THE ASSESSMENT – FRIDAY 13 MARCH 2020

I didn’t sleep at all the night before the assessment.  They are so stressful.  Even though I’ve been through several of these now, both for the ESA and PIP, it’s still a worrying time because of the financial implications.  Without that income, I am completely screwed basically.

As I didn’t sleep, I had plenty of time to have a shower, to take my time, read the paperwork again, get some petrol and collect Jill to come with me.  Originally, Mum was adamant that she was coming with me but given the increasing concerns about COVID-19, I had to have a serious conversation with Mum about her not putting herself in harm’s way by using public transport to get to my house and back to Dad again.  There was absolutely no guarantee that she wouldn’t inadvertently take something back to Dad and I wasn’t going to let either of them be at that sort of risk.  Thankfully, Mum wasn’t offended that I had made the decision and was appreciative of the fact that I’d put their health first, even though she knows all too well how stressful these assessments are for me and how emotionally draining they are.

So, Jill and I headed to Chatham, in record quick time to be fair.  We checked into the assessment centre and then it was a waiting game.  I saw the assessor that I’d had last year wandering around the building.  Oh hell, no.  Please don’t let me get him again.  He pulled me about like you wouldn’t believe last year and dragged me through the ringer so I really didn’t want to see him again.  Mum came with me last year and even she was shocked at the questions this guy was asking and what he was asking me to do and the fact that we were in there well over an hour.

Thankfully, I didn’t get him.  I got a lady who I had never seen before.  When she first came out, she was very Head Mistressy shall we say and I just had a sinking feeling that this was going to be a really rough meeting.  She called Jill and I into the meeting room and started going through the form and the questions that she had.  She started with the mental health side of things.  I answered as best I could and Jill made a few comments here and there as to what she does as my backup and support.

After just over 30 minutes, the assessor said that was the end of the meeting.  She hadn’t even discussed the physical side.  I mentioned that I’d finally got a diagnosis about the fainting and sickness (more of that in the post of The Ugly – Update and Diagnosis!!) but it didn’t even register with her; she wasn’t bothered at all.  She said that it will take about three to four weeks to get a decision.  Although 13 March 2020 was before the COVID-19 restrictions all came into place, so I’m not expecting a letter any time soon.

When we came out, Jill said that it was very positive that she hadn’t touched on the physical problems.  Jill reminded me that it’s a point based system and that I probably had enough points just using the mental health issues and, therefore, the physical problems weren’t an issue.  But, nothing has changed since last year (apart from the extra bonus of the fainting and the sickness), so why did last year’s assessor go through absolutely everything?  That has left me a little concerned to say the least.

I was completely exhausted by the time Jill and I got home – both physically and most certainly emotionally – so I had a little nap and then phoned Mum.  Mum made me even more concerned because, currently, I’m not under the local Oxleas Mental Health Team because there is no therapy for them to offer me and DBT isn’t offered in my Borough because of funding.  Mum took that to mean that they would think I’m capable of working because I have no professional, medical support at the moment.  Major freak out.  However, that is no different to what it was last year either.  I reiterated in my form this year that I’ve basically been released out into the world without any professional back up at all and this was clearly stated in my assessment meeting too.  Hopefully, the assessor has taken it in the way that it was meant, and not how my Mum took it!

Obviously given the current Coronavirus crisis and the country being on lockdown, I’m not expecting a letter about the ESA any time soon.  I certainly have heard anything as at 7 April 2020.  I can’t think about it at the moment.  I have to concentrate on the self-isolating and social distancing and hoping that my family and friends make it through this crisis. Once I know, you’ll know.  Stay safe everyone.

This all happened pre-COVID-19 self-isolation and social distancing advice.

As expected, the dreaded letter arrived on the doormat on Tuesday 25 February 2020.  This was after having to wait 2.5 weeks to see my GP because he had been sent my form and needed to go through it with me.

Initially, the letter summoned me to a an assessment meeting in Wembley at 9am on Wednesday 4 March 2020.  Really?  Wembley at 9am on a weekday from south-east London?  On public transport?  Not a hope pal, not a hope.  Those of you who know London know that trying to get from SE London to NW London for 9am on a weekday would probably mean me having to leave the house well before 6.30am to stand any chance of getting there.  Also, those of you who have worked in London are well aware of what a nightmare public transport is in our beloved City during rush hour (well rush three hours).  Factor in that me and public transport have a very chequered history of late in regards to panic attacks, 9am at Wembley was not going to work.

