When People Still Don’t Get It After The 10,000 Time

Don’t say it, don’t say it, don’t say it….

When you have repeatedly explained your disability, symptoms and needs to someone, in every way you can think of and they still aren’t getting it.

Breathe….

I know it’s tempting to want to strangle them or head butt the desk repeatedly or scream – actually screaming into a pillow is very therapeutic – but eventually you will have to accept it and let it go for the sake of your mental health.

Not everyone’s empathy works in the same way. Some people will instantly get it (whether they have experienced it or not) simply by listening and taking the info on board. Some people need to have experienced something similar for themselves so they literally know what you mean. Others, because it is different to their experiences will never, ever be fully onboard. Even if you have gone through something and they were witnessing it, they still won’t have learned from that past experience.

Now, that’s not to say they don’t care and don’t want to understand. It is entirely possible for a person to sympathise, yet manage to say or do something ignorant and tactless purely by mistake.

I guess what I’m saying is don’t take it personally and don’t beat your head against a brick wall (metaphorically I mean) by thinking you can change someone like that and enlighten them. Some people are all ready at their maximum capacity for understanding and empathising.

Essentially at that point, it is up to them to get their own head around what you need and how you function. I’ve arrived at the conclusions at the start of this post. Trying to make someone understand, isn’t always worth your mental health or your relationship with them deteriorating. If they obviously care about you, sometimes you just have to accept that no matter how much they try, maybe they never will really get it and you have to be cool with that.

Chrissie

Mental Health Awareness Month Has Helped Me Admit To Having Anxiety For 37 Years!

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I thought I always felt anxious just because of life. From being a kid to a teen I was dealing with everyday racism; a family member with mental health probs where I’d get blamed for ‘setting them off’ to point where it was actually enabling them; it not being acknowledged by teachers or Drs that I had learning differences and was Neurodiverse; my Dyspraxia and Hypermobilty Syndrome were undiagnosed and symptoms ignored even after multiple GP visits; I totally failed both A-levels, because of other people’s errors/and then a huge chunk of my hard work work getting lost.

As an adult, when I’d go clubbing I’d either get totally ignored by blokes (even shoved out of the way) or they’d bluntly pursue me for one thing only. Such a head-fuck! In my second job a group of people who I thought were my friends were secretly excluding me from nights out and taking the piss behind my back for a year. Then in my very next job it happened all over again with three other ‘friends’ who, after six months started trying to manipulate and lie to me, like it was a game. I didn’t trust my own judgment or perspective on anything for several years afterward.

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I’d managed to cope with the anxious feelings by talking to (actual) friends and doing lots of fun stuff (everything to the extreme) and pretending all of this was just average daily life. I was ignoring that many things were way more difficult for me to navigate than my friends, for so many reasons I couldn’t understand and that I really wasn’t ‘fine’. Not remotely. When I got overly emotional I blamed the beer I’d drank or that I was over tired. Then, when I finally got diagnosed with several chronic illnesses I was obviously relieved but understandably anxious too.

Basically, I thought it’s not the mental illness ‘Anxiety’ if I’ve always got a reason to feel anxious right? Wrong!

Now, for the past few months the fact I have and have always had anxiety has become so obvious to me, that I can’t ignore it anymore. I was so busy coping with other shit going on, oddly enough, the importance of my mental health got shuffled to the back of my mind. I’ve been having the same two upsetting dreams about being left behind or ignored; I’m stewing on negative thoughts that I can’t shake and over-thinking people’s actions; lately I’ve had a constant wobbly feeling in my tummy that either ruins my appetite or has me running to the loo because the food has flown right through me.

I realise this current anxiety is down to several situations that have all collided at once. It’s wildly skewing my perspective, making me needy and fearful and even effecting my decision making and actions. One of those things was being unable to bear going through five hours of being on my own with my wildly see-sawing thoughts, no matter how much I distracted my self with manicures, makeovers, films and ice cream, they’d creep back. It resulted in me (at least once a day) phoning and/or texting the one person I was meant to be giving a little space to, and yet somehow, never mentioning my anxiety to them. Not once.

