As I said in my previous post, I have been on the struggle bus recently. My stupid body has been making it difficult for me to get a whole bunch of things done. This has left me clinging even tighter to the things that I can master. Since one of things also offers an opportunity to sprinkle a lot festive spirit, I have been diving right into it. Thus, I give you even more xmassy nails.
I did this manicure at around 3am because pain woke me up & couldn’t get to sleep. I was exhausted and so the design is fairly random. Still pretty jolly!
Frosty White – Marks & Spencer Everything Else – Barry M
Next up was was an icy blue set. I’ve been trying to get snow flakes right for the last two christmases. I think this year I finally nailed it. Do you agree?
Barry M
I’m currently sporting this lovely glittery design. Another mix & match inspired by various festive bits. I like them, but have managed to break one nail & chip another already. The brushes will be coming out again tomorrow.
Frosty White – Marks & Spencer Everything Else – Barry M
Bronan remains entirely struggle free. Oh to be a cat.
I received an early Xmas present today. If I get a present early, I open it because delayed gratification is not my jam. However, I had permission to get into this one. In any case, I am utterly in love with it & the person who gave it.
That affection got me thinking about something I saw discussed on Twitter. The old ‘internet friends aren’t real friends’ debate. Obviously I don’t agree. This thoughtful, beautiful gift from a dear friend who I originally met online drove me to elaborate on that. I definitely think it is possible to be catfished (deliberately or not) into friendship online. You can ‘meet’ people with whom you have one thing in common & so can maintain an online relationship with, but it likely wouldn’t sustain an actual in person friendship. You can find people who purposely deceive or folk who are just able to portray a persona online that they can’t quite manage in life. Of course there are dodgy folk, lonely folk & even dangerous people who can use the internet to their advantage (& your disadvantage). I accept that’s all true. However, the flip side is all the wonderful people you might not ever have the chance to meet. This is were I come in.
Due to mental illness, chronic illness and working from home I have been perhaps more online than most folk. Or at least I’ve been more online for longer than a lot of people. As a result of that I have made genuinely good friends via the internet. I found understanding & acceptance from strangers on my computer when no one in real life really got my self harm. I’ve connected with a fat community that I would never have had access to outside of the web. Both of those groups changed my life. Networking with other freelancers has led to friendships along with work opportunities. I have been able to work with editors, organisations and publications via social media connections that have progressed my career. Beyond that I have met & built real relationships with people I have met through appreciating their art, respecting their activism or just firing them amusing online.
Those connection points have grown into really meaningful friendships. People I have gone on to meet and cherish. I have friends I consider an integral part of my life who started out as anonymous screen names. I think social media and the internet in general can generate valuable relationships. I also believe that the notion that those friendships aren’t real is inherently ableist and othering. Disabled and chronically ill people often rely on the internet for many things that others can access by leaving their home. In addition people who for whatever reason find themselves outside the norm can find like minded communities much easier online. The ability to do that is crucial.
All of which brings me back to that gift. My super talented friend Sarah created this wonderful digital portrait. It’s taken from my sister’s wedding and I feel so lucky to have it. I would never have met Sarah in real life. She lived far far away when we met (& even further now). Nevertheless, we have a shared history and understand of each other that is very special. So, thank you internet for bringing this woman into my life. And, thank you Sarah for this gift.
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It’s another gloomy Sunday afternoon. It’s drizzling outside & the day’s main occupation is emptying my over stuffed washing basket. It’s not a terrible day. Just routinely tedious.
It would merely be one more underwhelming day if it weren’t for the lightening crack in my pelvis. The shock that spreads to my back and sinks into my thighs. A monthly reminder. A living memory who’s intensity at times pushes the familiar into trigger territory. What rushes in full colour into my brain? Blood
Blood in my pants
Blood on the floor
Blood on my thighs
Blood in the bath
Blood on surgical gloves
Blood on a hospital chair
A supercut of blood. Staining an array of places I’ve called home, polluting clothing & towels. I can feel the rush of blood in my ears as various medical professionals tell me things I never want to hear. The heat, the rhythmic contractions, the fear rush me from yesteryears.
I know all the tricks. I breathe. I describe my surroundings in detail. I repeat ‘I’m ok’ over & over & over. I pet my cat; hear his purrs, feel his super soft fur. I plant my feet firmly & watch my toes wriggle on solid ground. I’m here. I’m safe. I’m in this room. And I am. For long enough to switch reels.
I’ve clicked over to a different familiar. My heart is pounding & adrenaline crackles. My body gets there a fraction before the idea fully forms. It’s too late to call halt. The only thing that ever stopped the bloody horror is more blood. Controlled, purposeful blood. I can almost smell the metallic rapids.
No matter how many days, weeks, months go by without splitting my skin the connections remain. My broken brain leaps from trauma to maladaptive solution with confidence. I must convince myself all over again that blood isn’t the answer.
