spoonie

Comforts in my bones…

~ somethinginthewayshemoves ~ 3 Comments

Chronic pain is hard af. Trying to live a full life whilst always hurting is even tougher. Pain relief medications are great, but they have limitations & complications. Hence the need for back up. There are a million products claiming to relieve pain. So, if you don’t know where to start here’s a few options that make my life a little less painful. 


Let’s start with a cheap & easy product. Epsom Salts are available in every chemist for a couple of pounds & super simple. Just pour some into a hot bath, get in & relax. Epsom salts don’t offer any long term relief, but on a day when my body really aches all over they help. Sometimes even that soothing half hours soak can help me deal with a day of pain.

For more sustained relief I love my tens machine. I find it particularly helpful when I have to be on the move. Often even short journeys or everyday errands can leave me tormented. A tens works by sending electrical pulses across the skin & nerve strands. These pulses help prevent pain signals from reaching the brain & can also stimulate production of endorphins. I swear by mine, wearing my tens definitely prolongs how long I can be ‘active’. You can attach the sticky pads of the tens directly onto your painful areas & the machine is smaller than a phone. Meaning it can be worn discretely under your clothes & is totally mobile. It is possible to borrow a tens from the NHS, but they are also pretty affordable to buy. I bought mine from Argos for around £20, there are of course much more expensive ones if you want something really fancy. 


Heat is another humble, but effective analgesic. I find heat works particularly well for stomach cramps/spasms & achey pains. I use a range of products that provide targeted heat. Adhesive heated pads are great for when you have be mobile. You can pick them up in mutli packs from poundshops & they will retain their heat for 6-12hrs. When I’m at home I favour a good old hot water bottle & heat packs. My very thoughtful little sister gave me an amazing microwaveable heat pack that is filled with wheat & lavender. The smell is divine & it stays warm for hours. You can find a similar one here.


If like me you have stomach issues NSAIDs will be off limits to you. This can be frustrating as ibroprofen in particular is recommended for so many pain types. Which is my I love ibroprofen gels. Again this won’t eliminate severe pain, but it can make you a little more comfortable. I find it very helpful for my fibro knee & shoulder. It is also fantastic for back pain. Ibroprofen gel is available OTC in any chemist, but at around £6 a tube for the strongest formula that can add up. If you qualify for free prescriptions it is worth asking your GP to prescribe it. 

Bringing heat & gels together is Tiger Balm. The balm can be rubbed onto the body & has a bit of heat, but also has anti inflammatory properties. The aroma is a love it or loathe it affair, but I’m firmly the former. Bizarrely I also found this product really good when I had a chest infection. Perhaps it was just the toy boy rubbing it on my chest that felt good, but hey, whatever works! I recently discovered that a similar formula is also available in stick on patches, so you can also use the herbal remedy on the go. I know there can be ethical worries about Chinese medicine, but fear not, dragon & tiger balm are entirely cruelty free. Both products are widely available in places like Holland & Barratt. Again if you are on a budget keep an eye out in pound shops as they sporadically stock them. 


My final suggestion is swimming. I love to swim. My body rarely allows to me do much in the way of exercise, so swimming is a boon. Since the water supports the body stress is lifted from weight bearing areas, which can relieve pain. I find can stretch my body whilst swimming in ways I simply cannot outside of the pool. Swimming is also a great low impact form of aerobic exercise, meaning you can stick two fingers up to the notion of ‘ no pain, no gain’. Even if you aren’t a strong swimmer or can’t manage actual laps, getting into a swimming pool can still be beneficial. Just treading water, holding onto wall/float & kicking your legs or simply walking in the water can really help. Best of all, you can finish your session with a soak in the hot tub or a sauna! 

Obviously you should consult your Dr before trying anything new. I’d also like to be clear that I suggest these to compliment medications & traditional treatments. I take a cornucopia of medications plus physio & other treatments. I could not function without them. I would never advocate ignoring medical advice. 