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Hopefully now I’ve recognised all of this and having talked some of it through with that person, the anxiety will calm down a lot. They were patient and surprisingly empathetic. It turns out that they’ve had anxiety for years, over-thinking and worrying about me! Since the talk, I’ve already stopped having the dreams so that’s a lot less mentally exhausting. I also feel very relieved, although still a little uncertain. They’ve also said it’s a weight off their chest, just saying it out loud.

There are still some incredibly important things up in the air but only time – rather than numerous phone calls – will reveal how those will work out, so I’ll just have to wait. Gosh, I’m crap at waiting….

Chrissie

 

You Don’t Have To Hide Your Disability Or Condition

I have what is referred to as an ‘invisible disability’ because Dyspraxia is part sensory, part co-ordination and part comprehension/attention/memory related, it’s not always an obvious physical thing. Invisible Disabilities have their own problems when it comes to mingling with the general pubic (yes, I know). I’m going to list them because I like lists!

Lazy But Frequent Assumptions People Make About You

  1. People loose patience with you because they think you are being lazy or just taking your own sweet time.
  2. People think you’re just a big weird goof and make tactless observations or find it easier to avoid what/who they don’t understand.
  3. People scowl at you for using things/spaces for disabled people because you aren’t in a wheel chair or you don’t have a big neon “DISABLED” sign hovering over your head.
  4. People think you are acting precious or being a bit of a diva because you’re asking for special attention or more frequent attention compared to everyone else, who’s just ‘getting on with it’.
  5. People think you are being an ignorant arsehole. Yes, I just love loosing the plot of our conversation about your baby who’s just started walking (and who’s name I can’t remember) or literally bumping into you on the street when we’re the only two people on the pavement or over compensating and giving you a ludicrously wide birth (hilarious to watch apparently!) or struggling to join in a group conversation and then blurting out what I want to say when it’s not even relevant anymore.
  6. That you are just plain stoopid.

Talk About Your Condition/Disability! Tell people!

Don’t stop strangers in the street and regale them with details of your latest Dr’s visit like, but do get a dialogue going with people you are going to be spending a lot of time with.

In hindsight I would have found it so much easier in every college, every job and every new circle of friends I’ve made, if I’d have just had ‘the talk’ with them. Alright, back then I had no understanding of why I struggled so much but I knew which things I struggled with.

 

Yeah, I know it shouldn’t be up to the disabled person to set the standard and to feel like they have to justify their actions but explaining them might possibly make it easier for said person in the long term. Your disability shouldn’t be something you are ashamed of either.

Why Covering For Your Disability Won’t Always Work

I did an Office Administrator apprenticeship in my 20’s where I wasn’t much older than most of my colleagues kids. They noticed straight away that I wasn’t coping very well but falleveryone was lovely and they all really helped me. After a year the apprenticeship was over and I had to find a new job.

I fell in with a group of people that had started a month earlier and had bonded with each other quickly. After 6 months I still felt a little like I was ‘the new girl settling in’ and had an uneasy feeling I hadn’t meshed quite right with them. I automatically assumed it was down to my wonky social skills. Other people in the office had previously dropped subtle hints to me about ‘knowing who your friends are’ etc. but subtlety isn’t my strong point and anyway, these people were doing just enough to con me into thinking they genuinely were my friends. I think that they knew I was (intentionally) hiding something from them and something i_m_fine__by_halliova-d5jex0lwasn’t quite right, so they all thought it gave them the right to treat me like shit. I ended up leaving because of it, with no other prospect of employment on the horizon but that’s not the point. They were a bunch of knobs, obviously, but that’s not the point either….

Accept It And Own It!

The point is, I was trying to hide my condition in plane sight and failing miserably. One minute I was chatting a mile a minute and the next I was being evasive and not making eye contact. Fine not fine. Basically I was really embarrassed by my ‘weirdness’ and was bright enough to quickly be able to come up with a vaguely plausible excuse for every symptom, while t the same time feeling really rather stupid. We need to remember we aren’t wrong or broken, we just function differently. We shouldn’t be making excuses for being who we are or acting the way that we do regarding being different.Every single person on the planet has things they are good at and things they are crap at. The only difference with us is that we are more determined to give the things we know we’ll struggle with, a try in the first place.

If people notice you are acting or doing something that’s a little different don’t try to hide it,uniqueness-quotes or make excuses for it. People will see through you and wonder what on earth is going on. If you continue to behave like that, it’s pretty obvious people are going to get tired or even annoyed. It’s not fair I know but there you go. Either find a quiet time to have a casual chat or wait until someone brings it up and then just be open and honest with them about it.

