Friends

I’ve been reading a lot of stuff online lately- I know it’s a bad habit but I’m a sucker for the written word and the Internet is cheap and easy way of getting fresh content quickly.

I’ve learnt lots, been exposed to new ideas, even met new communities, it has been fab. But I have been noticing a growing trend in a lot of items written about people’s personal lives where it’s seen as desirable to get rid of people who hold you back. Toxic people. People who aren’t good for your health or your boundaries.

I can see where the start of this comes from, and it’s a good place. Abusive people absolutely exist and absolutely have no right to make you miserable. But… normal miscommunication is not gaslighting. Someone disagreeing with your opinion on something does not make them abusive nor you a victim – I mean,a) opinions are like assholes, everyone has one and b)sure they could be a jerk. One this one thing. Context is important. How important is the thing to you? What is the friend like in the rest of the spheres of your life? Should the thing be this important? Less important maybe if you got carried away? (Hah, more, maybe? If the friend is a jerk all round?) But life isn’t black and white when you’re dealing with human foibles in day to day life and all these people so simply talking of sweeping out everyone ‘negative’ and ‘not 100% for them’ etc out of their lives… 

Friendship is like any relationship. It’s about trust, honesty, communication, respect, and hopefully, a lot of fun and good times. It’s about sharing bad times BETWEEN you – not one always having to be there for the other. There’s a bit of space involved to, depending on the level of friend, from ‘aren’t you two married?’ to friends you only see at certain occasions like work/hobbies. A good friend should be able to challenge you, not be a sycophantic yes groupie.

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I can’t walk backwards

Well I can, just not in a straight line and if I hadn’t been in the pool I think at one point I would have fallen over! I am such a clutz.

It was my first hydrotherapy session today (thank you so much mother in law for looking after kid#2!). Supposed to be for my knees but ended up surreptitiously working out a fair few of my joints, including my wrists(?) which can only be a good thing. Beginning to think that nothing can fix my knees though – they sound like a cement mixer and the burning can be so intense. 

Voting day today too. I shall be voting after a nice restorative rest.

Hair and Bravery

Right now, my hair is short and bright blue. It’s not even a short haircut conventional to women, it is very much a short back and sides job (mostly done at home with a set of clippers as I’m broke).

I like it. There are several reasons – I have big bold facial features that a bold hairstyle suits I think (but this isn’t really that important:D), I love being able to rub my head and scalp when it hurts without messing up my hair and looking like a complete tool (quite a biggie), there’s a lack of maintenance I quite like, and I love blue (although I may try other colours)

I’ve had many women come up to me and say “I love your hair – you must be so brave to have it like that”. 

There is a lot to unpack in such a short sentence.

Firstly, I really must get it out there that I am not brave to have a hairstyle I very much like and enjoy. I’ve even shaved it all off for charity (raised money for cancer research when my mum first went through chemo) and it didn’t feel brave then – I knew that my hair would grow back. I’ve had lots of different hairstyles, long short coloured etc. Hair is hair. If you can’t grow hair, there are amazing wigs (mum had one from the hospital that was better than her real hair) and quite frankly, bald isn’t that terrible a thing to see. Although, I am speaking from a place of ignorance – I have always been secure in the knowledge my hair would come back – but I have never thought bald people looked bad.

However, there is an unspoken assumption in the brave sentence above, that I have been brave to go against some code for women and do what I want with my hair instead of some conventional ‘feminine’ haircut. Well, screeds have already been written about that so the only thing I feel competent to add is fuck that. Fuck that to hell and back.

Bravery is about facing your fear and doing it anyway. Being brave is dealing with your pain and calmly playing with your children to the best of your abilities. Being brave is facing your demons, whatever they are, and making it through one more day.

It isn’t having short blue hair.

WARNING *contains self-pity*

I feel goddamn awful. The middle of my head feels soft whooshy and dizzy, I’m nauseous and it’s all poundy. The pounding is making the nausea worse. But I’m off the amiltriptyline that was doing nothing but adding to my exhaustion so now I have this excess burst of energy that I don’t know how to handle.

