuna wraps. I try to sit down while making them, as standing for more than a minute or two makes my peripheral neuropathy unbearable. Plus I get dizzy as my blood pressure plummets. I make a pot of tea and call my husband for lunch. 

I manage to eat a few bites. I need to chew a lot so that I’m actually able to swallow the food, but chewing sets off my TMJ pain. The pain has now combined with my neck pain to set off a headache. I give up with half the wrap remaining and decide to make it up later with a Fortisip. I go and lie down. My left hip has started to hurt and it’s excruciating. I get a heat pack and stick it in the microwave. I alternate it between my hip and my jaw. I sip my tea while resting. 

It is now time to collect the kids from school. I put the lead on the dog and head out. It’s only a five minute walk for my husband, but takes me (and kids) ten. My ankles give way a few times and I am lucky I don’t fall. I haven’t brought my cane, as I’m still embarrassed by using it in front of the other parents. My wrist hurts from holding the lead. I arrive at the school gate a few minutes early. I am wearing my raincoat as was cold when leaving the house. Everyone else is wearing t-shirts on such a sunny day. My face feels hot but my fingers and toes are like ice. 

I keep adjusting my posture, and shifting my weight from foot to foot. Standing still for any length of time effects me so badly. The kids finally arrive. I take their schoolbags and put one one each of my shoulders. The kids have trouble carrying their bags so I make this sacrifice for them. I’m annoyed by how heavy they are. The kids are exempt from homework so they ought to not have much in their bags. My shoulders and while back ache so much, with shooting pain up my neck. We walk home. Every footstep is agony. I am exhausted yet again. 

When I get home, I go upstairs and lie down in bed. I try to nap but the pain keeps me awake. I come back downstairs. As I know I will struggle to hang out the sheets and duvet cover, I turn the dryer on. My shoulders hurt, my neck hurts. And now my eyes too. 

My husband has bought me a box of dark chocolate mints as a wedding anniversary present. I nibble on these as the mint helps with the nausea and I need the calories. The soles of my feet feel like they are burning again. 

As we are now out of milk as well as bread, I head out to the supermarket. It’s a ten minute walk there, ten minutes back, and around ten to pick up the actual stuff and queue etc. It feels like the longest half hour of my life. Every footstep is agony. Again, I haven’t brought my cane. This time, I’ve simply forgotten it. Waves of nausea overwhelm me. I take slow deep breaths and make it home. I usually bring my wheelie shopping trolley but this time I didn’t, as I was just buying milk and bread. And some snacks for the kids. My shoulders ache so much that I regret this decision. 

I get home and turn the oven on. It’s nearly time to cook dinner. My knuckles ache, my wrists ache, my neck aches. I sit down for another rest. I slowly sip some water. I put the potatoes in the oven. And sit down again. I have to stand up to fry the steak. I’m seriously considering buying a stool for the kitchen. I prepare the children’s food. When the food is ready, I call the family. At this point I have a severe headache and no appetite. I nibble on the food as best I can. Most of it goes uneaten. I do drink a glass of red wine.  

I go and lie on the sofa again. I keep dozing off but get called often by the kids to help them with various things. I give them their meds. The dishes still need to be washed, but I usually have to sit for about an hour before I can face them. I remember that the bedclothes are now dry and need to be put back on my daughter’s bed before she can go to sleep. 

I go upstairs and slowly put the clean sheet on the bed. My knee has popped out of its socket while climbing the stairs. I sit down to put the clean pillowcase on the pillow. I rest for a while then grapple with the duvet cover. I collapse on the bed and doze off. But only for a few minutes as I’m in too much pain. 

I notice that my jaw is clenched again. I try to relax and unclench all my muscles. I go into the kitchen and fill the dishwasher. I wipe down the counters. I sweep the floor. All of these take ages and hurt so much to do. I’m done. At this stage, I can hardly move with the pain. I sip on a Fortisip, pushing past the nausea. I will spend the next few hours trying to lose myself with Twitter, then finally go to bed. 

And there you go. A fairly typical day. Not a ‘good’ day, but not the worst. Just a day in the life of someone with EDS. Though we are all different, I’m sure this will resonate with some of you. 

May Tiger Haul

Summer was very much the theme in Tiger this month, and I was very happy to be able to pick up a few needed items. 

[clockwise from top left: hot/cold gel pack, microbead cushion that zips into cylinder shape, basil grow pouch, packing checklist, ball and paddle game, small first aid kit, battery operated desk fan, two hand-cranked mini fans, two glasses with pineapple cocktail design. ]


And a separate photo to show the food: 
[clockwise from top left: pack of three liquorice sticks, bag of pretzels, pack of Dutch waffles, pack of garlic and chilli crunchy snacks, bag of nougat cubes, two packs of orange flavoured popping candy]

Book Review: Unf*ck Your Habitat by Rachel Hoffman

I wrote a little about the Unf*ck Your Habitat phone app, in this blog post. So, I was understandably excited when I discovered there was also a book with the same title. One minute later, and I had it on my kindle! It’s a short book, and relatively inexpensive. And for those familiar with the UfYH concepts, website etc, it doesn’t add too much in the way of new ideas etc. What it does do, is explain everything very very well. It is well laid out, and the chapters are easy to read. 