 

Even if you only make your lecturer/manager aware so that they can make ‘reasonable adjustments’ to help you cope. For instance, amassing angrier and angrier warnings from your boss for being late, when you struggle with time management and planning might actually be avoidable! Maybe you could start and finish slightly earlier/later to avoid rush hour?

What To Say About Your Disability or Condition

Maybe talk about specific things you struggle with, if you’ve been diagnosed with a certain thing or the reason why that condition effects you (if you are lucky enough to know) or how long you’ve had it. Go into as much or as little detail as you want but try to keep your sense of humour. At the very least it gives people a better understanding of you, and why shouldn’t they!

Admit If You Need Help WithA Task

I know with invisible disabilities it’s possible a person can keep on scraping by and covering up their mistakes or their needs but that knotted stomach feeling of dread can lead to anxiety and depression. It’s much better to ask for help or clearer guidance from your teacher/lecturer/manager/colleagues/friends from the start, even if that help is just a little more patience or understanding from them. Absolutely everyone needs help sometimes so if you are really really struggling with a task don’t feel embarrassed to ask for some!

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Being more open about it might make you feel vulnerable at first but as I’ve learned, hiding it can make you just as vulnerable. They are some awesome people out there with more empathy and understanding than you might first realise.

The more people talk about disabilities, the more people get to hear about them and gain a greater understanding of them :o)

Chrissie xx

15 Relatable Ways Brain Fog Affects People

‘Brain fog’ or ‘Cog fog’ is a neurological condition where mental fogginess gets in the way of people’s cognitive skills; making it hard for them to think straight and recall and process information. It can occur in a lot of disabilities and conditions such as Lupus, MS, Fibromyalgia Hypermobilty Syndromes, Dysautonamia, chronic fatigue, menopause, pregnancy and anxiety.

  1. Recalling words. “You know that thing…where you…ah?
  2. Misplacing objects. Either loosing them or feeling like there’s a poltergeist in the house because an object has appeared in a totally random place (where you absent-mindedly left it). Spatula in the washing machine and socks in the sink?
  3. No sense of time passing or your place in time. Not being able to keep track of what time or date or even day it is, throughout the day.
  4. Trying to catch fog. Trying to express something that you feel passionate about but you can’t seem to pin down the important points or get them in order in your mind before they drift away again.
  5. Visual processing. Starring right at the damn product on the shelf and still not being able to recognise and find it.
  6. Auditory processing and recall. By the time the person you are talking to has finished their sentence you’ve forgot the start of it. For instance – you know that you agree with them but now are clueless as to what you are agreeing with.
  7. Information sequencing for basic math, writing and logic. You would automatically know this this normally but today you can’t make sense of what the logical order is.
  8. General sensory processing. Everything is too loud or too tight or too bright or you can’t sense/judge things enough like temperature, spacial awareness, speed, distance. Scary when trying to cross a noisy, busy road.
  9. Feeling spaced-out and oddly detached. Not quite being able to comprehend the seriousness of situations or people’s problems. Coming across as slow to react, flippant or even uncaring.
  10. Concentration and sequencing. Managing to loose your own point mid-sentence by getting easily distracted “I simply will not put up with…Ooh shiny!
  11. Struggling to make simple decisions or feeling rather apathetic to things and just saying “You choose, I’m good either way.”
  12. Literally going blank and ‘phasing out.’ Nope, I have no idea where I went there for a moment, either.
  13. Learning difficulties. Having to do something repeatedly and within a fairly short time frame to be able to learn it or get into the habit of doing it.
  14. Basic auditory processing. When you are deep in thought or involved in a task and someone talks to you, because you are not expecting to hear something, you can’t process what it was, only that you heard them say something. So they say it louder -_-
  15. Recalling specific details. You are having a great conversation and taking in everything that is being said, you feel today is a brain fog free day. The next day when relating the conversation to some else “They went on holiday to…somewhere and they went with…someone and it was last week or last month, ah crap, never mind.”

I know people with Dyspraxia, Autism, ADD, ADHD (or a combination of them), will have struggled with some of the above naturally, since childhood – I know I have – but those brain fog moments make these things even more difficult, which is why Brain Fog has earned a whole list of it’s own ;o)

Which do you relate to? Let me know in the comments.