There’s also a thousand and one things I want to get organised. There’s the fun stuff, getting new art done and then selling it at craft fairs and online. There’s learning how to market and promote (but that really takes it out of me and makes me worse).

Then there’s the horrible life admin that really needs to get done. There’s sorting out the docs – the GP spent the last visit talking over me and even told me something completely wrong about my new medication – I tried to break into his self imposed structure of how the appointment would go (surgery booked it not me) and ask how I needed to step up the dose and he hand waved ‘oh it’s in the consultant’s letter’ NO IT’S FUCKING NOT. had to google it and hope I got it right. 

There’s dealing with work admin. For some reason they haven’t actually sacked me yet so I’m poodling along on long term sick (insurance approved my claim and are paying me but sometimes I wish they’d sack me so I could be free and just concentrate on me, my family etc. I’m sure it would be better for my health). Sent them an email that they completely got the wrong end of the stick of and made me sound like a tool. Makes me wonder if I wrote the email wrong, my head as been dreadful of late. Fuck it all, sent email to clarify plus cancel some benefits won’t need as youngest kid starts real school soon.

Then there’s dealing with the school. Got my husband to see that my eldest may have high functioning autism. So I want to get referred by GP. In order to do this I want school’s view. Initial quick chat with teacher supported my view. Email back about formal meeting to discuss with SENCO was ‘can’t put formal measures in place until we have docs diagnosis” AGAIN, not what I asked for! Had to write another email explaining that I wanted school based evidence of behaviour stuff etc. Like banging head on brick wall. Because she’s learning her school work their real bottom line is they couldn’t give a crap (right until the point it affects their results!!!). My poor kid. At least I found her a good chewy silicone necklace so she will stop putting EVErYTHING in her mouth (at 9). She was so happy with it, bless her.

Whinge whinge whinge. Oh well. I will live. Power on wheeeeeeeeeee!

Half term exhaustion

I’ve just shoved my noisy twosome out the door and into the (hopefully) willing arms of their granny. They’ll be there overnight. 

Torn between doing loads of shit and getting it done well seeing as how I could actually focus for a change or just sit and stare peacefully at nothing for hours. The mummy dilemma. 

Got an impact questionnaire along with a bunch of other stuff from the neurologist yesterday. Had questions about whether the headaches had impacted on my daily life in the past x days, or how I’d carried out activities etc. I really don’t know how to answer them. I’ve had a near constant headache/migraine of varying intensity, with nasty neurological side effects, for two years. In that time, I have adjusted how I live my fucking life in order to actually get some shit done. Because lying in bed for weeks on end is no longer an option when you have children (or, for a uniquely busy time, a terminally ill family member) when it doesn’t fix me or do anything to give me more energy. I don’t do the same things that I did before. Sometimes I can’t do the same things I did the week before. I’m definitely not doing the amount of things that I would like to be doing – but I have a nagging feeling I felt a bit like that in the before times too!

It’s like those stupid questions about the 1 – 10 scale of pain. I have a pretty good imagination, and I saw what my mother suffered. Even in my most grimmest, miserablist days,where I struggle to talk or be able to walk or see and honestly I wonder if I’m having a fiercely painful stroke, I know a) I’m not gonna die and b) it passes. So yeah, presumably, an unkind world must be saving up something worse so that’s what I’m saving the 10 for. 

Hah!

Okay, I may have told a fib. I definitely have regrets and they are all to do with food. I regret eating too much for lunch, and I regret buying that ridiculously delicious caramel ice cream because now I will eat it. 

The call of the stomach!

Regrets, I ain’t got no regrats (seriously though that dude’s tattoo…)

Obviously I regret times that I was mean. Or that I behaved badly in other ways. But for those times I just try and use them as a personal ‘woah there’ when I start being an dick in the future.

