Fringe ’18

Just over 13 months ago I wrote this blog post in anticipation of our upcoming trip to Edinburgh. I never posted about it here again because it was, as expected, a truly terrible month, made immeasurably worse by three flights of stairs up to our flat which rendered me, in my awful physical condition, essentially a prisoner in a tower.
(Which is funny now. But WAS NOT AT THE TIME.)

I did nothing all month – I made a few attempts to go out by myself and found myself crying and stranded in public because of the pain. It was a miserable month and my sanity took quite a beating. I was supposed to be working on a show I love and meeting with friends. Instead, I was too unwell to even make it out of bed for more than an hour or two at a time, nevermind go outside.

I was convinced there was no point in returning to Edinburgh with this level of functionality but when it came down to it, I didn’t know what else to do with myself.
The options were to resign myself to the inevitable loneliness and misery of staying home alone or give myself the opportunity to spend time with my boyfriend and friends in a city I love.
I just needed to find better ways to cope. Probably.

This year I took on no responsibilities. I made no firm plans. I rested as much as I could. I said “no” to almost everything. I walked very little. All of these things make my heart hurt. They’re not fun to implement. Not walking in particular is heartbreaking for me. If I don’t walk anywhere I can’t enjoy the city, I can’t take photos and I can’t help to make my brain feel better with movement.

But this was all vital.

I was more stable than last year, though still quite deeply unhappy during a tough first couple of weeks. Adjusting to new places and situations is always hard and I had to recover from travelling up too. The change came, though, when I went for a massage from someone who is used to treating people like me.

The day after it my muscles felt actively good being used – it’s been many, meany years since I’ve experienced that sensation. It was incredible. Though I did have to be super careful to not overdo it and ruin everything!

I could feel the effects wearing off slowly and with each new day I felt my muscles worsening bit by bit (which is no surprise). Even so, I could push myself a little more than I’d been able beforehand. I could push further without entirely breaking and that’s a wonderful gift.
For what it’s worth you can find her here: www.jillmclagganmassage.com She’s an actual wizard and I’d trust her with my over-sensitive, broken body any day. So far she’s the only one who has that trust.
So thanks to her magic our final week and a half there was just totally lovely for me.

I spent time with friends (whaaaat?!) and I made new ones.
I don’t do either of those things any more. I just don’t. I’m too full of pain and anxiety caused/exacerbated by the pain and exhaustion to engage with other people. It’s just too much to commit to. I never know when I’m going to hit a wall and just have to leave, too.
With the BPD I also never know who to be with people – I spend a long time observing to learn how I should behave to get these people to accept me. It’s not intentional, it’s just the only way I know how to be.

Occasionally I meet people who I feel like I can be “myself” with – without even having to think about who that is; it surprises me that that person seems to exist within me. I don’t know who it is or how, actively, to be them but I know that when I’m around people who bring out that version of me it just feels right and it’s so much less draining. It’s such a bizarre thing to attempt to describe.

So while things were still fundamentally rubbish this year, I’ve found a way of being (with the help of ol’ wizard hands) up there. A way that means I can experience many more good moments and even whole days than I have otherwise done in several years now. A way that lets me grieve the pain and the many, many things I cannot do but go on to find enjoyment in other things at times.

That’s a huge improvement for me.

(Side note: not being on Tramadol any more really helped too, though on the worst pain days I still miss it…)

For a while I’ve been feeling increasingly hopeless about life. Every day for almost two years I’ve fought and fought, I’ve wrestled with my body, I’ve challenged and beaten down the nagging feelings that life is pointless like this as best I can, I’ve truly tried my hardest. I’m still trying to readjust my whole outlook. I’m trying to undo all that’s been done to me and not inflict the same on others. I’ve tried to put out almost exclusively love into the world, to lift and encourage good people to do brilliant things because I can no longer do them myself. I’ve tried to remind people to be kind and understanding, to be considerate of the situations of others. I’ve really, truly tried. But I can’t seem to fix this darkness in me. I can’t fix the rage at the injustice of everything that’s happened in 27 years of life. I’ve worked on my mental health so hard for 11 years now. I made progress. I did. Despite my mum’s suicide severely disrupting my “recovery” I finally improved a little. And then, even a little more, slowly tweaking all the problems, mostly by myself. But I hit some kind of limit. There are things I can’t fix. I can’t fix my body, which is broken now in so many ways, the most debilitating of which is the fatigue. Without it I could get by with long term painkillers and maybe a wheelchair. But I’m too exhausted and in too much pain to take basic care of myself. The pain killers add to the existing fatigue, but I need them to dull the constant, intense pains. I try not to but I spend so much time thinking of the things I could otherwise do. Of the places I could go and the people I could befriend and the work I could do. The people I could help,the difference I could make. But no. None of that is for me. And I can’t bear it. I think I was supposed to be a busy person. One of those who barely ever stops because doing a lot of things and being around a lot of different people makes me happy. I’ve had brief glimpses into that life – I loved it. I long for it again. But no. It’s truly too late for me, in so, so many ways. I’m done. I can’t get back to what I was, I can never be what I was supposed to be. I can never even be the miniature version I’ve worked so hard to build and aspire to when I found out about my illness. I can never be happy with this life, however much I want to. I wanted to build something, a quiet corner for me to cheer everyone else on from, but I don’t think it’s possible to change myself that much. I feel too much jealousy and resentment because of my very limited lifestyle. I can cheer and love and encourage as much as humanly possible but it can’t and won’t change the physical reality. I can never be what I was meant to be, and I’m done. This world isn’t for me.

