There’s some light, think you need it…

I knew Mother’s Day was going to be tough this year. Since I always over think every little thing, I did spend some time dwelling on that in the run up to Sunday. Occasionally my inability to switch my thoughts off serves me well, this was just such an instance.

It didn’t change how sad I felt, but I did stumble upon a new strategy. Simply put, I’m going to try my damnedest to have more fun. My life is not really all that easy (who’s is?). There’s a lot of pain, exhaustion, stress & large scale disappointment. None of which I can control. I’ve had to make some huge adjustments in my life expectations this year and that is, well, a process. I can’t change the fundamentals of my situation. I can let go a little bit. I can allow myself to please just me more of the time and I am going to.

Glasgow new beginning

I’m going to date. For fun, god help me. I’m not seeking a soul mate or partner. The aim is merely to find some amusing people I can do enjoyable things with. Hopefully without anyone making too many demands. I’m reviewing all my filed away lists of things I’ve always wanted to do and bloody well jumping on anything that is actually doable. Efforts will be made to ditch the guilt. I’m going to say more no’s to the things I do for the benefits of others that cut me in two. Plus a lot more yes’s to anything & everything that makes me feel good. To hell with the rules or convention. Life is going to fuck me regardless, I might as well squeeze as out as much glee as I can along the way.

With that in mind I began my week with a jaunt to Edinburgh to see my favourite man. Friends who will let you say anything and always leave you feeling better than they found you are magnificent. So, I soaked up too many glasses wine & just enough of his loveliness to give me a major boost. I followed up with the an almost perfect day at the farm. Watching my baby nephew discover the world is a truly beautiful experience. The tiny goats were also worth the trip.

ly h Kerr, Castle st, empty glassesBuchanan st, Pygmy goat, baba & a chicken

I feel like I’ve been hit by a truck now. It’s going to take some recovery days to get back to ‘normal’. My ratio of doing to resting isn’t what I’d hope for. I’m giving myself permission to use some of those good days for pure frivolity.

ly h Kerr

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Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

Please don’t wake me…

Today kicks off Sleep Awareness Week, which aims to highlight the importance of good sleep. As a chronic insomniac I am of course acutely aware of how important sleep is. I’m writing this at 4am, so I haven’t found the cure for sleepless nights. I do though have some semi successful strategies.

My relationship with sleep has flipped from one extreme to the other. In my youth I could drop off anytime, anyplace. I loved to snooze and had zero issues dropping off. I was the queen of the long lie. Sleep became a problem when I first experienced mental health problems aged 19. Unfortunately, I have never managed to regain my easy breezy relationship with slumber. Almost twenty years on I have become accustomed to functioning on a few hours a night. Chronic pain has done little to aid a peaceful night, but an inability to calmly shut down is still a major obstacle in my quest for rest.

A decent night’s repose can affect everything from heart health to sex drive. It goes without saying that exhaustion also has a massive impact on mental health. The NHS advises that most of us need around 8hrs sleep to function properly. In fact, lack of sleep can so massively impair cognitive faculties that experts suggest driving after only 5 hours sleep is just as dangerous as driving drunk. Everyone should be mightily relieved that I cannot drive.

The long-term effect of insufficient sleep is grim. The anxiety of going to bed each night knowing achieving sleep will be a battle is wearing. The more you worry about not sleeping the less likely it becomes. Constant fatigue makes getting through daily tasks difficult, which adds to one’s stress levels. This in turn pushes that magical 8 hours even further out of reach. Long sleepless nights are lonely. There’s rarely anyone else awake leaving a busy mind way too much room to mull over worries. Throw pain into mix and you have a recipe for despair. Moving through the world in a worn-out shuffle will grind you down, which is why I offer my extensively tested tips on getting some god damned sleep.
I’m not going to waste your time with milky drinks and lavender under your pillow. Everyone knows the basics and they aren’t going to cure hardcore insomnia. I don’t have a failsafe solution, if I did, I’d snoring now. However, these are the things that I have had some success with over years.

Bedroom Tips

Keep your bedroom cool. Lowering your body temperature helps the body prepare for sleep.

In theory that’s why a hot bath should aid sleep, but I find any sleepiness gained from the temp drop is lost during the process of getting dry and organised for bed. If you do less faffing post bathing it might work better for you.

No tv in the bedroom. This is a definite for me. I find a television to be the opposite of relaxing. I need my bed and bedroom to be a completely chilled out zone. Which sits nicely with my next point.

Try to make your bedroom as pleasant as possible to be in. Obviously, that means different things for different people. For me it’s nice sheets, subtle scents, comfortable mattress.

Black out blinds are your friend. I could not live without mine.

Invest in one of those huge maternity pillows. They give so much support if you have back or joint pain. Plus they’re just super comfortable.

Sound Effects

Rain on window

I use sounds machine apps. I like heavy rain/ thunderstorm type sounds, but experiment and see what works for you. Something about being safe & protected from the elements I’m hearing sometimes helps me drift off.

Soothing music (whatever that means to you) at a low volume can also help. I like to mouth the lyrics and focus on words I enjoy rather than my own thoughts. Getting the volume just right is key for me, so again, you might need to experiment. Select specific songs and make a playlist beforehand. You don’t want anything that unexpectedly bring unpleasant or stimulating associations to mind.

Preparation

I should probably have started here, but lack of sleep melts your brain. So, you’ll have deal with my disjointed thinking.

These are all evident. I’m going over them because sometimes you miss the obvious when you’re knackered.

Don’t eat too close to bedtime.