Chrissie

 

Aptonia Soft Wrist Brace from Decathlon

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As I’m sure a lot of you know by now, I have Joint Hypermobilty Syndrome so I end up over extending and hurting my wrists on a daily basis. This Aptonia Soft Wrist Brace from Decathlon was recommended by someone in the fantastic Hypermobilty UK Support Group on Facebook. It’s adjustable so it fits my skinny wristicles and oddly square mitts. I had to cut the width of the thumb strap down, which was really easy and it hasn’t frayed.

  • Comfortable
  • Easily adjustable
  • Wipe-downable
  • Can be worn loosely for bed
  • Can be tightened to provide enough support to lift pans and chopping boards, do household chores or light sport (I’d get the stronger support for squash or tennis though, trust me)
  • Looks pretty cool

Rating ❤ ❤ ❤ ❤

Chrissie

My Weird & Apparently Perplexing Disabilities & Conditions

Theres a lot of information to convey here so to stop you getting bored and to stop me getting totally lost in what I’m saying, I’m just going to list them, tell you when I first noticed them, when and who I tried to get help from and whats being done about them as they all kinda weirdly link up.

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Hyper-Thyroidism

In my early 20’s walking home from work ever night, I’d tell myself ‘I just need to make it to the next lamp post’ over and over until I got to my front door, I’d be that exhausted. It wasn’t until one day in work when I was slurring my speech, couldn’t walk or think straight that I (and my lovely colleges) got worried. I booked an appointment with my GP and was running late, he phoned my landline and when my Mum answered he began to question her about me possibly ‘burning the candle at both ends and partying, like these young one’s do.’ My Mum was gobsmacked and told him a) I was an adult and therefore he was breaking patient/Dr confidentiality b) I was a sensible young woman and if that if partying was the reason for the exhaustion I could have figured that out for myself and c) he was being very assuming, patronising and arrogant and the least you expect of your Dr is for them to believe you when you are clearly ill! He did a simple blood test and confirmed I had an under active Thyroid. Sadly, that was the simplest and quickest diagnosis from then on.

Massively Swollen Puffy Ankles and Feet

Aged 12 I went to my GP one summer and showed him my giant elephant ankles and feet. He immediately told me that I was obviously having way too much salt. I told him my parents brought me up to eat moderately healthily and I didn’t add extra salt to my meals and never ate ready meals. He told me to reduce my salt intake ‘drastically’. Years later in my early 30’s I mentioned to my mate that “My body just doesn’t sweat” so when I’ve been walking in the sun for around 40 minutes I feel nauseous, have a headache and feel really quite feel faint. He immediately looked concerned and asked if I was getting enough salt as you need a certain amount for your body to start sweating and to cool down so you don’t get heat stroke, which I’d been getting! Also the body needs a balance of salt, sugar and water (those electrolytes in those isotonic drinks everyone buys these days) in order for the body to function properly. As soon as I increased my salt intake I stopped getting the terrible swollen ankles and feet which had dictated my miserable fashion choices every summer for the past 20 years and I had lots more energy as I wasn’t dragging around pounds in water weight!

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Food Intolerance 

By the time I was in my mid 20’s I figured something must be wrong as was I tall and slim, yet I had a very distended round belly, like two thirds of a football. I looked four months preggers! I went to see a nurse and was told “Be glad your tall and slim in most other places, we can’t all look like a model.” and sharply asked “Is there anything else or is that ALL you came to see me for?”

A few years later I figured out it must be a food intolerance from several articles I’d been noticing in various magazines and went to see a GP. She agreed and told me to do a food elimination diet. When I asked for more information she looked at me like I was daft and said “You cut out most foods and then reintroduce them slowly. Anything else you need to see me about or is that it?”

It turns out after paying privately for a blood test along with a thick info booklet and food planner, that I’m intolerant to wheat and gluten and dairy and eggs and that symptoms aren’t always evident for up to four days. There is no way I’d have been able to figure out all of my intolerance’s and kept up a healthy diet on my own! Symptoms include bloating, facial redness, water retention especially in the face and stomach, skin itching, temperature fluctuations, constant thirst, headaches and stomach pains, sneezing, blocked sinuses/excess snot (sorry!) and fatigue. I’d had all of these all of my life (when I was a kid it was like I had the flu constantly. If I made it to school for four days in a row, it was miracle!) but the symptoms were never connected to food intolerance or even to each other.

