"Don't Press The Button"

Another day, another day off work. At the moment I seem to spend more time at home than at work which doesn't take a genius to work out that I'm not getting paid very much at the moment.

Last week I had a conversation with my boss and she (absolutely understandably) said that if I can't commit to regular days working (in this case Thursdays and Fridays when I'm placed in the Diabetes Centre office) then they may have to let me go. I said to her that I understood totally, if you're promising an office help and the help doesn't turn up that day then it makes it doubly hard for them.

So far this year and for most of last year I've not worked a full week (excluding holidays/regular days off etc) because of days off sick. I think I worked out that by the middle of last year that I'd lost put on about 2 months full-time wages 'cos of sickness.

Every week I start off with the promise to myself that "this'll be the week I'm going to be in every single day" but invariably it's an empty promise as there will be at least 2 or more days that I just can't make it in. The past 2 weeks have been particularly bad with me only managing about 18-20 hours out of a potential 60 odd. It's been more of an exception because of Stelly-gate but still it doesn't bode well.

If I lose this job I'm stuffed. There is no employer in the world that would take me on with this sickness record. I don't believe I'd be entitled to any help as I'm currently (through my own choice) working as a zero hours employee and one takes into account when they accept the job that it could all end without warning. This apparently is the equivalent of leaving a job without having another lined up in the eyes of the powers that be.

So I spend the days that I'm off, like today, terrified of being 'let go' and the implications of that. I guess I fall down the cracks as ever, same as with the lack of any kind of health help available. It's a case of pay through the nose or 'just get on with it'. I'm lucky enough that my parents are going to pay for a private counsellor (I meet her this Friday) and I feel sick with guilt about it. I'm 2 weeks off from being 30 and they're still having to pay for my basic health.

I don't know how many others like me there are out there, trying to hold on to zero hours jobs knowing that if they lose them then they're pretty much on the dumpster of life. We'd sure as hell not qualify for any kind of disability help, I think you have to have a leg hanging off to even be considered nowadays. Then if, just for example, someone like me was to qualify then I would be seen as a scrounger, too lazy to leave the house and a drain on society. Trust me I already feel enough of a drain on everyone around me without upsetting society too!

I realised the other day that 2/4 jobs that I've ever had (I'm not counting my part time Asda job when I was at college or working for Powerplay as we all hated it and wanted out from there) half of them have gone to shit and right now this job seems to be doing the same.

Although I spent nearly 4 years at CMS/Veritek, God knows how, I had time that I was signed off and the rest of the time getting screamed at across the office or down the phone by two managers who had it in for me. They literally used to keep a spreadsheet of any mistakes I, or my department (making the assumption that I should get the blame either way) made and submit it to higher management each week. I left in the summer of 2010 as I couldn't take any more.

Then at my last job we had memory stick-gate and we all know how that went, just read any of my blogs from Mid 2014 to the start of 2015. Yet again I screwed a job up royally, the worst of it being that it was a job I really enjoyed with people I loved working with.

I've messed up two 'decent' jobs now, both pretty well paid with the chance for progression and promotion. Whilst I don't exactly have that in this job I do really enjoy what I do! I like playing with the letters, filing notes, having lunch with Helen (she works on one of the wards as the star Ward Clerk!) and so many other little things. But it seems my self-destruct is trying to trigger once again to screw everything up.

What's a girl to do?

Love Jen
XxxX

A Very Important Date

I really must make the effort to write more blogs. I used to be able to churn them out as regular as clockwork and write intelligently about all sorts of subjects, at the moment there doesn’t seem to be much inspiration about. I think 2/3 years ago I still felt a lot more intelligent and so felt I could comment on various subjects. Helen has been on Dementia Awareness courses over the last 5 months (she’s been nominated to be the Dementia champion on her ward, I’m so proud of her!) and they recently covered people having Mild Cognitive Impairment and she realised that I actually ticked a lot of the boxes. It’s obviously nowhere near as serious as dementia but it did confirm my long-running suspicions that my illness has made me stupider and clumsier.

 At the moment I’m trying to distract myself from my downward spiral by putting my energy into organising my 30^th birthday party. Whilst the thought of turning 30 still makes me want to curl up and morn my wasted 20s I feel that if it has to happen I may as well take the opportunity to throw a party. As many of you know I adore party planning, it’s getting into the teeny details that I like. From trawling the internet for the perfect paper plates to sourcing the perfect jar for my memory project (I leave the jar with a stack of pretty notecards for people to write their favourite memories of things we’ve done together, experienced, laughed at etc). I’m enjoying stocking up on bits for the party bags (I love party bags, I just love giving people gifts) and I’ve been able to get creative making thank you cards and bits for the bags.