And so it is the colder water…

~ somethinginthewayshemoves ~ 6 Comments

It’s been around 8 weeks since I miscarried. I think all things considered, I am doing ok. I mean, I’ve not completely fallen apart. I haven’t turned to scalpels for comfort or absented myself from the world. I’m getting up & painting my face & taking part in life. I wish I could say it was easy, but on days like today, it feels like drowning. 

I am attending the recurrent miscarriage clinic to see if there are any issues I am not already aware of & the midwife I see has been wonderful. She had given me info on a ‘support group’, which I’m considering. I’m on some new meds to help with PCOS & tracking my periods etc to keep on eye on things from that side. I’m socialising & blogging & getting more politically active. I’m doing everything i can think of to keep moving forward. So why do I feel like I’m wedged in wet sand?

I think about what might have been every day. Not all day long, but it’s never far away. There are so many reminders. So many painful things that can’t be avoided. From appointments at the maternity hospital & other people’s babies to just the scent of something that made me nauseous when I was pregnant & doesn’t anymore. I don’t want the world to stop. I don’t want to rob anyone of their joyous moments; it’s just so hard. The happiness I feel for others comes with a stab of sorrow. It’s been this way for so long, but my recent loss has given that sadness renewed potency. I let all my hopes out of a place I kept tied up tight. Blueprints for a life that I hadn’t dared to examine sprang to life & folding up those plans is proving difficult. 
I have my period again & I know that impacts on my mood. All of the sensations of menstruating mirror miscarriage symptoms. The cramps & sensitive nipples are reminders I don’t want. The blood remains wrapped up in my trauma. Forever a trigger. And yet, I’m glad to have the period. Not so long ago I had practically none. It’s a relief to have this increasingly reliable sign that my ovaries are doing something. Like so many other things the positive is marred.


I think from the outside I probably look fine. I want to look well. No, I want to BE well. I’m really fighting not to let my life slide. The truth is I’m struggling. My creative output is vastly decreased. I lack the motivation & clarity to write. Not writing is not good for me. I process my experiences through words on the paper. The less I write the more anxious I become. Of course the more I stress about it, the less I am able to curate my thoughts. It’s a predictable cycle. There are obviously more practical concerns; my words keep a roof over my head. 


My physical health hasn’t been good. My sleep is appalling. I know that takes it’s toll. I attempt to rationalise myself out of days like this. My exhausted, pained, grieving & traumatised self will obviously have lows. I know this is to be expected. That knowledge doesn’t change the dread. It does nothing to chase away the fear when I awake to a complete inability to function. When nothing shifts the weight crushing me or the desire to disappear. 24 hours isn’t a long time except when your swamped in depression. I can get through the bad days. I’m just terrified of the days multiplying. 
That’s the crux of it. Mental illness feels a bit like being an alcoholic. I will never completely recover. The lows will always come. Life will always have ways to trip me up. The fear of everything unravelling sits quietly on my shoulder. It’s a bad day. I’m still grieving. I hope for better. 

When the bee stings…

~ somethinginthewayshemoves ~ 4 Comments

It’s been a dick of a week. Debilitating fatigue followed by intolerable pain & some vomming to top it off added up to a big NO. However, antibiotics, oramorph & a good night’s sleep have made a big dent in my misery. So, excuse me if I get a wee bit Julie Andrews on you, but I wanted to talk about the random things that get me through. 

Whiskers on kittens…

So, starting by just lifting straight out of the song. The whiskers & everything else in one specific feline are definitely one of my favourite things. Some folk think I’m daft, but Bronan really does take care of me when I’m struggling. He’ll stay snuggled up beside me for days. He will wait for me to wake on my own rather giving me his usual breakfast call at 6am. He sits on my feet whilst I’m throwing up in the toilet & gently paws my face when I cry.  He’s a darling. Call me crazy cat lady if you like; I believe my cat has my back. 