Dyspraxia

Had this all of my life, first noticed by my parents and primary school teachers but not by my Dr who I’d been under since I was born! Teachers asked my parents, my parents asked my teachers, both were utterly baffled at my way of thinking and doing things. When I was 28 I read an interview with the singer Florence Welch who talked about Dyspraxia and it was an utter revelation!

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I asked a GP to get help with this aged 30. He was sympathetic to the amount of stuff I’ve always struggled with and amazed I hadn’t been diagnosed with disability as a teenager or at college. He astonishingly referred my to a Neurologist. These referrals are like gold dust! I then got passed between three of them because non of them dealt with Dyspraxia and didn’t really care or know who did. Five years later, yes FIVE, I’ve gotten a referral to a mental health team with maybe a years wait list to then get referred to some kind of Physiologist, hopefully the right kind.

Sensory Processing Disorder (SPD when your brain over or under processes stimuli)

A large amount of people with Dyspraxia also have SPD. I along with everyone else just thought that I have very particular quirks and like things just so, however as a kid I’d get really upset easily if I was too cold, too hot, the food ‘felt funny’ in my mouth, clothes were too scratchy or it was too windy etc. I have more quirks these days but get less annoyed/upset because I realise it’s just my sensory shit and I can find ways around it or ways to cope with it. Unless things I’ve been expecting and looking forward to something and then it suddenly changes, which really really upsets me as I feel sort of lost and bewildered. Lack of ability to adapt to new things is very common for people with autistic spectrum disorders. SPD and Dyspraxia kind of run parallel and overlap a lot with spectrum disorders you see so some people who have Autism/Asperger’s also have Dyspraxia.

I’m so glad I found blogs written by Dyspraxic people mentioning SPD because I then found an amazing Facebook group for SPD. We aren’t as unique and weird as we were made to feel at all and actually have masses of sensory quirks in common.

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I asked my Neuro (who denied this condition even existed and said ‘It’s just one of those things, your just being too sensitive’) to refer me to an Occupational Therapist (OT) for help with my SPD and Dyspraxia. She turned out to be clueless as to the term SPD, didn’t seem to understand what proprioception was (the feeling of where the outside of your body is compared to the air around it) or interpception (your bodies navigation system and steering and the way it interprets your senses. The ability to sense the position and location and orientation and movement of the body and its parts. Responsiveness to external stimuli; the faculty of sensation) because she kept just describing me as ‘clumsy’ which is ridiculously simplifying the problem and ignoring so many things which can be done to help with all of that, I later learned. Her advice with my severe memory problems (to the point I feel like I’ve got early onset Alzheimers a lot of the time) and wonky concentration was to print off a child’s work sheet from the internet suggesting I group things together that I’m trying to remember. Gee thanks, I could not have done myself – oh wait….

Demyelination (when the Myelin sheath which protects your nerves from damage is attacked by your immune system)

This was discovered by mistake when I had an MRI looking for reasons other than Dyspraxia why I might have had Dyspraxia all of my life as my Nuero thought there must be something else causing it. He happened to discover Demyelination which I can’t have had all of my life because it usually develops over time and from the age of around 20. It could be MS it could be something else. Whatever it is, my immune system is basically attacking healthy cells thinking they are invaders, causing them to wear and then to get damaged and then scar so the nerve signals get weaker or disrupted/distorted.

Hypermobilty – when joints are too flexible, which can lead to joint and muscle pain, joint stiffness and accidents and Arthritis, the auto-immune kind oddly enough!

A large majority of Dyspraxic’s are hypermobile. I’ve been having problems with my joints since I was 14 when one of my knees sublaxed, meaning the joint almost comes out of place but manages to just hang in there and in my case, rock back into place again. I was sent for an X-ray and told I was fine.

This happened three more times by the time I was 20 and it had gotten to the point were I was no longer able to run without my knees suddenly collapsing and I was in mild pain all winter. I complained to my rather perplexed GP and I got sent for another X-ray and again told I was fine and ‘it’s just one of those things’.