 In another life I’dve been a great party planner, my speciality is making lists and complicated, colour coded spreadsheets of tasks to be completed and their priority – invitations were a red but the photo board is a yellow – you get the idea! I love details, ideas for decorations, things to make the event different and memorable – I’ve invested in photo props for the all-important selfies!

 In my great tradition of merging themes for parties (my crowning, pun intended, moment was my “Kings & Queens of Bad Romance” party for my 23^rd birthday combining 30 Seconds To Mars and Lady GaGa. I’ve also thrown Pirate, Festival, Cool Britannia and Mad Tea Party – well BBQ themed events as well as my charity bash for Rethink back in 2014) I’m going with Plane Geekery and Alice In Wonderland – catchily titled Flying Through The Looking Glass. It’s given loads of scope for decorations and party favours – Pilot hats for the selfies, giant playing cards for the tables and even an inflatable 747 (go look it up non-geeks).

 I’ve started early this time too, other times I’ve found myself rushing and actually not enjoyed the party at all – especially the Rethink one. So this time I’ve taking it easy and moving at a leisurely pace. And of course all the planning is taking my mind off Stelly which is always good as I think she’s at the point of poking my eye out if I give her one more concerned prod.

Gotta fly

Love Jen

XxxX

"Oh my ears and whiskers"

It's been 2 weeks now since Stelly's accident. I'm sure anyone who's friends with me on Facebook is sick of hearing about it. I've been advised to "move past it" but it's not happening.

The girls are my children, they are my absolute world. I can't have kids because of my BPD (it can be dangerous for Mum and kid with all the hormones) and having Endometriosis would make conceiving very difficult. I've trained myself to look on small humans (aside from a select view) with dislike and be relieved that I don't have them. If your child had made that horrendous screaming noise you'dve had nightmares every night since, I can guarantee that.

I can't look at her without wanting to cry, I worry about the effect it's having on poor Esme too. They went on the grass on Monday for the first time since the accident, Esme was jumping for joy and binkying all over the place at finally being out. All was well until she started chasing Stelly (she's always done that even though they've been 'done' since 2010) which upset Stell meaning I had to put them away.

The vet said that Stell is likely to always be incontinent so I've been wiping her every morning, which I'm more than happy to do to keep her comfortable. Every teeny thing she does has me paranoid. This morning for example I heard a squeak when I went to catch her to give her the wipes. I initially thought it was a bird and went on with washing her without further incident. Then I heard the noise again shortly after when she and Esme were doing their excited spin. I looked it up on the Internet and a lot of websites and forums classed it in with screaming (trust me it wasn't that). That or it being some kind of happy noise. This description kept popping up - 

"If you hear a rabbit make a shrill squeaking sound, there's a good chance that he's feeling happy about something. ... When rabbits squeak and the sound is a little bit deeper, it often signifies that they feel trapped. Perhaps you're petting your bunny and he wants you to stop so he can get back to playing independently."

I can understand the threatened explanation for when I was about to pick her up to be washed, I'd use some choice language if someone tried to do it to me! But she also made it with Esme, that's what worries me. She can't surely feel threatened by Esme all of a sudden? They're always together.

I know I should chill out and stop obsessing about every teeny thing that she does. I still feel responsible for her hurting herself. I can't have been holding her properly. Normally she's the far more docile rabbit when being held or carried rather than The Right Hon Miss Esme Wigglebum. But she managed to leap out and damage herself.

And no I can't just 'get over' this.

Love Jen
XxxX

Err so now what?

I recently finished my course of free counselling at Brightview in Eastbourne, unfortunately due to huge demand (as they say in Top Gun “the list is long and distinguished”) they can only offer 8 sessions per person as Brightview is a charity and receives no NHS funds. I’ve also recently discharged myself from my Psychiatrist as all he seemed to be able to tell me was keep taking the meds and lose some weight because apparently the lighter you are, the happier you are (what a great message to be sending out!), the plan was to discharge me at my next appointment anyway so I felt the appointment could have been given to someone in genuine need of urgent help.

