My Bones Are Killing Me!

So this week’s entry is the result of my latest ME and chronic pain flare-up. I’m sure so many will identify with this feeling when you’re in so much pain you’re climbing the walls. 

I’ve been listening to the fabulous Kae Tempest after watching their Glastonbury set and felt very inspired. I used to be in a weekly experimental writing group called ‘Scribblers’ run online by the super-talented Kate Hull Rodgers as part of Stepping Stones Théâtre, a creative arts company supporting mental health. I never took part in the poetry sessions fully but I took her advice today and used words as a distraction. I even had fun!

My bones are killing me!

Lying on a bed of nails

My nerves jar hot and scream

Heat pads, codeine, Gabapentin, Morphine

Spotify on loud/repeat

Distracts temporarily

An unread novel

Distracts temporarily

A notebook, my writing

Distracts temporarily

Yes please: Another cup of tea

Distracts temporarily

Lying on a bed of nails

My nerves jar hot and scream

Heat pads, codeine, Gabapentin, Morphine

Wordle and a crossword 

Distracts temporarily

Stretches, my physio 

Distracts temporarily

Up on tiptoes, left leg, right leg 

Distracts temporarily

And another cup of tea

Distracts temporarily

Lying on a bed of nails

My nerves jar hot and scream

Heat pads, codeine, Gabapentin, Morphine

Talk or text with friends online

Distracts temporarily

My kids come up and talk with me

Distracts temporarily

Another show of numb TV 

Distracts temporarily

And another cup of tea

Distracts temporarily

Lying on a bed of nails

My nerves jar hot and scream

Heat pads, codeine, Gabapentin, Morphine

Firm letter to my MP

Distracts temporarily

Watch news on social media

Distracts temporarily

Support our friends we’ve never met

Distracts temporarily

Share far and wide their world’s on fire

Distracts temporarily

Lying on a bed of nails

My nerves jar hot and scream

Heat pads, codeine, Gabapentin, Morphine

Family’s warm, dry, housed and fed

Distracts temporarily

Propped up soft pillows by my head

Distracts temporarily

Write a poem like my tutor said

Distracts temporarily

Count my blessings, meditate

The drugs will work eventually

Lying on a bed of nails

My nerves numb and serene

Heat pads, codeine, Gabapentin, Morphine

Day 625 of Israel’s Genocide of Gaza

 Today is Day 625 of Israel’s genocide of Gaza. I feel like I’ve been holding my breath ever since that day back on October 7^th 2023 when Israel upped its apartheid on the people of Palestine and began their genocide in earnest. I’d been familiar with the apartheid there but knew a very simple view of the political situation.

Earlier that day, Hamas had killed over 1100 Israelis at a music festival. What wasn’t broadcast initially was that this was a retaliation after recent murders of Palestinians by the Israeli Defence Federation (IDF) as part of their continuing seventy five years of apartheid against Palestinians. The Nova music festival was being held on desert land outside the Palestinian concentration camp that the Gaza Strip had now become that Israel claimed was Southern Israel. The IDF retaliated and it seemed as thought there had started a war. And at this point, news broke into the mainstream and we could not we would not look away. As Israel is illegally occupying most of  Palestine this was merely the occupied fighting the oppressor. These were not the optics the Israeli government wanted. 

 We are learning that the USA and Israel are closely alligned and millions of dollars goes into feeding the media machine each year. Just look at The New York Times reports in comparison to The Guardian in the UK. There seem to be heavy restrictions on the way journalists are allowed to report. Many people no longer watch mainstream news unable to stomach the pro-Israeli tightrope walk that goes on in the UK. But many other countries find this too.

 

Like so many, I began watching journalist accounts on Instagram from Palestine; such as award winning journalist, Bisan Owda, 

 https://www.instagram.com/wizard_bisan1 

to ensure honest updates of the continuing genocide in Gaza. Her reports are dependant on Israeli allowance of internet connection, her most recent posts in May 2025 told us that Israel are only letting a handful of aid trucks through to deliver food which is now being distributed in Aid Distribution points run by the IDF where people queue each day, are turned away, some are shot and maimed or worse, killed. Bisan tells us 'this is a drop in the ocean' that’s being let through compared to the desperate need of the starving population and illustrates again this planned starvation and genocide of the Palestinian people.

https://www.instagram.com/owenjonesjourno?igsh=MWN4MThlaDRya3Q5Mg==

Certain journalists we’ve come to rely on such as Owen Jones are also shouting out the truth (into a void it must seem at times) on social media and with The Guardian. Owen Jones examines media reports and shares those that show Israeli bias and not impartial reporting. His interviews and guest appearances are the wake up call anyone needs who is not already angry and sick at the reality the West needs to wake up to.

