Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Raindrops on Kittenscl. And mittens on snowflakes?

Dear Mr Geek,
I’d like to write something profound about the rejuvenating qualities of spending time with your best friends.¬† Certainly calmer and a bit more pragmatic than I was a few days ago.

Due in part to my brain soaking in oramorph, I will stick instead to a Julie Andre’s style list of things that you do. A few of my favourite things if you will…
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Making light of things with blatant innuendo. You see the breast in everyone.

Kneading my shoulders. I wind myself up tighter than a tightly wound thing and add to my muscle knots and tension headaches by being Anxiety Girl. You methodically go through and untangle those muscles and manage to calm my nerves at the same time.

Providing food. It sounds simple doesn’t it? But I just wasn’t in the right place to start eating today and the “better” feeling from fasting is alluring. You tempted me with nuts & chocolate until I stopped wearing the retaliation from my intestines for eating.

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Technically, food credits here go to Mr GypsyTree. Oh this was SO good.

Stroking my hair. This one is odd. I don’t like other people seeing the current state of my hair and so it highlights how comfortable I am around Mr & Mrs GypsyTree having unwrapped my scarves this evening. But instead of wanting to hide my hair from you, I like that the hair that is left is kept back as a gift for just you. What this means is when we lay in bed and you stroke my hair, it’s so much more intimate and creates a little bubble around us where everything is OK.

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I’ve felt so unwell this week and I appreciate that you’ve recognised that and adjusted yourself accordingly even though you’ve been stressed out of your mind too. Things always feel much better when we throw poop at it together. We’re a team. And even if I am barely able to string a sentence together, I love you very very much.

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My Stupid Stories

When I glance over my blogs and photos of myself and Sherlock between the years ’04 and ’15, I am faced by so many which present strange and interesting features that it is no easy matter to know which to choose and which to leave. Some have previously seen light in my blogging, and others would not be deemed suitable for the musings about my dear friend, whilst a few would identify her kindly nature that betrays the aloof and analytical body that she wishes to portray to the world. This particular story will do just this.

The year ’15 had furnished us with a multitude of work, resulting in her resettlement in Ireland and my fast decline in health and the resultant confinement to this wretched perambulation contraption; these two facts bear no correlation, but remain noteworthy for the purposes of the scene. Sherlock had since purchased a substantial property, acquired some Strange objects to fascinate her and begun a collection of historical automobiles which in some otherworldly fashion crossed to the other side once in her possession. All these I may sketch out at some future date, but none of them present such singular features as the strange train of circumstances which I have now taken up my pen to describe.

It was New Years Day of ’16, and as a coincidence also my 36th birthday. All day the wind had screamed and the rain had beaten against the windows, so that even here in the sheltered Downs of the South we were forced to raise our minds for the instant from the routine of life and to recognise the presence of those great elemental forces which shriek at mankind through the bars of his civilisation, like untamed beasts in a cage. My mood had reflected that of the weather, having been detained from my bed by our guests the night previous to celebrate the appearance of the New Year. With much fuss and confusion, I agreed to join my gathered family members that morning and acknowledge the passing of another year on this earth. I was presented with a most unusual gift by Mr Geek containing a cryptic message within the intricate silver workings of a beautiful necklace. I identified the chemical composition as dopamine with haste and assumed that this was a reference to my current use of the painkilling substance morphine, to which dopamine is so closely linked. This necklace offered me a clue to things which I had not the presence of mind to see.

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As evening drew in, the storm grew higher and louder, and the wind cried and sobbed like a child in the chimney. I received a message from my dear absent friend wishing me well with a “I hope you have a happy birthday Sherlock”, supposedly alluding to the evenings entertainment as well as our pen names for each other. Perhaps it was my contrary mood, but with I as Watson, this was not wholly accurate. Being aware of the imminent requirement to leave my residence in order to attend a social event some miles away at the theatre, I was very much inclined to cry like the child in the chimney myself.

Looking directly at Mr Geek who was busying himself readying my clothes for the evening, I said “I am tired my dear. Do you think it wise to go out this evening?”.

“Watson! We have made fast plans and we will not dissapoint the others” He scolded, and continued to help me dress. I determined that I would wear both my new necklace and bracelet which was half of a whole that I had shared with Sherlock the Christmas hence. On affixing my necklace, I discovered that my bracelet had vanished from my bedside cabinet and was nowhere to be seen.

It was with a heavy heart, and an empty wrist that we departed for the theatre at which we were to watch the annual Moffat production which I had previously enjoyed each year with Sherlock. The loss of this simple silver piece ignited a sense of loss that had previously been well hidden.

The collection of my sister-in-law and her good man served to lighten my spirits as we travelled to our destination. “Will there be additional content, do you think?” Suggested Ms Bouffet.

“I would believe so.”

“I hope” she said, “that the content may be earlier than that for the general populous. Or at the least with additional detail.”

“The timing would indeed suggest so”

My conversation was lacking and as such was noted by my travelling companions who asked after my health. I was indeed in a substantial volume of discomfort and explained that my demeanour was due to the ineffectual medication. I did not allude to my earlier emotional state over a simple bracelet as this would have made me appear quite unhinged.

Upon our arrival at our destination, I spent some considerable time talking with Ms Bouffet’s good gentleman, discussing several shared interests and his plans for future detective work. Engrossed in this most fascinating of conversations, I was to be surprised my a pair of hands appearing over my eyes!

