The Fear…

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

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

Make it up as we go along…

Historically, relationships have been a fairly fraught affair for me. I have found myself involved with various types of difficult men. I never quite managed to align my expectations with theirs. Someone always felt short changed or infuriated or plain hurt. 

I’ve had men who wanted to control or tame me. Guys who loved my weirdness until they realised it was permanent & the novelty wore off. There have been proposals; both accepted & rejected, but I never did make it down the aisle. I’ve fallen hard for those who could not make me a priority & struggled to breathe with those who couldn’t focus on anything else. 

I’ve dumped so many men for so many reasons. The tiniest of infractions & the hugest of betrayals.   I’ve disappointed by being too ill or too strident or too independent or too me. Their lack of strangeness or loyalty or compassion has disappointed me right back. To be honest I had given up on the idea of finding someone & just being happy. I watched everyone I know meet someone & like them & build a life & make it work. 

I thought, maybe, I just wasn’t built that way. All my love songs were heart wrenching. And so very complicated. 

Then I took a chance on a cheeky smile with a social conscience. This time, romance is easy. For once we might be on the same page. After all this time, I met someone I liked & I want to see where it can go.  So far it’s taken me to fun & comfort & excitement & care & trust. Oh & access to a really sweet arse. 

Sure, we bicker. He is full of nonsense. He never picks up his socks. He always wants to debate my veganism. I have tell him to suck my dick way too much, but I feel like we’re on the same team. I don’t feel pressured to be anything other than I am. We’re just taking life as it comes & it feels good. 

Tell me lies….

The older I become the more I realise that the world lies to me. I am keep coming up against perceived wisdoms that just aren’t true. In particular I feel some life events are so surrounded in supposed gravitas that we’re all set up for a fall. So many situations that I was led to believe were scary, amazing or life changing were in fact no great revelation to me. So, here’s a my top five non milestones.

  
Losing my virginity was no big deal. It wasn’t planned, I was just getting it on with a teenage boyfriend and it happened. I can’t even really remember the details. We progressed past our usual stopping point and I realised I didn’t want him to cease. So, we continued and had sex. It wasn’t fantastic and it wasn’t awful either. I didn’t feel any great pain; I didn’t really feel much beyond a sharpness when he first penetrated me. I didn’t bleed other than slight spotting in my knickers the next day. Afterwards we didn’t have a big discussion, there were no I love yous or promises. I think we went to sleep. It was nice. We had a cuddle and kiss in the morning then I left with my best friend to find food to cure our hangovers. I honestly didn’t feel changed in anyway. It seemed to me just a natural progression. I hear other women talking about regretting who they first slept with, wishing they’d waited for someone really special or even they person they married. I’ve never felt that way. The guy I shared my first time with certainly wasn’t a great love, he turned out to be a bit of a pig, but it’s never given me a moments pause. I was a teenager, even then it never occurred to me that he would be The One. I think that’s how it should be. Sex doesn’t define a person. It’s entirely healthy to experiment, make mistakes & learn from them. For girls especially we need to remove the idea that losing your virginity is somehow losing worth. We also need to ditch expectation that your first time should be an amazing, cherished moment. It hardly ever is and that’s ok.

  
Graduation was another milestone that didn’t rock my world. Sure I was proud of myself for attaining a good degree. I had to wade through some adversity during my university years and I was glad I had made it to solid ground. Other than that, it was unspectacular. I didn’t even attend my graduation ceremony. The thought of the gown and marching on stage when my name was called made me feel nauseous. So, I didn’t bother. Neither did I have a fancy dinner or party. At the end of all our exams my friends and I had a mighty piss up, but come graduation time we were all onto the next stage. We were trying to find jobs we actually wanted whilst working jobs we needed to pay the rent. In short I was getting stuck into being an adult. Graduation already felt like old news.

  
Getting my period was another supposed life changer that left no discernible mark. I can remember my friends getting theirs before me and feeling a tad left behind. The actual details of my first period have left no imprint. I have a vague memory of perhaps calling my mum into the bathroom, but that may just be the influence of countless teen movies. My mum had gone over what to expect long before the event, so there were no shocks. My early periods were unremarkable. I didn’t suffer from cramps or mood swings. I merely found the whole thing a messy nuisance. I didn’t feel like a woman, I felt inconvenienced. 

  
For me, leaving home was also accomplished without a fuss. I had always had a good relationship with my parents, but I craved independence. So, when I fell head over feels with an inappropriate guy, I leaped at the chance to move in with him. I was young, yes, but I wasn’t scared. My mum thought it an ill fated idea and told me so. I ignored her and she knew me well enough to know she had to let me make my own mistakes. There were no arguments or tearful goodbyes. I didn’t have a lot of belongings, so the actual moving was a simple task. I had already been spending most of my time at the boyfriend’s flat, so there weren’t any ugly surprises. I had to learn to be a little smarter with my money and the bf obviously turned out to be a big error in judgement. That said, I have no regrets. I wanted to spread my wings and I did. I loved the autonomy of having my own place, even more so once I freed myself of the stupid first love. I never looked back. I have lived independently -mostly on my own- since & I wouldn’t change a thing.
Now for the one I was actually scared of, but turned out just fine. The big 3-0. In last couple of years of my twenties I had begun to slightly dread turning 30. It wasn’t the aging, but realising I was nowhere near where I thought I would be at 30. I had for some reason believed I would be settled, own my home & be well on the way to motherhood. Turns out that’s not what life had in store for me. So, I made the usual jokes about mourning my youth and felt uneasy. The funny thing is when 30 became a reality, I was completely fine. It dawned on me that my, childless, less than settled state was not actually a problem. I hadn’t met anyone I could be happy with, so singledom was clearly a better option. Living alone suited me, in fact I wasn’t sure I really wanted anyone else invading my space. As for children, yes, I wanted them, but I knew It wasn’t my time. On top of that I felt pretty good. I didn’t feel old & I still looked rather nice. My 30th birthday ended up being a lot of fun. My family and friends organised various lovely events. I was whisked away for a spa weekend and glammed up for a drunken nights out. Yet, again I had been deceived. 30 wasn’t scary, it was a blast.

  
So, what’s my point? Relax. Hardly anything ends up feeling the way we’re told it wil & that’s just fine.