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

 

Athleisure Style Joggers from Hunkemoller

When you spend a lot of time chilling in doors, you want to wear something cozy but you don’t want to greet people when wearing washed out cartoon PJ’s from a decade ago. You know you need a serious (grown) up-grade. This is where Hunkemoller comes in handy as they offer pretty and practical pyjamas and lounge-wear.

How cute is this box ^_^

Look at my gorgeous new joggers! With a silky tie at the waste, sparkly sporty stripes down the gently tapered legs and a rich burgundy colour, I invited people around just to show them off – not kidding. They are also warm and pretty enough to go outside in, if you don’t have the time (or simply can’t be bothered, let’s be honest) to get changed.

They are made of a velour type material which I love because a) They are bunny soft b) They have some substance about them so they don’t end up getting baggy knees after a day of wear and c) They look sumptuous, especially in burgundy.

These are a ‘Small’ and although I agree with that as far as the waste band goes, I think they could have been a little more fitted around the top and the back. I’m glad I have slightly thick thighs and a lot of junk in the ole’ trunk, put it that way! To be fair, they are one of the few tapered pants I can wear that don’t feel like they are cutting off the circulation in my ankles and the length is perfect for my 5’8″ height. I’d say overall Hunkemoller sizing is generous.

If you could treat yourself to a lounge-wear/pyjama upgrade for the winter, what item would you choose?

Chrissie

Care Co – 4 Week Resistance Exercise Plan

Pretty much every Physio I’ve seen has taken into account my little noodle arms, my easily misplaced balance and chronic fatigue and suggested I exercise with a resistance band. So when Care Co – who sell discount mobility aids – asked me to try out an item, that’s what I chose.

What is it?

The Exercise Band (£10) helps you to improve your muscles, fitness, control and co-ordination. You use it’s resistance and your own existing strength to build up more strength. This one smells strongly of latex and is a lovely teal colour. It has numbered positions on it to show you where to place your hands so you can increase the difficulty as you get past the first month.

How and Why?

The booklet contains a four week plan of six different exercises per week. It describes them with easy to follow instructions and illustrations (I’m not great at following instructions thanks to be Dyspraxic but I found this really simple) and also information on diet, general exercise tips and mental health tips, which I all found useful.

I have Hypermobity Syndrome meaning my soft tissue, muscles and joints are too stretchy, flexible and weak so I’d have really preferred the band had a loop on each end to help me hold it better (the booklet does mention consulting your GP if you have joint problems, right at the start). It does have enough room to wrap it around your hands though, if you don’t mind them getting squished, which I didn’t. However, I did need to wear wrist supports when using this.

I really enjoyed working my way through this plan and, I’m not going to lie, the novelty of this weird rubber band. It felt more like I was having fun rather than exercising but I also loved how structured the plan was as I have zero attention span and sporadic motivation, at best.

The Shoulder Press totally defeated me however, as I just didn’t have the strength in weak two or three or four to stretch the band over my head. I actually lost my grip at one point and smacked myself in the jaw! Hardly the first time that I’ve done this over the years btw. My Dad tried it, who stays fairly fit for a bloke in his Seventies and he got it to his jaw, the same as me. My bloke tried it who’s 6’2″ and 16 stone and succeeded immediately. So it is possible!

Can a giant rubber band really make a difference?

I didn’t have the energy to use this everyday but it certainly encouraged me to use it when I did have some. I’ve gotten better at the exercises with practice and my balance and co-ordination have noticeably improved – a big deal for someone with Hypermobilty Syndrome and Dyspraxia (which also effects co-ordination). I also noticed that in just four weeks my muscles adapted to the new kinds of movements.

My lower back was not happy at first but I realised it was because it was already incredibly tense from holding up my slightly floppy spine all day. A massage relaxed the muscles and I’d say the exercises will continue to make my core stronger in the future.

The band immediately highlights your strengths and weaknesses so, if like me, you have chronic fatigue and have to pace your workouts, you could just focus more on the areas that need improvement and reduce the amount you do in just four weeks with the areas that don’t need it as much.

Conclusion

Overall I found the Care Co exercise band to be fun, incredibly versatile, confidence building, easily transportable and storable but more importantly, something that gives me a reason to exercise, rather than an excuse not to.