When I first saw him I was really impressed, he spent ages listening to my symptoms before giving me a diagnosis of Borderline Personality Disorder with OCD. But in the later sessions he hadn’t been as interested, telling me to drink coffee and try not to fall asleep when I complained of my exhaustion (despite the fact that coffee ramps up my anxiety and leaves me headachey and nauseous) and ignored my accounts of the hallucinations I experience at night that disturb my sleep.

The counselling helped to uncover some things that I’d forgotten, or subdued that may have all been small triggers for the state I’m in today or for other problems that I have. For example being groped intimately by one of my classmates in the first couple of weeks of secondary school has probably contributed to my fear of intimacy with people (hence 6 years of singledom!); actually I just realised that today is the 6^th anniversary of me and Adi breaking up – there’s an irony! Losing Nat and blaming myself for not keeping a closer eye on her has led to my constant anxiety about bad things happening to friends and family members. So now that the counselling and psychiatrist input has finished I am once again adrift.

Because Borderline Personality Disorder (BPD) is quite a difficult condition (well done me for being awkward) to live with and treat it means that treatment options are few and far between. The counselling I was having at Brightview was what’s known as ‘Person Centred Counselling” which basically means letting me rant and rave with the counsellor asking questions to help identify underlying themes and events that might have caused you to feel the way you do.

The recommended treatment for BPD is what’s known as Dialectical Behaviour Therapy (DBT), the NHS Choices website has this to say 

–Dialectical behaviour therapy (DBT)

Dialectical behaviour therapy (DBT) is a type of therapy specifically designed to treat people with BPD.

DBT is based on the idea that two important factors contribute towards BPD:

you are particularly emotionally vulnerable – for example, low levels of stress make you feel extremely anxious

you grew up in an environment where your emotions were dismissed by those around you – for example, a parent may have told you that you had no right to feel sad or you were just "being silly" if you complained of feelings of anxiety or stress

These two factors may cause you to fall into a vicious cycle – you experience intense and upsetting emotions, yet feel guilty and worthless for having these emotions. Because of your upbringing, you think having these emotions makes you a bad person. These thoughts then lead to further upsetting emotions. 

The goal of DBT is to break this cycle by introducing two important concepts:

validation: accepting your emotions are valid, real and acceptable

dialectics: a school of philosophy that says most things in life are rarely "black or white" and that it's important to be open to ideas and opinions that contradict your own

The DBT therapist will use both concepts to try to bring about positive changes in your behaviour.

For example, the therapist could accept (validate) that feelings of intense sadness cause you toself-harm, and that behaving in such a way does not make you a terrible and worthless person.

However, the therapist would then attempt to challenge the assumption that self-harming is the only way to cope with feelings of sadness.

The ultimate goal of DBT is to help you "break free" of seeing the world, your relationships and your life in a very narrow, rigid way that leads you to engage in harmful and self-destructive behaviour.

DBT usually involves weekly individual and group sessions, and you'll be given an out-of-hours contact number to call if your symptoms get worse.

DBT is based on teamwork. You'll be expected to work with your therapist and the other people in your group sessions. In turn, the therapists work together as a team.

DBT has proved particularly effective in treating women with BPD who have a history of self-harming and suicidal behaviour. It's been recommended by the National Institute for Health and Care Excellence (NICE) as the first treatment for these women to try.

Accessing DBT is another challenge altogether. DBT is a very specific treatment so practitioners under the NHS are very few and far between. The only real place to find it is through private therapists and unfortunately I don’t think the rabbits would appreciate having their hutch remortgaged! A quick search for general counselling and therapy in the Eastbourne area throws up a massive blank. All the therapists that we have are private and charge £40 for 50 minutes! There is a free counselling service in Hastings but again that only offers 5 sessions, I believe I need ongoing support as it’s day to day things that cause me problems rather than just things in my past.

Case in point being a nasty incident with Estelle on Sunday where she jumped out of my arms as I was putting her in the hutch and hurt her leg, screaming in pain (the most awful sound I have ever heard). I had a full on meltdown which I’m still suffering with 3 days later. Thankfully Stelly only seems to have bruised herself and is starting to move around again, my only real concern now is her dirty bottom from where she has had an upset stomach and been peeing where she sits (a stress reaction I’m guessing).

So at the moment treatment-wise I’ve pretty much been cast adrift to fend for myself with my ups and downs, crazy ideas and brain flips. Here’s hoping that by some miracle the NHS suddenly decides to fund some help in the local area and I can get on the list.