That meant phoning them up and changing the venue.  Oh, that was fun.  Because you really don’t get much notice for these meetings, I phoned the same day that I received the letter.  The chap on the end of the phone was very nice but clearly had absolutely no idea about the geography of trying to get around London and the South East in general.

Firstly, he wanted to know why I wouldn’t go to Wembley, as it is (in mileage terms) the closest venue.  Once I’d convinced him that getting across town on public transport really just wasn’t an option, I requested to be booked into the assessment centre at Chatham.  Chatham is 30 miles away from me but it means that either my Mum or Jill can drive down there and it goes against the flow of traffic.  It would only take an hour tops to get there if the meeting was first thing in the morning.  I always take Mum or Jill with me to these assessments because they are so stressful and I get very upset in the assessments talking about anything.

Well, the chap at the end of the phone dismissed Chatham initially and said that I should go to Croydon or Romford.  Immediately not even considering trying to get to either of those on public transport (which would mean going into London and back out again), I think of the driving options.  Let me tell you about Croydon.  That would involve either the South Circular or the M25.  Nope.  Romford involves crossing the Thames which would be either the Blackwall Tunnel or Dartford Tunnel.  Either of those going northbound of a morning are their own personal corner of hell and totally out of the question.

For the last time my dear boy, Chatham please.  He reluctantly agreed.  I finally got my appointment at Chatham on Friday 13 March 2020 (what a great day) at 10am.  Well, at least it will be over with by lunchtime – hopefully.  I’m normally in there for well over an hour.  It all just depends on how long I’m kept waiting before going in.

I had a week to read through my paperwork again and prepare myself for the assessment.  There will be a separate post about the assessment itself.

So pretty much the day after I had my ultrasound, my GP surgery called to say that the doctor would like to see me about my scan results. Yeah, I bet they bloody well do now that we finally have a diagnosis! No shit, Sherlock! Well, the next available appointment was a mere 3 weeks and six days away! Oh well, it is what it is, I’ll take it. And this was all BEFORE Coronavirus went absolutely batshit.

Well, on Monday 9 March I trotted down to my GP surgery to find out what was going to happen next. I was expecting a fairly standard consultation, referral back to gastroenterology and the completely ridiculous consultant I’d seen last time who had told me I would have to live with it.

Erm, not so much. The gallstones part, to be fair, was straight forward. Referral to gastro but obviously by this stage, Coronavirus was gathering pace and it was just going to be a wait and see in terms of how long it would take to get an appointment and when. Fair enough.

The interesting part came by way of a discussion about my kidneys…again! More to the point, the “anatomical anomaly” that the radiographer found very “curious” during the ultrasound. Well, it’s a bit more than curious let me tell you. It turns out that I have, what is called, a Duplex Kidney (my left kidney). I basically have an extra kidney attached to the left kidney which is why it showed up as so much bigger on the ultrasound. My doctor showed me the pictures of it from the ultrasound and it looks bloody huge! There’s no definitive reason as to why this happens. I was born with it.

If a Duplex Kidney is going to cause problems and needs attention, this normally happens in childhood with multiple urinary infections. However, not one urinary infection when I was a child so, clearly never a problem. Therefore, I have managed to go through 45 years of my life without knowing I have a rare and special kidney! As it didn’t cause me any problems in my childhood and not knowing I had it until now, there’s no need to do anything with it.

All the doctors in my surgery have had a look at the pictures apparently because none of them had seen one in a patient before. They’ve seen it in the text books, but never in a patient. That’s how rare it is. Must admit to feeling quite special at this point!

Apparently, it goes quite a way to explaining why my blood pressure is low because, with this extra chunk of kidney, my body gets rid of toxins pretty quickly and it also explains that, when I did used to drink, I wasn’t a hangover sufferer. Damn the medication and not being able to drink now! My doctor took my blood pressure whilst I was there and it was better than hers! I’ve got a good 15 years on her, a good 7 stone and I’m a smoker. Have some of that! Back of the net!

So, I made my way back home feeling quite chuffed that if my sister ever needs a kidney, she’s getting the right one, I’m keeping the left and special one and we should both be functioning normally! Obviously, I phoned Mum and told her and just confirmed with her that I’d never had a urinary infection as a child. She confirmed that aside from really bad Chicken Pox, two bouts of pneumonia and a knackered back, I was actually a pretty healthy child. I think she’s actually quite happy about my Duplex Kidney and took great pleasure in informing me that she would be dining out on this little nugget of information for quite some time!

