chronic illness

There’s nobody else here, no one like me…

~ somethinginthewayshemoves ~ 5 Comments

I’m about to get a bit happy clappy, so if that gets your goat (I hear you), skip this one.

I know it’s been disaster movie of a year. There are truly despicable things happening all over the globe. So, I feel quite guilty about this, but 2016 has been my personal best for a very long time. Selfish or not I want to acknowledge my successes. Queue the happy bit. 

This year I have been comparatively sane. I’m not cured and of course there are bad times, but I have felt psychologically healthier & happier than I’ve been in several years. I’m pretty confident that I’m finally taking the right medication. Meds aren’t magic beans, but the right combination has given me much more solid ground to build on. I’ve been able to push myself, expanding  my social & professional lives in the process. 

Now, here comes the big one, I have not purposely hurt myself in well over a year. Again, I’m not recovered, I suspect the urge will always be with me. The difference for me has been releasing there are things I want more than blood. I’m not going to bullshit anyone, it’s a grind; it’s a battle I decide to fight every day. This is a war that’s been raging for 17 years, but I’m stating to believe I will emerge the conquerer. 

Next up; gettting all proud of myself & shamelessly blowing my own trumpet. 2016 has been a professional triumph. My writing has featured in publications I have long admired. My blog hits have soared & more importantly I produced more work of value than ever before. I am proud to be writing about issues that need to be talked about & creating work that readers really connect with. 

This year I also took a leap of faith & extended my wee empire to include oPeration BoPo. I wanted a thing that didn’t exist locally & so, I just went ahead & made it happen. My first event was an amazing success. I believe there is a need for accessible body positive projects & I am determined to meet it. I have some exciting things in the work for 2017. Get ready to join the self love revolution. 

This year I have gained a confidence that I feared was gone for good. I took charge. I had some big scale health issues & disappointing discoveries, but I kept rolling. I let go of yearning to be the girl I was before life got fucked & embraced the woman I am because & inspite of it all. 

This has been a year of seizing what control I can & trying to accept that it will never be the unbridled authority I desire. My body & mind will continue to usurp me. I’ll just have to wrestle them into the best submission I can manage. 

I’ll be honest my life can be brutal. You know what? I can be too. I’m heading into the new year with a 5 year plan, a growing business, my first nude photo shoot under my belt, ovaries that are really trying & the very best people supporting me. 2017, I’m ready for you. 


I hope there were some bright spots for all of you too & that next year brings you all you’re hoping for. 

Don’t patronise me…

~ somethinginthewayshemoves ~ 3 Comments

I’m struggling to sleep tonight. My  pain got a little out of control last week & so my dr upped one of my pain meds. It was quite a big leap & my body hasn’t been behaving since.  My mood hasn’t really been behaving either. It took a dive earlier in the week for, I imagine, a combination of reasons. Perhaps feeling so bizarre, or the pain or an upcoming anniversary. Who can say?

On account of the above there have been days when even getting out of bed has been difficult. Yesterday was one those days, everything hurt & I was very foggy from the meds, but things had to be done. Bronan had to be fed. I had to return some important calls & I had to put my bin out to be emptied.  Dragging myself out of bed was a struggle, but I did it. So, up I got, flung on whatever clothes were lying on the bedroom floor, brushed my teeth & completed those tasks as best as I could. I did these not because they would lift my mood. Nor did I do them as part of an ‘action plan’. I didn’t derive any sense of achievement. They needed to be done, so I did them.


Later, I tried to write, but couldn’t concentrate for more than a minute or two. It occurred to me that I hadn’t eaten all day & perhaps something in my stomach might counteract the effect of my medications. My fridge contained some broccoli that had to be used today or it would only be fit for the bin. So, I steamed that broccoli in the micro, poured some boiling water on noodles & flung soy sauce over both. I didn’t cook because it would make me feel that I was worth taking care of. I simply used the ingredients available to feed myself in the quickest manner because otherwise, I would not eat.