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So at the age of 33 I asked for a referral from my Neurologist (utterly incompetent as a Neurologist but he’d do any referral, just to get rid of me I think because I had ‘so many unusual difficulties’) to a Physiotherapist. She was a good laugh and patient with me but couldn’t understand why certain exercises hurt my joints, she suggested I wasn’t doing it correctly, then when she realised I was she just looked confused. Again I got the usual ‘just one of those things’ shrugs.

I asked for another referral to a different Physio “Someone who understands a lot about hypermobilty because my last Physio seemed to be utterly unaware of the condition/disabilty somehow.” A few days before my appointment I learned from the Physio’s secretary that my Neurologist had referred me for weaknesses in my forearms and wrists, not mentioning hypermobilty at all. Utterly irresponsible! If the secretary hadn’t have checked (after remembering my previous request) I’d have possibly seen a second oblivious Physio who, again, could have done more harm to me than good.

So this new Physio Dave was amazing, he not only understood Hypermobilty completely he was also familiar with Dyspraxia and two other related disabilities, one of which we both agreed I most likely have. He gave me brilliant (and realistic) daily exercises to improve my balance, co-ordination, control, strength and stamina. He’s referred me to a Rheumatologist who should be able to tell if I have Ehlers Danlos Syndrome and what type.

My GP (who was surprisingly familiar with EDS) asked me why I wanted the referral “because there’s no cure anyway.” I actually had to explain that if I’d have had a diagnosis years earlier I could have gotten help with so many health problems (which weren’t taken seriously) over my life, which have needlessly gotten worse and done damage so surely it’s better late than never?! Plus, EDS effects the heart so surely that should be monitored at least!

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Ehlers Danlos Syndrome

A certain amount of people who are hypermobile have EDS. It’s simplest definition is faulty collagen, meaning it can be dense in some areas and sparse in others like Swiss cheese, so totally uneven and far too stretchy – Jim Carey’s face has nothing on me! This can effect connective tissue (hence the hypermobilty), your heart valves (mine were faulty when I was born), your digestive system (it’s common to have intolerance’s to wheat and dairy and for it be slow in general, which I have), to have an underactive Thyroid, teeth and bone weakness (my teeth are terribly weak and wear down easily), visible small blood vessels like thread veins and bulging blood vessels (both of which I have on my legs – sexy), uneven collagen (my cheeks are like a relief map of a tiny hilly area, my gums are so fibrous that general anaesthetic is useless, my boobs are way too heavy for their size and I had terrible stretch marks by the time I was 14, I have some scars which are sooo soft as are the palms of my hands and feet incidentally but other scars which are way over the top compared to the initial damage), difficulty absorbing and using certain vitamins (I can’t absorb Vit B12 and need injections instead). There are literally no other symptoms left, I have them all. If these were Pokemon I’d be well chuffed.

Four things to add context….

Each referral to a new ‘specialist’ (I use this term loosely these days) takes between 3 and 12 months of waiting on a wait list. So nothing happens quickly.

Fatigue is increadibly common with people who have Dyspraxia and Hypermobilty because we have to work so hard just to do the simplest of things and my Demyelination also causes terrible fatigue especially in the heat. Oddly this has never been acknowledged by any of my GP’s a) because my Nuerologist hasn’t bothered informing them and b) they all consider it to be just a side effect that’s not serious, even though extreme fatigue (to the point where I sometimes have to be helped out of bed in the pm and with getting dressed) is the most debilitating thing I struggle with, at some point every single day and the reason I can’t work.

After asking a wide range of people in various forums and reading a lot on this subject, it would seem that a lot of people with hypermobilty, dyspraxia, EDS, Asperger’s and Autism seem to be genetically prone to food intolerance. Food intolerance is now thought to be auto-immune related (as our immune system reacts largely to the health of our gut). It’s fascinating (but rather logical) that what we digest can effect the auto-imune system, which in turn can effect the brain, which in turn goes full circle and has physical effects again!

I’ve changed Neurologists. My new one did lots of tests, said he was going to send me for more and actually seemed to understand the terms and disabilities I was referring to – hurrah! Shit, I forgot to ask him to inform my GP’s that my extreme fatigue is very real and why. Looks like I’ve got a phone call to make.

It’s utterly exhausting researching my conditions and deciding on which referrals I need and caring for myself while I wait.

Zzzzzz

Chrissie