Breakfast, Dinner or Tea?

I only got out of bed just over two and a half hours ago so who knows lol

Corn thins with dairy free spread, cucumber, sun-dried tomato (out of a jar, not those plastic unrecyclable tubs, cheaper too) with oregano, artichoke hearts (again out of a jar) and jalape√Īos. I did eat a giant handful of salted, roasted cashews before this so protein isn’t an issue, for anyone wondering.

ūüĖ§‚ú®Chrissie‚ú®ūüĖ§

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‚̧

 

10 Helpful Things Having Chronic Illness & Invisible Disabilities Have Taught Me About Life

  1. You get to know who your friends really are. When, in some people’s minds, it’s just easier to not hang out with you, it makes you value the ones who adapt and stick around so much more.
  2. Accepting your idea of fun is just as valid as everyone else’s.¬†You should never be made to feel like you are supposed to be upbeat and super fun because you are hanging out with friends. If you just aren’t feeling it then it’s totally fine to P1000036 (1)say “Y’know what, I’d much prefer to just watch TV and chill with a pizza.”
  3. It’s so much easier to do tasks when you break it down into tiny parts. I tell myself ‘I’ll do this little bit for now….Oh well I might as well carry on and do a little more seeing as I’ve started.’ Suddenly the task that had turned into a massive mountain in my head (because I’d been putting it off) suddenly seems realistically achievable.
  4. You only have so many spoons. Yeah, I don’t get why ‘spoons’ have any relevance to chronic illness, even as a metaphor either. So I use the term ‘batteries’ instead. As a chronically ill person with two hidden disabilities I start of with less batteries to begin with and seem to use them up much faster as well. I’ve noticed sometimes that cooking the food uses up all of the energy that I’d be getting from eating the food so I’m actually in an energy deficit afterward. These days I stop for a quick rest in between doing tasks (sometimes in the middle of them) or I will put my pride aside and politely ask someone if they can help me out as I’m “low on batteries.” It’s a simple statement that people instantly understand and it makes so much difference to how much those batteries last.
  5. Know your worth. ¬†I can’t tell you how many times I’ve been told things like “No wonder you’re tired if you didn’t go to bed until 12.00am!” and other flippant comments which utterly disregard how difficult and complicated the symptoms of chronic illness and disabilities are to cope with. I also get things like “Well no one else seems to mind that….” On these occasions I always breezily ask “Oh, does everyone else have the same sensory processing disorder/chronic fatigue/dyspraxia [insert relevant illness or condition] in exactly the same way as I do?” On days where I’m particularly brain fogged I’ve had people say “Don’t say things like that, it makes you sound stupid” when actually ‘just’ stringing a coherant sentence together is an epic achievement for me and I’m hardly trying to deliver a TED talk am I! Never let people treat you as if your illness/condition/disability is your fault or an annoying inconvenience.
  6. Getting dressed and out of your PJ’s changes more than just your clothes. It might use up all of the energy you have for quite a while but it will make you feel better emotionally in the long run. It makes you feel more like ‘you’ as you actually look more like you again. It can also make you feel less bound to being indoors and can encourage you to go outside, even just for a short while. I’ve bought lots of ‘chilling clothes’ which are cozy, easy to put on and look good together…Unless my brain fog means I put them on inside out!
  7. You will probably say or do something pretty goofy in public, either because of fatigue, brain fog, pain, your body going rogue and not behaving or all of the above. Don’t beat yourself up about it and try, if you can, to laugh about it. Adjusting your perspective can mean the difference between being mortified or having a laugh with a stranger.
  8. When you are having a good day or slightly better day, my gosh do you appreciate that day! That is all.
  9. It’s the little things that count so focus on what you can do. We had to cancel something we were really looking forward to last summer as the heat was so debilitating for me. Over that week we had a film night with my fave cheesy 80’s films and another with new superhero films and lots of junk food, we took the time to cook nice meals (I peeled the veg, that totally counts), went out to our favourite restaurant, met up with friends in town for a few drinks (and air conditioning), only for a few hours but still great to catch up. We also did a bit of shopping on one cooler evening and treated each other to lovely things. I couldn’t always leave the house and didn’t get up until 4.00pm some days but we really made the most of what I was able to do and it meant so much.
  10. Having a chronic illness, disorder and/or disability does not mean you are less-than other people or broken, it means you have to use all of your resources, will power and patience to do things, everyday, that everyone else takes for granted. You rock!

Bonus lesson

I’ve learned to be much more patient when people ask me questions about my conditions, even if they’ve asked them several times before. I’d much rather someone ask a seemingly silly question (as long as its an earnest one), rather than them making an incorrect assumption because it means they are making the effort to understand.

