I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.
On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.
I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.
I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.
My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.
For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.
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Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.
That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.
As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.
And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.
My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.
That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.
When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.
It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.
I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.
The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.
It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.
This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.
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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.
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.
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.
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I’m utterly disgusted at the election results. Beyond that I am saddened & scared. English & Welsh working class voters supporting Tories is incomprehensible. To sell out hungry children, homeless & disabled people for Brexit is vile. The future looks terrifyingly bleak. Our NHS is in real danger & the most vulnerable people in our society are likely to persecuted further. I am grateful for the limited protection being in Scotland offers me. It has never been more clear that we need to be free of this rotten union. My heart goes out to all those who fear what the future brings under another Conservative government. More than ever we have to do what we can for those who will be left in need.
I know lots of you have election fatigue. Our political landscape seems desolate. Truth & right & consequences appear to have become blurred. I understand if you are sick of it. I get it if you feel like you can’t make a difference. However, this election is literally life or death for many people. Your vote matters. Please use it.
I’m making a genuine plea for myself and for societal good. I beg you, don’t vote Tory. Brexit is and can only ever be a disaster. The NHS is on its knees, food bank usage has soared, homeless people are dying on our streets, child poverty continues to rise. The most vulnerable members of our society are being crushed by the conservative government. The savaging of our welfare system is purposeful & ideological. It is not possible to opt out of sickness, unemployment or ageing. Even if you vote purely for your own well being, the Tories are not in your corner. You never know when you may need the services & rights they are systematically destroying.
You have to look beyond the headlines & media smears. Corbyn is not an extreme left maniac. He has a fully costed manifesto of common sense labour policies. He wants to create a fairer society for all. He’s fighting for wages you can live on, a roof over everyone’s head & food in our bellies. He wants the incredibly wealthy to pay their share (at a rate that will not make any significant difference to their lives). The labour manifesto will secure our health service. Corbyn is not perfect. Frankly, I have major issues with his views on Scotland, but he is our best bet. He is principled man who has been consistently on the right side of the fight. He is trying to improve life for everyone.
I ask you to approach this election like a bus journey. If there isn’t a direct bus to your exact destination you find the next best option. You get the bus that takes you as close as you can get. A vote for the conservatives will only drive us into a ditch. Liberal Democrats have already shown us what they do with power. We have to be tactical. Vote for Labour or whoever can beat the Tories in your constituency. Only opt for other parties in areas where it can not benefit the conservatives.
We have a chance for real change. Please don’t let it slip away.
Today is World Suicide Prevention Day. It’s a wet, grey day & my mood is bleak, so it seems like an apt day to talk about suicide. Although, to be honest I want you to do more than talk about it.
Suicidal ideation impacts the lives of more people than you would imagine (1 in 5). It’s not rare for a person to reach a point where they are so desperate that they just don’t want to continue. In my experience those thoughts are insidious. Once you have seriously considered ending your life, it enters the sphere of available options. So, whilst I absolutely do not want to die; I can’t deny that occasionally at really bad times ‘kill myself’ would be the last entry on my list of possibilities. What makes it a remote last resort rather than an actual risk is a combination of factors. People love me, I love them, there is joy & purpose in my life. The only reason I can recognise & enjoy those factors is years of intensive support from mental health professionals. I am grateful for the people who stood by & helped me access the treatment I needed because without that professional intervention, I would certainly be dead.
So, yes, I do want to us all to talk about this. I want to break the taboo. I want people suffering to not be silenced by shame. It is important that you listen to loved ones in trouble. It matters that you care, but what is even more important is that there are effective mental health services to seek help from. Talking & listening isn’t going to save anyone unless it’s backed up by solid treatment. In short, we need better mental health services.
There is no point in asking people to reach out for help when none is available. A cup of tea & chat with a friend is nice, but it will not solve the underlying issues that lead to suicide. We need to be able to offer people more than a 6 month waiting list for a hand full of CBT sessions. When your loved ones tells you they want to die, you should be able to take them to a dr & get them immediate help. Instead the current response is often no beds & here’s a crisis team number.
I want you talk about suicide. I want you talk about mental illness. I also want you to do more. Don’t vote for people who will continue to decimate the NHS. Find out how the mental health services are performing in your area. Write to your Mp/Msp about provision of those mental health services. Sign petitions. Write to newspapers. Share your experiences. Do everything within your power to raise the profile of mental health services. We are failing really vulnerable people everyday. We beg them to ask for help & then tell them none is available. If you really want to help those struggling with suicidal thoughts, you have to do more than talk. We have to fight to give them another credible way to end their pain.