The upshot of seeing my GP in terms of my gallstones is that I do have an appointment with the Surgical Team at a different hospital to my usual one. It’s not until the middle of May and, of course, this is all subject to Coronavirus moving the goalposts. The alternative hospital doesn’t have an A&E Department so I’m assuming that they are moving non-urgent “routine” appointments and surgeries to the other hospital to keep the A&E based hospital free for Coronavirus patients. That appointment will decide whether they can just remove the bag of marbles that are swinging around in my gallbladder at the moment or whether they decide to just whip out the whole thing. In the meantime, my GP advised that if I have an “episode” where the little buggers get stuck that lasts for more than hour, I should dial 999.

Unfortunately, I had an “episode” a couple of days after seeing my GP that lasted for just over two hours. I didn’t phone 999 at that time because the NHS is just way overwhelmed with Coronavirus right now. I’ve said to myself that if an “episode” lasts more than two hours, then I’ll call. The pain is absolutely awful and I think two hours of that is enough and, quite frankly, if I haven’t thrown my guts up by that point, it’s not going to happen any time soon.

We shall see what happens in the coming weeks.

We are now over a week into our semi lockdown, only being able to go out for essential food supplies, medication and for exercise. Those who have to work are able to go out for work.

For those who are still working – the NHS staff, the Emergency Services workers, the carers, the supermarket and other shop workers and anybody that is still having to use public transport and get to work – I do thank you from the bottom of my heart. Your selfless actions of still doing your job mean that whilst the rest of the country are (needlessly) panicking about eggs and loo roll, you are genuinely on the front line, putting yourselves and your family at risk for our benefit. You are the true heroes of this crisis.

As mentioned in a previous post, social distancing and semi self-isolation hasn’t really impacted my life a great deal so far in terms of disrupting my going out. I’m not exactly a social butterfly under “normal” circumstances and my usual way of life is to be at home for days and days at a time without seeing another human being. This doesn’t mean I’m happy to be at home for days and days at a time but, due to the anxiety and depression, it’s just what my life has been up until now for a very long time.

Whilst social distancing has impacted many people negatively with having to stay indoors, it’s actually made me have to go out! Usually, I have my shopping delivered via online shopping. I haven’t been able to get a delivery slot for weeks now (from any of my chosen supermarkets) and am unable to get a delivery slot until at least the middle of April. That, in itself, induced a mild panic attack of how was I going to get milk and the basics. I certainly didn’t (and still don’t) understand the obsession with loo roll and eggs and the resulting empty shelves. I saw the pictures of the empty shelves, the queues and the panic buying and, whilst I couldn’t understand why people were behaving like that, it did start to make me worry as to how I would get the essentials.

So, for the past couple of weeks I have had to actually venture outside and, basically, do battle with rude and aggressive stupid members of the British public whilst trying to just buy milk and cat food basically. On my previous trips out, I’ve walked to empty shelves, I’ve seen stockpiling, I’ve been sworn at and basically found the whole experience of having to shop extremely testing and hard hitting on my mental health. Yesterday, I had to venture out again. I was originally going to go on Saturday but I just couldn’t face it. Thankfully when I got to my local supermarket, they had put a queuing system in place to actually get into the store to reduce the masses in the store at any one time. When I got into the store, I found the shelves to be reasonably full and managed to get all of the things that I needed (apart from “ladies things”) with minimal fuss. I managed to get milk, cat food, fresh fruit and vegetables, chicken and pasta. I chose to use a self-service check out and paid by card. Whilst I wouldn’t say that the experience was pleasant, it was far more civilized than my previous four trips out.

I did go into the store wearing my latex gloves and a mask. One thing I wasn’t prepared for with the mask was that every time I breathed out, my glasses steamed up! I couldn’t see a damn thing. I tried taking my glasses off, forgetting that I am as blind as a bat without them too! As I was walking around the supermarket, there were plenty of people also wearing masks but not one of them was sporting a pair of glasses, so I couldn’t ask them how they were avoiding the steaming up! It took quite a lot of adjusting of the mask and time for my body temperature to self-regulate before the steaming up finished, by which point I was at the check out anyway! It’s all a learning curve I suppose.

I did find it reassuring being able to hide behind the face mask. I hide a lot (physically and emotionally) and having a face mask (although not covering my entire face) gave me my reassuring anonymity. Also realising that the vast majority of the public have now taken on board the gravity of the situation and are adhering to the Government restrictions also gave me some reassurance. The thing my previous trips out had shown me more than anything was that the public were just not taking this virus seriously enough and I found that very frustrating and the impact on my mental health was dealing with that frustration and not letting it turn into anger.