 

Back in November 2023, our very own Sheffield City Council was the first in the UK to vote for a ceasefire in Gaza. While it was lauded as a bold act of solidarity at the time, the uncomfortable truth was that Sheffield was and remains home to arms manufacturers complicit with the international weapons trade. Sheffield folk have been protesting against this for years. But it is only recently that this information has been placed in the public domain. Protests against them continue. BAE Systems are directly implicated.

 

In February 2024, the International Court of Justice (ICJ) declared Israel’s occupation of Palestine ILLEGAL and that Israel were committing apartheid in their claims on Palestine and the treatment of Palestinians and had been doing for the past seventy-five years. Their occupation is illegal and has been for seventy-five years.

 

Israel has ignored every directive from ICJ then and since, increasingly occupying Palestinian land to increase the land given to them in 1947. (My post on the history will follow).

 

Francesca Albanese is an Italian expert on human rights and a legal scholar. She was appointed United Nations (UN) Special Rapporteur in the Occupied Palestinian Territories on 1st May 2022 and is the first woman to hold this position. This was renewed for another three year term on 1st May 2025. 

Israel's actions in Gaza, according to a report by the European Union's Domestic Corps, may have violated the terms of the EU-Israel Association Agreement. This is still under investigation. If this is proved to be true, the agreement will be null and void, and could include full suspension of trade between the EU and Israel or freezing Israel’s participation in EU programmes.

 

On May 1^st 2025, World Health Organisation (WHO) Head of the Health Emergencies Programme declared this as the ‘Gaza abomination’, stating that WHO are now complicit in the starvation of the people of Gaza as they have not been able to stop the Israeli blockade of food aid into Gaza. Palestinians are now starving to death due to this military blockade. Flotillas and marches to Gaza which attempted to open a humanitarian corridor for the trucks to be permitted access have been consistently blocked by Israel and Egypt.

 

There are protests across the world every day. There are boycotts of stores, restaurants and supermarkets with links to Israel, the boycotting of goods in supermarkets that are from Israel, we ring up and ask supermarkets not to sell Israeli goods. We march through the world’s city streets, we display Palestinian flags and we wear Palestinian colours. We send what we can to Palestinian families, Medical Aid to Palestine (MAP) and the great number of charities supporting the Palestinian people. Palestine is at the forefront of so many people’s minds. But the UK are still so complicit. 

The BBC has consistently broadcast biased pro-Israel coverage. Our government sells arms to Israel and even trains the IDF soldiers. It’s sickening. We even have a situation at the moment where a group called Palestine Action who organise marches and events to show support of Palestine is now being discussed in government as if they should be called a terrorist group! Kim Johnson MP was opposing the potential proscription of Palestine Action in parliament yesterday (24.06.24) stating that of course, no, they are not a national threat. They daubed paint on a couple of fighter jets which is criminal damage but not an act of terrorism.

 

Roger Waters explained it perfectly:

 

“There is the oppressed, and the oppressor; the oppressed are the Indigenous people of Palestine, the oppressor [is] the settler Colonial visitors from North America and Northern Europe. The oppressors are murdering all the oppressed people so they can steal their furniture, and their houses, and their olive trees, and their hills, and their water, and their land, and their birthright."

 

And today 25th of June 2025, the United Nations warns that the children of Gaza may begin to die of thirst amid Israel’s 100 day fuel blockade. This is insanity. 

 

To date:

Over 62,000 people have been murdered including 16,000 children one in five children.

We will now be looking at a death toll in the region of 300,000 taking into account the bodies of men, women and children still under the rubble, and of those injured and mutilated who will never recover, become ill and die through infection and lack of food, water and medical care. 

 

Israel cannot continue alluding to killing members of Hamas hiding in civilian areas. Civilians are never legitimate targets. Israeli genocide is happening right now, livestreamed killing, torturing starving, bombing, shooting. However Israel does it, by whichever means, it's genocide. 

 

"We know too well that our freedom is incomplete 

without the freedom of the Palestinians." 

