Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

Is it really ok?

‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.

Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.

It’s ok not to be ok in orange text with green quotation marks

What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.

And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.

When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.

Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.

While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?

The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.

If someone in your life is suffering without help you can contact your Mp & express your concern.

Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.

Stop voting for people who are actively defunding our health service.

Be proactive. Ask loved ones what specific help you can provide.

Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.

Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.

We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.

Open shouting mouth with the text your voice has power

* Information Services Scotland ** SAMH

Try not to breathe…

You’ll have to excuse my silence, I have not been feeling good. What I thought was a bad cold, progressed to maybe flu & a uti. Then my sense of smell disappeared and my tongue tasted disgusting. Fevers, unrelenting fatigue, one home test and I suspect you know where I’m at.

Corona town is no fun. I’m on day 15 and I still feel like shit. I have improved a little. I can now eat toast & drink fruit juice without my stomach violently objecting. On the other hand, my cough is getting worse again. I still ache all over and my joints are throbbing. I’m losing entire days to sleep, but remain exhausted. I have a constant low level headache that periodically ramps up to ow! I’m breathless all the damn time. And of course my usual complaints are all heightened. It feels bloody horrible.

I’m stumped on how I contracted corona. I have been careful. I hardly go out. I have seen only a small group of people since this began and always in accordance with the rules. I wear a mask. I’m hand sanitiser obsessed. No one has been in my house since March. Still I managed to catch it. This bug is not messing around.

I’m very grateful this isn’t worse. I have pre existing conditions & a pathetic immune system. I feared this virus might knock me out entirely. I’m glad to be managing at home, but trust me, you do not want this. Even the not so serious covid is plenty bad.

Please be extra careful. Take care of yourselves & everyone you may come into contact with. Normal is a long way off.

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

*

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…

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 give up…

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

Don’t forget to shout…

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.

World suicide prevention day

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.

Actions speak louder than words

Find your MP here.

Find your MSP here.

Check your MP’s voting record here.

Talk is cheap…

It’s Mental Health Awareness Week, which is, in theory, a good thing. Since all it seems to involve is people on social media saying ‘talk about it’ it is not actually all that helpful.

We absolutely should talk about mental illness more. We should educate our kids about symptoms & how normal it is to experience them. We should put better training in place for teachers, emergency services & NHS staff. We should all try harder not to judge or shirk away from people who are struggling. Employers should be flexible with staff dealing with mental illness. There should be more information, more understanding, more honesty. Yes, we should talk about it. Asking for help it definitely a good idea. All of these things are important & valid, but there’s still something missing from the conversation.

What happens when you do speak openly & no one listens (or seems to care). Can we talk about all the people who gathered all their courage &!swallowed their pride to ask for help and didn’t get any? Can we address the fact that as hard as is it to say ‘I’m not ok’, it’s a million times harder to hear ‘tough luck’ in response.

We do need to talk about mental illness, but we also need to listen and act. Funding is of course part of the problem. The NHS is chronically underfunded & mental health is the poor cousin. For all the political talk of parity between physical & mental illness, there has been little change to waiting times or scarcity of vital mental health services. Very often waiting to even be assessed by a mental health team is a long process. In my area the wait for psychologist input is 4months (that’s relatively short), in practise you’ll be waiting longer because you will first have to be referred & assessed before anyone even adds you to that list. During all this waiting time people can have no professional support.

Then there are the multitude who are deemed ‘not sick enough’. To be fair this has always been an issue due to stigma & ignorance. Lack of funding exacerbates the problem. When services are so stretched, access to those resources become limited. Lots of people who seek help for mental health problems are basically told to manage it themselves. Get some exercise, reduce your stress, get out more. When you summon your strength to talk about things that frighten you and are told it’s no big deal, it’s hard not to feel even more pathetic. It is difficult not to feel shutdown. Repeat that scenario more than once & people give up. Likewise for those who are informed that they’re not quite ill enough to warrant intervention. All that talk of early warning signs & speaking up doesn’t translate into much action. Having a professional ask you to wait & see if your health declines before they will help you is a kick in the gut. When you know that getting worse means your entire life falling apart, it’s not unreasonable to prefer to be proactive. When you don’t know what’s happening to you all, it is terrifying. So, yes, we do need to talk about it. I will always encourage people to ask for help. I will always strive to remove the shame of admitting you need assistance. I’ll also continue to demand that we talk about what happens after you take that step. We cannot ignore the fact that asking for help does not guarantee receiving it. We must acknowledge all the people for whom no treatment has been forthcoming & stop pretending that the problem isn’t much, much bigger.

People die because they did talk about it & nothing changed. Can we start talking about that?

A time for giving…

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.

Doctor, doctor…

The universe obviously thought my life was going a little to smoothly, so she threw me a little kidney shaped drama. 

I woke in the night with excruciating upper abdominal & chest pain. Violent throwing up followed by passing out left me a tad perturbed. It was actually a little scary as the chest symptoms mirrored all the things you read in heart attack warnings. More passing out & worsening pain led to a call to NHS 24 who swiftly sent an ambulance. 

The paramedics did a heart trace & found me to be more tachycardic than just pain could account for. To be honest I think the culprit for my racing heart was sheer panic at finding myself in a bloody ambulance. Anyway, an empty a&e and some very nice medical folk soon led to a diagnosis; an inflamed kidney. 


At the just kill me stage.

I had yet another kidney infection, which had caused my kidney to become in inflamed with sheer indignation. I can’t really blame my poor kidney. The number of kidney & urinary tract infections I’ve had in the past 12mths is ridiculous. I was admitted to surgical ward, given fluids, morphine & monitored. 

It looks like I might have tiny kidney stones. These little bastards are causing all the trouble. I need to have a detailed scan later this week. If there are stones lurking they can be broken up with ultra sound waves. Which, overall is good outcome. I am always delighted when drs can give me answers. 


Progressed to I can stand the pain, but I hate hospital stage. 

For the time being I am glad to be home & reallly hoping this will spell an end to all the kidney issues. Another hospital stay & resultant recovery time has put a serious dent in my productivity. So, I am currently stressing about the enormous backlog of tasks I have. I’m behind in everything from housework to writing, personal grooming to fundraising. Spoonie life is anxiety ridden. 

Oh, serious brownie points to the toy boy for taking excellent care of me. Big tick in all the boyfriend nursing boxes. He brought me jelly, fed my cat, fetched me fresh knickers & listened to hours of my morphine addaled chatter. He even got me a cute get well card. Thanks, babe.