You’re my favourite…

I’m still a little bit in holiday mode. I’m struggling a bit with some hardcore fatigue and have given myself until Monday to get back into gear. I didn’t want to leave a gap here, so I settled on the epitome of new year posts; the round-up. My 2018 favourites, if you want to get specific.

I started the year reading what turned out to be one of my favourite books of the year. ‘The Love of a Bad Man’ by Laura Elizabeth Woollett is a collection of short stories that tells the fictionalised (based on real events) account of the women who paired up with some of history’s most notorious bad men. When I say bad, I mean completely evil. It’s dark, but so original. We rarely get an insight into the lives of women caught in the drag of historical men. These imagined tellings of their relationships and (often destroyed) lives is compelling.

The love of a bad man

My favourite beauty buy (who am I?) this year was bought early on too. It was a super cheap ebay experiment that had amazing results. I have long yearned for a dramatic winged eyeliner look. Alas I have never possessed the requisite skills. Enter my new friend, the eyeliner stamp. It took only a few attempts to perfect the perfect flick. I can now cheat my way to amazing eye flare.

Eye liner stamper ly h Kerr eyeliner flicks

By spring we were already engulfed in a heat wave. The Toyboy & I took advantage of sun & slipped off on a mini break. Kilberry Bay, Tarbert is just stunning. We enjoyed a few peaceful days surrounded by the most beautiful nothing. With a deserted beach so pretty that it’s used as a wedding venue and a gorgeous view of Islay, Kilberry was the ideal spot for a rejuvenating getaway.  I find the sound of the tide swooshing on the sand desperately romantic, thus this became my favourite trip of 2018.

Kilberry Bay

Summer brought more sun and No Shame. Lily Allen’s eagerly awaited fourth album. I’ve always loved Lily’s witty lyrics and wry honesty. No Shame ups the auntie on all of that, a lyrical description of the collapse of a marriage, juggling motherhood, work & living. All is laid bare with, you guessed, it no shame. Just lashings of reality. Each track pulsing with the guilt, hope & grit of life.

No Shame

I took until August to hit the outfit jackpot. The Edinburgh Festival was a masterclass in packing light as I knew I’d have to carry my back pack on the final day. Thus I had to think clever when it came to styling. I ticked all the boxes with this sheer/retro combo. I even managed to make my walking stick look almost cool in this picture. Which is quite a feat, believe me, navigating Edinburgh with a stick is not smooth going.

ly h Kerr Ed fringe

Last, but most definitely not lost least is my favourite day of the year. February 6th was without a doubt the most magical day of 2018. That’s the day my amazing little sister brought her adorable little man into the world. He has been a complete joy every day since. New babas to love will always be the best thing life can offer, so ’18 was a stellar year.

ly h Kerr baba nephew

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The Spoonie Guide to Xmas…

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a multitude of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a phone call for a meet up, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.

My week in pictures…

Last week started yuck with a viral bug, got a bit rocky with with hospital nonsense & finished up with a lot of lovely relaxing.

I’ve done a fair bit of lying in bed. Which might have led to a little bit of feeling sorry for myself shopping. Oh & eating bowl after bowl of broccoli soup to appease my damn stomach.

Soup, hospital band, soup, spunk rockstar

New hat

I had a hotel overnighter on Thursday & took advantage of being right in the city centre to get out a little. We saw a movie, spread some #projectpostit wisdom & snapped some pretty sights.

Wagamama lightsPoint a hotel, project postitly h KerrCineworld, ice blastNaked with socksGood things, primark Glasgow

And of course my wee paw monster has been cheering me up with his cuteness.

Bronan Kerr

Here comes the weekend…

I needed a few days to recover from my getaway, thus had a very lazy end of the week. I was mostly lolling around in jammies. I was still knackered by Saturday morning, so had to adjust my plans, but fun was still had.

I kicked off the weekend with a bit of shopping & sushi with my wee sis. Of course the baba was also along for the ride. He got a little bored of the shopping portion of the day, sushi though, he loves. He can’t eat it yet, but chasing it along the conveyor is a very good game. I have a bit of a spending bug at the moment, so I treated myself to some little lovelies (stay tuned for details). We did a lot of cooing over baby clothes. Plus some admiring of all the Xmas decorations that have just hit the shops. Then closed the day with tea, cake & a snooze for the little man.

I hit the hay ridiculously early on Saturday night. Paired that with an incredibly slow start on Sunday & hey presto, I had collected enough spoons to venture out. We grabbed a late lunch before indulging in lots of local talent at Yellow Movement Sunday. It’s a cool event held on the 2nd Sunday of every month. If you fancy an eclectic jam session & unique live acts, check it out.

It was a perfect autumnal day. The sun was bright, but the air chilly. Just the right weather for slipping on some velvet. This dress is an old favourite. I always feel foxy in it.