Don’t watch, read or listen to anything that will bring up stimulating emotions (nothing scary, disturbing, sad, triggering etc).

Avoid arguing or deep conversations right before you hit the hay.

Smoking, caffeine, some meds (check with gp/pharmacist) are no goes before you attempt sleep.

Against Accepted Wisdoms

Sleeping cat

I’ve consulted many Drs, Psych’s and other practitioners over the years and some of the oft repeated advice they’ve given me has turned out to be just plain wrong for me. If you find something that really does or doesn’t help, even if everyone is telling you the opposite, do you. For me this includes:

Looking at my phone in bed. Putting it on night shift mode to alter the light tone to yellowish rather than blue is a must. Otherwise I find aimlessly scrolling can be very helpful in getting me sleepy.

Reading in bed also works for me. I can’t fall asleep without reading. I find that if I just keep going until I literally can’t keep my eyes open, I have a good chance of getting into a proper sleep. I think it’s because my mind is occupied with the content of the book rather than whatever mess is in my head. Clearly, it’s important to choose the reading material with reference to my previous points.

Sharing the bed with pets. So many people have cautioned me against this. I find my petting my cat and hearing his purrs excessively relaxing. Thus, I ignore such warnings.

Hippie Dippie

Constellation lamp

I hate to be that person, but occasionally the esoteric route gets you there.

A constellation lamp in a dark room can offer something uncomplicated to focus your attention on long enough to get to sleep.

Gentle yoga – clears the mind & stretches everything in a pleasing manner.

Desperate Measures

When you’ve been attempting shut eye for hours and are reaching the point of hopelessness; get up. By that point you aren’t going to sleep. Every toss & turn just raises anxiety levels. I find it much more productive to get out of bed and stop forcing it. Do whatever you can manage and if you get drowsy try again.

Medication – You need sleep to operate. There comes a point when discussing medication options with your Gp is the sensible thing to do. I have tried several sleeping pills over the years. Most didn’t work for me. Most are not a suitable for prolonged use due to addictive and/or tolerance building properties. There are some drugs that can be used for longer periods. I have been prescribed one such medication. It doesn’t have a 100% strike rate, but when it does work it knocks me out all night.

Sleep when you can in extreme cases. Often napping is counterproductive when fighting insomnia. However, when you haven’t had more than a couple of consecutive hours sleep in weeks that goes out the window. When my sleeplessness is at its worst, I will get so completely exhausted that my body will crash. That doesn’t always happen at bed time. Take that sleep. You need it. Sleep all day if you must.

Last but Not Least

Oxytocin

Sex and orgasms in general are brilliant for sleep. Sex works on so many fronts. You can tire yourself out, all those feel good hormones chill you out and of course it’s the perfect distraction from any negative bullshit you have going on. Flying solo releases all that lovely oxytocin and melatonin too, so don’t be shy about giving it a try.

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.

I don’t know where I stand…

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

Pause to breathe…

I had to go into hospital for a little bit for some treatment to complete things. I also have a kidney infection, my body likes to do fun things like this. Anyway, I am physically & emotionally exhausted. So, I’m just going to rest for a while & will be posting things that were completed before this happened. 

My week in pictures…

 

It’s been a fairly rough week filled with more Dr’s than I would have liked. There were some amusing moments & cool snaps, hence I am sharing my hospital expoilts.

It all started last Monday with a pain in my lower back. By Tuesday it had spread around my side & all over the right side of my stomach. The pain had intensified to such an extent that I had to see my gp. Dr suspected possible upper uti infection, but wanted to rule out pancreatitis,so off to the hospital I was sent. Not, however, before I had to pee in a tiny bottle & was given two injections in my bum. One was for pain, which had no effect. There other for nausea, which was entirely counter productive as shortly after leaving the surgery I began impressively vomiting. 

I founf myself waiting to be assessed in hospital. For some reason I was surrounded by babies & their parents watching me repeatedly throw up into those horrid little cardboard hats. Once again it’s a round of peeing in various receptacles & being prodded by numerous medical personal. The result being I was admitted with probable kidney infection.

After another two injections in my arse (their is no dignity in being ill) my behind was now feeling a little tender & turning some vibrant colours. My nurse was unable to get any blood despite trying both arms & hands. A Dr was then summoned to attempt to draw blood. Much to my embarrassment the Dr who arrived is already known to me. I had a fling with him many years before. So, I find myself lying in a hospital gown, groaning whilst a very attractive surgeon who has seen me naked pokes me with needles. Only I could end up in the medical care of an old shag.

  
Anyway, blood is finally collected & kidney infection confirmed. I stay in hospital for a further day 1/2 for Iv  anti biotics & pain relief. On Thursday I walk free & consider my ordeal over.

I spent the rest of the week pacing around as kidney pain is worse at rest. I tried my best to rest & even ventured out with my sis at the weekend. We were treated to perfect spring weather. It felt good to be out in the fresh air surrounded by new blooms. 

  

  
As this week began all felt well. I was still a little tender, but otherwise much better. I probably over did it catching up with house work & errands on Monday. Meaning that by dinner time I was exhausted & needed to have a nap. And, that’s the last thing I remember until I came round on the hall floor in dark. My face hurt & I was very confused, but otherwise unharmed. My first instinct was just to go to bed, but after consultation with my sister I realised I had to return to hospital. Que scans, X-rays & a night of observation. Luckily I only have a mild concussion and a bashed up nose. I had no encounters with long lost lovers and I pray I have reached my hospital limit for quite a while. 

  
Oh & my squinty nose is real sexy.