Chronic Illness

My month in pictures…

~ somethinginthewayshemoves ~ 2 Comments

September turned out to be a busy month. Between birthdays, photo shoots & kidney infections I have been kept on my toes. So, rather than bore you with all the millions of details I present a month in pictures. 

First up, let’s do the birthdays. Young & old it’s all going off in sept. My midwife bff assures me September is always the busiest month birth wise; must be down to all that seasonal goodwill. 


There were bath bombs & vegan chocolate cake. Dinners with friends & face paints with little friends. I’m doing something big for my birthday next month, so the actual day was low key, but lovely. Not featured is the birthday of my darling big bro, mostly because him & his family popped off on holiday. Not that I’m jealous. 

Now, I bet you’re all wondering what I’ve been munching this past month, well I’ll tell you. A lot of sushi, mint tea, avocados & vegan treats. There might have been few tipples in there too. Well, it was my birthday.


I’ll pause now for some lovely/amusing things I’ve snapped. 


Ok, back to definable categories. September saw my involvement in my first ever photo shoots. I was a jack of all trades whilst overseeing the shoots for my body positive project. I got through it with the help of many talented people & topped it off by posing in my pants. Who knew, right?


Style wise my nails & I were making the transition to A/W. Autumn is my favourite season, so I’m tickled to be breaking out boots & scarfs. The weather is as unpredictable as ever, so it’s impossible to determine when these cosier items may actually be needed.


One of my new weekend activities is wedding shopping with a certain someone. The pursuit of the prettiest things has had me trekking all over, but it’s all quite peachy.


Time for a selfie break.

& some random bits & pieces to finish on. 


I hope you all had a dreamy 9th month & fingers crossed you can rock October.

Bein’ green….

~ somethinginthewayshemoves ~ 4 Comments

I have been lacking in energy lately and so have been very careful about where I use my spoons. However when the words ‘free sushi’ were uttered I was out that door. 

I donned my latest bargainous find, which unfortunately is a bit big. Thus it looks less cute than I had expected. I do love this ensemble, though. I’m hoping the skirt can be taken in to fit well. 


Top – H&M

Cardi – Monsoon

Skirt – Lindy Bop

Now, here’s the weird thing about this get up. The items I’m wearing range from a size 16 to size 22. Which just goes to show that if you take a fancy to something, you should always try it on. 

My outfit wasn’t a complete hit, but my eyeliner was super tip top. 

All I can say is I’m breathing…

~ somethinginthewayshemoves ~ 8 Comments

PTSD is a persistent foe. You can make progress & start to think maybe, just maybe you can actually defeat this bastard, but it knows you think that. 

It’s waiting for you to relax your hyper vigilence. The moment you begin to let go of the breath you’ve been holding for 17yrs it will suck it in & grow.

Folks in your life see you gaining strength & think you’re better. There is no ‘better’.  There is managing ,

coping,

trying to live,

daring to live?

The good days can start to stack up. You can feel a safe distance from the horror, but you can never be sure. 

You can never be certain that a flashback won’t stun you like lightening. 

And stuck in that hot, white memory you could loosen your grip on the here & now.

The relative calm & safety could be shattered. Perhaps only for that instant. You could be lucky, those smells & fears could melt away. Current achievements or delights may well wash over you. It’s possible. That happens. 

You’ll make plans & take steps. But you’ll always be looking over your shoulder. The knowledge of the cruelty of your own mind will keep you rigid.

Because lightening does strike twice & thrice & ever & on.

With every thump of your heart you know you’re only one more squeeze from disaster. Where little sleep becomes none. The crazy creeps out from behind all those positive walls, it brings terror & tsunamis of grief. 

And the pills don’t work

Or Dr’s 

Or the life jacket you had to make with your bare hands. 

There is only one way to row to shore & it’s brutal. It’s hot blood dripping from your fingers; slippy yellow fat & an uncontrollable urge to cut a little deeper. 

Bleed a little more 

Wrapping up the unthinkable pain in the easy hurt of butchering yourself. 

This illness is being  awake in the night & writing so you won’t do. It’s ignoring the destructive comfort because you so desperately want this new, real life. 

And, yes, all those yous should be I’s. 

It’s my past, my pain, my ongoing battle for a future. 


Listen, I’m a really perfect song.

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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.

My week (ish) in pictures…

~ somethinginthewayshemoves ~ 4 Comments

When I reviewed my recent pics it seemed that I have been mostly taking selfies, so get ready to see a lot of me. I have also been galavanting to the beach, petting poodles & admiring my city. There have been rough days & some sparkly days. 

Project Post it is still going strong. I have even had some feedback from folks who’ve found them, which is amazing. My patents are getting into the selfie game, I am both amused & proud. I had an incredibly constructive appointment at the Homeopathic Hospital; spoonies if you have access to alternative medicine go for it. 



Aidan got some longed for bawbags. We will be checking out the Merchant City Festival tomorrow. Watch out for that post. We got Bilbob out in the sun & believe me that is no easy feat. Bronan & I watched some Netflix docs in bed and I have been trying to wear more of my plethora of costume jewellery.


Finding the yumiest vegan snacks is my latest quest. My fav so far is Cleo’s peanut butter cups. Finally, my highlight, plenty of gorgeous nibbling time. Athena has now lost all her front teeth & continuous to be hilarious. Baby Kevin is thriving. He is my beautiful Superbaby. 

Penis Envy…

~ somethinginthewayshemoves ~ 4 Comments
Continuing with my plan to share some writing from archives I give you this. Something tongue in cheek & a little bit dirty that I wrote many years ago. Have a happy weekend. 
This is perhaps a little crude, but I refuse to believe I am the only person to ever feel this way. Others must have the same longing.