Nelson Mandela  

International Day of Solidarity with the Palestinian People, 

Pretoria, South Africa; 4th December 1997.

 

 So what can we do? We are chipping away and while sometimes it feels desperate, keep going. Palestine needs your love, support -financial and written, and we must bear witness to the atrocities that continue every hour and every day. For example, I do what I'm able to do: I have been writing letters, emailing MPs, signing petitions, writing more letters, wearing my keffiyeh on the back of my wheelchair, contributing to forums, discussions, sharing checked and verified information on social media. It’s not huge but all this tiny actions add up and apply pressure.

While my health keeps me from most of the street protests,  I hang a Palestinian flag outside my door to show solidarity with my Palestinian neighbours. It's proving to be quite the educational talking point for neighbours, window-cleaners and people delivering food (groceries) and parcels (usually books). Conversations are started as a result of seeing someone wearing a  keffiyeh (mine is on the back of my wheelchair)  and I sometimes share in those conversations. Be creative! Wearing a t-shirt or watermelon badge is just an easy way to tell each other we are fighting this together. Protests are the way forward and local groups in every town advertise weekly protests online.

All we can do each day is make sure that we do all we can to support  the people of Palestine and fight in our own tiny way against this continuing genocide. Palestine have been fighting this for 75 years. We can all do our bit.

Is it my ME or could it be something else? We follow the clues ...

 

Life has thrown a few sticks of dynamite my way again. But by overdoing it one night my flare-ups are consistent in terms of time but I’m very rarely knocked sideways quite so spectacularly.

A weekend in late August included going to see The Bowie Contingent at a local venue, The Cutlers Arms. They were amazing - the lead singer makes each song uniquely his but with Bowie-isms thrown in. So talented and then a sleepover with my dear friend, Chloe. I felt almost normal! CBD top ups got me through and we were given seats just by the stage so we felt safe too. I stayed up past midnight, drank my weight in herbal tea, then slept. I don't remember Chloe going home but we had breakfast and i seemed quite lucid. How does that even happen? I then slept all day Sunday and most of Monday. No alcohol so AF beer for me but I survived being sober. Trade  off to minimise seizure risk, trade off  to minimise pain.Trade offs are how it is now. I almost plan for it.

On Tuesday, I was booked in for an EEG to investigate my seizures a little bit more. Imagine, if you will, that Hammer Horror film where the guy’s head is wired up to a machine. Add in the spiralling lights from The Prisoner that would cause No. 6 to pass out and that’s pretty much what my afternoon was like.

It brought on seizures lots of little ones then quite a long one. Once I was unwired I apparently went into the waiting room telling anyone who’d listen ‘it was awful - I just need to get home!’ and my mum led me away from a rather horrified queue of patients. 

I slept Wednesday and Thursday - I annoy myself on days like these as I get dressed and come downstairs to sleep all day as a kind of normality. My flare-up normal, I suppose.

I have felt super-groggy since Tuesday, like my brain feels fried and I feel really heavy (more than usual!) so it has been ‘Tools down’, sleep and Netflix.

Friday I went for coffee with Mum and our friend Helen at Cuccini’s (my local coffee place) where I do feel kind of safe - I’m not going too far at the moment. I was there in body but my brain was still wired up in that EEG room. Brain fog was off the scale.

Brain fog can make you feel as if your processes of thinking, understanding, and remembering are not working..

It can affect memory, including the ability to store and recall informationuse and understanding of language

• ability to process and understand information
• visual and spatial skills for drawing, recognizing shapes, and navigating spaces
• ability to calculate and work things out
• executive functioning abilities for organizing, solving problems, and planning

If one or more of these functions does not work effectively, it can be difficult to understand, focus, and remember things. It can lead to stress and mental fatigue.

Medical News Today

Claire Sissons June 12, 2019

 

 I slept until late Saturday and prepped lunch for my two of my closest friends - or should I say my brothers? They are part of my chosen family. We just chatted all afternoon and once we cleared up and they’d headed home I curled up to take more Gabapentin and rested. I’m avoiding my morphine and cbd just in case they’re adding to my seizures. I’ve been asking Dr Google and according to her, there may be some link to my hormones, as I’m in peri menopause which can start seizures. A drop in oestrogen can cause them.
 
