disability

Last night…

~ somethinginthewayshemoves

Yesterday I did a thing that I thought I could no longer do. Let me tell you, it felt fucking awesome. For the first time in more than a decade I hit a festival and I am going to tell you all about it.

Trnsmt Festival takes place on Glasgow Green in the centre of my dear home town. Back in my day the Glasgow fest to be at was Gig on the Green. In my youth I saw Feeder, Pulp, the Chilli Peppers, Foo Fighters, Travis and so many more on this big patch of green in the middle of the city. I loved those days of dancing, drinking and screaming out lyrics. Unfortunately, festivals had been added to the list of the things chronic illness made impossible.

Then came Trnsmt with its excellent accesible facilities and my beautiful sister with her VIP tickets. All of a sudden 41yr old, mobility impaired and pain inflicted me is back with the band(s). They put the effort in to make the festival as accessible as possible. With accommodations for hearing & sight impaired customers. Disabled viewing platforms with amazing views, accessible toilets that catered to all needs, free water taps to fill up and no queue sections at bars/vendors. There was an area for guide dogs to relax as well as a cool chill out zone for people who needed it. Blue badge parking & disabled entrance which cut the trek to the action was also available on request. Of course their were first aiders and medical assistance points. The accessible passes were easy to apply for. A quick online form, proof of PIP (if in receipt, passes were available with a short explanation of your needs without evidence) and Blue Badge number for parking were all that was required. Free companion tickets were available via the same process. I was able to enjoy the full festival experience whilst also having all my needs met. I can’t speak for everyone, but the organisers get a big round of applause from me.

Necklace – Topple and Burn
Sunnies – Where Light

As good as the accessibility was I was still grateful to have those VIP bands. The VIP area was a great staging ground for our day. We were able to sit down, eat and plan in comfort. The toilets in this area were also a huge step up from any porto loo. Extra bonus of separate VIP entrance & exit to avoid the crowds. All considered, the ticket prices aren’t that much more, I would definitely recommend. With the sun shining, music in the air and our free Prosecco in hand we headed into a day to remember.

First on our list was Wet Leg; a band my sis was dying to see. I thought I didn’t know them, but turns out they are big on Tik Tok and I already loved a few of their songs. My bestie and I thought they sounded a lot like the Riot Grrrls of our youth, but the kids were still loving them. After a cider on the grass and a lot of help getting back up again we headed to the King Tut’s stage. Comfortably seated on the viewing platform we bopped to CMAT and Self Esteem. Self Esteem was bloody good, definitely added to my Spotify likes. We could see the crowd demographic shifting to our age group as Maximo Park hit the stage for an energetic set. The cider continued to flow as we enjoyed Jimmy Eat world and then headed back to the main stage for the headliner.

The Strokes were superb. Classics mixed with newer stuff. An amusing jam whilst an amp was fixed. Some slightly odd banter and even a nod to Monty Python. I had missed the feeling of partying in a field with thousands of other people more than I knew. Watching the sun go down as your favs blast out songs you love is quite the buzz. I have so many amazing memories set to The Strokes, most of them with my sis and Pam. It was incredible to be making more with them.

The vibe at Trnsmt was just like the old days. Friendly, drunk and pleasantly raucous. I particularly loved all the body liberation on show. Folks of all shapes, sizes, genders and ages rocking whatever they wanted. All looking fabulous and giving zero fucks. I was also chuffed to discover that I haven’t lost all my party girl credentials. I can still guzzle the cider without embarrassing myself. Even better several pints and a tonne of water in, I was still able to go the entire day with visiting a loo. Anyone who has ever been to a festival (or whose every step hurts) knows that is the ultimate skill.

Dress – Simply Be

The day was all the better for being with my sister and best friend. They always help me without making me feel like a horrible burden. Plus of course, they are the fucking best fun ever. Here’s to accessibility and good times!

Oompah pah…

~ somethinginthewayshemoves

I returned from my German speaking adventure a week ago and am only now in possession of the spoons to tell you all about. I had such an amazing time that I wore myself out entirely.

We started with a few days in Munich. We got unbelievably lucky weather wise. The sun shone every single day. It was so warm that I wished I’d brought less cardigans and more floaty items. Don’t worry, I still put together some excellent outfits. We also saw many excellent sights and had a grand old time.