Right now I’m at a point in my life where I should be forging ahead in my career – I’ve qualified, had my children and the youngest is starting school this year, and my husband is also settled in a good position. Instead, today I’m taking a slightly slow day as I over did it a bit (and had a few hospital appointments which always takes it out of me). My youngest is running around naked. But not for long I promise!

I am not totally idle. I draw, paint and take photos. I’ve sold some and entered a competition. I’m getting positive feedback and I think I’m good which makes me wonder sometimes, should I have done art and not science and then accountancy? What would life have been like? Right now trying to set myself up as an artist/ illustrator is bone achingly hard, simply because the slog of promotion, marketing and selling is not something that my migraine addled brain is any good at a) doing b) being able to do consistently. For instance, I really need to update my online shop so I can then direct people there from Instagram or tumblr but my head has hurt too much for the last 3 weeks every time I have the free time to do it. My dear friend, who has obscene amounts of energy – she kept up tap classes during her recent pregnancy with her second child and then did her tap exam when baby was 6 weeks old!!*, wants to collaborate with me so we’d be arty farting together and that way I’d have help over the admin side but I’m leery. I’ve heard lots of stories about money and businesses ruining friendships. I also like being in creative control! Ewf. I have heard that the only one stopping you from achieving something is you, everything else is just an excuse. Obviously there are exceptions but I am my biggest obstacle and I need to keep a hold of my determination.

That leads me to regret. I don’t regret my abortive career in auditing. I learnt so much about how the public sector in the UK works (really, shit like that needs to be taught in schools!). I met some wonderful people, including some no fucks given women whom I’m hoping to see give interviews on their career success and how they broke barriers in 10 or 15 years time. I don’t regret meeting my husband at university and how can you regret learning things? I don’t regret trying to keep working with this headache because now I know exactly what it is like and quite frankly my health is worse now. I don’t regret dropping to part time to look after my mother during her terminal illness – I’m glad of the time together and she was so much happier with me looking after her than a career but full time would have driven me absolutely fucking nuts. It was the best compromise and worth every penny of the reduced insurance payout I now have (I’m getting insurance payments as I’m too sick to work but based on the part time rather than full time and small minded distant family members can fuck right off). 

Instead of the busy rushing river I expected my life would be at this point I’m suddenly in a swirling back eddy of a side pool, waiting for the next direction to resolve. Of course I’m not over the moon that I have have a chronic pain disorder (two if you consider the joint problems EDS brings me). So it feels like there’s dark currents here I have to work hard to avoid, all the time just staying in place treading water. But regretting my old life is pointless and just not true. I guess the real reason the possibility of regret is playing on my mind is that I don’t like standing still and there’s not a lot in my old life that I can use to help me/teach me to forge a new life as a woman with an invisible disability.

*she passed with merit btw. Cos she’s super.

Not feeling like Zebra. I am a Hippo, large, clumsy, fierce.

It’s supposed to be the awareness month for the genetic disorder I got diagnosed with last month. 

A zebra is used in a lot of the promotional material because of the saying around hoofbeats, but I really don’t connect with equines, despite a lingering passion for mlp:fim. 

I’ve been doing a lot of thinking at odd moments. There were a lot of negative labels bandied about as a child that have seeped into my subconscious, that I have come to regard as defining personality defects. Things I need to work on, to improve. To be that mythical ‘better’ woman that we always end up chasing. Laziness was a big one. But EDS symptoms fit in so well with why I was always so ‘lazy’ – from being slow and clumsy in PE (weak unstable joints, pain, and poor proprioception meant I hated it and I tried and tried and it was so fucking hard and I would flail like a dying starfish) to always feeling tired (fatigue is such a large factor that people are often misdiagnosed with chronic fatigue syndrome. Also, autonomic dysfunction could’ve been responsible for the fact that I have vivid, movie quality dreams ALL NIGHT LONG and do not wake up refreshed, this is apparently common in EDS sufferers. Go figure).

