It’s Crap Feeling Like Crap At Christmas

A friend of mine shared some very wise words this evening and I’d like to replicate and add to them here.

Whatever it is that made you arrive on this page, whether you have a long term mental or physical condition, the holidays can be a little less jolly. The twinkly lights, the parties that you can’t or try to attend but feel on the outskirts, the social or financial worries, any or all of these can feel or appear worse this time of year because we’re meant to be happy and jolly.

For me, it’s Christmas eve at 12.30am, so technically Christmas, and I’m laying in bed with a tens machine strapped to my buttock in the wild hope that it will have the same effect as it did with my shoulder last night where the muscle twitching over the course of a few hours gently manipulated my subluxed joint back in (Whoop! ). Pain sucks. It makes you tired and grumpy and do you know what? It’s OK for you to feel sad about the loss of normality, or the lack of involvement, or just that it hurts. What is not ok is to feel guilty because you can’t put your chronic condition in a neat box and hide it take life easier for others. Invisible Illness can be tough for families and friends to understand and you may find you get a few extra “can’t you just…”, or “have you tried…” comments. People have good intentions at heart.

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Your mental health is just as important at Christmas as it is the rest of the year. If you need to talk to someone & you’re in the UK, call:

Samaritans – 116 123
Mind – 0300 1233 393
Rethink – 0300 5000 927
If you’re at risk of harm please call 999.

Other useful numbers include:

Refuge – 0808 2000 247
Shelter – 0808 800 4444
Police non-emergency – 101
NHS non-emergency – 111

I hope you enjoy the holidays, but if you need help, please reach out either to the professionals above, to family & friends,  or just the many online communities who provide a huge bolster.

However, if all you needed from this post was a refill of smiles, have this Christmas squirrel.

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I Like Cereal – I sound like rice crispies

I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.

Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!

I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!

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He looked for signs of arthritis  (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.

Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.

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He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.

He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.

Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.

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I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.

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I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.

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So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.

Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…

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Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.

I Have Faith, It’s just Not Your Faith

It’s Christmas and there’s lots of people celebrating in their own way, and whilst out shopping for my beautiful girls’ gifts I was approached by an utter stranger with the words “he will heal you when you let him into your heart”. Unlike last time, (and because it Wasn’t a child) I responded with my actual thought of “Don’t be ridiculous”. Also stop touching me. Personal space please.

I fully expected to laugh about it on the way home, but instead I packaged it away in my head. And waited until now in my safe blog space to explore it. So welcome to my 1am painsomnia party. Anyone in the house who can’t sleep despite both diazepam and oramorph shout “heughhhhhh!”…..  oh. Ok. Just me then.

I know a lot of people who have enormous faith, some Christian, some Muslim, others Buddhist. They are kind, wonderful people that I am richer for having in my life. I was raised Christian,  but given the freedom to make my own choices (with a healthy dollop of Catholic guilt should I choose to leave the church). But whilst the amount of water remains the same, my glass got bigger.*

My first bug bear was the idea that I got ill because of something I did. Sin makes you sick… or I did something to deserve this stupid genetic condition that wreaks havoc with my internal organs and encourages my skeleton to separate at every possible occasion. I deserve this pain because I sinned. How very Catholic. If this is the case, had I known, I would’ve enjoyed that sin a lot more.

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The other suggestion I’ve had from people of faith is that God has a plan and this happened for a reason. So, this all loving father tried to kill my daughters (which were saved by science) and has had a fair few pops at me and because I’m the weeble that won’t fall down, we’re just throwing pain in my direction because there’s a reason I feel like death on a daily basis, it’s just on a need to know basis. Bollocks.

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EDS has been slowly stretching me like chewing gum for a decade (and much longer when you consider childhood injuries), although this year the stretching went nuclear, but to add to that CRPS developed in my pelvis. I will not be stronger because of this, what I will be is physically addicted to opiod medication because this is levels of pain that no amount of praying is going to touch. In those wee small hours in the early days when my bones felt like they were running with acid, I prayed,  I begged, I would make bargains. In the end, the being that made it stop, or at least tolerable, was a GP with a recognition that I needed something to work on my neuropathic system. If you are reading this and still think you should post a passage from a 2000 year old book to tell me why I feel pain, please study the chart below. Now live that pain daily until science rescues you.

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The side effects of Neurotonin which was prescribed alongside a whole host of painkillers for the non-neuropathic pain, are similar to those following a mild stroke. The drug prevents synapses from being formed and as suc, words are temporarily lost from my vocabulary and my short term memory worsens. I quite literally did give CRPS a piece of my mind.