Love Jen

XxxX

Ps Only I could shoehorn in a Top Gun quote to a blog about my mental health!

The Art Of Winning

Today I’ve been thinking about winning, I’m not quite sure why it’s popped into my head (fear not I am not having a crazed Charlie Sheen “winning” moment, I have no Tiger Blood on me officer!) but I’ve been thinking about what winning means to different people.

The obvious first answer to that is the winning of a prize be it in something you’ve worked hard to excel in such as a sport or an award that others have nominated you in to recognise the quality of your work. Another one would be winning something through luck such as the lottery, or the time I won Southern FM Party In The Park Pit Passes *nostalgic tear* . Wins can be life changing in so many different ways,  they could mean that you’re top of your profession or that you’ll never have to worry about finance ever again and can go on that holiday you’ve always dreamt of.

I think everyday life is full of small opportunities to win, I don’t mean spending a spare £1 on a scratch card on the way home from work because your day can’t get any worse (guilty!) but small achievements that can be made every day. After my blog earlier this week confessing to the tough time I’m having at the moment I had so much support coming my way from texts to tweets to Facebook messages. It reminded me how many people I have around me, like a team, and what do teams do? Why they work together to win!

It made me think about the day to day wins that people have, my friend Kay considered every day that she still walked this earth as a win because it meant that she was kicking her cancer’s arse (and boy did she kick it’s arse hard and repeatedly, I will write a blog about her, full of silly stories and lovely photos when I’m ready), someone giving up smoking or alcohol wins every time they don’t have that cigarette or drink, people have won every time they feel the love of their family or friends. I win every time I drag myself into work on one of my really bad days. I win when I chat to my friends. I win when I’m sat in the sunshine watching the girls play on the grass ( a particular achievement is when they look at me without glaring or wearing looks of utter disapproval!), I win when I look forward to things I have coming up; RIAT, The Killers, Lady GaGa, Airbourne (a tour would also be nice 30STM *cough*) and at a most basic level I win when I don’t give in to self-harm or worse.

Life isn’t always about the ‘big wins’ it’s about the little, every day wins that I often overlook when my illness tries to take over. Luckily for me I have a dream team of friends and family around the world to help me fight on.

Be scared brain demons, be very fucking scared.

Love JenX

XxxX

 

F is for Failure

Last night I realised that it’s a mere 2 months, 61 days,  1464 hours, 87840 minutes (you get the idea) until I turn 30. And no as you may have guessed I’m not coping, not one bit. The thought of reaching the milestone just reminds me of what a waste I’ve made of my life so far and how little, if anything, I’ve achieved. Basically my life at the moment involves, sleeping, eating, sleeping, eating with occasional trips to the bunny hutch and dragging myself to work when I can sum up the energy to leave my bed. Instead of my previous ‘highs’ when I was on less meds I now go between rock bottom and less rock bottom, never any better than that. What is there to celebrate in that?

 

Last summer I wrote a blog “Time for a re-boot” of my manifesto for how I was going to improve everything in the year I had until the big 3-0. Have I achieved any of these? What do you think? To refresh our memories my goals were thus –

Diet - I eat like crap, I really do, there's no hiding it. I'd lost weight last year but have put 6 kilos of it back on since the start of this year comfort eating because I've been so damn miserable. Although this goal isn't about aesthetics, if I lose weight then great, this is about looking after my body. Ditto with exercising, when I worked at the library I was walking around all day every day whereas now I'm on my butt all day every day. And being brutally honest it makes me feel sluggish and quite gross really. So I intend to try walking home from work and (with Helen's er encouragement) get off my arse and do something at least one day of each weekend. 

Learn a new craft. I love my photography, jewellery making, drawing, sewing and cross-stitching - surely adding another one on top of that can only make me happier?

Go to the places I keep threatening to go. If I had a £ for every time I said "I really want to go to The British Library/National Portrait Gallery/Tate Britain etc" I'd be able to afford that trip to America! Plus for the most part they're free, all it'll cost is a train fare and my time. 