So instead of having an unpleasant personality trait, I have been battling to do a normal day’s activities with an abnormal body. Of course this is going to be tough! And that’s not to say I’m perfect – I’m pretty good at procrastinating, to the point where I started to use ‘the fear’ strategically to get stuff done. Fellow procrastinators will know what I mean. And it’s not pretty. But that’s not the same as lazy. Oh, and I don’t always keep my temper, and end up shouting (I say shouting, it’s actually just speaking much louder than normal. Proper shouting would actually kill me because of the migraine (constant, daily, probably a gift of EDS)). Now you know all my deep dark secrets.

For years I have put up with my shitty unstable ankles (thank you for breaking my feet btw, on a flat path in flat shoes), my horrible, concrete grinder knees (I gave in this year because I was starting to loose mobility as well as being in pain i.e. I couldn’t get on and off of the loo. Physio diagnosed Chondromalacia due to my kneecaps being in the wrong place since I was a teen, I’m 33), my locking painful elbows (they won’t unbend unless I hit them), being dizzy to the point of falling over when I stand up (this one has got better because my blood pressure has increased because of the migraine. Ha. Ha. Ha.), painful cricks coming from my neck, my shoulders sliding in and out of the joint socket (honestly thought I was imagining it), my hips popping in/out painfully (the noise is disgusting btw) and annoyed the doctors when I dislocated my lower back – in my sleep. On my nice firm bed. Just woke up with it dislocated. Still took 3 days to actually go to the doctor (didn’t even take time off of work. Because I am an idiot).

A lot of the above I simply ignored for a very long time. There’s lots of stats about how long it takes for EDS patients to get diagnosed because clinicians aren’t expecting to see a genetic disorder in daily practice (hoofbeats, horses, zebras) but in my case once I raised it with my GP he referred me to a rheumatologist that visit. Sure he wrote a slightly sarcastic letter full of quotation marks that read completely as if I was a hysteric with Google diagnosis that needed to be pacified, but it doesn’t matter because the consultant saw me, and diagnosed me. Was also completely respectful and that’s also a-ok. The criteria have a 93% sensitivity and specificity too, which is really good. But… back to taking such a long time, well the Nile isn’t just a river in Egypt is it? For a lot of it I assumed that it happened to everybody, pain was such a ingrained part of my life I didn’t question it, for other bits I thought they were the result of my ‘laziness’ and if I was fitter I’d somehow stop being such a clumsy nobber (I’m about 5’11” and a a size 14/16 so there is a lot of me to flail about in a dangerous fashion). If it wasn’t for mr evil fucker migraine I’m not sure I would have pushed for this right now. But it really helps to have a reason for the migraines, especially when I keep getting told not to take painkillers to avoid rebound headaches. 

Rebound headaches aren’t why my migraines started on a daily basis. I only took NSAIDs a few times a month, usually the first day or two of my period. Since they started, I haven’t taken any. That’s since June 2014. What I’d really like to take is opioids, but they are baaaaaaaaad. But oh so good. Now there is some talk of pain relief for my joints, but the few drugs mentioned so far are ones I’ve already tried and not been able to tolerate (plus they did fuck all) for the migraine. Headaches are associated with EDS – it’s like the gift that keeps on giving isn’t it? My skin isn’t as bad as some people’s but I’ve been given worse wounds by medical tape than it was trying to cover. It’s beautifully soft though. I’m waiting for my digestive system to fuck up. As you already know my darkest secrets you might as well know that I have to fart constantly, there’s a (mercifully short) list of food I can’t eat else I’m stuck on the loo for a bit and after a set of weird gastroenteritis bouts (I had hospital trips for them, unpleasant) instead of getting hungry if my belly gets hungry I go straight to nauseous and then diarrhoea. But all of that is really, really manageable. 

So. Now that I have blurted, consider yourself aware. I am tired. Not lazy.

I can’t remember…

I have a neurologist appointment later this month. I don’t remember what time I need to show up. I only know what day it is because I phoned up to ask it I (of course) wasn’t feeling great and didn’t write down the time on the giant wall planner I use to keep track of my life. 