Wild geese that fly with the moon on their wings…

We don’t get a lot of wild geese around my way, but the moon can lift my spirits. Be it a dazzling full moon, spooky cloud shrouded moon or rare coloured one; I love the moon. It can be so striking & yet peaceful. Don’t get me wrong, the moon isn’t curing anything. It’s just nice to have something beautiful to gaze on whilst I feel like shit. 


Sunsets fall into a similar spot. A sky alive with colour can be momentarily distracting. Pink skys are always my favourite as they remind me of my muffin. When in Australia I spent most evenings on the deck with my niece watching the sun go down. Every night we frolicked whilst pink hues faded into darkness. It was magical.


Bright copper kettles...

Alas I don’t own a shiny copper kettle, but I do love a steaming cup of tea. Mint tea is my drink. It’s a great digestion aid & can help settle reflux. It’s basically an extra med in delicious form. Besides that nothing beats the comforting warmth of sipping a big mug of tea. 

From here I drift away from the sound of music & onto a few more fav things that don’t have Sister Maria’s seal of approval. 

A good book…

I’m a reader. A good book relaxes, distracts, thrills, comforts & engages me. Curling up in my big comfy bed with some quality literature is one of best things in the world. 



A bath that goes with a bang…

Of course I am referring to bath bombs. Sylvia Plath said 

‘there must be quite a few things a hot bath won’t cure, but I don’t know any of them’

Whilst both she & I know that’s not true, a hot bath can be a wonderful thing. Add a bright fizzy bath bomb & you can’t lose. Baths serve so many purposes for me. Hot water eases muscles pain, they relax me, help clear my head & leave me feeling fresh & clean. If you can do all that plus be left with sparkly skin, why wouldn’t you??

Nail (works of) Art…

I don’t know why, but I feel better when my nails are on fire. Maybe it’s because my mum always had glamorous nails. Or maybe it’s because it makes my stubby fingers look more elegant. Regardless, I find it easier to face the world when my nails are a work of art. 


Flower power…

I love to buy myself flowers. I love the scent & how pretty the make any room. Most of all I love the feeling of treating myself. It’s great to know I don’t have to wait for someone else to buy me flowers. Giving yourself something beautiful just because is an excellent feeling. Try it. 

The Summer Smiles…

~ somethinginthewayshemoves ~ 3 Comments

This weekend was a very rare thing, a sunny bank holiday weekend. I made the most of the weather & have been the busiest bee. Of course, me being me, I forgot to photograph most of my awesome outfits. I was too busy looking hot & having fun. Luckily for you I did manage to capture today’s look. 


In keeping with my usual aesthetic I jumbled up colours & prints. I am very pleased with the look. Today was a fairly easy going day; visiting Dad, then errands & photos with my sis. I wanted something I felt pretty in that was also a low effort wear. The sun had deserted us, but I was still in summery clothes mode. The resulting combo ticked all my boxes. 


Dress – Forever21

Top – Taking Shape*

Biker Jacket – SimplyBe

Bag – Craft Fayre


After Barbecues, a beer festival, frozen cocktails & family fun with my baby nephew I am exhausted. My knee is giving me hell & the fatigue is starting to show. I have tackled this with my new beauty trick; distraction lippy. The brighter my lipstick the less folk notice any signs of burn out. This purpley/pink has served me well. 

As I write this it is pouring down outside. It’s just as well I had so many summer hijinks this weekend as the season may well be over in Scotland!


* Item was gifted, but opinions remain my own. 

My week (ish) in pictures…

~ somethinginthewayshemoves ~ 2 Comments

I’ve not been the busiest of bees. I’ve had some minor illnesses dragging on & that has slowed me down. Thus my outfits are slouchy & my snap shots somewhat indolent. 

I’ve caught my city looking pretty in the sun & also the pouring rain that soaked right through to my knickers. There has been a lot of resting with Bronan. Plus plenty of time wasting selfies. 



I visited mum & her beautiful poodles, indulged in comfort food & noticed some lovely details on familiar buildings whilst the toy boy bored me with football. 