Anyone who spends any time on social media will have become familiar with the term triggered. Over the last few years it has entered the public lexicon. Unfortunately, it’s meaning has been incorrectly implanted in the public consciousness.
Triggered is actually a psychological term usually related to PTSD. A trigger is an external stimuli that produces a very uncomfortable emotional response; most often panic attacks or flashbacks. However, varied symptoms can result from the triggering of a traumatic memory. It absolutely does not mean offended or hurt. I’m sure most people will have come across the correct explanation of the term. I have certainly witnessed many try to explain why using the term as an insult or a vehicle for mockery is not ok. Yet, the misuse continues. It occurred to me that perhaps what is needed is an accurate representation of what happens when a person with PTSD is triggered. Maybe if people understood the reality they wouldn’t throw the word around so carelessly. So, I thought I would share what triggered means to me.
Whenever I have been pregnant I have been unable to wear my regular perfume. I wear the same scent everyday in life, but some weird olfactory sensitivity means during pregnancy it makes me nauseous. Thus, I change it & the scent I wore I during my first pregnancy is a major trigger for me. Triggers can be anything & no one has any control over what might become one. I experienced a million sights, sounds & sensations during that time, most of them hold little power over me. That scent, though, is potent.
Formidable enough to render me a sobbing wreck. Being taken off guard by that scent whilst shopping forced me to run shaking from a book shop to vomit in the street. All the while struggling to breath & bring myself to the present. A nurse who had too liberally applied the fragrance sent me shuddering back 15 years. Leaving me so panicked I crawled behind a chair & hid. I stayed crouched on the floor desperately trying to claw my way out of the worst day of my life. Completely trapped in my own personal horror film until some kind soul got me some diazepam & did me the kindness of handing it over without questions. That heady aroma has caused nightmares so vivid that I’ve woken myself with my own screams. Dreams so painfully real that I’ve had to keep myself awake for days. Sitting in the company of someone wearing that perfume once contaminated me. On returning home I could not rid myself of the smell. Real or imaginary it lingered until I smashed my hand with a marble pestle. So tortured was I by the memories the scent brought to life that I ploughed that pestle into my hand until I broke two fingers. The cracking of bones a welcome jolt back to the here now.
Triggers are uncontrollable. It is not within the power of a traumatised person to select what reactivates their trauma. Nor can they choose not respond. Our minds shelter dark territories & they’re all one way roads. Once you’ve slipped in, you have to press on through. Being triggered isn’t a foolish over reaction. Nor is it the hurt feelings of the overly sensitive. It is the raw & brutal reality of those who have dealt with the unimaginable. It’s a battle scar on the brain.
I can’t stop anyone from misappropriating a word. Ignorance abounds. The only tool I have to fight with is honesty. The truth is that trivialising a serious symptom of illness hurts. It stifles the conversation & prevents people seeking help. It makes vulnerable people feel weak & ashamed & stupid.
So, no, I’m not triggered by your cheap dig. I’m just tired of the stigma. Very, very tired.
Today I joined the counter demo against catholic anti abortion group 40 days of life. Regular readers may remember that I also attended this protest last year & I am incredibly frustrated to have had to return today.
40 days of life are an international group who use their faith as an excuse to harass vulnerable people outside hospitals. They have taken American style anti abortion protests global. It both saddens & enrages me to see them operating in my city. During lent the group protest outside the maternity buildings of various Glasgow hospitals. Their claims of wanting to help people planning abortions are belied by their actions. I have seen this group standing outside my local hospital & they are helping no one. Their chosen location is outside the maternity building, but also at the main entrance to the hospital, providing maximum opportunity for intimidation. Regardless of the situation no one is happy to discover an unwanted pregnancy. To seek to cause distress to people in an already difficult situation is cruel. To add to the burdens of persons who may be traumatised or desperate is sickening. Their talk of kindness & love are incongruous with their actions. As is the fact that their hospital vigils cause unneeded stress & upset to expectant mothers, women who have miscarried, women with seriously ill & premature babies. All of whom use the building they protest outside. Their signs & prayers can be seen & heard from various wards in the building. Their presence causes untold harm.