Our first stop was Munich’s old town hall. It is an incredible building located in a square full of beautiful architecture. The boy loved all the gargoyles and crazy creatures sculpted in stone. We enjoyed the sunny square whilst we waited for town hall clock to do its thing. Its thing was worth the wait. At the stroke of noon court characters began to dance and play the organ high above us. Royalty, drummers, jesters and even a joisting match spun above us as the gold clock glinted in the sun.

Munich old town hall and crowded square
He loved the hybrid creatures on this fountain.
ly posing in square wearing black jumpsuit

Just around the corner from the town hall is Munich’s old fruit market. These days the stalls have a variety of wares; hand made crafts, flowers, cheese, fruit and plenty of beer. The market is also home to lots of drinking water fountains and my nephew adored them. You can take a 4 year old anywhere in the world and they will be happiest playing with simplest of things. Thus he spent many a delighted minute emptying & refilling water bottles.

After a wander around the picturesque market, with our handmade delights purchased we found a lovely outdoor cafe to sample some German yums. The boy selected authentic Bavarian sausages and munched the lot. His Mummy & I played it safe with giant pretzels. Gran went for a truly a delicious apple strudel. We were mildly pleased with ourselves for navigating the German menu with the help of google. Even happier to receive what we had intended to order!

Our rooftop lunch spot.

We rounded off the square with stop at the the exquisite St Peter’s chapel. Although I am not Catholicism’s biggest fan, I do enjoy the beautiful architecture. My Mum, who is regular worshipper, took the opportunity to say a prayer. Meanwhile the & boy I lit a candle for our respective Grans. As we waited outside for my Mum the boy was overjoyed to meet a headless busker. Watching him come up with explanations for the man’s lack of head was exceptionally entertaining.

Our final stop in Munich was the Englischer Garten, an awesome oasis in the city. This park is the perfect sunny day outing. As you enter you can see people surfing on the man made river. The water moves so fast, watching folk brave the rapids is amazing. A few steps into the park there is the cutest little cafe, which we took advantage of. Refreshed, we ventured further and discover a fab play park for the boy to rascal. After a little rest for Gran and Auntie ly we continued on to admire ducks, pretty bridges and have a tonne of carry on.

Of course I spread some fat positive vibes.
The boy loved tricking me with the clear cola.

Munich is a handsome city. There was so much more to see, but we only had two days. We ate lots of yummy food and found the people to be really friendly. If you can catch the city in the sun even better. Public transport is abundant. If you’re struggling (like I was) street taxis are all over the place and I got Ubers really quickly when he weren’t near a rank. It’s fairly flat city which makes it easier to walk. I also found most places to have good accessibility. I’d rate it a good city for spoonies to get around.

On day three we were Austria bound on the train. Stay tuned for the next chapter of the adventure.

I was childishly amused.

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Caught in a trap…

~ somethinginthewayshemoves

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Don’t leave me this way…

~ somethinginthewayshemoves

Since we seem to be heading full steam into SUCK IT territory for the disabled & chronically ill I wanted to talk about my experience of covid. There has been an overarching theme of those with existing health conditions being dispensable from the start, but now it’s pretty much being explicitly stated by our leaders. I want everyone to know how frightening this is for those of us that so many are happy to sacrifice.

As a person with chronic health issues (arthritis, fibromyalgia, stomach disease, anaemia, PCOS) I took covid seriously from the beginning. Lockdown was a complete lockdown for me. I stayed at home. I had no visitors. All my essentials were delivered. The only contact I had with anyone was the occasional driveway visit. My sister or bestie would stand in my drive and I’d sit in my open from door. I didn’t touch another human being or leave my house for months. I had hospital stays without visitors, didn’t celebrate my 40th birthday and spent Xmas 2020 at home on my own. My lockdown stretched on further than the official stay at home orders. Since early 2020 I have spent the majority of my time at home and I have been scared since the beginning. I had no idea what covid might do to me. I’ve experienced catching bugs or viruses that were no biggie for others, but sent me to the hospital. Every time I heard of someone dying being caveated with they had existing health problems, I knew that could be me. This pandemic has always been an emergency situation for me & those like me.

I now regularly see family & one close friend. I wear a mask, sanitise, stay outside as much possible. If I must be inside I go to places that follow all covid precautions and I exercise extreme caution. Doctor appointments aside I leave my home about once a week. I still have everything delivered and avoid contact with those outside my immediate circle. I do home tests before and after I go anywhere. With a couple of exceptions a restricted life has become my normality.