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‚̧

How I Got Past My Motivation Problems and Other Things

This was the problem…

I was never as bad as a ‘functioning alcoholic’. No, I was a social drinker. When you are around someone every night, then that’s being social right? When you’ve suddenly drunk three bottles (Large European size) and the effect has suddenly and surprisingly worn off too quickly, theres no harm in buying another if you are only having a third of it, is there? Then of course the next night you buy the usual three and happily find that you have two thirds of the other bottle left ofter from last night as well – bonus! “Oh no, I better not eat that or I won’t get drunk. I better start drinking first.”

That’s how it started off as fun and escalated into something quite the opposite.

Luckily, my heightened emotions and a rather volatile relationship and some very good – if rather biased advice, halted me in my tracks before I developed a real habit.

The underlying issues…

Without going into details, with my Dyspraxia and someone else’s issues combined Screen Shot 2016-05-21 at 19.41.39there could often be mood swings and miss-commnuications and very high emotion when we were together. Sometimes I was using the alcohol as an emotional crutch which was actually resulting in an emotional car crash. I wasn’t able to handle the situation well when I was drunk. I should have been capable of doing so without ugly crying for hours and feeling gutted and angry in equal measure. I should have been able to walk away and calm down, rather than feeling like the world was falling down around me.

As it happened I was also going through a hard time feeling like I’d kinda lost who I was. My 35 birthday was approaching and I didn’t feel young anymore but I wasn’t middle aged, I was just me but who the hell was that!? When someone would ask me what I’d been doing lately my answer would be “We both went” or “We all went”, never “I went” because I was never motivated enough to go out and do stuff alone. It wasn’t any kind of social anxiety, more that I kept finding I couldn’t be arsed and it was just easier not to.

I tricked myself into thinking I was managing to keep my head above water, when in reality all I was doing was treading water until I was emotionally exhausted and had nothing left.

How I got my shit together…

I  started taking more responsibility for my actions. I deliberately focused on adjusting Screen Shot 2016-05-21 at 19.27.02my attitude and letting the little things go. I realised we all have to accommodate other people’s moods whilst realising they aren’t always a response to our own behaviour. Essentially it’s not always our fault if someone is suddenly annoyed or sulky. I also realised that we don’t have to react to every negative with which we are presented and can choose to remain calm until we have decided exactly how to deal with the situation. This can be a lot more beneficial than an initial emotional gut reaction.

Practically speaking…

I bought a planner to take some pressure off having to think about everything that was going on in my life. It included a diary and a year planner and I created a To Do List and also wrote down all of my medical stuff. I bought a bunch of new clothes that were Screen Shot 2016-05-21 at 19.45.38more like the ‘old’ me just a tad bigger and started gently exercising again. I started making smoothies (a practical task that I was dreading) and it turns out I’m a natural at knowing which ingredients work with each other. I started going out to town alone again, even when it was busy and people were impatient with me. I started regularly getting more involved with Twitter chats. I started playing music that I loved, rather than just listening to whatever anyone else chose to put on. I also made an effort with my appearance Every. Single. Day. It made such a difference to my confidence and outlook. I was no longer thinking of ‘reasons’ not to go out (even to the local shops) because I looked a mess, or was tired, or it wasn’t totally necessary.

So now I’m on the other side…

It’s been two months since I’ve had a drink and it feels more like six! I did it incredibly begrudgingly at first and made all sorts of excuse as to why a myriad of allowances should be made. I fully agreed with it eventually when I realised I had no idea how it had been since I’d spent an evening sober and knew things HAD to change.

Result…

Now I’m much more upbeat, I’ve gotten my silliness back and I’m smiling more. I’m even talking with more confidence and feel like I hold more of a presence in group Screen Shot 2016-05-21 at 19.35.19conversations, rather than being accidentally talked over. I’m naturally waking up and feeling refreshed at around 9.00am some days which is wonderful! I haven’t lost weight but I feel so much better in myself and have more energy (my condition allowing), positivity and motivation. I’m doing chores without letting them pile up and even offering to do them when it’s not my turn, if someone is in need of the help. My memory and concentration are back to the level they were last year and I don’t let the ‘brain fog’ demoralise me like I used to. It does vary wildly due to my MS but overall I feel like I’ve gotten my personality back with some added adulting to boot, ha!

Back to the alcohol – literally…

These days I have a few beers if I go out for food (the cinema doesn’t count) or if I’m on a night out or at a house party etc. I’m celebrating with it again, rather than relying on it for my entertainment every evening. I’ve gotten used to processing my emotions in a more even way and I either stay calm or keep my annoyance/upset to a controllable level, even if I’m really being pushed to my limit. I realise that the situation is only for that moment and it will pass and that’s life and that’s ok with me.

‚̧Chrissie‚̧