I’ve needed my walking stick for quite a long time. Maybe 7 or 8 years and I’ve only just become properly comfortable with it. Using a mobility aid, especially earlier in life, is very strange. Everyone has an opinion. No one is shy about sharing it.
All the questions and reactions definitely had an impact on me. I feel self conscious more often than one might expect. I hate when strangers want my medical history. Staring makes me feel shit or angry; sometimes both. I am so fed up with being told I’m so young for a walking stick. I find it really difficult to need accommodations. I feel like a real pain in the arse more often than anyone else is bothered. Likewise, I’m sure I sense judgement more than it actually exists. All of which messes with the confidence.
Then of course there is a sense of loss. Accepting all the things you can no longer do is hard. I struggled on without a stick for longer than I should have because I had this ridiculous idea that I was giving in. I’ve always felt a certain amount of pressure to be stoic in the face of my health issues. A walking stick felt like capitulation. It also forced me across the line in my head of admitting that I was permanently disabled. Before that I was hanging on to the idea that my knee could get better. That was silly considering I’d been assured by more than one Dr that it absolutely would not. Degenerative conditions aren’t known for improvement.
All told, it’s been trickier than I’ve let on. I’ve finally found peace. How do I know? I have personalised my stick. The idea of making it in any way decorative used to make me feel queasy. I have concluded that my subconscious attached styling the stick with it being part of my identity. The way I dress has always reflected my personality. Until very recently including my walking stick in that was a frightening prospect.
Klimt Style
I’m over the line again. If I’m taking the bloody thing every where it might as well be a bit funky. Keep your eyes peeled for new incarnations. Knowing me, I’ll be mixing up it.
Moo Style
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In a previous post I discussed some developments with my long covid debacle. I had to wait a while to see a specialist and have some tests done, but I am now closer to a diagnosis. I will speak on that later as I have two more tests to under go before that is finalised.
I am feeling deflated. My appointment this week didn’t hold any surprises, but there weren’t answers either. The consultant couldn’t give me any opinion on whether my current symptoms would improve or resolve. She also didn’t have any suggestions to improve symptoms that I am not already doing. Drs still have a lot of ‘don’t knows’ when it comes to long covid. That’s not anyone’s fault, but it is incredibly difficult to deal with. As I have said before, the thought of being stuck in my current condition is terrifying.
I am trapped within by body’s limitations. I feel useless and unreliable. In the last two weeks I have had to miss a funeral, reschedule medical appointments & cancel just hanging out at my friend’s house because I was too ill to get out of the house. I can’t keep up with housework or actual work. I am almost always saying no. When I see my niblings I can’t play the way I want to. I can’t help out my Mum friends/family the way I want to and used to. I can’t visit friends I haven’t seen since pre pandemic because the night before I am due to go I end up in hospital. Any outing I can make I constantly interrupt with my need to rest. People always have to ask if I am ok, if I can manage and so on. I hate it. I don’t want the people I love to be worried about me all the time. I make everything harder for everyone.
For me this is failing on all fronts. I’m not doing anything well. Doing everything that has been suggested to help and having no improvement is so dispiriting. Gentle exercise might help, but too much will exacerbate symptoms. I struggle to do 5 mins of gentle yoga stretches without getting so dizzy I pass out. Swimming is great, but I’ve been advised not to go alone. I’ve doubled my fluid intake. I’m resting and doing all the recommended exercises when I am sat down. I stand up slowly, clench muscles and don’t stay in the same position too long. I’ve gone for every test and treatment. I’m utilising every trick in my pain relief deck. I’ve cut back, more rest days, meditate, take deep breaths. Nothing works. My pain levels have not reduced. Dizziness & fainting will not abate. My heart continues to race and I can never get a breath. The brain fog is the worst I have ever experienced. No one has any other help to offer me.
I don’t know how to adapt to this. It is very hard to see how I live a fulfilling life in this state. I know I have felt this way before and found a way, but my horizons keep shrinking. Hopefully it will get better or I will rise to the challenge. Right at this moment I don’t know how to do that. I am more stuck than I have ever been.
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I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.
My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.
That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.
It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?
I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.
Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.
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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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I’m having a rough time. Everything is a bit of a struggle at the moment, so I’m going to do a wanky, hippie dippy post. Feel free to clock out because I’m about to deep dive into gratitude.
All the Basics
I have a safe, stable home. Food in the cupboards. Running water, central heating. Access to healthcare. A comfortable bed & wardrobe full of clothes. My basic necessities are taken care of and that’s more than a lot of people can say.
FaceTime
And WhatsApp, messenger, zoom & all the other clever doo dahs that allow me to keep in touch with folk. A friendly face or some carry on helps brighten my day.
Pillow Slides
Bought on a whim. Incredibly ugly, but oh so kind to my joints.
Aloe Vera
Aloe Vera is a genius plant. First & foremost it’s hard to kill. If you don’t have plant mum skills aloe is for you. It looks good, it adds oxygen to your room & it’s even easy to grow more from cuttings etc. Added bonus, our bodies love aloe. Need a moisturise, got sunburn, heat rash, a blister? Cut open a leaf and whap it straight on. Upset tummy, mouth ulcers, bad breath, ibs? Add a teaspoon to a glass of water. Wonder plant*
Temporary Solutions
I have a lot of issues with no permanent cure. Hence I have grown to appreciate a temporary solution. Diazepam is certainly not for long term use, but it bloody works for a day or two when your brain thinks the world is attacking you. Jane Austen will not fix my life, but she will soothe things for an hour or two. Whilst mint tea can’t cure my stomach disease, it can soothe the spasms attempting to eat lunch caused. They will return, but the minty goodness will buy me enough time to get home. Temporary solutions are various & abundant. Hugs, hot baths, sex, lidocaine patches, a big glass of wine… Moments of respite are better than none at all.
