spoonie

All things must pass….

~ somethinginthewayshemoves ~ 13 Comments

Last week I finally got an appointment with the pain specialist I have been waiting see. I had pinned my hopes on this Dr having some answers for me. He did. Unfortunately it wasn’t a diagnosis I wanted. 

My new consultant is convinced that I have Fibromyalgia.  As you may know I have been living with chronic illness for some time. I have a number of debilitating digestive tract issues. I also have problems maintaining a healthy haemoglobin level, which causes a raft of symptoms ranging from fatigue to angina attacks. Along with these known conditions I have increasingly had mystery symptoms. Pains with no definable cause, intensification of pain resulting from my health issues, continual sleep disturbance despite taking really quite strong sleeping pills, confusion , memory loss & needing to pee constantly. Add that to my existing physical symptoms & PTSD and you begin to get picture of what I’m dealing with. 

Pain in particular has been taking over my life. It limits almost everything. I can’t make plans, my social life has contracted & working outside the home is impossible. Even keeping up with housework is a mammoth task. I needed help. I was clinging to the idea that someone would find a problem that could be fixed. That I’d be offered surgery or medication of some crazy treatment, at the end of which I would reclaim some of my life. I knew that my diagnosed problems wouldn’t go away, but I held out hope that these newer cryptic concerns would be cured. Sadly, that is not to be. 

There is some relief in having someone say this is what’s wrong with you. I am glad not to have been patronised or had my mental health blamed again. I just wish the outlook was a bit sunnier. Since Thursday I have been adjusting to the fact that my pain is never going away. My current condition is likely to be my continuous one. I’ve had to read up on fibromyalgia & prepare myself for all it may mean. I have also been confronted with the new knowledge that pregnancy, which was never going to be straightforward is hugely impacted by fibro. This has been a big blow. I’ve wanted to be pregnant for a very long time. Knowing that I will most likely struggle to enjoy the experience is a punch in the gut. 

So, accepting this new diagnosis is a process. However, I am by no means defeated. I will start a new medication tomorrow. It’s likely to be a rough ride as it is harsh on the stomach, but the pain relief it can offer is worth trying for. I’ve already been referred to various groups & medical professionals. I’m doing my own research; I am open to anything. Expect to join me on a journey of experimentation with pain management techniques. 

I refuse to be beaten by this. Which is not to say I won’t bitch or wallow sometimes. I’m not superwoman. I accept my body will always place limitations on me. I also acknowledge that I am nowhere near to being at peace with that. I’m angry and sad, but not defeated. I have a very clear picture of the things I need to be happy. It’s just a case of working out how to achieve them within the confines of my illness. Let’s face it, I’ve been playing with a bad hand for a while, but I can bluff my way to a win. 

  

My week in pictures…

~ somethinginthewayshemoves ~ 3 Comments

 

It’s been a fairly rough week filled with more Dr’s than I would have liked. There were some amusing moments & cool snaps, hence I am sharing my hospital expoilts.

It all started last Monday with a pain in my lower back. By Tuesday it had spread around my side & all over the right side of my stomach. The pain had intensified to such an extent that I had to see my gp. Dr suspected possible upper uti infection, but wanted to rule out pancreatitis,so off to the hospital I was sent. Not, however, before I had to pee in a tiny bottle & was given two injections in my bum. One was for pain, which had no effect. There other for nausea, which was entirely counter productive as shortly after leaving the surgery I began impressively vomiting. 

I founf myself waiting to be assessed in hospital. For some reason I was surrounded by babies & their parents watching me repeatedly throw up into those horrid little cardboard hats. Once again it’s a round of peeing in various receptacles & being prodded by numerous medical personal. The result being I was admitted with probable kidney infection.