So beginning with the obvious one of diet that’s completely gone to pot. I’ve fallen off the wagon, dragged it down the ravine with me and ended up in a blazing heap at the bottom. Let’s just say I’ve managed a whole new world of fat. Comfort eating is my life at the moment, in a way I guess knowing how unhealthy it is is some kind of nice-tasting self-harm/slow suicide. When I last saw the psychiatrist he pretty much said that being less fat and lazy would help all my problems, I didn’t like to point out that eating is my alternative to cutting myself, far less messy and scar-prone. And how the hell am I supposed to get the energy up to go on some kind of route march when all I do in my spare time is sleep because I need it? I ache all the time which I assume is through lack of movement, and yes I feel disgusting and spend plenty of time fat-shaming myself to save trolls/the media time. If it helps at all I don’t go to the psychiatrist any more so I’m a teeny bit less of a drain on NHS resources!  I saw a programme the other day featuring a lady with Borderline Personality Disorder and she complained of the same all-consuming exhaustion making her unable to get up and move, it’s a symptom of the condition that the exercise-Nazis tend to overlook. So I have in fact managed to get even fatter since last summer, maybe that can be listed as some form of achievement?

 

Learning a new craft hasn’t really taken off, more because I’ve been busy with projects from crafts I already know, so I can’t really call this one a failure as I’ve been being kept out of mischief with cross-stitching and invite-making for my party (more of that later).

 

Days out etc, that hasn’t really happened. I miss going to London so badly, I still haven’t made it to the portrait gallery or the library. Helen and I were supposed to go last week but then the Westminster attacks happened and Helen didn’t want to go (personally I would rather stand up to bullies but it’s understandable), funnily enough it proved my point that whenever I look forward to something it never happens. I’d been excitedly planning the trip for weeks. I know it’s pretty selfish to blame a terror attack on my bad luck with planned fun times but still, it does add up. I’ve been lucky enough to go to a few gigs (Deap Vally, Green Day and The Kaiser Chiefs, I had Pretty Reckless tickets too but then my laparoscopy happened and I couldn’t go – oh look more planned fun cancelled!) so I can count them as leaving the house at least! At least we’ve had a summer-full of crap on YouTube XD

 

So no as you may have guessed I’m not in a good place and in the words of My Chemical Romance “I’m not ok”. I feel like I’ve failed at life quite frankly, a waste of a human shell. This shell could have been given to someone who would do some good in the world, be an achiever, have a fully functioning brain, be attractive and intelligent. I’m attempting to make light of my birthday by planning a party, making invites as an excuse to get some drawing in. I want to have an Alice In Wonderland theme but don’t have the get up and go to make a start on the decorations or the party favours (despite buying a pack of 20 keyrings for an idea I had). I have the perfect image in my mind of photo props, decorations etc but no inclination to make it happen.

 

Story of my life really

 

Love Jen

XxxX

 

Missing Man Formation

The general consensus is that after a loved one’s funeral life goes back to normal, you’re suddenly ‘over it’ and ready to function once more.

 

Let me assure you that this is pure bollocks. If anything the act of burying Kay makes her seem all that further away. I talk out loud to her all the time (eliciting some odd looks when I’m walking around in public muttering to myself) in the hope that she can hear me. I had to take all my photos down of the two of us together as looking at them is just too painful, my photo wall now resembles a missing man formation, which in my plane geekery seems appropriate.

 

She’s given some of us signs that she’s still around. I’ve not been lucky enough so far, and I’m worried that the meds I’m on are somehow blocking her out. Stopping them isn’t an option and I feel awful that she might be trying to talk to me but can’t make it through the medication barrier. I’m hoping that instead she’s been visiting the buns and checking that I’m not starving them of treats!

 

Life just doesn’t seem worth the effort. Why bother going out when I can spend the days asleep escaping from the pain? I had to force make-up onto my face this morning for the first time in almost two weeks, it feels fake and clownish. All my non-PJ clothes just feel uncomfortable. I don’t want to leave the house, it just makes me so anxious, just walking down to the hutch yesterday morning ended with me panicked and in tears – much to the girl’s disgust on their 8^th ‘gotcha day’ (the day they came to live with me). I’m not looking forward to anything I have planned, not seeing Green Day next month or even achieving my dream that I’ve had since I was a kid of going to the Royal International Air Tattoo in July. I’d tried to kid myself that I could plan and look forward to stuff buy starting to plan a 30^th birthday party but I’m fooling no-one least of all myself.

 

I’m at work today and to be honest I’d probably have been far better off still being asleep, I’m all over the place forgetting things I’ve been told 2 minutes before, leaving stuff everywhere and forgetting what I was doing, more of a hindrance than a help today.

 

God I miss her

 

Love Jen

XxxX