Be running up that hill…

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.

Tide coming in on st Cyrus beach

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.

Foot with black painted tie nails on the sand with wave approaching

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.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

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.

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

We’re on each other’s teams…

On Thursday my Dr confirmed that she believes I have ‘Long Covid’. It’s been two & a half months since I tested positive and symptoms persist. It’s likely they will continue you to do so for some time.

My Gp took bloods and checked my vitals. My oxygen levels are a little low, but not worryingly so. My heart rate in the other hand is way too fast. We’ll need to keep an eye on that. The Dr is trying to get me referred to a covid rehab clinic, but in the meantime, there’s very little that can be done. At all stages of this illness drs have stressed that there is still so much that no one knows. New complications are cropping up all the time. The more complicated your medical history, the more complicated covid can be. For me it’s constant breathlessness and fatigue. All my usual chronic symptoms are heightened. My pain levels are through the roof, my appetite is decimated and when I do eat my digestive tract objects.

Ly is Weston big glasses and a feminist af face mask

Long term effects of the Covid 19 are far reaching. Everything from strokes to kidney failure has been reported. This virus is dangerous. Please take it seriously. I know the safety measures we have to take are hard. I hate spending so much time at home on my own. The emotional & financial toll has been huge for many, but we can’t afford to be reckless.

If you can, stay home. Wear a mask, wash your hands and observe social distancing rules. Everyone wants to be seeing loved ones & spreading merriment at this time of year, but it just isn’t safe. It will take time to get the vaccine out. Covid doesn’t care about Xmas. There will be more opportunities to celebrate. It won’t kill us to scale back festivities. It could kill people you love not to.

A mask in blue background with  text ‘wear a mask’

Shop Small this Xmas…

I always enjoying supporting small business, but this year more than ever they need our custom. If you’re after for some beautifully different presents for your loved ones, look no further.

Illustrated by Charlie can cover two Xmas needs, gift & cards. Their fun prints would make a fab present and humorous take on festive cards are sure to make everyone smile.

Candles can be a passé as a gift, but not if you find some that are really special. ESH do exactly that. All 100% soy wax, handmade beautiful designs. I have my eye on those pillar stars.

Jessica Jumpers creates beautiful prints, portraits and totes. Her work often features two of my favourite things, ‘kitties & titties’. She also takes commission for portraits. Her unique style ensures any purchase would be a delightful gift.

Tote bag  with ‘titties & kitties’ slogan Sms drawing of naked woman bending over to stroke  a cat.

If African prints warm you heart, My Ankara Love is the place for you. These fabrics are divine. They stock everything from interiors to jewellery. I would die if I found any of their pieces under my tree.

Lamp, bangles, dress &  cushion is African wax print fabrics

Hatch is a retail space in Glasgow that curates independent makers from throughout the UK. They have so many beautiful things that would make amazing gifts. If you’re local I definitely recommend you check them out.

Dried flower wreaths octopus plate, good posnt holder with ivy, stained glass robin window decorations

Curated by Girls have the most amazing feminist tees. All of which are already on my Xmas list. If you know a woman who takes no shit one of these would make the perfect present.

Women wearing t shirts with feminist slogans.

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

*

* Photography Credit – Megi Aben

May all your troubles soon be gone…

All the last minute tidying is complete. The presents are wrapped, the festive bedsheets are on & the fridge is stocked. My final festive manicure is complete & my outfit is all picked out. All that remains to be done is put my feet up for the evening before the madness begins.

Xmas tree with presents

I’m getting very excited about the big day. I’ll be at my sister’s & her little man is so into Xmas this year. I can FaceTime my other wee ones to see them open their pressies. Plus I’m a big kid and I love getting gifts too!

Xmas nail art. Candy cane stripe & holly

As happy as I am to have friends & family to share the season with, there’s always a hole in my Xmas. Being reminded of all the family fun I’ll never have with my own children is hard. Lots of people who have experienced loss struggle over Christmas. That’s why organisations like Sands & Miscarriage Association are so crucial. Sands work towards reducing still birth and neonatal death. They also provide support for those have lost babies. The Miscarriage Association aim to support those who have suffered miscarriage. They also strive to end the taboo nature of baby loss. Both do essential work with vulnerable people. If you can spare a little, a donation will allow them to continue their essential mission.