Dress – Pink Clove

Belt – ASOS Curve

Musical interlude complete it was time to head home & get my Jim jams back on. Having a good time is exhausting.

Sail away…

As you may or may not be aware it was my birthday at the end of September & the Toyboy treated me to a wee spa break to celebrate. Dundee was our destination so that we could take in the newly opened V&A. Which, I am of course going to tell you all about.

The Dundee V&A is a spectacular building housing a design museum. It’s located right on the river Tay and takes full advantage of it’s location. Our hotel was about 3mins away, so despite it blowing a gale, we wandered along the river. I was actually pretty pleased about the wild weather because it gave me an opportunity to wear my wonderful new coat. I also rather like the feeling of abandon I get when I stare across rough waters.

River Tay, V&A, ly h Kerr

Coat – Glamorous

For me the star of the V&A show is the building itself. It’s spectacular. New interest from every angle. Outside paths curve under & lead you through the middle of building. The solid concrete ‘cladding’ outside is complimented by a similar, but much softer wooden effect inside. Numerous cleverly placed windows create perfectly framed views across the river. They almost feel like art themselves. The whole place feels very fresh. There are so many little nooks hidden in plain sight to discover. All whilst still maintaining a feeling light open space. In short, I loved it.

Toyboy exploring Dundee v&aDundee V&A

Upstairs houses a fairly exhaustive exhibit of the history of Scottish design. It dips a toe onto everything from computer games, to tartan by passing the Scott Monument & industrial design along the way. They also cover fashion, jewellery, interiors & just about everything you can imagine. I even discovered the speedos were Scottish!

Scott Monument model, tiara, Edinburgh festival posters, Scottish design museum

There are some cute interactive bits for kids & a sort of treasure hunt including stamping a book when you find exhibits. The museum is fully accessible & has loads of benches dotted around if you need to rest. It also has lockers so you don’t need to cart all your bags & coats around with you. The main gallery is free, but they do have visiting exhibits which are ticketed. Currently on show is, Ocean Liners, Speed & Style, which we obviously had a gander at.

I am so glad we did. The exhibit covers pretty much everything you need to know about the glory days of ocean liners. It begins with plenty of information about engines & ship building for who are curious about such matters. Moves onto a stunning display of interiors from first class of various liners. The level of luxury is impressive. Items from late 19th century right through to the post war era are included and there was no scrimping for those with a 1st class ticket. I absolutely adored it. The attention to detail & grandeur was incredible. By the time I reached the gallery housing fashions of the passengers I was completely ready to buy a ticket to the past & set sail.

Oven liner exhibit at Dundee v&aOcean liner exhibits Dundee v&aDundee v&aDundee v&a

Dundee v&a

For my design excursion I did classic ly style; clashing prints & a bunch of colours. This leopard print dress was an Asos sale steal. I particularly love the fluted the sleeves. Star of my show, though is my fabulous new coat (see above). Bold red tartan is not something I can resist. It is also kept me very snug in the freezing wind. I’d say size up, if you want the less fitted look I’ve gone for (& if you want to comfortably house your winter layers in it).

Dress – ASOS Curve

Shoes – Primark

Bag – Topshop

Oh & of course #projectpostit left a little something for future visitors to ponder & I took a wee piece of luxury home.

#projectpostit

Luxury pin

Shelter from the storm…

I’ve had a pretty blue day. There’s proper storm blowing around outside & I am incredibly tired, which definitely hasn’t helped. Mostly though, I feel shit because too many people have been horrible to me this week.

I had a very small day surgery on Monday, which went smoothly & really wasn’t a huge deal. It was on my dodgy leg & in a spot when stitches are very easy to burst, so I was told to be careful. With that in mind I got a taxi to the train station early on Tuesday morning (I watch my nephew on Tuesdays). The station has a little car park at one side, but that is not the platform I get the train from, so I need the taxi to stop on the main road. I say need because I mean need. If I get out in the car park I have to go out up a big flight of stairs to street level over the tracks & then down a smaller staircase to the platform. Getting out on the street means navigating one smaller set of stairs (which is hard & sore & slow enough). The taxi driver of course did not want to stop on the main road. He was annoyed that he’d have to go a little further down the road to turn at a roundabout & he didn’t want to pull over on a busy road. He argued that it made no sense when the station had a car park. Now, maybe I’m a bitch, but in my mind part of the convenience of paying a taxi to take me somewhere is that I don’t have to explain myself & I get to go where I want to go. I don’t relish having to explain my disabilities & why I can’t do certain things. Especially when I walk with a stick & it’s bloody obvious that stairs are not my friend. I did however tell the driver why I wanted to be dropped in that specific spot, but he still wanted to argue. Thus I had to say either drop me where I say or take me home and don’t get paid. With much muttering under his breath he did as I asked, which probably took less than 5 minutes more & was basically zero hassle to him. This, my day is off to a crap start & I’m already tired of just trying to move around in the world.