What I have noticed more than anything this week is how quiet it is. As I live in south-east London, I live under the flightpath for Gatwick Airport and live very close to City Airport. I am used to the aeroplane noise and seeing the vapour trails in the sky. I have really noticed the lack of noise, certainly from City Airport. The other evening as it was getting dark, I was sitting by the back door in the kitchen and I looked up at the sky and there were absolutely no vapour trails at all and there wasn’t one solitary aeroplane. It was the most beautiful clear, dusk sky I’ve seen since I lived way out in the countryside as a kid. I didn’t bother photographing it or videoing it, I just wanted to take it all in. I wanted to appreciate the beauty, the calm and the peace. I spent about half an hour just practicing my deep breathing exercises, taking in the cold, calm, quiet air and trying to get my mind to rest. It worked, for a while.

I’m going to do a separate post regarding the impact on my mental health, especially as over the weekend I’ve seen more and more on the news about mental health issues now that we have been in semi lockdown for over a week and some hints and tips that I have found useful for dealing with it. I just wanted to give you an update on the initial impact of semi lockdown on someone who doesn’t usually go out, but now has to.

I know that I’m way overdue giving you this update but between having a scan, waiting to see the doc and the actual results, coupled with Coronavirus, there has been a lot going on.

The last update I gave you was after I’d finally managed to get through a colonoscopy successfully!  Third time was definitely a charm on that one.

Well, I trundled through Christmas and New Year waiting for a letter confirming the outcome of the colonoscopy and what would happen next.  With everything that happened with my former work chum (see the Dealing with Anger post), it wasn’t at the forefront of my mind.

By 21 January, I was fed up with waiting.  I phoned the secretary of the gastroenterologist who had originally referred me for the colonoscopy.  She said that I should have had a letter and that letter stated that because nothing sinister was found, I was being discharged from his clinic and, basically, it was something that I would have live with.  Are you absolutely kidding me?  Live with this?  Not a fucking hope.  Oh yes, I really want to live with not knowing when I’m next going to be in excrutiating pain for hours, vomiting like there’s no tomorrow and, potentially, collapsing.  Yup, that really sounds like the way to live.

I booked an appointment with my GP.  Thankfully, at that time, only a 10 day wait.  I saw my GP and he said that he would refer me for an ultrasound (just about the only scan I haven’t had) and some more blood tests, just purely liver function tests.  That came through to go on 11 February, the day after my chum’s funeral.  At least it was going to be soon.  It couldn’t come soon enough.  Between seeing my GP and getting to the hospital for the scan, I had two really quite nasty episodes and was really getting very down about the whole thing.  I really hoped that they could find something.

Jill came to the hospital with me.  We were early so I thought I’d see what the queue was like for blood tests and see if I could get mine done before my scan appointment.  We walked into the blood test room and you have to take a ticket like the deli counter at Tesco.  My ticket number was 458 and I looked up on the board and the previous number called was 456.  Touch.  We literally didn’t get a chance to sit down.  Literally, as soon as I parked my backside on a chair, my number came up.  In and out in seconds.  A great nurse who managed to get a vein straight away and I absolutely didn’t feel a thing.  To be fair, I have no problem with blood tests being done, I’m not worried about needles at all.

So, it was straight out of the blood test room and onto the Imaging Department.  Checked in straight away and was told which waiting area to go to.  Again, we barely had a chance to get our backsides on to the seats and I was called in to the scan room.

The Radiologist was quite young but was training a proper newbie so I was getting the full once over.  He had my lying on my back and on both sides.  He was really getting stuck in and I was starting to get a little worried that he had found something.  He then asks me if anyone has ever spoken to me about my kidneys.  My kidneys?  WTF?  What’s wrong with my kidneys?  Mini freak out on the way!  He said it was nothing, just that my left kidney was a lot bigger than my right kidney.  WHAT?!!!  What does that mean?  Is there a problem?  Is it inflamed?  What’s happening?  Apparently, it happens and it is just an anatomical anomaly that he found curious as he’d never seen it in real life before.  Okay, son, well now that you’ve finished scaring the crap out of me, you can take your curiosity about my anatomical anomaly and shove it where the sun don’t shine!!  Have you found anything that explains why I get so sick?