I contracted covid 19 in oct 2020. At that point I was spending 99% of my time alone at home. I was seeing only my sister, mum & nephew and wasn’t visiting anyone indoors. I still managed to catch the virus despite none of the family I was in contact becoming infected. The acute illness was not severe. It lasted about ten days & felt like having a stomach flu. I had more gastric than cold/flu like symptoms. My cough was very mild. I lost my sense of smell & taste. I felt terrible, but I didn’t require any medical attention. In the following weeks I really struggled with breathlessness & racing heart but assumed this would pass. It did not.

15 months later I am still dealing with long covid. My already limited mobility has been massively impacted. I become breathless even moving around my own home. I have to sit even to brush my teeth, make a cup of tea etc. I have overwhelming fatigue, brain fog and widespread pain have markedly intensified since having covid. I experience palpitations and chest pains on the slightest exertion. My heart rate regularly climbs to heights whilst trying to complete the most basic of tasks. I have been hospitalised on 4 occasions because my heart rate would not slow down to an acceptable level. Drs can monitor and treat symptoms, but they know almost nothing about long covid. They can’t tell my why these symptoms persist or if they will ever go away. My chest x rays are clear, my heart is not damaged. The tachycardia & breathlessness are a covid mystery.

A frightening and very real mystery. It is scary to feel as though your heart is going to burst out of your body. Or to be so out of breath that your head spins and chest burns. It’s a million times more terrifying to be told that the experts have no idea why it is happening or how they can make it better. Fear has been common thread. 2021 has been a really hard year for my health. All of my existing symptoms have worsened. The added problems have caused me serious problems and I think I have picked up every cold, stomach bug & infection going. All of which has been alarming. I’m worried that the next illness or flare might be the big one. I’m stressed about all the work I can’t do and the financial repercussions of that. I am chilled at just how little I am now able to do before becoming too exhausted/sore/dizzy/breathless to continue. Most of all I am terrified of what could happen if I get another variant of covid.

I am fully vaccinated (& boosted). I have masks galore, anti bac in every bag & pocket. I still leave parcels & deliveries by the door for an hour before I touch them. I bought a device to sanitise my phone. I’m never in crowds. I rarely go out. I’m acutely aware that I was being even more careful when I caught covid the first time. Every single aspect of my life has been affected by this pandemic. I know I am not alone. Most people have sacrificed. Many are in the same boat as me & others in far more treacherous vessels. I understand that this has been a collective trauma that everyone is eager to put behind them. I just wish more people would understand that this isn’t over yet.

When you justify the need to ‘live with covid’ by saying that most healthy people only experience mild symptoms I am the exception in that sentence. People like me will die or be permanently disabled if we ignore how dangerous covid still is. I understand that you want your life back. You want to stop worrying and missing out. I do too, but if we throw caution to wind now it’s not without consequence. If we pretend that covid is just another part of life we are throwing the sick, disabled, old & vulnerable to the wolves. I believe that those lives are worth as much as any other. Our needs are already ignored in so many ways, please don’t abandon us altogether.

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If I had a little a money…

~ somethinginthewayshemoves

In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.

It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.

So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.

Travel

I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:

  • Hospital App – £11.80
  • Visit Bestie – £11.30
  • Vet – £8.60
  • Pick up Bronan’s Prescription- £8.80
  • Post Office – £8.60
  • Work Meeting – £22
  • Weekly Total – £71.10

Pain Relief

Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.

  • Heat Pads – £5 per 3 pack.
  • Tens Machine – £65
  • Tens Pads – £5 per 10.
  • Long Hot Water Bottle – £20
  • Microwaveable Heat Pouch – £15
  • Dragon Balm – £2.50 a jar.
  • Lidocaine Patches – £60 per 10 pack.
  • Vape – £35
  • Cbd Oil – £15 per 50ml.
  • Freeze Spray – £1
  • Paracetamol – 56p per 12
  • Massage – £70 per 60 mins.
  • Kinesiology Tape – £5.50
  • Yoga Mat – £20
  • Foam Roller – £12

Disability Aids

I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.

  • Walking Stick Ferrule – £5
  • Easi Reach – £10.99
  • Easy Open Food Containers – £25
  • Jar Opener – £5.50
  • Easy Veg Chopper – £20
  • Multi Bottle Opener – £5
  • Auto Can Opener – £15
  • Lotion Aplicator – £8
  • Walking Stick Seat – £25
  • Sock/Tights Aid – £8
  • Bra Angel – £17
  • Hook/Zipper Assist – £6
  • Suction Grab Handles – £28
  • Shower Seat – £35
  • Wearable Tens Holder – £20
  • Press on Lights – £10 per 3 pack.