The best part of the book, though, is it’s the first time I’ve read a ‘housework’ themed book that doesn’t just mention disability in passing, but devotes a lot of space to the subject. It emphasises all the issues disabled people can have with housework. And it focuses on mental illnesses, such as depression and anxiety too and not just physical disabilities. The language throughout is respectful, unless you have a problem with swear words! And emphasises that these issues are not our fault, and certainly not ‘laziness’. It also suggests ways we can adapt the UfYH system so that it suits our particular circumstances. It also has a section dedicated to the unique challenges faced by the children of hoarders. Again, I have not seen this in other books. There’s a good list of links to resources in the back of the book too. 

So, overall, I would definitely recommend this book to anyone who struggles with housework. I am so glad I discovered it’s existence. Reading it has given me the motivation I needed to get back into a regular routine of housework. And I’m seeing the benefits already! 
[image of the front cover of the book. There is a rich blue background, and an image of a wooden clothes hanger hanging on a round metallic hook. The author’s name is written above this, in white. Below the hanger are the words, in beige, “Unf*ck Your Habitat.” And below that, in white, the words “you’re better than your mess”]

PDA Awareness Day – PDA Test for Adults

So, it seems today, May 15th, is PDA Awareness Day. I have written about PDA before, in this post, but I want to write a little more on how it effects me. 

I came across this PDA Test for Adults on Dragonriko’s fantastic blog. So, I’m going to go through the questions and expand on my answers beyond a simple ‘Yes’ or ‘No’. There are 50 questions in total, so this could end up being a rather long post. To prevent having to keep going back to their blog post to check the questions, I’m first going to post screenshots of the questions, and then work my way through them.



1: Do you find it difficult to do the simple things that other people find easy?

Yes. I find so many simple tasks, like getting dressed or brushing my teeth, so difficult. 

2: Do you dislike praise?

Yes. I never feel that it’s sincere. I feel too much pressure to live up to it. 

3: Do you find it harder to do tasks you have to do, as opposed to optional tasks?

Yes. Something being optional takes the pressure off and makes me more likely to do it.

4: Do you find it more difficult to complete tasks when people are watching?

Yes. Being watched makes it impossible for me to do anything. 

5: Do you feel a need to take charge but dislike being placed in charge.

Yes. I naturally seem to take charge of things, but if I feel forced into it I panic.

6: Do you dislike being rushed?

Yes. I am very likely to experience a meltdown if I feel rushed. 

7: Do you feel unsure how you will react in a situation, despite previous experience? 

Yes. Because every single occasion is slightly different, no matter how much experience you may think you have.

8: Do you feel like others are always wrong, even though you know logically that can’t be true? 

Yes. Mostly. I would replace word ‘always’ with ‘often’, and I seem to be getting better at this.

9: Do you dislike imposed routine?

Yes. While I need and enjoy routine, it has to be something I come up with, not imposed by others or by society.

10: Do you/have you ever struggled in work/school due to the amount of work required of you?

Yes. Somehow work always seemed to pile up and I never seemed to have enough time to do it.

11: Do you tend to avoid routine tasks on a regular basis, such as washing, eating, dressing, sleeping and going out?

Yes. Especially eating, brushing my hair/teeth, showering, and leaving the house.

12: Do you find it difficult to start things you enjoy, such as hobbies or interests?

Yes. Like writing this blog!

13: Do you struggle to tell when you are feeling anxious, did/Do you believe you rarely feel anxious? 

Yes. Though I’m getting better at recognising it.

14: Do you/have you ever experienced anxiety, more than the average person? 

Yes. For example, the level of anxiety I feel when I need to leave the house, or to interact with others, is much more than average. 

15: Do you feel anxious when pressured to do something, even if it is easy?

Yes. Being pressured to do things often leads to meltdowns, even if the thing is easy to do.

16: Do you spend more time delaying/avoiding a task than it would take to actually do it?

Yes. Something might take ten minutes but I’d spend hours delaying/avoiding it.

17: Are there days where you can do lots of tasks and days where you struggle with simple things such as dressing and eating?

Yes. And I never know from one day to the next which it will be.

18: Do you find it difficult to motivate yourself to do tasks?

Yes. I usually have to bribe myself in some way!

19: Do you/have you ever experienced panic attacks, more than the average person?

Yes. The earliest one I remember was when I was six. They are quite frequent.

20: Do you feel that everyone is equal, regardless of age/race/gender/social status?

Yes. And also regardless of disability status. 

21: Do you/have you ever had obsessions around certain people? ( For example: wanting to know everything about them, be around them all the time, feel jealous when they spend time with other people)

Yes. Eventually this is what has happened with every single friendship I’ve ever had. And they understandably reach their limit and end the friendship. 

22: Do you/have you ever made up new words, sometimes for things or people, or deliberately mispronounced words?

Yes. As a child I was forever inventing new languages.