Yup.  I’ve got gallstones.  A whole bag of marbles in there apparently and when they get stuck, that’s when I get sick.  Finally, a diagnosis.  You have no idea how happy I was to learn that I have gallstones.  Thank God.  He said that he would send the report back to my GP and my GP could take it from there for an onward referral.  I could have kissed him, I was so happy.  Everything else is absolutely normal, no worries, nothing sinister.  I just have gallstones.

I went back to the waiting room and immediately told Jill the good news (and about my big kidney) and she was thrilled too.  We said it felt very odd to be so happy about something that is still quite serious and will require some sort of surgery, be it just zapping the stones or taking the whole gall bladder out.  But, gallstones was the best news we could have hoped for given my symptoms, and we were running with that!

A further update will follow once the doctor has been seen and what happens next.  A happy day that all I have is gallstones.

 

 

 

Let’s face it, it was only a matter of time before I waded in about the coronavirus pandemic.  More than anything, right now, I’m very disappointed in the British.  Not only are there certain members of the public behaving like utter vultures in the supermarkets, there are also those who have just shown sheer stupidity by going to the beaches, parks and other open spaces over the weekend.  Snowdonia reported their “busiest ever visiting day in living memory“ [Source: BBC website] on Saturday, when we are supposed to be practicing social distancing and, for some, self-isolating.

What were you stupid people thinking?  Yes, the sun was out.  Yes, the schools were closed on Friday night.  But, this is not an extra Bank Holiday.  This is not the Easter Holidays starting early.  This is the short-term loss of our desire (and right) to move around freely for the long-term gain of saving lives, saving the NHS from breaking point and, quite possibly, saving your loved ones.

I could not visit my Mum yesterday to spend Mother’s Day with her, as I’m sure thousands around the country were the same.  My Mum is in the “vulnerable” age group and my Dad has underlying health conditions which make him even more vulnerable than my Mum.  If I’d have really wanted to, I could have chosen to get in the car and drive to their house.  Trust me, I REALLY wanted to.  My Mum is normally pretty chilled out about Mother’s Day; she doesn’t expect to see us; she’s not overly fussed by it.  But, this year was different for me.  It’s the first year without Gran, so it’s the first year that both of my parents haven’t had their Mums, so I wanted to go home and be with them.  I knew my sister wouldn’t be able to make it, she is now a “key worker”, working for a supermarket, and she was due to work yesterday.

Instead of being selfish, I chose to stay at home in the hope that the short-term loss of not seeing my parents, might go towards the long-term gain of them still being around for as long as possible.  I spoke to Mum yesterday and she was fine.  I told her that I felt useless and helpless being so far away from them, but they have friends who are offering to get shopping for them and bits and pieces.  They are lucky in that they have they each other, although I think my Mum may be about ready to murder my Dad by the end of this week, let alone after another 11 weeks of self-isolation for them!!

My life normally consists of me not being very sociable to be fair.  I don’t leave the house much and it usually involves a special occasion or special people to get me out of the front door.  So, essentially, social distancing isn’t a huge change to my life.  However, even I had a moment on Friday, after the announcement that the pubs were to shut, where I was “well, what if I want to go out for a drink”?  Firstly, I couldn’t actually tell you the last time I had an alcoholic drink, let alone the last time I had an alcoholic drink in a pub!  It’s just the principle of someone telling me that I’m no longer able to make that choice.  It really has brought it home to me how lucky we are to live in a free society and how much we take for granted.

Obviously, this manifested itself at the weekend with people running to the parks, the beaches, up mountains.  We’re a free people being told we can’t do something.  Yup, only dictators do that and we’re just not used to that.  What it should make people realise (hopefully and eventually before it’s too late) is the seriousness of the situation.  For Governments across the world to implement such restrictions, quite frankly, this virus isn’t fucking about.  It’s a killer.  It’s a big killer and it’s not going away any time soon.

Hopefully as well, once the gravity of the situation has really sunk in with the nation, a new “normal” way of living will start to manifest itself, where people aren’t acting like utter animals in the supermarkets.  We’ve all seen the photos of the elderly people looking at empty shelves, the viral video of the nurse trying to do her shopping after finishing a 48 hour shift.  It’s ridiculous.  As someone with mental health issues, being around so many people in a supermarket behaving in such a rude and aggressive manner is way too much for me to deal with.