There has been nail painting, anti biotic gobbling & languorous layering of clothes. 

I was awoken by the toy boy’s kitten grooming me with her very tough tongue. Luxuriated in Joan Didion’s words & expressed some opinions via my badge collection. 


And just like that I give you the life of a procastinating freelance spoonie.

Blackbirds singing in the dead of night…

~ somethinginthewayshemoves ~ 2 Comments

It’s 5.07am. There are some very loud birds outside & the light is creeping around the edges of my blackout blind. I haven’t slept, but I do finally feel a little bit sleepy. Do I sleep? If so I might sacrifice the day. After no more than a couple of hours for the last few nights I might conk out big style. I wanted to do something today. Something nice enough to make me feel like I’m participating in normal life whilst still being easy. Sleeping all day does not fit the bill. Although, perhaps I’ll wake up feeling rested & be productive. If I could complete one of the many, many things on my to do list it might relieve a little anxiety. For now I’m stuck in the vicious crazy circle. No motivation + no energy = accomplishing nothing. As the things I have not done pile up so does my anxiety. Until the undone things & the anxiety are so huge that I’m paralysed by their weight. I’m just stuck underneath, stressing & not sleeping & feeling increasingly worthless. So, maybe I should sleep. I’m exhausted. I’m always exhausted because I never get enough sleep. There is always something keeping me awake. Be it pain or fear or coughing or nightmares or vomiting or the terrifying vagueness of insomnia. Right now I feel that illusive part of tiredness that usually escapes me. The fuzzy comforting drowsiness that signals actual sleep is a possibility.

But

If I sleep now, chances of sleeping tonight are slim. I could miss the chance to do a thing that could make me feel something other than grey or jittery. If I close my eyes now I’m risking the dreams. Flashing scenes dripping with all the things I cannot bear to look at again. Flickering images soaked in feelings too potent for consciousness. Then I’ll wake in a mess. Heart pounding, breath hiding & I’ll have to talk myself down. Fool myself into a calmness that’s counterfeit. Either way the day is scuppered. All those hopes for lightness dashed. 

So, I stay awake. I’ll just wait in this cool dark room for the day to really get started. Force myself into the shower. Try to make a plan that doesn’t feel overwhelming. Push down the fatigue & the jangling of every nerve for the possible reward of OK. Reassure myself that this isn’t forever. Repeat that I am not back in the hole. It has been a difficult month. I am allowed to feel bad. Tomorrow or the next day or the day after that will be an easy one. Just keep going. Swing from one pleasant moment to the next & hold my breath through all the rest. 

This will pass

I will write the things that are over due

I will do some god damn washing 

I’ll cook a proper meal 

&

Wash my hair

Peace will be restored 

Life will go on

&

I will live it. 
If only I could get some sleep…

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Pause to breathe…

~ somethinginthewayshemoves

I had to go into hospital for a little bit for some treatment to complete things. I also have a kidney infection, my body likes to do fun things like this. Anyway, I am physically & emotionally exhausted. So, I’m just going to rest for a while & will be posting things that were completed before this happened. 

That girl is strange no question…

~ somethinginthewayshemoves ~ 7 Comments

It temporarily spring in Glasgow. I say it’s temporary as rain is forecast from 2pm tomorrow until always & forever. Nevertheless it was a beautiful weekend. Unfortunately I missed every second of it because I have been the most nauseous person on the planet. When the sun came out again today, I felt it necessary to capture at least a few blessed rays. Thus despite feeling yuck, I ventured out. 

I’ll be honest though, I didn’t go far. A quick stop at a local park followed by sushi & film was my big adventure. I tried out this new shirt dress & was pleased with both it’s cuteness & comfort. Comfort is a big thing for me at the moment, given that my body has stopped believing in my right to it. 


Dress – Alice & You

The dress was a success, the rest of the night, not so much. The only film showing at the right time was Beauty  & the Beast; it’s shite. Trust me, you don’t need a longer review. Oh & the sushi didn’t even stay in my stomach until the end of the film. You know your film is bad when you’re not even worried about what you’re  missing mid vom. 