Photo Credit : Elaine Graham
I was truly sickened today as I listened to their lies, inaccuracies & smug self congratulation. I could barely believe my ears as I heard Robert Colquhoun (40 days of life, international director) praise the group for their work. He talked of how happy he was at protests in Argentina & how he hoped they might prevent a proposed change in abortions laws. For the record Argentina currently only permits legal abortion in cases of risk to mother’s life or rape. In practise even in those cases abortion is by no means guaranteed. The influence of Catholic Church is a major factor in current abortions laws in the country. The result of which laws is huge numbers of illegal abortions. Many people die as a result of unsafe illegal abortions. Many suffering treatable complications also die because there are legal penalties for those caught undergoing ‘back street’ procedures, thus many are afraid to seek medical help. As always those living in poverty are hardest hit. The poorer the person the less likely they are to be able afford decent care, making them more likely to experience serious complications, death or be plunged further into poverty by the responsibilities of additional children. This is a situation that Coluqhoun & his cohorts are actively trying to maintain. To call such an organisation pro life is laughable.
Colquhoun went on to identify a clinic in England that performed the majority of late term abortions in England. He talked of wanting to protest that clinic in an attempt to stop those procedures. Let me remind you that late term abortions (after 24 weeks) are performed in the UK only in extreme circumstances. Namely that the physical or mental health of the mother is at extreme risk, that continuing with pregnancy would pose a threat to their life or that the fetus is found not to be viable or to have a condition or disability that would severely impair their chances of any quality of life. In plain speaking those who have late term abortions are about as vulnerable a group as it is possible to find. We are talking about abused children, raped & tortured adults, people who want to continue with their pregnany, but face death if they do so & those whose unborn child will be still born or so severely ill they are likely to live only short lives filled with pain. Is there anyone amongst that group who you would wish to see harassed? To have possibly one of the most painful periods of their life debated in public? These are the very people that 40 days of life today cheered the notion of obstructing. That they would pin point a clinic performing such essential procedures is evil. All their talk of God’s love & the sanctity of life amounts to deliberately tormenting & shaming people who have already suffered more than anyone should ever have to bear.
These are just two of the selfish speaking points. There were many more disgusting acts celebrated. Many lies told. It is crucial that we do not let this go unopposed. These American tactics are new to UK & we must not let them take hold. Religious extremists (for that is what they are) must not be allowed free reign to abuse people undergoing lawful medical treatment. We have to stand up & protect the right to choose. Access to safe abortion saves lives. Beyond that every child should be born to parents who both want to & are able to properly care & provide.
I passionately believe that everyone has a right to quality sex education, access to contraception and complete bodily autonomy. I am absolutely prepared to fight for those rights. I hope that you are too.
About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick.
I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.
There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is.
Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience.
I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.
All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?
Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful!
I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier.
According to Cliff Richards, king of the xmas tune, this is a time for giving. Whilst Cliff is wrong about most things, I think he’s right about this. I love Christmas. I am fortunate enough to have wonderful people to share it with. We always have more than enough food to fill our tums & plenty presents under our tree. If like me, your festive cup runeth over, please consider making a donation to one of these excellent organisations.
Simon Community helps homeless people in Scotland. They provide a number of wonderful services. From teaching life skills to providing accommodation to help people get on their feet, they support homeless people in a multitude of ways. This year they also launched a new initiative to provide both period products & education for people experiencing homelessness. You can help Simon Community by donating your time, money and a number of essentials items. You can find more information here.
Luisa Omielan is my favourite stand up comedian. Her material is not only hilarious, but covers incredibly important issues. She talks about mental illness, body positivity & female empowerment in her hysterical routines. This year she lost her Mum suddenly & horribly to cancer. She has now not only incorporated the difficult topics of palliative care, NHS under funding & death into her routines, but has also started a foundation, in her mum’s name, to raise money to provide comfort items to hospices. My own family was also touched by cancer this year & I became aware of just how important good hospice care is. Until now I was not aware that hospices are charities that do not receive government funding. People at the end of their lives, often suffering, should have access to the best possible care. Luisa is trying to make that happen. Please give whatever you can to Helena’s Hospice Foundation.
Save the Children work around world with children in desperate need. Their mission is to keep children safe and healthy, whether that means battling poverty or exploitation. They fight to create and enforce legal rights for children as well as providing food, clothing and other essentials for those in need. There are too many frightened children in too many places tonight. If you can help give them a better tomorrow, please do.
Tribe is a Scottish animal sanctuary providing a loving home for animals who have been victims of abuse, neglect or who have been saved from slaughter. Their aim is to keep animals safe, but also to encourage compassion for animals not normally considered pets. The sanctuary was founded by John and Morag, animal advocates who wanted to truly live their beliefs. They currently house cats, dogs, cows and chickens. You can get to know their growing family & find out how to donate here.
Please dig as deep as you can and have a very Merry Christmas and a fun filled Hogmanay.