The Sea
Everything about the sea is soothing. The never ending expanse of it, the smell, the sound of the waves lapping. I always feel calmer by the shore. I can breathe deeper and see more clearly. Pretty lucky that I live on an island. The dazzling deep blue is never too far away.
Bronan
My lovely big loyal boy. Always gentle. My own living hot water bottle. An adorable wee tyrant who has me wrapped around his paw. Who doesn’t want to be awoken by a meowing creature in their face at the crack of dawn every morning?
Vincent D’Onforio
I like how brooding he is and that head moving to maintain eye contact thing he does on Law & Order. He seems like he’d be clumsily kind if you were feeling bad. He’s always despicable when he plays a baddy, which I like, no half measures. I get completely absorbed in the character when I watch him. I always believe it. Also, good name.
Summer Rain Showers
I like the ones that come on heavy, but run out of juice quickly. Summer rain smells good, it freshens everything up and gives me a good excuse not to hang the washing out.
Diet Coke
It is really bad for me, but it tastes soooo good. Big icy cold gulps. I don’t know how to quit you, Diet Coke.
Specs Appeal
Statement specs bring me joy. If I have to wear glasses every day they are going to be splendiferous. Big, colourful, can’t be missed face furniture is the only kind I will consider.
IanHislop
It’s very sexy when a person is that good at anything. He exudes the confidence of knowing he’s top of his game. He can slag off the bad guys with impunity because he leads a pretty decent life. He is cute and funny and incredibly smart. I’ve always been fairly sure that he has a huge, beautiful dick too.
Love
This might be where my sincerity gets too much for you. I care not. Life really wouldn’t be worth much without love. Giving or receiving, it’s wonderful. All those little thoughtful things a person does because they love you. Tiny gifts, texts, snapping a pic of something you’ll like. It all feels good. The warmth of knowing I’ve made someone smile or that they wanted to make me smile. Being able to comfort with your words or a cuddle. Sharing milestones & cups of tea. Love is the point, right? How can we not feel grateful if we have it.
Period Pants
A new thing for me and I like them. Wearing a pair to bed is so much better than using a tampon & worrying you might sleep too long. Likewise, so much better for those last days when you’re not quite sure if your period is actually finished or not. I can’t stand the feel of sanitary towels. Nor do I relish the sensation (or risk) of pulling dry cotton from my body. Period pants are a comfy godsend.
Choice
I’m so happy to live in a time (& place) of choice. So many aspects of my life offers abundant options. I can access almost any song in the world from my phone. Look up current affairs, trivia, what time the chemist closes by pressing a few buttons. I have films, shows, games, podcasts, strangers & friends at my finger tips. Whatever food I fancy can be delivered to my door. In theory I can pursue any career I’d like. I can vote how I choose. Do as I please with my body. Get married or not. Sleep with who I want. Wear what I like & go wherever I want (pandemic aside). Choice is not to be sniffed at.
Gardeners
Hallelujah for folk who will sort the garden in exchange for money. I am physically & constitutionally unsuited to maintaining outside spaces. I do however enjoy utilising them. I also like not stressing about ever encroaching weeds. I will never underestimate the peace securing a good gardener brings.
Little People
I have seven perfect niblings. My oldest niece is the smartest, coolest, kindest 11yr old you will ever meet. She will always be my little muffin, but she has grown into a person who makes me so proud. Then there are my brother’s boys who are his complete mini mes. His oldest is so patient & protective with his little brother. It is gorgeous to watch. My sister’s boy is half rascal pirate, half total love bug. He is a joy to be with. My bestie’s big girl is so cute & sassy. She may only be three, but that girl knows what she wants. Then there are her brand new little brother & sister. Newborn twins are a hand full but man alive are they adorable. I am so lucky to be part of their lives. Helping them become the people they want to be is an honour.
Disabled Ammenities
Parking spaces, toilets, seats right by the door on trains. I love them all. Anything that takes into account that every step hurts is a life saver. Extra space, bars to hold onto, not having to wait, all make my life immeasurably easier. Disability can rob you of dignity in so many ways. Things that allow me to navigate public spaces without being humbled are magnificent.
Sister Tik Toks
I love it when my sister and I send each other tik toks. I feel very seen when she sends me clips that make me laugh out loud or that relate to some shared experience. Having a sister is a lovely thing. Having a sister who gets you is even better.
Life has turned out to be harder than I had imagined. Amongst the struggle it helps me to acknowledge all the little & enormous things that make it worthwhile. I know it’s cheesy, but give it a whirl.
*Not a cure or medicine. Speak to your dr about any health concerns.
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I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.
The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.
Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.
There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.
Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.
I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.
It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.
All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.
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Chronic illness can be overwhelming. When every little thing is a struggle it’s hard to remain stoic. In the midst of a severe flare I really have to fight not slip into a morose frame of mind.
When life is just too hard what keeps me going are all my wonderful people. My incredible friends & family are so supportive. I really couldn’t do it without them. I am a big believer in saying how you feel out loud, so I’m taking a moment to say thank you. Thanks for all the chats, the midnight drives to a&e, advocating for me when I am unable to do it myself, the cuddles, the laughs, the understanding; thank you for the love.
Not only are my people the best people, they are also a bunch of lookers. Big love, darlings.
Something in the way she moves... 
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