Withdraw

I don’t have a lot to write about this week; I’ve been switching from opiate-style pain killers to what are essentially nerve pain blockers (I am not a doctor haha) and it is proving very difficult.

I read about all of the withdrawal issues when I first started taking the painkillers a little over a year ago but in all honesty it didn’t really matter to me, I was in so much pain and these were the solution I was given. And they worked. For one month I felt fully pain free for the first time possibly in my life – certainly within my memory.
I’d no idea just how much pain I’d been in until it all finally stopped and it was astonishing to me that I could have been in that amount of pain for such a long time and not believed it worth worrying a doctor or anyone about.

Anyway, over time the pain killers were working less and less and when I first started taking them, because of the way my body reacts to new medications, they actually gave me an excess of energy. Pain free and energetic? It was incredible.

I got so much done. I started seeing friends again. I did house work, painted, crafted, drew, even casually went for small walks. I wasn’t without my limitations, the other symptoms were still there so I still had a line I’d cross where suddenly I just HAD to rest because of all the other problems that aren’t pain-related.

But it didn’t last long. It began to depress me – physically, I mean. And, consequentially, mentally too. I could barely get up to do anything at all, I was so exhausted and breathless, being awake seemed pointless (it still does, but in a different sort of way that I can’t quite explain), it still numbed the basic, general pains like the gnawing, scraping nerve/muscle pains that are always present but anything else began to show again.

So here I am.

It’s peculiar when a doctor prescribes something to you. There is no explanation. You go from the doctors surgery to fill your prescription because it makes sense to do it right away (and certainly for me going home and then back out again would be a stupid move because I’d be unlikely to actually make it back out again!) and the first chance you get to properly sit down and research this new thing you’ve been given is once you’re home. And it sort of feels too late by then. Money has been spent on this and it’s all you’ve got to potentially help the agony you’re currently in, so you take it.

It was worth it for me.

However horrific this currently is, it was worth it at the time.

I’m slowly replacing my daily painkillers with these new meds but it’s still causing horrible withdrawal symptoms. I’m constantly sweating, hot or freezing, shaking, in lots of pain, weak, exhausted, nauseous, barely able to move at all.
Which in all honesty isn’t much different to how I felt before I’d ever even taken those pills! However, it was nice to not experience all of this… and it is likely to only worsen over the coming weeks as I eventually come off them entirely. The new meds are honestly not helping yet and the only relief I’m currently getting is the one painkiller I’ve worked my way down to in the evening.

The thing about all of this that’s upsetting me the most though is the timing. I was supposed to be going to see my boyfriend for our 4th anniversary, we have a table booked at a restaurant and I’m far too sick to travel there. We haven’t seen each other for a month. I’m truly, properly heartbroken.

One of the things about coming off the painkillers is that I’m getting my emotions back too.
Which is both a relief and an absolute nightmare. I’m already losing my temper a lot again, getting bad anxiety, crying, but I’ve also felt genuine excitement about something for the first time in over a year.

I’ve still got several weeks left of this; it’s going to be a hell of a ride.

Adventure!

I left the house today!

This feels like an astonishing achievement. I didn’t take my camera with me which is a shame, but there were some opportunities I couldn’t resist while hobbling along the seafront.

(I don’t know what either of these plants are, I’d love it if anyone could tell me!)

I made it to a cafe to sit and work on a drawing I’ve been meaning to finish for such a long time now – I keep putting it off, afraid I’ll ruin it but I’m determined to just get it done now!