My faith is placed with my doctors who have dedicated their lives to solving the mystery of dysautonomia and eds. They do not declare themselves infallible or omnipotent, but so far they have been brutally honest about a lack of a cure, whilst helping to reduce pain and set me on a path where I’m strong enough to help myself plateaux rather than slide down further. I do not worship them, rather respect them and trust them quite literally with my life.

I will finish the same as I started. If you have faith, that is a wonderful thing. I commend you for holding onto that light in a world that’s pretty hideous right now. But, please don’t try to convert me. I am a humanist – I deeply believe that we should attempt to treat each other how we wish to be treated and take care of the things around us. When I die, I believe that it is the end – my body will go back to being part of the earth and I will live on genetically in my children. What matters is the here & now rather than any afterlife.

Christmas to me is a Pagan festival which celebrates the winter solstice and the idea that hard times are over half way through. Spring will soon be here and with it the warmth that will sooth my bones and food that will support my slowly failing body. Despite this, it’s also a holiday adopted by other religions to promote a sense of community, and anything that makes us look at someone and ask them if they need a hand (or leg, or shoulder) can’t be bad.

So to you, whoever you are. I hope this week brings you a small piece of love or joy in the form that you hope for. And if you possibly can, this week pay it forward – ask at a coffee shop if you can pay for the next person’s coffee, go sit with the little old lady sipping tea on her own and listen to her, see that lady in a hijab looking uncomfortable on the bus? Go sit with her and smile if she looks at you, listen to the carol singers at your door and thank them for bringing you music, however bloody awful and put of tune it was, ask the lady in the wheelchair if she needs a hand. Be nice. Human nature is not to be cruel.

*kudos to you if you got the reference

Gifting my Spoons

Today was the kids’ Christmas fair at school and I’d agreed to help out (you know, because I have tonnes of spare spoons). In return the parents association agreed to give all of the donations given at the door to the Ehlers-Danlos UK charity.

As usual, facepainting was really popular, but not so busy that I didn’t have time to paint a special candy skull for my friend Kate.

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I’ve not picked up a paintbrush since August, so I was so relieved that my hands held up. I’ve not been able to hold a pen for more than ten minutes, but using sponges & paintbrushes seemed to be OK.  Perhaps because the action of painting is light compared to writing. Whatever it was, although my designs were pretty basic, I lasted the couple of hours I needed to and created lots of reindeer, Elsas and Anas.

A friend asked me what I was doing there in that “but you’re ill” way, and then we fell about laughing. She’s been at the front line of all of these events for the past 5 years despite battling breast cancer in a way that made Boudicca look like a wallflower. We had a great chat about sucking it up for events like these because they make us feel normal and God it feels good to get out and feel normal.

We got home at 2.30pm and Beanpole and I have been cwtched up on the sofa under a blanket since watching Willow whilst I sink into a nice dihyrocodeine fuzz. All spoons have gone, but it’s been a good day & I’m so proud of my babies for helping out their school and taking care of me. We’re a pretty awesome team.

I’ll have to wait and update this post when I find out how much they raised. But as a nice little bonus, I got to give lots off posters and things from when I signed up with EDS UK to the school to help raise awareness with the teachers 🙂

This is me and TinyPants with the Headteacher, Mrs Harrison. I’m going to miss these days when they’re all grown up in high school.

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Stop using the C word!

No, I don’t mean that one. Although,  don’t use that one either. What I am attempting to say is that I don’t care how many sleeps it is til Christmas. Put your Elf firmly on the Shelf. Holidays are coming later (it’s not later). And if you try decking my halls, I shall firmly deck yours.

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(I know it’s 2015)

I am looking forward to the actual day. This year promises to be a chilled out, Onesie wearing festival of inappropriate giggling. It’s being hosted by my sister-in-law and brother-in-law so we’ll be surrounded by good people  (and lots of whom have whacky dietary requirements that make me look normal).

I’m just a bit anti this year as the idea of all the preparations are a bit overwhelming. Shopping with no spoons is daunting and the idea of going into crowded places, trying to get into inaccessible shops where people’s elbows are at face height is enough to make me go a bit bah humbug. So I’m putting it off until I’ve finished all the DWP paperwork  (Seriously,  nothing shouts ding done merrily on high as a disability assessment form).

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Give me a few more weeks and confirmation that mince pies won’t make me hurl or cause my stomach to burn my oesophagus like a really ineffectual branding exercise.

Until then…

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