I know, my face looks grim in these pics, but look how cute my nails are. 

Let’s talk it over…

~ somethinginthewayshemoves ~ 3 Comments

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

Power to the people…

~ somethinginthewayshemoves ~ 4 Comments

If like me, you are firmly planted on the left of politics, you are probably despairing at the moment. Trump has been in power for 13 days & he’s already making terrifying changes. It’s easy to feel far away & powerless, especially when you have a disability. However, the truth is there is lots we can all do & it’s essential that everyone does what they can. 


The most obvious sign of dissent are protests. Taking to the streets & making your opposition clear can be very powerful. I know this can be difficult & sometimes down right impossible for those with disabilities. The most important thing is not to feel guilty about missing protests. You have to put your health first. You can still engage with the movement by sharing details and pictures of marches on social media. If you can manage for 10 or 20 mins, go for that time only. Every little bit counts. 


Another great way to combat Trump’s facist agenda when differently abled is to make strategic charitable donations. 

Southern Poverty Law Centre is an organisation that fights intolerance. The monitor & inform the public of hate groups, help the most vulnerable seek justice, educate communities to reduce prejudice & much more. Racists & extremists are emboldened in the current climate, funding a group like this pushes back. 

American Civil Liberties Union defends freedom of expression & equal rights for all. The first weeks of this new administration have already shown signs of hostility towards free press. Rumoured changes to laws protecting the LBGTQ community are very worrying. Now more than ever a group that can fight injustice through the courts is required. 
Planned Parenthood Aims to provide affordable health & reproductive care to all women (& others who need their services). Along with vital access to contraceptives and abortion PP also offer sex education, sti testing,smear tests & breast exams. With a president on record as believing that people who have an abortion should be punished, this safe access must be preserved. The entirety of PP’s services save & improve incalculable lives. It is an essential organisation.

There are of course many other charities worthy of your support. From refugee orgs to LBGTQ rights groups, there are no shortage of worthy non profits. Anything you can give will help. If eveyone gave even 50p it would make a massive difference. Having said that, I know not eveyone has any money to spare. Again, you can help by sharing groups on social media & getting their message to a wider audience. 

Try to engage with bigotry in your own friendship/family groups. Trust me I know how infuriating this can be. It hurts so much more to discover someone you care about holds these vile beliefs , but some folk can be saved from the dark side. Know your history & use it. There are so many similarities to be drawn between the period between the world wars & the period after the financial crisis. For example the conditions in Germany during the Weimer Republic helped to create an environment for Hitler to flourish in. Compare Trump’s strategies to that of Hitler’s, the parallels are frightening. Learn about American history, having an understanding of it’s story helps to illustrate what is so wrong about modern racism, xenophobia misogyny. Do remember it is also ok to withdraw. If someone stubbornly sticks with toxic views, you are entirely with your rights to ditch them

Share your message in as many forums as possible. Share articles & graphics on social media. Join local political groups, help distribute leaflets or raise funds if your health allows. Talk about your opinions on the ‘alt right’ on your blog or in your art. Make your voice heard in any way you can. Their is value in solidarity, it is massively comforting to know one is not alone. 

Last, but absolutely not least, do not forget about what’s happening at home. Post brexit Britain is no picnic; hate crimes have seen a 40% increase since the referendum. Our government is purposely defunding the NHS & cuts in benefits for the most vulnerable members of society are ongoing. There is work to be done  here too. Write  to your Mp about important votes & any issues you feel are critical. Apply all of the suggestions above when fighting on the home front. 

Finally, support local charities too. This month I’m turning my charitable attentions to Refuweegee. They are committed to ensuring refugees arriving in Glasgow receive a warm Glaswegian welcome. You can donate money or goods & even write a nice letter for our new arrivals. 

Go forth & fight the good, inclusive fight!