I love live music I love going to gigs even though I don’t do it that often it’s something I really enjoy. As a rather emo teenager I’d queue up in the cold wearing just jeans and a t-shirt arriving several hours early to guarantee a place at the front by the stage with only the bare minimum of possessions with me to avoid the need for a bag. I would far rather be crushed and sweaty in the mosh pit than sensibly seated or in the less crowded areas at the back.
My first and only festival experience was not something I’m keen to revisit, between the lack of sleep, disrupted medication schedule and discomfort of camping day festivals and open air gigs are more my thing with a comfortable bed to return to
The days of post gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover, I can’t stand for anywhere near the length of time a gig lasts and crowds bumping and pushing me not only increase my anxiety but cause physical pain and my rock my already shaky balance.
Today I’m paying for last night although the pain and exhaustion are worth it for such a good time seeing First Aid Kit a band that although I haven’t been following for long I’m now a big fan of and really love the music of, they’re also amazing live but despite some of the perks of going to a gig as a disabled person like queue jumping or getting a carers ticket for free I do wish I could still be near the front and not forced to be seated out of necessity.
One day I’m going to be sued for my constant use of song lyrics
Recently things have been relatively OK I’m not saying it’s all wonderful but mentally I’ve been reasonably stable; I’ve had my first medication increase of Lamotragine and it’s hard to know whether it’s helping or not as this is probably the first time I’ve not been in crisis or extremely depressed when changing or adjusting medication, to add to this today I got a letter from the mental health team offering me an appointment in March with the recovery and support team presumably following on from the referral the psychiatrist I saw in December made. Yesterday I saw a friend I haven’t seen in a while and was telling her that I’d stopped going to the group I’d been attending due to it being a toxic and unsupportive environment that made me feel worse not better so with the recent mental stability getting the letter about the mental health appointment has just added another decision the think about, if I’m offered more treatment will it make things worse? Do I want it? Is it suitable or would I be better off considering something else I’ve been looking into?.
Life doesn’t come with a manual, I’m still trying to find out who I can complain to but for now I have to try and work things out myself and try and decide what the right thing to do in certain circumstances or what decisions to make when opportunities come along. One of the problems is that opportunities don’t always come along at the right time and that’s without the complication of not knowing when the right time is. For 7 months I’ve been working and earning on top of my benefits (all legit please don’t report me for benefit fraud) and it’s been the best, most intense, stressful, exhausting and rewarding 7 months, it certainly hasn’t all be smooth sailing with days where I was going solo bobbing up and down desperately trying to stay afloat and times when I was drowning and having 4:30 Friday meltdowns which involved texting my manager and almost quitting.
But 7 months in the grand scheme of things isn’t that long and in a perfect world I’d have more time to prepare and put myself in the best position to take on more not just skills wise but mentally too and feel as stable and secure as I can and ready to take the next step in moving off benefits another struggle here is my chronic illness I cannot manage full time and even if I was in perfect mental health I couldn’t physically cope on full time hours. I feel that so much of my self worth recently has been tied up in this job I’m told a lot how good it is that I’m working and being payed but as much as I’m enjoying having more money it’s more the feeling of being an equal on the same level as staff and things that come with it such as socials or attending the staff away day.
Sometimes I think I do too good a job at treating my mental health as something separate that I’m almost lulled into a false sense of security that comes with stability when realistically I still have to fight the urge to tell my manager everything I’ve done each day if he’s not in, let him know I’ve uploaded it onto the shared drive and where so he knows I’ve been working, of course I know that not only does he trust me to work alone but he doesn’t want to know every email I’ve sent or every webpage I’ve read for the workshop I’m writing. I’ve had a few relationship anxieties too despite MBT helping me with this it’s hard to explain to someone without mental health issues that people I’ve been close to or very attached to weren’t just people I worked with and that although they have moved on it’s still at times a struggle for me.
Although I’m handling it better I’m still not a fan of change and if anyone knows where I can hand in my resignation of adulthood please let me know until then I’ll be building a pillow fort.
*mentions medications, doses and side effects and self harm
Let’s talk about medication; the world and his wife and their depressed friend seem to have an option on the subject, the internet is full of memes about going for a walk in a forest and you know the Daily Mail will have something to say on the matter but the reality isn’t just popping a pill and everything is better it’s much more boring, frustrating and often unpleasant. I’ve been on and off medication almost half my life and I’ve been on some form of medication consistently for around 10 years. I’ve tried almost all the common antidepressants – citalopram, venlafaxine (made me throw up so much), sertraline (no effect but made me sick when I took myself off it), citalopram again (worked well then stopped working), seroxat – the scary one from panorama (worked well then stopped working, made me very mental coming off it), duloxetine (still on this the most effective and long lasting though I’m now on the maximum dose) I’ve also been on and am still on an antipsychotic quetiapine.