I tell you these things not because they are interesting. I certainly don’t mention them because I want applause. I merely draw your attention to these mundane activities as they are the reality of day to day life.
THEY ARE NOT SELF CARE.
Mental health organisations & increasingly, just anyone are constantly spouting the merits of self-care. I am so tired of hearing this bullshit. Everything I do does not have a therapeutic purpose. Mental illness (or for that matter physical) does not define me. I am a single woman living alone. There are always tasks that need taken care of. I take each day as it comes & do as much as I can manage. That’s just survival. In that respect I am no different from anyone else. Obviously my illness can make simple jobs difficult. Things the average person may take for granted come harder to me. That doesn’t change the nature of life. I either keep living to the best of my ability or I lie down and die.

To label each chore or treat self-care is to rob me of my basic humanity. I am no longer a person, but a collection of diagnoses’. Illness becomes my defining feature. I strenuously reject that characterisation. To measure my wellbeing by how many dishes are in my sink is insulting. Similarly, to minimise serious conditions by suggesting a nice dinner will make it all better is also offensive. A cute badge with a star & I took my meds or A childish phrase is not going to brighten my day. 

I live my life as fully as possibly. I enjoy whatever I can and try my best to endure the rest. Doesn’t that sum up most people’s experience? I don’t hear anyone congratulating ‘non-mentals’ or ‘non-spoonies ‘ for continuing to exist, so why are they patronising me?

If my thoughts on this offend you, then just imagine how I feel when several times each day I am confronted with the cult of self care. If it works for you, cool, you do you. However, don’t suggest I have a bath with candles to get over terrifying flashbacks. Don’t tell me to give myself a wee treat to combat searing pain. Most of all don’t belittle me by suggesting my daily drive to survive is ‘self care’. Keep it to yourself, darling or prepare for my wrath. 

The mirror has two faces…

~ somethinginthewayshemoves ~ 5 Comments

Yesterday I performed a fairly miraculous transformation. I was so impressed with myself that I felt the need to share my handy work. 

I posted the above on Facebook with the caption, left to right & out the door in 40 mins. All of which is true, but there’s so much more I didn’t say. 

What I didn’t mention was how I felt. My head was wobbly yesterday. I am titrating Pregabalin slowly up to recommended dose. This is an issue because every time I up the doseage the side effects come back. Hence, my brain was not that sharp. Along with that my anxiety was troubling me. The thought of going out alone was frightening. I was of course sore; my back & feet are a constant source of pain at the moment. So, basically what I’m saying is the first picture is an accurate representation of how I felt as well as how I looked. 

I worried and procastinated for so long that I only had 40 mins to get ready. I forced myself out the door with the aid of diazepam, earphones & big sunglasses. I still felt exposed. I dreaded anyone talking to me or even getting standing too close. I got lucky with an almost entirely empty bus, but my heart was still pounding as loud as the music in my ears for the entire journey. At every stop I had to force myself not to get off & go home. Every bump in road sent a shudder of pain up my back. I persisted because I’d really like to have a real life. 


I met a dear friend who I feel completely safe with. We had a drinks & I managed to relax to level where I could enjoy myself. The weather was lovely, the company excellent & I passed for an attractive human being. 

I’m smiling in this picture because I was having a lovely time. I was still in pain. I’m always in pain. I say that not for pity, but as a fact. For my one evening’s entertainment I’ll probably require two days of rest. Today I am suffering. 


My point is that invisible illnesses are often attacked as not genuine & the weapon used can be anything sufferers manage to do. 

You can’t be that ill if you can work.

You can’t be so ill if you can go out.

You can’t be in pain if you excerise.

You can’t be depressed if you can put make up on.

And on & on & on.

I’m offering myself as an example. Some days are good, but I never feel ‘normal’. There is always pain & anxiety. There are nightmares & flashbacks & urges to butcher my flesh. There are days when I can’t get out of bed & nights of no sleep at all. It’s shit to have to push & push to accomplish everything. We (spoonies) have no alternative, if we want to build a fulfilling life, we have to fight. Wether we’re fighting to wash some dishes or to have some fun with friends we don’t need judgmental bullshit to add to our burden. 
Your reward for reading me venting my frustrations is the cutest cat in the world.

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. 

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

  

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.