After another two injections in my arse (their is no dignity in being ill) my behind was now feeling a little tender & turning some vibrant colours. My nurse was unable to get any blood despite trying both arms & hands. A Dr was then summoned to attempt to draw blood. Much to my embarrassment the Dr who arrived is already known to me. I had a fling with him many years before. So, I find myself lying in a hospital gown, groaning whilst a very attractive surgeon who has seen me naked pokes me with needles. Only I could end up in the medical care of an old shag.

  
Anyway, blood is finally collected & kidney infection confirmed. I stay in hospital for a further day 1/2 for Iv  anti biotics & pain relief. On Thursday I walk free & consider my ordeal over.

I spent the rest of the week pacing around as kidney pain is worse at rest. I tried my best to rest & even ventured out with my sis at the weekend. We were treated to perfect spring weather. It felt good to be out in the fresh air surrounded by new blooms. 

  

  
As this week began all felt well. I was still a little tender, but otherwise much better. I probably over did it catching up with house work & errands on Monday. Meaning that by dinner time I was exhausted & needed to have a nap. And, that’s the last thing I remember until I came round on the hall floor in dark. My face hurt & I was very confused, but otherwise unharmed. My first instinct was just to go to bed, but after consultation with my sister I realised I had to return to hospital. Que scans, X-rays & a night of observation. Luckily I only have a mild concussion and a bashed up nose. I had no encounters with long lost lovers and I pray I have reached my hospital limit for quite a while. 

  
Oh & my squinty nose is real sexy. 

I go a walking…

~ somethinginthewayshemoves ~ 4 Comments

My body has been up to mischief again this week. My kidneys decided that what I really needed was another infection. So, it was more hospital antics & anti biotics for me. 

Somewhere around the 2nd kidney infection I discovered that pacing was by far the most comfortable stance. Having thoroughly scunnered myself with traipsing up & down my hall I thought perhaps I should take my restless body outside. My trusty sister & Seb came to the rescue with a slow walk around the park. 

  

Spring is putting on a fine show & getting out was a good call. Seb had a rare time sniffing, whilst Lauren & I talked about the mens. 

  

I was aiming for heavy on comfort, easy on frump outfit wise. With that in mind I teamed my favourite flowing maxi with waist cinching belt. I also turned to some red lippy to further perk me up. I don’t know why it helps when I feel dreadful, but it sometimes does. 

  
  
Dress – Primark

Belt – AsosCurve

  
  
  
Lippy -Barry M

This week I have been mostly…

~ somethinginthewayshemoves ~ 2 Comments

recovering from surprise surgery. So, what do you listen to keep calm when the dr in a&e says ‘we’re going to operate right away’?

  
First stop was a little John Lennon introspection via The Beatles with Across the universe. This song has always held a calming magic for me. I completely identify with the notion of words ‘possessing & caressesing’ . In times of crisis I often turn to words, be it writing, reading or soothing lyrics. Naturally I got a bit scared when the dr’s started making rapid decisions & letting Lennon’s words drift over me really helped. 

You can always rely on Massive Attack for an epic chill out tune. My favourite take a deep breath song of theirs is Teardrop. I love the repetitive, grounding percussion that runs throughout. Repitition is mirrored in the lyrics which further offers a steadying hand. The rest of the musical arrangement feels like being emerged in a hot bath. 

Suzanne by Leonard Cohen was the next call up for operation no panic attack. Cohen’s steadfast vocals slowly unraveling a story captures my thoughts & prevents them from wandering into worry. The imagery of the river in the song also lulls me into a gentle place. Suzanne allows me let my breath ebb & flow like a peaceful stream. 

Hysteria averted & procedure complete I woke up feeling in need of a boost. Being stuck in a hospital bed, music once again came to my rescue. 

  
In search of a defiant sounds, I of course turned to Robyn. Dancing on my own  has long been my just do you jam. When confronted with yet another hospital room, you need a little mental boogie. The song isn’t actually particularly upbeat, but I like the concept of just saying ‘fuck it’ & rocking the dance floor all by myself. 