I struggle down the steps just in time to heave myself on to a packed train. The train is headed into town & it’s 7.45am, of course there are no seats left. I make my way to the seats that are reserved for the disabled, elderly etc and everyone sitting there avoids eye contact. I don’t know why people do this because not looking at me does nothing to reduce my need to sit down. All it achieves is putting me in the horrible position of having to ask for seat. This, I duly do. I politely ask the women in the closet seat if I can have her seat if she is able to stand. I am met with huffing & puffing as puts her jacket back on and a glare as she vacates the seat. I thank her anyway because I have some bloody manners & sit whilst others who previously avoided looking in my direction now recover their ability to see me. They now make full use of this rediscovered function to gawk at me for most of the journey. I’m sore & tired & anxious & very conspicuous. It isn’t even 8am. I arrive at central station & have to buy a ticket. There was no ticket inspector on the first train & I have to get a second to complete my journey. The ticket office on the platform has the barriers set up to control the queue. I have to walk around it to get into the queuing area & follow the barriers to actually reach the end of the line. I’m slow, i’m conscious of not messing with the wound on my dodgy leg & I am worried about this queue because I’m really not sure I can stand that long. Roll on more rude people. As I follow the path made by the barriers people just barge right past me. One women even does a little run just as I near the end of queue so she can get in front of me. What kind of dickhead rushes to skip a disabled person who is clearly having difficulty? I don’t know, but I can tell you there are too many of them & I don’t always have it in me to let them know that they’re a knob.

View from the train

Anyway, I get my ticket. I locate the platform of my next train. I find a seat because I can’t go any further until I’ve had a rest. I eat a lovely banana, check my messages & listen to some tunes whilst I gather myself. When it’s time to to head to the train I have recovered some equilibrium. I’m thinking today can be saved. One train journey & I can cuddle my gorgeous wee monkey. This is what I’m thinking as make my way along the platform & a large man barges right into me. He took me completely by surprise, I had nothing to steady myself on & went flying. Mr ‘catching my train is life’ didn’t even stop. No apology, no let me help you up. Kept marching right on & boarded his train. Incidentally his train was my train & it wasn’t leaving for 9 minutes. Whilst he presumably found a good seat I was lying on the platform bleeding. A nice ticket guy helped me up & onto the train. He even radioed someone the description of the guy who knocked me over, but to what end I have no idea. I’m not sure what anyone could really do other than tell him he was a prick. That surgical wound I was being oh so careful with is now bleeding furiously. I didn’t want to remove the dressing on the train, but I’m sure the stitches have burst (they had). So, I’m applying pressure & being watched by other travellers (again) as I try to put myself back together. I was pissed off, but focusing on gathering myself & getting where I needed to go.

Mr nephew was, as always, a delightful little bundle & I got through the day. I arrived home last night utterly exhausted & dropped into bed almost immediately. After a fitful night of sleep I awoke feeling just as tired. My leg is swollen & the wound can’t be restitched (it’s been open over night & restitching would be an infection risk). It will heal, but slower & messier. I had things to do today, but I didn’t do them. Partly because I was in a fair bit of pain and exhausted. Mostly, though, because there was a strong wind & yesterday shook my confidence. The accumulation of the rudeness, arguing, staring & knocking me to the ground was that today I was acutely aware of my disabilities. I didn’t feel up to dealing with the world & perhaps ending up worse for wear again. That realisation made me feel like shit.

cheeky baby
Cheeky monkey trying to steal my stick.

I don’t like to think of myself as fragile or incapable. I know my limitations & I try really hard to work around them. I have to think ahead. I do things a bit at a time & I sometimes have tackle things in ways that might not make sense to others. I know I can be awkward. I know that the accommodations I need can be a pest to others. All disabled people know this. We aren’t asking for seats or giving specific instructions for a laugh; it’s the only way we can live in the world. I already feel stressed & anxious about needing these things. I am certain I’m not alone in it that. So, when you force me(us) to explain ourselves it’s horrible. When you make a fuss about being stuck behind me as I move at glacial pace, you are making my life a nightmare. Your stares & sighs can ruin my day. Limping along with a stick at 37 is not my ideal life situation. Fainting on public transport is not a thing I relish. I did not choose to hurt all the live long day. I do not want to have to ask you for anything, but I can assure if I was in your shoes I’d offer my seat with good grace.

I’ll heal. I’ll give myself a shake & force myself back out the door again. I will hold my tongue (most of the time) as you push past me & roll your eyes. I shouldn’t have to, though. Living with my disabilities is hard enough. I don’t want to manage your arsehole tendencies too.

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.