Rating 4/5

Chrissie

10 Reasons Why I Love My Wonky Body

I’m going off when my body and energy levels are on good form because I’m trying to be nice to myself these days ^_^

  1. It’s got a lot of natural rhythm which makes it easier to dance without me really loving-yourselfover-thinking it.
  2. My legs are long and surprisingly strong, through them having to correct my balance constantly when I stand and walk. The Amazons have nothing on me lol
  3. I have a really fast metabolism which is great for never having to worry about getting overweight (just hangry) and it means I can totally justify ordering sides with my main meal.
  4. Being tall is pretty handy to not feel claustrophobic in a crowd and to see where I’m meant to going if it’s somewhere new.
  5. My immune system may attack me but cold and flu viruses beware, it’s effectively coming for you too!
  6. I tan quickly which is awesome after a grey winter – I mean my skin, not the weather.
  7. I have weirdly good balance if I really concentrate.
  8. Being hypermobile is actually really handy when trying to reach past a load of clutter or when the lid off something has rolled under furniture.
  9. I’ve gotten some interesting scars over the years but I also heal surprisingly quickly.
  10. I’m going to be inhabiting my body for the rest of my life so I might as well appreciate it!

Chrissie

Note: Incase you wondering, the conditions I have are Demyelination (similar to but not actually MS), Dyspraxia, Aspergers, Sensory Processing Disorder (relating to the latter three conditions), allergies, PCOS (suspected by GP), Hyperthyroidism, Hypermobilty Syndrome (including food intolerance), which can all have the symptoms of chronic fatigue/brain fog in common.

My Lifestyle Lately – May 2017


Obviously as I’m Mancunian there has been one big event for me which has separated May from any month surrounding it. The terrorist attack. I have so many things to say about this, how upset and angry I am, the social and religious politics, the possible ramifications and what actions could be taken now, but I’m emotionally exhausted by it so I won’t. What I will say is that the resilient and empathetic spirit of my fellow Mancs and the support from people around the world has been amazing. I’m actually writing this to the sound of The Courteeners concert drifting over from Old Trafford Cricket ground and they are doing a cover of Oasis’s Don’t Look Back In Anger, with all of crowd singing their hearts out. Aw shit, I’m filling up now. I really do love Manchester.

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Food & Drink

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Have you been drinking lots of water but still feel more thirsty, brain foggy or fatigued because of the heat? I’d give this a go. It tastes like blue ice pops (you can get other flavours like strawberry and tropical) and because of the aloe (i.e electrolyte) content, it hydrates better because our bodies use it more efficiently, rather than just rushing it through our system like it would with water.

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As the weather has been so warm I’ve only been able to manage very light meals. I’ve discovered that Original Sheese spread can be broken up and used as a creamy feta cheese alternative.

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I’m starting to see why people mistake me for a vegan but it’s actually my wonky body that can’t cope with dairy and egg white for gastro and auto-imune reasons. I miss having omelettes though so I was pleased to come across this. If you use it with a small amount of say, mushrooms and are sparing with the cooking oil and leave it alone to cook, rather than harassing it with the spatula, this comes out brilliantly! Unfortunately I was too hungry to take a photo of my perfect first time attempt. Then I fracked it up something terrible the second time – doh!

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At the begging of the month it was my birthday so me and the bloke hopped on a bus and then a tram and went to our fave Indian restaurant of all time, Lilly’s in Ashton-Under-Lyne. You can read my review of Lilly’s here. We also got a lot of takeaway which lasted us for around three days!

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I’ve been making cold mocha’s every evening so there is one waiting for me as soon as I get up. I actually take it back to bed with me. 1 heaped tspn dark cocoa powder (mixed with a little cold water), 1 heaped tspn instant coffee, 2 rounded tspn sugar, 1 tspn vanilla essence, a little hot water to mix, fill up beaker with unsweetened almond milk. Chill.

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I compiled a dairy and gluten free shopping list and reviewed each item to make it easier for people who are feeling a bit overwhelmed with this kind of dietary transition.