What better way to convince yourself that your emergency procedure was no big deal than singing along to Bobby mcferrin? Any reggae style tune has a sunny bounce, but come one, ‘don’t worry, be happy’ is right there in the lyrics. I have been telling myself everything was ok with the aid of this song since I was kid. It still works. 

  

In every life you have some trouble…

~ somethinginthewayshemoves ~ 4 Comments

  
The first thing I saw when I checked Facebook today was this delightful message. A friend had liked it, which hit a sore spot. Of course I have seen this sort of thing before. The rise of ‘inspiration porn’ is oft discussed amongst disabled & chronically ill folk. We find this trend of objectification disturbing & frustrating & rage inducing & a million other things, none of them positive. We are told in patronising tones that we are amazing for simply existing with a disability whilst simultaneously being bombarded with the message that we must be stoic. Through our pain & struggle we must remain uncomplaining. Take it all with a smile, so healthy, able bodied folk can pat us on the back & declare us inspirational. 

So, yes i’ve seen this crap before. Tried to educate people, been offended & grown just plain tired of it. I think it was such a kick in balls today as I was waking up in a hospital bed. Within the space of a few hours I went from a cinema trip with my sister to emergency surgery in the middle of the night. That is the truth of chronic illness; never knowing what will attack next. 

  
Understandably when I see healthy people declaring the only disability to be a bad attitude I don’t feel good. In a matter of weeks I’ve endured a chest infection & accompanying hacking cough, vomiting, cramping, panic attacks, a weekend of so much pain I barely got out of bed & finally for extra fun an inuigal hernia. That’s without even mentioning the constant chronic symptoms I live with day in, day out. 

I live alone, meaning there is no one to run after me. Sure, I have loved ones to help out with some heavy lifting, but the daily grind of running a house & a life is my responsibility. Cast your mind back to the last time you were really sick. Now imagine feeling that way & having to carry on regardless. Add to that not knowing when the illness will stop or if it may suddenly get worse. Factor in having to carefully calculate how much you can do each day, get it wrong & you could end up passed out in the street. That’s my life and believe me when I say there are times when I feel really quite disabled. 

I’m not writing this for pity or admiration. I merely want acknowledgement. I want it accepted that disabilities are real & varied. I want society to allow those of us dealing with impairments to be pissed off. Our lives can get pretty fucking hard & it’s not always possible deal with that in good grace.

I’m not your poster girl. I’m not your uplifting story. I’m not brave or noble or a motivational tool. I’m just a person playing the game with the hand I’ve been dealt. Stop stealing my bloody aces. 

  

Looking at the Autumn shade…

~ somethinginthewayshemoves ~ 2 Comments

Last Saturday I was feeling a touch of cabin fever. So, I made myself look as presentable as possible & popped out to see a film.  Sold out movie & other cinema fails put paid to that plan. Hence, we retreated to Starbucks & had a nice long gab. 

I took some pictures thinking they’d be   useless, but it turns out I didn’t look quite as rough as I thought. It’s jumper dress time again & this one combines my fav colour with my go to style. Teamed with my new boots it’s the ideal Autumn ensemble. 

  
Dress – Asos Curve

Scarf – Primark

Boots – Vegan Shoes

  

This week I have mostly been…

~ somethinginthewayshemoves ~ 1 Comment

Feeling grumpy, if I’m honest. My bad mood has of course spilled into my listening choices. I’ve been selecting some angry, some passionate & all loud tunes. Sometimes I sing (scream) along, which I find helps immensely. 

So, this week I have mostly been listening to :

Morrissey. Let’s face it he’s a musical genius & this particular song articulates an element of my life that I have struggled with for many years. It captures my predicament exactly & listening to The more you ignore me – the closer I get gives me an enormous sense of freedom. Free from the  burden of trying to explain because darling Morrssey has done it all for me. 