Don’t find that box
Don’t open it
Don’t slip a fresh blade on the handle
Don’t find the perfect spot
Don’t drive the scalpel in
Don’t let blood trickle & flow.
I know this trick too. Sheer force of will. I will not. I can not. I do not.
I have not for so long. I’m ‘recovered’. No one told the deep dark core of me. That fucker still yearns for it. Not every day. Maybe even not all that often, but I know it’s there. I know how fast the urge can rise. And, oh, I know how hard it is to continue saying no.
I can’t say with any certainty that these thoughts will ever completely leave. I’m like an alcoholic who remembers the relief of the first hurried gulp. Knowing that carnage follows is enough to stop me raising the glass. I just don’t think it’ll ever kill impulse.
I’m good. My life goes on. Tomorrow could be wonderful. I’m tired, though. It would be nice not to have to fight so hard.
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In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.
It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.
So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.
Travel
I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:
Hospital App – £11.80
Visit Bestie – £11.30
Vet – £8.60
Pick up Bronan’s Prescription- £8.80
Post Office – £8.60
Work Meeting – £22
Weekly Total – £71.10
Pain Relief
Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.
Heat Pads – £5 per 3 pack.
Tens Machine – £65
Tens Pads – £5 per 10.
Long Hot Water Bottle – £20
Microwaveable Heat Pouch – £15
Dragon Balm – £2.50 a jar.
Lidocaine Patches – £60 per 10 pack.
Vape – £35
Cbd Oil – £15 per 50ml.
Freeze Spray – £1
Paracetamol – 56p per 12
Massage – £70 per 60 mins.
Kinesiology Tape – £5.50
Yoga Mat – £20
Foam Roller – £12
Disability Aids
I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.
Walking Stick Ferrule – £5
Easi Reach – £10.99
Easy Open Food Containers – £25
Jar Opener – £5.50
Easy Veg Chopper – £20
Multi Bottle Opener – £5
Auto Can Opener – £15
Lotion Aplicator – £8
Walking Stick Seat – £25
Sock/Tights Aid – £8
Bra Angel – £17
Hook/Zipper Assist – £6
Suction Grab Handles – £28
Shower Seat – £35
Wearable Tens Holder – £20
Press on Lights – £10 per 3 pack.
Services
There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.
Grass Cutting – £45
Hedge Cutting – £60
Weeding & Garden Tidying – £100
Wheelie Bin Cleaning – £8
Window Cleanimg – £8
Bathroom & Kitchen Deep Clean – £175
On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.
Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.
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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.
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 gave 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.
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.
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I have been spreading myself a little thin & it’s starting to show. Hence, I’ll be taking a little break. I have a few posts I made earlier so I’ll be popping out of hiding periodically. In the mean time if you miss me you can check the links.
It’s been a tricky couple of weeks, so haven’t been out much. It’s so hot that I’ve been at home in my pants a fair amount. I thought I’d share the comfy & cute looks I’ve been sporting when I have crossed the threshold.
This dress was a gift from my Mum. It’s an excellent choice for this weather. It’s really light, but gives good coverage to avoid sunburn. I love the print and the flouncy skirt.
Dress – Gift Crop top – ASOS Curve Kimono – Simply Be
For a wee cinema trip with the boy I popped this dress on. I got it a few summers ago, but haven’t worn it very often. I didn’t realise you could see my knickers through it until I took this pic at the end of day, oops. Another excellent summer for this stifling weather. Loving the tie detail too. We saw the new Croods film & the boy thoroughly enjoyed it.
Dress – ASOS Curve
Finally, today’s outfit. I had one of my nephews this morning, but was too sore for adventures. I introduced him to minions & had a little carry on at home. This skort is my new fav as it is so easy to wear. I teamed it with the comfiest bandeau top & my trusty pillow slides.
Last week I headed north for a wee break by the sea. Our cottage was perfect. Exposed stone walls, cute nautical touches & the most beautiful view.
My nephew was along for the ride, so I needed cute unfussy clothes that allowed for much carry on. I also had to account for the crazy heatwave. First thing in my suitcase was this adorable skort that I’ve just bought. I’m not usually a shorts girl, but I really love the teenie skirt/short combo. It was ideal for early morning shenanigans with the rascal.
Skort – Simply Be Vest – Primark (men’s) Cardi – Handmade by my Mum Sandals – Pillow Slides Glasses – Where Light
For our trip to Stonehaven I opted for this polka dot dress. It’s super light and easy to wear. Whilst still offering coverage to prevent burning in the sun. The wind was blowing so you can’t see just how cute this dress is. You’ll have to trust me that it has a lovely shape. Oh & pockets!
Dress – Gift Glasses – Where Light
Finally for a blowy day at St Cyrus beach I opted for this trusty jumpsuit. Again, it’s super light and easy to wear. I added the cardi later in the afternoon when the wind got up. When I fancied a paddle I went old school & tucked my jumpsuit in my knickers!
Jumpsuit – Very
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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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‘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.
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.
* Information Services Scotland
** SAMH
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Something in the way she moves... 
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