23: Do you/have you ever experienced hyper/silly behaviour?

Yes. Not so much now, but a lot when I was younger. 

24: Do you feel a need to get things done straight away? Are you impulsive?

Yes. I used to deny that I was, but on reflecting I realise that it is true for me. 

25: Do you prefer to have options/choices in most situations?

Yes. But a limited number. Too many choices overwhelm me.

26: Does a lack of choice make you feel out of control/panicky?

Yes. I need to feel I can pick what I do. 

27: Do you like to do the same thing over and over until it becomes boring, then move onto something new?

Yes. This is especially true with food. But also hobbies.

28: Do you feel anxious/panicky when someone doesn’t follow your instructions correctly or when they deviate from the plan? 

Yes. This is a major problem for me. 

29: Do you like making changes in certain environments, such  as rearranging furniture in your home? 

No. My first ‘No’! I like my environment to mostly stay the same.

30: Do you feel unable to cope with waiting for things?

Yes. I am very very impatient. 

31: Do you/did you as a child dislike accommodations that make you stand out as different?

Yes. Not that I had too many visible accommodations as a child but I know if I did I’d have hated it. And now, my most visible accommodation is my cane and I really hate the attention I get when I use it.

32: Do you dislike being criticised but are critical of others?

Yes. This is still a major problem for me.

33: Do you feel everyone should follow the rules all the time but find it difficult to follow the rules yourself? 

Yes. I think this was more of an issue when I was younger though.

34: Do you question rules/regulations/laws?

Yes. Especially if they make no logical sense.

35: Have you ever been described as being manipulative?

Yes. But only by those who know me well. I don’t think I am!

36: Do you cancel plans at the last minute? 

Yes. I try not to, but do so more and more these days.

37: Do you/did you as a child dislike losing/coming last?

Yes. And this made School Sports Day hell for me as I was always last in everything!

38: Have you ever been described as controlling?

Yes. And again, I don’t think I am! 

39: Do you daydream rich, imaginative worlds? 

Yes. Not now, but when I was a child I did all the time.

40: Do you/have you ever used role play/pretend play, sometimes in order to cope with life/tasks/social situations?

Yes. Again, when I was a child.

41: Do you struggle to start tasks because you expect them to be perfect the first time round, then become disappointed when they aren’t? 

Yes. Again, this is a huge problem for me.

42: Do you find yourself telling lies to delay/avoid things? 

Yes. I have lied about making phone calls and saying there wasn’t any answer, because I hate making phone calls so much. 

43: Do you feel constrained by social expectations, such as having to say ‘please’ or ‘thank you’, having to smile?

Yes. And get considered rude a lot because I avoid doing those things.

44: Do you struggle to admit when you’ve done something wrong?

Yes. This is one of the things I hate most about myself.

45: Do you feel unable to control your reaction to things, emotionally and/or physically?

Yes. Both emotionally and physically. 

46: Do you change your mind often?

Yes. Especially when I am rushed or panicked.

47: Do you prefer to spend your time home alone than outside with other people?

Yes. Home alone is my default preference, always.

48: Do you struggle to know how much time to leave for tasks, do you seem to run out of time quicker than others?

No. Though I suspect that is after years of practise. 

49: Do you not tell other people when starting a new project because others knowing makes it harder for you to complete it? 

Yes. I didn’t tell anyone when I was starting this blog, for example.

50: Do you feel a need to control your environment, often to ensure things go the way you prefer them to?

Yes. And even though I know this is not a foolproof plan. 

So, there you have it. Two “No” answers, and even one of those was more a “maybe”.

I guess I can safely say, my autism expresses more in a PDA type of way!

[image of the PDA Society logo. Which is of a cartoon image of a panda, draped around a blue circle composed of overlapping swipes in two shades of blue, with the letters PDA inside the circle in dark blue.]

Proctalgia fugax – a literal pain in the ass. 

I’m in a lot of pain right now, so not sure how well I’ll be able to write this post. But I wanted to mention one of my lesser-talked-about but most distressing medical issue. Proctalgia fugax. It is, quite literally, a pain in the ass. Or, more precisely, an intense cramping and spasm of the anal sphincter. It’s not really known how many people suffer from this, and it’s thought to be under-reported as people are embarrassed to go to the doctor about it. I was, but it’s important to rule out other causes of anal pain, such as haemorrhoids

I suppose I’m lucky in a way, in that the actual intense pain (which is at least 8/10 on a pain scale) never lasts more that ten minutes. And I don’t get more than around one episode a month. But, even after the pain has subsided, I am left in a weakened state. There aren’t really any effective treatments. I do have a nitroglycerin ointment I can use, which cuts the length of the attack by about half. But has the side effect of intense headache that lasts for hours. Last time I used it, the headache lasted for two whole days of relentless pain. Not worth it. 

So, there you have it. Anal pain is not really spoken about often enough. Hopefully you’ll never experience it. But if you do, please go to your doctor. And if you ever need someone to talk to about it, reach out! 
[image of a simple drawing of a peach, complete with a brown stalk and a green leaf. So you get the idea, without me having to be rude!]