But there is also a theory that some anti-depressants can cause them. There doesn’t seem to be a list of which ones so I need to ask about the safety of still taking mine.
With all this in mind, I also need to consider my use of cbd oils as there are possible links with, not the cbd itself but the chemicals that are added to some brands. This can also be through taking street versions and non-medical marijuana as chemicals are sometimes added to improve the taste. So by combining all my meds with cbd, this heady mixture might be an issue.  

Here I am coming back to my blog a month later. One of my longest flare ups. But I'm back and functioning at a rate that works for me. Slower than I'd like, my wings are clipped but the silver lining is that I've watched the complete boxset of Lucifer. Time will tell. Until my results come back, I'll be none the wiser. But wheels are turning. I'll know soon enough.

This is the Self Preservation Society: A Crash Course In Surviving Life with Chronic Illness(es)

One of my dearest friends travelled up to spend the week with me and to help me. At the time, I thought she had come for a holiday - but it turned out she had plans to get me out of the house, organised, get us all out for a day out and help me sort the house and food out. She was here to look after me. I'm not one for being looked  after. It makes me feel like I am less than who I was, which even typing this my brain is screaming of course you're less than you were - you can’t teach any more, you can't run for a bus, you can't go kayaking or tree climbing, abseiling or even do the gardening any more.

So my nearest and dearest over the years have trodden very gently around this notion of help where I’m concerned. I once couldn't cope with the idea I needed help. Even though everyone needs help sometimes, mine was compacted by the feeling of  'I am not enough.'

We are in a better place now. And by we I mean my circle. Even last year when I discovered changes in my health, I told noone until my new condition became too hard to hide that friends independently turned up, usually with cake to sweeten the event, and had stern words with me. I had to keep them up to date with changes from that point on. If not for me then for my lads. My circle needed to be kept informed so they could support the lads and me. I liked that better. It still sits awkwardly with me. I'm not quite there yet.

Another friend asks me how I am twice. The theory behind this is that we all answer ‘Fine!’ as a knee jerk reaction - it is only after a pause and a second direct questioning that we will open up to those closest to us. It kind of breaks a pattern, I guess.

Generally it works. Even if she gets a 'Yeah well, you know, just the same really' before a launch into distraction question 'Have you seen the Handmaids  Tale' etc, she knows she's half way closer to my truth.

I've had to do a lot of work on me. I've been a work in progress all my life and so I will always be. But not only in terms of my physical health. I've been working on my mental health - depression and anxiety are with me constantly - but also my psychological health, my sense of self, my ego - the other bits that I never really thought abought before. And my spiritual self. Catholic to Anglican to Buddhist to Humanist and all those colours threading through me now to create a religion all of my own. I’m reading my tarot cards daily. A friend of mine helps me by reading my astrological charts. They help me make sense of my world, just a little each day. My son, a physics and maths genius (he’ll kill me) has told me the probability, likelihood and something else (I forget) of it working is very unlikely. I guess I’d be described nowadays as ‘Spiritual But Not Religious’ (SBNR)

Another friend rang me just before my summer holiday and noting the despair in my voice, her spider senses tingled and she turned up - we got the house, laundry and packing organised - she really came to my rescue.

Routine is helping me. It helps with medication, regular movement, regular eating and drinking, keeping on top of things at home and also keeps me on track towards deadlines. Not all them but I’m trying.

I finally took early retirement from teaching 4 years ago at 44 and was lost. I have relied heavily on meds and cbd over the years and as my reliance and tolerance of meds change, my meds have to change. It’s a constant balancing act of tolerance, reliance, efficacy and then change. But I have balms, oils, lotions and potions and I’m slowly learning the wisdom of resting, repairing and recuperating sometimes many times on a daily basis. I am finding a way to manage my illnesses but I take it hour by hour when I need to. 

I have a routine everyday and it’s fine if I don’t do everything on that list. My purpose is always changing and I’m always trying to help others, read, write, listen to music, watch films and box sets at points in the day. But not all at once. If I manage one thing, I give it a tick ✅.

There is always a way forward. Always.

Through the night in A&E: Rotherham Style

Currently, the government are doing their damnedest to reorganise the NHS taking away local powers and bring healthcare in the UK to its knees. They've already cut budgets over and over again for a decade so the NHS is not running at its best, rather limping on as best it can with its staff holding it up by their fingertips. Without local management of the NHS, it is likely that our government will use the new structure to bring in privatisation by the back door - Tory's friends' companies being drafted in to do things without the local insight to ensure a good fit. I dread to think.