Services

There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.

  • Grass Cutting – £45
  • Hedge Cutting – £60
  • Weeding & Garden Tidying – £100
  • Wheelie Bin Cleaning – £8
  • Window Cleanimg – £8
  • Bathroom & Kitchen Deep Clean – £175

On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.

Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.

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The Fear…

~ somethinginthewayshemoves

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

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A privileged person’s guide to privilege…

~ somethinginthewayshemoves ~ 3 Comments

I will never understand why the concept of privilege is so offensive to so many people. Mostly, let it be said, privileged people. It is beyond me why it frightens people to look at the privilege in their life & say yes, that has helped me and no, I did nothing to earn that aid. ‘Owning your privilege’ is merely acknowledging your good fortune. Privilege does not make you bad a person. However, refusing to countenance it’s existence makes you a bit of a dick. Since no one wants to be one of those, let’s go through this together.

If you belong to a group who hold power in society, you have privilege. If you belong to a group that is considered the default in society, you too have privilege. The fact that you do not face institutionalised discrimination just for being who you are is a huge advantage. Being born white, straight, cis, able bodied are all privileges. You will not face prejudice or disadvantages for merely existing in your body. Life is not a level playing field; some of us are sprinting before the starter’s pistol sounds.

Part of this kind of privilege is the fact that you did nothing to earn your advantage. Thus, many people will rail against the notion that they should have to apologise for holding it. Well, no one is asking you to. You are not responsible for the fact that you are white or male or cis gendered. No one is critising you for being any of these (or any other privileged) things. The problem comes when you refuse to own the benefits you have gained from life’s lottery. When some people have to struggle just to reach the starting line, ignoring that becomes offensive. We do not choose what privilege we come into this world with, but we do choose what we do with it. Acknowledge the factors beyond your control that eased your path. Then use your position to clear space for those without your advantages. 

Some of you may be thinking I have one of those privileges you speak of & my life is hard, so I don’t feel ahead of the game. Privilege is not a guarantee of fabulous life. You could be a straight, white, cis, able bodied man & still have terrible things happen to you. The privilege comes in the fact that they did not happen because you were straight or white or cis or able bodied or male. No matter your situation the abscence of the barriers that come with being a minority are still always advantageous. 

It’s also important to remember that it is possible to have privilege in one area & none in another. For example I am white, from a comfortable back ground, well educated, cis gendered & straight passing. I am fully of aware of the advantages my parents have given me and of the discrimination I have never had to face. I hold a lot of privilege. However, I am also disabled, I’m female & I’m fat; all of which incur significant hardships. My daily life is a slog. I do face discrimination & I am discredited, but I’m still lapping my trans, BAME, LGBTQ, impoverished (& so many more) brothers & sisters in the race of life. 

So, privilege isn’t always cut & dry. It does not translate to a perfect life. Nevertheless, it’s a head start. It is a whole bunch of problems you’ll never have to even consider. Privilege is being able to dismiss that the premise is even real. 

In keeping with my entreaty that you use whatever privilege you have to help dismantle the current societal hegemony I would encourage to read these voices on the topic.

Lori Lakin Hutcherson

Strong in broken places

Taking up too much space 

That crazy crippled chick

The Second City

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. 

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. 

  

Spoonies explained..

~ somethinginthewayshemoves ~ 2 Comments

I used a term in a post last week that garnered some questions. Spoon theory is a model I am incredibly familiar with, but I forget that not everyone is. So, I thought I’d give the theory & it’s origins.

The term was originally coined by Christine Miserandino in response to a friend’s question about what having lupus feels like. Miserandino explained that the conversation took place dinner & she used what she had to hand in her metaphor. Hence, spoons became her unit of measurement. She asked her friend to consider that each daily activity (including the very basic, washing, dressing, eating) required a certain number of spoons (energy)to complete. Whilst a healthy person will usually have unlimited spoons, a person dealing with chronic illness or disability will have varying quantities of ‘spoons’ each day. As a result a chronically ill person must carefully calculate a day’s activities in advance in order to avoid running out of spoons before the end of the day. When a person has used all their spoons they are no longer capable of much more than resting. So, in effect, life with a chronic illness becomes a constant balancing act of tasks the must be done against spoons available to do them.

There you have it, an introduction to spoon theory. I am aware it’s not a particularly cheery topic, as a sweetner I offer you some cute pictures of my darling boy, Bronan.

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