I should explain that I’m not pissed off with anyone in particular, just, you know the whole world. So my next few choices are just ranty songs that vent my chagrin. Next time you are stewing turn up The Pigeon Detectives’ I’m not sorry & holler the title lyric; trust me, you’ll feel calmer. Likewise Can’t stand me now, The Libertines classic presses all the right buttons. With lyrics like ‘ the boy kicked out at the world – the world kicked back a lot fuckinv harder’ song is feeling my pain. 

  
My final earwig isn’t really an angry tune. Falling by Mcalmont & Butler is the kind of song that completely fills whatever space it occupies. So much so that I feel it pulsating through my body. It’s soaring peaks & crashing drums create actual physical sensations. It has been ringing in my ears all week. 

Reggie Kray, do you know my name….

~ somethinginthewayshemoves ~ 2 Comments

You will no doubt have noticed that I haven’t been doing much galavanting of late. I have been feeling pretty awful recently, hence limited activities, but one thing I can enjoy is the cinema. My sister & I have unlimited cards, which we try get the most out of. Last week our movie of choice was Legend. 

I knew a bit about the Kray’s, but I still found their story very sad. I am not excusing their violence, but I can’t help wondering if better psychiatric care could have changed their path. Tom Hardy is excellent on both roles & I highly recommend this film. 

My stomach was really swollen last week & I struggled to find an outfit that was comfortable or attractive. Then I had a brainwave, volume!  I slipped my fullest petticoat under a favourite skater dress & I was quite pleased with the result. 

  
Dress – Asos Curve

Petticoat – Damien & Lillith

Leggings – Etsy

Last week I also got around to changing my nose ring. Getting the new one in was a trial, but it’s so pretty that it was worth it. 

  
Septum ring – Suck my Plug 

This week I have mostly been…

~ somethinginthewayshemoves ~ 5 Comments

Spoonie life can be tough. Meds only do so much, which means you have to discover your own coping strategies. 

Music is one of the things that helps me when my symptoms are unmanageable. Specifically, I like to lie in a completely dark room & play loud soothing music. I try to imagine the room flooding with the sound & let it wash over me. Obviously i am attracted to beautiful music, but for me, I’ve always needed lyrics that speak to me too. In particular I gravitate towards songs that express emotions I am wrapped up in. 

All of this leads me to introduce some new content. I hope  to regularly share with you the tunes that are easing my path. 

This last week has been dominated by women. My choices have been perhaps a little sombre, but that also have a dreamy quality. Without further ado, this week I have mostly been listening to,

I have no idea why it has taken me so long to find Laura Marling, but I am so glad I did. I heard this song, Darkness Descends, in a hospital waiting room & had to shazam it. The lyrics seemed designed for me, as though someone had climbed into my head & taken notes. This song is the musical embodiment  of autum. When I listen to this I feel like I’m wandering out in the crisp, fresh chill of a perfect September day & that’s a nice escape from reality. 

  
Next up is a bewitching offering from an old favourite. Firewood by Regina Spector sounds so gentle, but is really a rousing kick in the arse. With chronic illness there are times when life is too hard. In the midst of a flare when you feel horrendous every moment of every day, you can start think it’s just not worth it. Firewood is basically saying I know it hurts, I know it’s impossible, but you’re still breathing & you have to live. Spector manages to articulate this message without being patronising or dismissive. I love it. 

Spanish Harlem is a song I’ve been playing since childhood. It’s a tune that always made me feel bright & breezy. Rebecca Pidgeon’s version takes it to a new level. The tone of her voice & the more floaty arrangement is lush. I also like the gender switch, these words sung by a woman have a much less possessive feel.

This week’s final earwig is Lana Del Rey’s treatment of Once Upon A Dream. I first heard this when I took my niece to see Cinderella & haven’t been able to get it out of my head. The original Disney version is too sickly sweet for me, but Lana’s dark & twisty take gives me all the feels. This song perfectly fits my brief; it allows me to feel totally immersed in the music.