I loved quetiapine it helped me sleep, it lowered my anxiety and evened out those wonderful BPD mood swings it was great until I decided maybe I didn’t need it anymore that I was tired of being tired, I wasn’t in love with it anymore but it didn’t want to let me go. When I first reduced my dose the withdrawal was horrendous I remember the nausea that made me late for college because moving made me want to throw up, I lay on my sofa and cried for a day before breaking 6 months self harm free and phoning my care coordinator begging for diazepam instead they gave me promethazine this took me to three types of medication.
After this I increased the dose twice and things were ok until I tried to leave quetiapine again and it let anxiety and depression came back in, at this point I was just starting my new job and was also suicidal from the medication withdrawal, this then led to an increase of my antidepressant duloxetine now up to the maximum dose, the anxiety was unbearable so propanolol a beta blocker was added; 3 little pink pills a day.
A referral back to the mental health service and a medication review with a psychiatrist i’d met through my work with commissioning groups and we decided to try lamotragine an anti epileptic but not until I’d had a blood test to check my liver and kidney function oh and watch out for a rash because this can suppress your white blood cells.
My view on medication is that I’m neither for or against it, for some it’s a life saver and others it’s poison that dulls the emotions and sedates people into compliance but I do think people need to be more aware of what they’re taking and how it could affect them. Medication and the side effects are one of the reasons people with enduring mental health problems die on average 20 years earlier than the general population many of the health initiatives around weight loss and stopping smoking aren’t helpful to people who’s mediation has ground their metabolism to a halt or has increased the effects of nicotine on the brain and that’s not even looking at the social side of eating or smoking amongst people with mental health problems.
Medication has and continues to help me in combination with the therapy I’ve had it helps me do my job which in turn benefits my mental health, had I known more about the side effects before I was put on an antipsychotic maybe I’d have decided not to go on it but even if I’d made the same choice at least I’d have had all the information needed to make an informed decision.
There’s still a lot of stigma around being on medication and those memes about taking a walk in a forest really don’t help, there’s no shame in being on medication so please take your meds.
I don’t like Christmas, call me Scrooge or the grinch but i really don’t enjoy it. Christmas can be a really difficult time for so many people there’s a big emphasis on joy and happiness, being around family and friends but the happy family isn’t a reality for many, my family diminished over the years with elderly members moving into nursing homes and dying and now I have no contact with my immediate family though the family Christmases I did have often were rarely happy ones.
My mental health tends to deteriorate around this time of year the run up to Christmas really makes me stressed and anxious despite knowing rationally that the day itself will most likely be fine and that I’m actually going to spend it with two people (and two cats) that I’m choosing to be with. One of the struggles I have with Christmas is that most of the things I do to support myself aren’t an option, I’m off work for two weeks, there’s a big reduction in public transport so as a non driver I’m limited on how much I can get out, health services are reduced as are most other things like council services and housing association (not that my housings are any use when they are in) it feels like the world shuts down and the prospect of over a week with nothing to do doesn’t feel me with joy but anxiety.
I need routine and structure to stay relatively sane (emphasis on relatively) though this structure is mainly external as left to my own devises I tend to spend too much time in bed or watching YouTube but the idea of days with nothing to do and falling back into bad sleep patterns reminds me of when that was all my life consisted of endless days of nothing stretching out ahead of me with little point in knowing what day it was when they were all the same, where I’d stay up half the night and sleep half the day (this was mainly a way of reducing the amount of time I had to spend around my mother) although how ever much I need routine I’m not missing getting in at 8:30 to prepare for volunteer training.
Christmas is also shortly followed by new year and the thought of change and reflection, I’ve been reflecting a lot recently especially on relationships as I mentioned in my last post, I’m tired of missing people especially people who don’t miss me who made promises they didn’t mean I don’t want to miss them anymore. In January I’ll be once again going through medication changes in an attempt to finally get off antipsychotic medication something I’ve been wanting for a while.
Disability, chronic illness and mental health problems don’t go away for the holidays it just means different challenges and things that can affect pain or fatigue and trying to manage pacing while still enjoying the day.
To anyone struggling this Christmas, with isolation, pain or mental illness you’re not alone this dinosaur sends love and solidarity. If you need support during the Christmas period the Samaritans are always there and comedian Sarah Millican will once again be doing #joinin on twitter for the 7th year running, have as good a Christmas as you can a big Christmas RAWR from The Perks of Being a Dinosaur.