There comes a point in a break up when you know you are going to be ok. You suddenly realise, I can get over this amazing man. It will take time, but I know I’ll get there.
I’m just not sure that I can get over his dick. It’s wonderful; really, truly gorgeous. It is everything I want from a dick.
Big.
Oh, I know, size isn’t supposed to be important, but I like a big dick. Not insanely big, just big enough to cause a little gasp when you first see it.
Perfectly proportioned.
Smooth.
Inviting.
Fuck it, just nice. You get the picture.
I miss it. Of course I miss him, the man attached is more important, but I believe I can move on.
He might not have been the right man, but he certainly has the right penis. I may never meet another one like it. It did all the right things. We’re always being advised to invest in quality. Be it materials, ingredients or equipment. Surely this advice stands for cock. Let’s face it, sex was unlikely to go wrong with that in his pants.
I am sad that I probably won’t ever see it’s full glory again. I feel I should be allowed one last goodbye. Or perhaps, visitation.
Can you get penis access?
Dick alimony?
I realise this may seem shallow, but it brought joy to my life. That cock made me feel great. It hardly seems fair that I should be heart broken and deprived of my favourite pleasure source. I’m really quite upset about this. Some other woman might end up with my dick.
I wonder if I should raise my concerns with him (the man, I don’t talk to the penis) or just hire a lawyer? I could set a precedent.

On the plus side…

~ somethinginthewayshemoves ~ 1 Comment
Fatigue is getting the best of me this week. I am out of spoons, but I don’t want to be out of words on this blog. Hence, I wil be sharing some short pieces I have written for other publications. I hope you find them as absorbing as my usual content.

First up a piece on how body shaming & fat stigma makes plus size infertility an even bigger challenge.

Infertility is heart breaking affair for anyone who wants to have a child. With the NHS now reporting that 1 in 7 couples have difficulty conceiving, infertility is more common that we realise. Thankfully many people in UK will be able to access fertility treatment via the NHS. However, some people are not deemed suitable for treatment. One of the groups who may be denied access are those categorised as clinically obese.

Women with a BMI over 30 are routinely refused fertility treatment. Drs advise them lose weight before they can be referred to a specialist. There are a number of issues with this policy and some are tied in with the way society as a whole views fat people. Let’s begin with index used to measure if a person is obese. Body Mass Index (BMI) has been widely discredited. The index has a number of problems including the fact that BMI does not differentiate between muscle & fat. Hence, people who are fit & have healthy body fat can be classified as obese. Another issue is that BMI does not recognise difference in body shape. It is well established that those who carry their weight around the middle (sometimes known as apple shaped) are at much higher risk of health complications than those who carry excess fat around their hips (pear shaped) [1]. Thus women with very different shapes & risk factors can be labelled with the same BMI. Perhaps the biggest failing is that BMI  does not always change with lifestyle alterations. A person may make significant changes to their health without necessarily losing large amounts of weight. Partaking in regular exercise and switching to a balanced (but not calorie focused) diet will have a huge impact on a person’s wellbeing. Sadly, BMI would not recognise these positive changes unless there is also weight loss. This can put women in the position of focusing on how much they weigh rather than how their lifestyle impacts their wellbeing. BMI uses an arbitrary scale to calculate’ health. Since a person’s health can not be determined on their weight alone; it is bound to fail.

Of course, there are also questions to be asked outside the clinical failings of BMI. It is important to note that there is no official policy on women who are under weight. Despite the fact that being ‘too thin’ can have a bigger impact on a woman’s fertility than being ‘too big’. The medical community appear to jump to the conclusion that fat is always bad. A notion that is reflected in society & that causes plus sized women to face wide spread discrimination. It is estimated that half of pregnancies in the UK have obese mothers. Yet studies show that only 5% of admissions to neonatal units and 4% of preterm births could be avoided if all pregnant women had a ‘normal’ BMI at the start of pregnancy [2].The implications is clear, overweight woman are regularly having healthy pregnancies & deliveries. Still the overwhelming message from the medical community is that obese women automatically have  high risk pregnancies.

We must also look at the origins of the BMI scale. It was developed in the 19th century by a Belgian Mathematician. The formula was intended to be used as an easy way to measure populations, not individuals. It was developed for the purposes of statistics not measuring individual health. BMI is not a reliable scientific measure. It is astounding that it is still in use.

The most worrying part of this protocol is that women are often not even referred to a fertility specialist until they capitulate on the weight loss issue. This means that women who have specific medical problems interfering with conception are forced to delay interventions that could solve their problems. The bottom line is that women who are classified as obese get a raw deal. Underlying prejudices seem to be making an already distressing issue much harder of plus size women. Infertility can make women feel powerless and incompetent. When you are fat, those feelings are increased by the prevailing impression that your weight is to blame.

1 Mayo Clinic
2 Public Health England, Maternity obesity and pregnancy outcomes.

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Fill me up Buttercup…

~ somethinginthewayshemoves ~ 4 Comments

Reader, I have been lax. I have been getting used to my new medication (Pregabalin), which is no easy feat. As a result I have done very little worth blogging about. So, I thought I’d share my wee sideline. 

I have been making flower crowns for about a year. Not prolificly, just when the mood takes me. I started because I couldn’t find a crown that suited the picture I had in my head. I found I enjoyed it & made a few more for myself. Then I discovered the real fun; I made a crown for my niece. I love making flower crowns for children. I can add all sorts of trinkets & surprises. I can tailor then to each little person’s favourite things & I get to crack open the glitter. 

Without further ado, a few of my creations.

  
  
  
When my wooden mask isn’t in the mood to model, my darling Bronan steps in.

  

Tomorrow I plan to get my culture on. I will try my hardest to dress up nice & take interesting pictures. 

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.