The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick

We’d all love to see the plan…

Watching the seriousness of the corona virus sink into the general conscious has been a very strange experience. For the first time I am seeing healthy people get an insight into my life; en masse. It’s not pretty for anyone.

I want to preface this by saying this absolutely not an ‘I told you so’ (unless you’re a Tory, in which case, we did tell you so. Please do better). I really don’t want to see anyone suffering. I take no pleasure in the fact that a whole lot of people are about to share in the injustice & indignities that disabled people have grown accustomed to. It saddens me, but I suspect an awful lot of people are going to discover what we meant when we said this could happen to anyone. No matter how fit or successful, most of us are much closer to needing a safety net than we ever imagined before the fall.

Grlclb tories kill t shirt

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Anyone who’s ever had long term health issues already knows that most employers do not give a shit about their well being. The chronically ill are fully aware that our government couldn’t care less if we die. I know it is hard for able bodied, healthy people to grasp, but the powers that be are not concerned with making sure you can survive. It matters not that statutory sick pay isn’t enough to live on or that some won’t even qualify for it. Big business will prioritise their profit before your health. They’ll fire as many as needs be to plug a cash leaking hole. There will be backlogs because so many desperate people require help. The DWP & all the other faceless government machines will treat you like a subspecies. Boris & his buffoons don’t care if you can’t pay rent or feed your family. The underfunded NHS will buckle under the increased strain. They’re already telling us to prepare for our loved ones to die. Let’s be honest, most of the cabinet would be quietly delighted if the vulnerable are wiped out.

As always, those with the least will suffer the most. The rich will access tests & treatment that most of us cannot. They can afford to hole up in safety & comfort. They will profit from this global crisis. Private hospitals renting beds to the NHS, politicians insider trading, corporate bail outs for tax evading entities. It has to stop.

Reina sultan tweet

It’s already evident that the every day working people are relying on each other. The community spirit is admirable. I am so glad that people are looking after each other. However, it’s time we gathered that solidarity for change. Huge, impactful societal change. We must organise. In times of crisis it becomes clear that it’s the bottom of power tree that actually make the foliage bloom. Please let this radicalise you. Find the grassroots social movements in your area and get involved. Write to your representatives. Join rent strikes, sign petitions, vote when the times comes. Remember who stood with you during this pandemic. Let’s start elevating and rewarding the people we can trust to strengthen our safety nets.

Protest sign with capitalism kills more than corona virus

* you can buy this amazing t shirt here. (Not an ad)

Power to the people…

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!