Fashion & Style 

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I put this Romwe wish list together right at the start of the month and managed to resist buying anything for myself. op

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It’s funny that in the same month that I’ve stopped approaching any brands, two brands have asked me to collaborate with them on Outfit Of The Day outfit reviews. However, the items (around six of them) are taking ages to arrive so those will be live on the blog next month. I’ve also ordered stuff from EMP, yet again and opted for everything to arrive together but apparently it’s not all available (even though they weren’t ‘Out of Stock’) so that hasn’t arrived either. Only just realised last week that my fave jumper works really well with my fave skirt, both of which I’ve had for ages, ha!

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Even though I don’t rent a place I can call my own, I still love compiling homeware posts every now and then like this In The Tropics one.

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I made a Stylish and Sensible Summer Shoes post because I like alteration and not falling over when I walk in summer.

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No, not me going for a job as a waitress at a sports bar but me melting in this fracking horrendous heat. My feet still get cold in the evening though due to circulation issues, hence the Uggs. I actually love this basic look but haven’t been brave (crazy?) enough to leave the house in it yet. I’m managing to keep weight on these days but my muscles tone is disappearing fast so I’m getting a cross trainer for less fatigued days (I’m being very optimistic here) as it will give me a whole body work out but the machine gathers it’s own momentum quickly so you can put as much or as little effort into it as you want.

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I’m a firm believer in wearing what you want no matter what size or firmness you are so I gathered together the 15 best shorts. There is a style here to suit everyone. I’ve bought the denim scalloped hem one’s from H&M and wear them with very sheer black tights and they look great! I keep meaning to get some black fishnet tights to wear with them and with my ripped jeans for a grungy feel (like I used to in the 90’s) but I keep forgetting.

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I would stagger around blindly in summer if it weren’t for my sunglasses. Some of these are off-the-shelf but some are designer so they should be widely available in options if you need prescription lenses like I do. I suggest getting polarised lenses to decrease glare if you are light sensitive.

Random Stuff

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As a fellow geek I decided to join in with the The Geeky Girl Tag after I enjoyed reading other bloggers answers.

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I wrote this post as I wish my parents would have come across something like this when I was a kid as they and they and my paediatrician and my teachers where clueless as to why I was struggling so much and therefor how they could help me to help myself. Actually my Paediatrician barley noticed. *giant face palm* As a child I was very aware that I was different. Things didn’t come easily to me, yet the other kids magically seemed to instantly know what to do and how to do it, without constant mishaps. As a teen I realised I had a rather different thought processes going compared to my mates as well a lot of the time. Like what is the point of over analysing the way that cute guy said “Hi” to you for hours. Just be glad he said it and maybe even have an actual conversation next time. Reading something like this would have made me feel a lot less like an alien from another planet.

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I made a Funko Pop! of myself, which I’m pleased with.

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May has been Ehlers Danlos Syndrome awareness day, which is so important as it’s one of the most misunderstood and miss represented genetic disorders out there. I’ve been given a verbal diagnosis of EDS but several Rheumatologists are still refusing to put it in writing on my medical records. Preferring instead to say instead “Christine is having it that she has EDS” er, I’m ‘having it’ because I was TOLD that I have it FFS!?!? It’s important to mention that all of this stubborn ignorance and arrogance from specialists (and I do use that term lightly) makes dealing with EDS so much worse as it’s a constant battle with people who’s actual job it is to know better. It really does make us emotionally exhausted and just adds to all the other shit we have to deal with. I’m so lucky to have received support from an amazing online community of fellow zebra’s here, otherwise I would have been questioning my own sanity.

Beauty and Skincare

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I reviewed e.l.f. Studio Tone Correcting Powder and Studio Flawless Foundation and was impressed with both products. In fact their foundation was the best I have ever used!

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I arranged my lipsticks in colour order and had a general makeup clear out. I just kept on buying the same 3-4 shades of lippy over and over again, having forgotten that I already own them. I’ve thrown out any shade that needs mixing with another to create the colour I bought it for in the first place and any lipsticks which are either too drying or slide off after ten minutes. Same with foundations as I don’t have the time, storage space or patience to have to mix several together to get the right colour or consistency. No more making-do with crappy makeup.

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I reviewed Soap & Glory Perfect Ten Shadow Palette but wasn’t that impressed with it for some unexpected reasons.

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I finally found a use for my old metal heart cage. Storage for all of my mini’s and free samples.

Well that was quite a catch up! Let me know if there was anything you found interesting.

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