Initially fearful as my vision was robbed from me, my emotions were quick to change upon hearing a familiar voice from behind asking “Did you miss me?”.

Refusing to believe my own senses, I turned my chair around and discovered that trusting my reactions was a fruitful venture. “Sherlock!” Cried I.

“Hello Watson.”

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My beloved Sherlock had flown hundreds of miles over the New Year festivities at at the behest of Mr Geek to surprise me at my own birthday gathering. I could not have been happier.

The group, Sherlock & I located our seats at the first opportunity laden with a sugar coated feast that would see us through several performances and settled on to thoroughly enjoy the visual and cerebral on screen delights bestowed upon us by Moffat & Gatis. We were not to be dissapointed and whilst I may not be physically able to move to the edge of my seat anymore, nonetheless there I remained.

As the evening drew to its inevitable end, the mood remained high. It would seem that all were aware of this plan and had played their own parts, sending messages wishing a Happy New Year “from afar” and leaving discreet clues.
I had been the only one not to put each of the pieces together and deduce their plan.

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“And necklace with dopamine.” Explained Mr Geek, “So you will always be happy.”

Sherlock looked at me with her eyes as sharp as ever. “Elementary, my dear Watson”.

Footnote:

My Dearest Sherlock,

Thank you for flying all the way here just to see me on my birthday. I couldn’t have asked for a better present and seeing you utterly made my day. Extra points for spending the following day in ridiculous onsies and making plans to take over the world.

I also owe thanks to Messrs Geeks for buying tickets, looking after children & keeping such an enormous secret. I will be over to see you soon larger & hairier Geek and will give you such a hug! I miss you just as much xx

Putting several hundred miles and a sea between us doesn’t stop the four of us being the best of friends.

Yours as ever & without condition.

Watson.

For authenticity, and a particularly nerdy reference to the episode, some snippets were taken and adapted from The Five Orange Pips from the original Adventures of Sherlock Holmes by Arthur Conan Doyle

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.

Date Night: Then and Now

After nearly ten years of marriage, date night is a nice space for both of us, although it’s changed a bit since our first dates….

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Venue (Then): Cheesy meal out at Nando’s or similar then cinema.

Venue (Now): Hydrotherapy pool

Dress Code (Then): black, black and more black. Big baggy skater jeans & skinny band / weird cartoon tshirts. Vans.

Dress Code (Now): Comfy pull on clothes that are at least a tiny bit stylish (proper trousers, a buttonless blouse, and a chunky cardigan from being at work), then swimsuit & floatation belt.

Conversation (Then): music, cartoons, not so subtle suggestions of what we should get up to later

Conversation (Now): kids, cool stuff we’ve done at work, which bits hurt, ooh look! My bursitis is swollen… seriously, feel it! Ewwww!

Sexy Time (Then): Titanic style window steaming in my shitty young person car with added bra fumbling. Followed by wine drinking and falling into the washing basket.

Sexy Time (Now): Mr Geek helping me out of my swimsuit and helping me get dressed. Helicopter style waving of willies (which never gets old). Followed by handing me a hot bowl of homemade stew from the slow cooker & painkillers.

Bed (Then): generally unmade, fallen into slightly tipsy whilst we snogged until our lips fell off.

Bed (Now): double thick mattress and full body pillow with separate extra blankets for me that I can snuggle under and throw off at random points during the night. Helped into. Kissed goodnight.

It’s not all bad. It’s just different.

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Why My Husband Is Not Allowed To Die Before Me

Obviously, this is a bit of a weird & morbid thought, but I’m pretty sure I’m allowed to think this. We’ve been together for over a decade now and he’s put up with some crap in that time. But this evening I had a weird thought…

… I’d just got out of the bath & was feeling a bit achey & sorry for myself so asked him to help me dry my hair. As we sat in my wardrobe, he brushed my hair as it dried into just the style that I like it. I watched him in the mirror & thought “when I’m old and go a bit doolally, I wonder if him still doing this will be what makes me remember us and smile”.

Now I appear to be making the assumption that I’ll be the one to go dotty. But working on previous experience, it’s more likely.

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Note: This isn’t him btw… It’s a Fuggler version of him. It’s the hum teeth embodiment of him though.

But in the words of Pooh Bear. If you live to be 100 years old, I hope I live to 99 years & 364 days so I never have to live without you.

An Open Letter To My Husband Regarding Mothers Day

Dear Husband,

In a week it is Mothering Sunday here in the UK and I feel I must leave you some instructions. As children of some particularly brilliant mothers I have already arranged for gifts for both our mothers – these represent not only our love for them, but a sentimental attachment to our family. Mother’s Day is not a commercial opportunity, and as I said on Valentines, I’m not interested in expensive presents.

Our kids are growing up fast and the home made weird crap that they produce won’t happen forever, but whilst they do, I love it. Don’t buy me jewelry, get them to make it (seriously, take them to hobbycraft!). Don’t buy me flowers, crepe paper and straws!

Perhaps what I ought to say, is don’t play this one for laughs. Despite not going with the commercial side of these days, I am quite attached to the sentimental side of them. That and I’m still not over the valentines thing.

Seriously, who gives this to their wife of 8 years? As a romantic gesture? In A4? And expects to live?! (I’ll admit, you’ve earned some credibility with lots of people for having the balls to actually go through with it)

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I love you. But dude.

Sincerely,

HippyGeek (wife)