I can’t get an online delivery slot for three weeks (which is my usual method of shopping), so I have to go out now and deal with people.  I went to my local supermarket just before they all started working together and putting restrictions in place and because I asked a lady if she would move her trolley out of the way, so that we (the other shoppers) could get something from a shelf, I got told to “fuck off.  I was here first”.  That woman had absolutely no idea what it had taken me that day to get out of the house and actually get to the supermarket.  Being someone who just despises all forms of confrontation, I didn’t have a witty retort or a comeback that I could fire her way!  I was absolutely gobsmacked that someone could be so rude when she was surrounded by members of the public, just trying to do their shopping.  I was an absolute mess for the rest of the day.  I was really shaken up and I didn’t want to go out at all last week.

Today, however, I am nearly out of milk and cat food.  My nearest Sainsbury’s appears to be the store that has had restrictions in place for the longest so I’m hoping that they will have had a chance to re-stock.  I will be going out wearing my latex gloves and with my hand sanitiser at the ready.  Let’s just hope the general public are a little calmer than has recently been displayed.

This post was written over the course of two weeks.

As I have mentioned in previous posts, trying to deal with the anger is the one emotion that I really struggle with and today, I’m angry; really angry.

Last night I found out that a former work colleague who I have always had a great deal of time and respect for is basically dying. She has been given weeks to live.  Jill is a really close friend of hers and is in absolute pieces about it all. She is completely devastated.  It’s the first main member of the “work crew” from those days (more than 20 years) to be leaving us. The lady concerned has always been so full of life, so vivacious, so funny and a big part of a lot of people’s lives, especially Jill’s.  Now, don’t get me wrong, if she didn’t like you, you knew about it but I always got on incredibly well with her and had plenty of laughs with her along the way.

What I’m angry about is the unfairness of it all. She only started feeling unwell towards the end of last year and in a matter of weeks, she has been told that she has a very rare and aggressive cancer that has spread and it’s terminal.  She is no age at all and is such a good person.  The primary cancer is bowel cancer, of which she had absolutely no symptoms (which is incredibly scary), and it has spread to her liver and her lungs.

This coupled with finding out earlier in the week that another work colleague from a different firm, died at the weekend, in his 30s in what appears at the moment to be somewhat mysterious circumstances.

Unfortunately, it has triggered not only anger about these two new events but also reignited my anger about losing Grandma last year.

As I am right in the middle of being angry, I wanted to try to get my feelings down on paper to share them. I am trying to do everything I know to alleviate the anger.  I started with the deep breathing exercises from my Mindfulness training.  No go today.  All I can do is think about my two former colleagues and Grandma.

Okay, let’s go for distraction.  What can I do?  Well, I do need to do the housework but where I’m angry, and also sad, I have absolutely no motivation to clean the kitchen floor or vacuum the living room, let alone get the ironing board out and tackle ironing mountain.  I’m tetchy.  I want to eat,  I want to self-harm.  I also feel that if I spoke to anyone, I would just scream and shout at them and that’s not fair on them.

Loud music. Loud, thumping, rock guitar music.  I’ll try that.

I start with “This Girl Gets Around” by Sammy Hagar.  I get through the first verse and the chorus and I’m skipping onto the next track as it’s not hitting the spot.  As my iPod is on shuffle, I have no idea what is coming next. “Breathe Easy” by Blue (don’t judge me for liking the odd boy band). Mmm.  It’s a sloppy love song but I listen to the whole lot with tears welling up but no outburst of crying.  I text Jill to see how she’s doing today and if she got any sleep last night.

Next up is Whitesnake’s “You’re Gonna Break My Heart Again”.  Whilst being a guitar shredding rock classic, it’s still a sloppy love song, so that gets skipped pretty quickly! And straight onto another one “The Extra Mile” by FM.  I would stick with this one but it’s all about getting through the hard times in a couple. Nope. That’s not happening.

There follows a whole section of songs that I skip.  I’m starting to think that I need to just get into the iPod and choose one and then “No one is to blame” by Howard Jones pops up.  Not very rock, no guitar shredding and definitely not one I could potentially dance around the house to.  However, it seems to be the perfect song.  No one is to blame for what has happened over the past few days. No one is to blame for my Grandma’s death.  I guess as human beings, we always want to be able to pass on our feelings onto someone or something that we can blame as it gives us a focus.  When you don’t have a focus or a target for those feelings, what do you do with them?  That’s when someone with BPD and/or Bipolar normally gets into a lot of trouble.  Jill has replied. She’s not doing very well. She said she had a good cry last night and cried a bit again this morning.

As I’ve mentioned previously, it’s times like these when I feel what I call “tetchy”. I want to eat, self-harm, I’m restless and I don’t know what to do with myself.  I’m sticking with the music approach so that I don’t self-harm.  I’ve still got some Christmas chocolate to make my way through so I have a back-up plan there.