The British Medical Association (BMA) has “overwhelmingly” voted to oppose the Health and Care Bill ahead of its third and final reading today. The group, which is the main group representing doctors in the UK, called on MPs to block the bill, warning it poses “significant risks” to the NHS.

OpenDemocracy.net 

As I was blue lit up to hospital to see what on earth was happening to me ( my complete short-circuiting if you remember my last post) I was constantly put at my ease even though I wouldn't lie down and insisted on sitting in a seat - panicking my little socks off quite frankly. The paramedics were so well trained and chatted endlessly to me taking ECGs and blood pressure regularly. One male, one female, both utterly brilliant as nerves got the better of me sending my worry into overdrive. They read the room and kept reassuring me. I couldn’t thank them enough and apologised for the drama in the middle of a pandemic. It’s the response they were hearing a lot from Rotherham folk at the time not wanting to add to the NHS burden.

I was wheeled in to A&E into the fast track section, meaning my need was more urgent so would see the triage nurse slightly quicker than the non-urgent cases. A couple of hours later, nothing. The place was so busy and there were many patients in my section. 

Life in A&E is just a sight to behold. And that night was no exception. I saw vulnerable people brought in, and regardless of illness, addiction or injury, despite the behaviour of some patients as they worsened through fear, pain or need, the staff in that building treated each person with the utmost respect and kindness. I watched such inspiring, compassionate workers sit with vulnerable people such as  a young man in crisis who a nurse addressed by name and quietly talked him down from a point of extreme distress; then a teenager with a footballing injury to the ankle shouting out in pain for help, being moved to a bay (which were very rarely free) with his mortified mother apologising for his outburst and being reassured that people in pain react very differently and sometimes out of character. This nurse switched from one to the other seamlessly as he moved them to a side bay. I saw a girl brought in after being injured at a party incredibly distressed and having taken substances unknown was out of it and noisy. A doctor walked swiftly through and sat down with her, calmly extracting some basic information about what she had taken and planning next steps. Elderly patients were regularly chatted to and gently encouraged them to contact family members who would need to come to the hospital. 

It was a delicate dance of kindness, experience, determination, teamwork and community while still giving care, love and respect to their patients. Yes of course there were moments of chaos as new cases were brought in but the way everything settled again was reassurring. 

When I was seen by my 12 year old doctor (just kidding - he was about 26) he was also incredibly patient and respectful. I'd already expected a more frazzled consultant but if he was, he hid it well. Because I was frightened and convinced I’d had a brain tumour or a stroke thanks to my appointment with Professor Google, I initially told him exactly what I thought had happened, me of course being the expert of me. By this point I’d had bloods taken, regular blood pressure and temp checks all the time sitting in a cushioned hospital wheelchair - you know the ones you stick to - and feeling exhausted with zero sense of humour. I’m not even sure I was fully awake even though my eyes were open so I can't recall my tone or delivery of this outpouring. The rest of me was numb. The doctor listened patiently and explained he was trained in neurology and found my case fascinating. (Do I now add 'fascinating medical condition' to my dating profile?!) I was impressed with his cool dismissal of my many Professor Google theories in a dry yet reassuring tone.

I was to stop Nefopam immediately. That and the Oramorph were reacting together. I would possibly experience nausea, anxiety, panic attacks, and continuing tremors which was going to be fine and would not cause lasting damage. I would notice them lessening but they were to continue for some time. A appointment with Neurology was booked for me in August.

This doctor really knew his stuff. Of course he did. He'd sent me for every test possible before he explained what was going on. He'd done this at 2.30am incidently. I find it difficult finding my glass of water at that time in the morning yet he'd sifted through god knows how many possibilities to find my best fit. I was having myoclonic seizures and that none of my results pointed to epilepsy or the onset of a stroke. The doctor explained how they can be a part of ME. I went home reassured. I too, had been talked down from quiet hysteria, soothed, educated further about my illness and treated with a no-nonsense kindness which we’ve all come to know of our A&E over the years. 

Our NHS is incredible. We must treasure it. Healthcare for all is essential to a civilised society. And while the government continue to threaten its very existence, privatising by stealth and distracting the public away from these essential discussions, fights, protests and petitions - all the while pushing for the UK's wants and needs to be overturned - I wonder how we’ll survive without our NHS? We all find ourselves vulnerable sometimes. We all get older and more frail if we're lucky to make it that far. Just food for thought.