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I’m so pleased I took some photos because they’re serving as a great reminder right now of all the little bits of goodness that I otherwise wouldn’t be capable of recalling through the pain I’m currently experiencing. I’ve absolutely overdone it, but it was great to get out at last.

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Growing

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With both of us being physically unwell our garden very much takes a back seat in the list of life’s priorities, which – in my eyes – is actually a sort of blessing. Because it’s so, er… “natural” we get all sorts of visitors; nesting birds, squirrels, butterflies, bees, sometimes mice. And I love that. I love that it invites so much of nature in. We’ve got blackberries (which do occasionally get cut back to stop them taking over e v e r y t h i n g), nuts and pears, along with plenty of variety in non-edible plants.

I love overgrown stuff. I love nature taking things back and I resent our insistence on going in and destroying everything that’s grown just because we can, so the unruly state of our garden very much appeals to me.

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I’ve always felt a surge of love and awe when I take time to look at nature, particularly with a view to photographing it as it refocuses my mind. I have to actively seek out the beauty around me and that’s something that I don’t take time to do any more.
Carrying my camera is hard work because any amount of extra weight at all causes me considerably more pain & lessens my ability to walk. With the difficulty to walk comes the sense of desperation to just get somewhere away from the people who are staring. It also takes all of my concentration to walk well and the pain itself is very demanding so I have no space in my mind left for admiring the beauty around me.
I miss that. I miss, particularly, walking through forests, something which I’m not sure I’ll ever be capable of again.

Anyway, I took some time this past Sunday to explore our garden because I was feeling trapped in the house and I thought I’d share the results with you. It’ll help to remind me I can still explore with my camera even when I feel like a prisoner.

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Puppy News

Back in July we got a new pup. It’d been a couple of months since my old boy passed away and my dad was desperate for another, so I finally agreed – with the caveat that the new one would be very much his. I’m no longer well enough to help out with a dog and I don’t want to get too attached because heck I need to move out some time soon!

So here he is on the day we took him home:

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Of course I’ve got more involved than I intended to, but it’s hard not to – just look at that face!

And here he is now:

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I miss Thalji so much still and I obviously didn’t expect a new dog to replace him because they all have such different personalities, but this guy is lovely too.

He came to us essentially fully grown. He was so well behaved and so relaxed from the day we brought him home, he didn’t even need house training (???) and he’s learning everything else so fast. It’s never felt like having a puppy and he has always been huge for his age so it’s easy to forget how young he is especially when he does something wrong!

So anyway, everyone who hasn’t already met him on my Facebook/Instagram/Twitter –
say hi to Kabiir!

Edinburgh & Giving Up

It’s probably about time I talked about the Edinburgh Fringe Festival.

Since I first went to Edinburgh as a teenager around (I think) 14 years of age I’ve adored it – I’d been wanting to go for what felt like forever but, in reality, was probably only about two years. Since that trip Edinburgh during the Fringe was always my favourite place to be.

So now, with the Festival fast approaching, why am I terrified and desperately searching for a way to escape having to go?

Things have clearly changed. I don’t think I love it any more. Where it once filled me with energy and giddy joy it drains me and replaces any emotional capacity with panic and terror. It’s horrendous.

In recent years I’ve been doing exactly what I always wanted to do there: operating sound and lighting for a show.
I’ve wanted it for almost ten years but the hideous reality of it is that it came too late. Yep, at 22 it was already too late for me. For all of my love for it, for the moments of joy and energy I can sometimes feel during a show, and for all my determination to beat the horrendous anxiety it causes me, the fight against exhaustion, panic, flatness and emptiness, self hate for not being perfect, for every damn thing… it’s not worth it. It makes me so unwell.

For trying, I’m rewarded with more pain, more fatigue and more things to fight. That’s what upsets me the most – I’ve tried so hard, thinking that if I just kept trying and learning how to deal with it all it’d help me to get better. But it hasn’t. It’s always made me worse.
It hardly seems fair; I’m utterly heartbroken.

So this year I think I’ll be handing most of the “work” over to someone else, readying myself to not return in 2018 – assuming, that is, that I can get myself well enough to even get on a train to get there this year. This week.

I want to get and be well enough to do it – just this one, little thing. This one show, less than an hour long, sometimes with almost nothing to do the whole time, this one, ludicrously easy thing… and I can’t do it. I’ve cried over this for two days now. I’m absolutely distraught and am having near-constant thoughts of a final escape because I can’t even do this so there is literally no reason for me to exist any more. I’ve got nothing. Really.

I’m sorry that this is so downbeat, but I’m in a really terrible place right now and I don’t know what else to do.