Xmas tree, heart decoration with text no foot is too small to leave van imprint in this world

However you spend Christmas I hope it will be safe, warm & filled with as much joy as you can muster. If you are missing someone this year I send you love.

Easy ways to support your spoonie friend at Christmas…

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.

Lonely hearts club band…

Miscarriage is lonely. When it happens you’re on your own. No matter how much support you have it’s still just your body failing. Your dream dying. Even if you have a loving partner who shared that dream, they’re not bleeding. Their body isn’t an empty husk. Yes, I know this isn’t necessarily true, but believe me, it’s how it feels.

That sensation continues. The loss is isolating. For all the reasons we’re starting to talk about and for others that will surprise you when you thought you were ok. It is an uncomfortable topic. No one really wants to talk about your unsuccessful pregnancies. Often most people in your life don’t even know about them. Those that do will forget the dates & details. That’s not a complaint, just fact. Your baby wasn’t real to them. It’s hard to feel anything about a life that never tangibly existed; your baby only really lived in your world. That’s not to say your people don’t care, they do. Perhaps they just don’t want to upset you. Or they genuinely don’t have the words. Time goes by. Life is lived. The only evidence of your loss is an absence. But the missing party was never there to anyone other than you. It’s a crime without a witness, but it isn’t victimless.

To a certain extent you adapt. You carry that lonelines. It’s occasionally acknowledged that once upon a time your life was almost something else. You quietly carry your grief and you carry on. Along the way you find new challenges. You discover that there are a bunch of seminal moments & experiences that you have to put away. You aren’t really allowed to tell those stories like other mothers do. You aren’t even allowed to call yourself a Mum out loud. The title doesn’t make sense to the world when you have no flesh & blood children to show.

So, you learn to smile & say nothing. Just nod and ask questions when others share the tale of how they discovered they were pregnant. You can’t join in with a silly story about peeing on a dozen sticks. You can never say how you somehow knew before it was ever possible to do any test at all. Your stories aren’t cute. That’s someone else’s lot. You won’t be thanked for ruining the mood. Likewise you mustn’t share pregnancy tales. No friendly bonding over how tired you were or sick you felt. Cravings & aversions will remain unknown because, again, you have no happy endings. The tone of your reminiscing isn’t light. You can never empathise with a pregnant friend. To do so would be to draw attention to tragic realities. There isn’t a guilty party. You aren’t being maliciously excluded. It’s just life. Your child didn’t make it. Reminding everyone of that turns warm-hearted conversations into sad, awkward exchanges. You can’t broach the subject because you don’t want to spoil other people’s nice time. They won’t include you because they don’t want to hurt you or because they forget (or never knew) that you are part of that gang. You’re missing the vital component required for membership.

That hurts. The silence is painful. Biting your tongue & standing on the perimeter takes effort. Not letting any of it show can be torture. Not fatal though. You’ll find yourself in these situations repeatedly. You’ll realise you can survive them. You will nod along & take your sadness home. Unpack it when you’re alone. Go over your own pregnancy chronicles in the privacy of your head. Then you’ll have to take a deep breath & face the new hush.

You have nothing to add to the next part. The trimester you didn’t reach. The birth. The nights the baby didn’t sleep. The trials & triumphs of breastfeeding. Words and steps and sobs and kisses. You’ll have nothing to share. All you have is second hand information. When you help your experience isn’t really yours. Just borrowed. Never actually a mother’s wisdom. It’s still no one’s fault. You don’t wish they wouldn’t share. Don’t want to stop being a part of the whole wonderful process.

It’s lonely.

To feel like a mother & never have anyone call you mummy.

To shake your head no when you mean yes.

I know other people understand, but I’m still on my own.

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.