I’d be sunk without the planner. I have some alarms on my phone to help me remember to feed the pets. There’s also a meal planner on the fridge and I fill that in after the shopping comes (can’t really hack supermarkets with the harsh lights and weird buzzy noises from the freezer machines) and now the food gets eaten before it goes off. Sometimes I wonder into the kitchen and can’t remember why. Sometimes I’m holding my phone or the tv remote and go to put it in the fridge because it’s the routine, and when my head hurts the routine of things is what I use instead of thinking. I can get the kids to school. And I can pick them up. That’s a routine. Housework is a routine but it can get hard when I leave a room and can’t see all of the job at once. The worst bit is if I need to go upstairs for part of anything. Sometimes there’s the small rational part of me shouting exasperatedly at the hurty nauseous rest of me ‘pick up the clothes pick up the no PICK UP THE GODDAMN CLOTHES NOT THAT ORANGE JESUS FUCKING CHRIST WOMAN now stuck in the washing machine’ etc.

Not everyday is this bad. Quite a few are. I am trying to work out if my head hurts more on days that my joints hurt more but… I can’t remember. Pointless. The rheumatologist will have written to the neurologist anyway. Maybe.

Ah well, in the nicest possible way, the neurologist has done nothing useful since prescribing topiramate so I should stop fretting. The rheumatologist has got me in with the hospital physio, which is the more important thing, AND I did write down the time of that appointment so I’m good there. I also sold a painting, which is nice, just need to get on top of my organisation for the online selling and for my fayre (I know, I know, but that’s how the organisers spelt it!) next Sunday.

So much work, so little cans!

Rarrrrrrrr!

I booked onto my first ever art and craft fair in just under a fortnight’s time. There’s suddenly so many things I want to have ready to attempt to sell (I’m also paranoid that I’ll spend the whole day sad and alone, with nary a sniff of a sale, gnah) there doesn’t seem time to do it. 

I also went full scale Rambo on the garden as the green waste collection is tomorrow and we want full monies worth. So lawn mown, branches hacked off, blind daffodils dug up and checked and incredibly barginalicious geraniums (20 mixed f1 for £4.99) bedded. And yes, I know they are really easy to over winter by taking cuttings (cos they are super easy to grow, innit, that’s why, I, master clumsy of fuckwittery, like using them) and I mean to do it every year BUT EVERY YEAR I FORGET AND THE CAPITALIST GARDEN CENTRE PIGS TAKE THEIR POUND OF FLESH. Lost a fight with a tree that grows in an abandoned alleyway overlooking/growing the house – tried to wrench off a branch with my bare hands mad woman style and it only half came off, which is somehow more disappointing than not coming off at all.

Have to buy the kids more clothes as they are growing at an obscene rate. Eldest is ravenous. Discovered this might be because she has grown 4cm in two weeks. So that means a trip tomorrow to town, where I walk a mile to the train station genuinely uphill both ways because there’s also stuff she needs for a school trip next week.

My ever present migraine , that the delightful topiramate attempts to halfass squash so I don’t appear as the drunken hobo decides to ratchet up this afternoon and I spent 4 hours whimpering and pretending I was a norm in front of the kids till my husband came home and passed the only pain reliever that I am officially allowed to take to me. An energy drink. Which I had totally forgetting even existed or was a thing that sort of worked. The problem now is that I drank two in a row and I don’t drink anything with caffeine in so I am a little bit jittery. Just a touch. And you can’t rely on them because you just roll the pain over for another day. Hooray!

Does anyone know whether if you have chronic migraines because you have EDS that the chronic migraine ever fucks off? My neuro consultant has been giving me the ‘it’ll be gone in 3 months’ prognosis since September 2014 and quite frankly I want to slap him with a kipper.

Also long green beans. Why do the only take 5min to cook from frozen in the microwave and a random time from 10-40min on the hob? What devilry is this?