Then, a whole series of songs start coming on that really underline how I’m feeling. Please feel free to google the full lyrics to these songs but I’ll give you snippets and how they relate. “Under the Sun” by Dare.  Absolutely spot on.  The first line of the song is “Nothing lasts forever, especially the things you always wanted to”. No explanation required. The first line of the chorus is “Under the Sun. Where can we run”?  All I want to do is run away from this anger, this feeling on my chest of being crushed under the weight of the anger, the pain.  The weight of the anger actually feels like a physical pain.

Then, “Sweet Home Alabama” by Lynrd Skynrd. Yes, that will do.  I find it a happy song. There is a smidge of dancing in my chair and touch of singing along, all the while desperately trying to dissipate my anger. It helps, albeit incredibly briefly.

“Renegade” by Daughtry is next. Total guitar shredding from start to finish. “Can’t wait another minute, I’m right here ready to run”.  That’s so true.  I want to run away so badly. I want to run away from how I feel now, my life, everything and everyone.  But, the logical side of me knows that you can’t really outrun this sort of pain or anger.  It wouldn’t matter where in the world I was, I would still feel the same.  Would anyone really notice if I disappeared?  I have thought about getting in the car and just going but I also know that my concentration is in no fit state to be getting behind the wheel of a car.

And then the one appears that makes the difference. “The Thing About Love” by Matt Terry. Lyrics within this song include “Just when you think you’re in control, it pulls you in and then lets you go”.  This has triggered streams and streams of tears and they’re not silent tears either.  It’s the guttural crying when you’re really releasing pain.  I can’t type any more, I have to go.

Two weeks later……..

It is with great sadness that I have to tell you that my work chum passed away at the end of last week. It had only been two weeks since we had found out and only three weeks since she had been told it was terminal.  It was that quick.  I don’t think we had the chance to really get our heads wrapped around it, let alone come to terms with it.

I have been reading back through what I had written when I was angry. I cried for about three hours after I stopped typing.  It just wouldn’t stop.  Many times I tried to catch my breath and tried to get myself together but it didn’t work.  My whole body was shaking with it.  Many times, I just cried out.  I just had to let the tears come and let them fall. They did.  I was completely exhausted at the end of it.  I tucked myself into bed and stayed under the duvet for around 12 hours.

Unfortunately, over the course of the next 24/36 hours, I also had a couple of “episodes” of vomiting and feeling faint and sweating.  The episodes didn’t last long enough for me to call for an ambulance but, added on to feeling of utter emotional exhaustion, it was a really long weekend.  The good news is I didn’t self-harm but I also didn’t speak to anyone or leave the house. I reverted to my usual course of action.  I retreated into my shell, into my house (into bed) and, as far as anyone was concerned who texted, I was just tired and having a “bad run” with the BPD.

I have been checking in on Jill daily since we got the news and Jill managed to get to see our work chum before she was moved to a hospice and before she deteriorated drastically.  Jill told me the other day that she had passed. She said that she’d had a cry but she did know it was coming and I think that she’s just grateful that she got to see our chum and tell her how much she was loved before it was too late.  I had a little cry on the phone to Mum when I spoke to her on Friday night.  Jill and I went out on Saturday to get some fresh air and distraction and I wanted to make sure that she was okay.

I’m just sad now.  Sad for everything and everyone.  I will, of course, be going to the funeral to pay my own respects and to support Jill.  For now, it’s back to distraction techniques, deep breathing, eating everything in my path and listening to good music.  I don’t know if crying for hours and retreating to my bed can be deemed as “dealing with the anger”.  The best I could do was, in the words of Shotgun Messiah, “Ride The Storm”.  Sometimes, that just has to do.

In my little head, there is a huge amount of shame associated with the fact that I am currently living on benefits. I have always worked, I have always paid taxes and now I find myself in the situation where I am dependent upon the Government.

I don’t want this to be my life. I want to be working again, earning my own money and being as independent as I have been for the vast majority of my adult life. I want to buy a small property somewhere as an investment for the future and I can’t do that whilst I’m on benefits.

To be fair to myself, I have paid a shed load of money over the years in Tax and National Insurance, especially when things have gone batshit crazy when I was working and all the overtime I clocked up. So, there’s a bit of me that feels totally justified in claiming benefits at the moment whilst I’m trying to get back on track. There are those that would say that I am the sort of person that the benefits system is about; someone who has worked but just needs help for the moment.

Obviously, there are the stories that make the press of how much money some people are claiming in benefits, be it UK citizens or, what I think to a certain degree is scare mongering, how much in benefits immigrants can claim.  One thing you can be sure of though when it comes to claiming benefits is the great British pastime of paperwork and red tape.

The first part of that is to fill in your Capability for Work Questionnaire.  My borough is not one who has had the very controversial Universal Credit rolled out completely yet. I am still on the old system of Employment Support Allowance (Income based). This is because when I was receiving my sick pay from work, I was getting the Contributions Based Employment Support Allowance. When I was no longer employed by my previous firm, I was transferred over to Income Based.

You get about a month to complete and return this questionnaire and I need every minute of it. Mine arrives with the added bonus of being delivered in the early part of December with a return deadline usually in the first week of January.  Therefore, I have to take into account that I’ll lose a few days whilst I’m with the family over Christmas and I have to take into account the Bank Holidays in terms of Royal Mail.  As a result, I would say that I only get an absolute maximum turnaround time of three weeks.  That may sound a lot to some of you  but, trust me, when you’re trying to fill out these forms when you are genuinely ill, three weeks is not enough to be sure that you’ve fully answered all of the questions.

The questionnaire itself is 21 pages and is split into two sections: physical disabilities and mental health disabilities. Yup, I have to fill in both sections. It goes into specific detail of how you get around physically, what you can do physically and how you cope mentally, along with details of any doctors, specialists, treatments, medication or therapies you are either in receipt of or in consultation with. You get one extra sheet of paper at the back of the booklet for “Additional Information”. This is if you need more space than allocated within the booklet. Yes, again. I end up submitting the 21 page booklet and 12 pages of typed A4 size paper detailing the conditions.

All of this seems to take forever and a day. Where my concentration can be so limited, it’s very frustrating. I want to get the form completed and returned in a timely fashion but I can only manage very small chunks of the questionnaire at a time. I tried to set myself a target of at least one page per day with the best of intentions of achieving that goal. I didn’t think that was too unrealistic a target. It worked; sort of. I had days where I didn’t touch the questionnaire or the associated word document that I was sending. However, there then came a manic episode where I got the whole section on physical disabilities completed in two days. The form for this year had to include all the latest fainting and near fainting episodes and how they increased in frequency and severity during 2019 and the subsequent tests that have been carried out to date.  I was completely exhausted afterwards and in a lot of pain, but part 1 was done. I could breathe a sigh of relief.

I didn’t touch the questionnaire again for another couple of days because I knew it was time to tackle part 2. Part 2 is the mental health side and I always find this the most difficult to explain. When completing these forms, and even more so in the face to face assessment (which I will detail in a future post), I feel that I have to justify and/or quantify my mental illness. They’ve got the paperwork alongside the questionnaire that proves I’m not well; it proves what medication I’m on and it proves that I’m not fit to work. For me to then have to justify it on top of medical professionals proving it, scares, dumbfounds and exhausts me.

By this point, I start hoping for another manic episode so that I can attempt to blitz Part 2, especially given that I now have to include the impact on my mental health of losing Grandma last year. I got one and I got Part 2 completed over the course of three days. I now needed to take a step back from the whole questionnaire and then review it for a day before sending it off. The day I started to review it was a very bad day and, in the end, it took me two days to review it.  Now, I’m into the New Year and it has to be back by 8 January.  I don’t trust the pre-paid envelope to get it back in time so I pay the extra to have it delivered Recorded Delivery, next day, first class so that I can track it and if there are any queries over whether I got it back on time, I can provide the proof that I did.

Now, I have to wait for the dreaded letter to hit the doormat that will request a face to face assessment.  Some people don’t have to go through this but I have always had to have a face to face assessment and I absolutely hate them.  They are stressful, frustrating and upsetting.  It will come soon and, trust me, I will update you accordingly.

 

In what has very quickly become a normal part of my life, the dreaded letter arrived with details of the third attempt at a colonoscopy. Sunday 15 December at 8am at the QE in Woolwich. I had been given the MoviPrep ready when I left the hospital last time so at least I didn’t have to worry about that.

I received the letter just over a week before the date of the procedure which was useful because I had to spend a week on a low fibre diet of just white bread, white pasta, boiled chicken, eggs, cheese and butter. No fruit and veg. Now what say what now? No fruit and veg for a week? I could have ice cream though and Rich Tea biscuits! Go figure. I decided not to try to understand those two particular aspects and just accept what I could and couldn’t eat.

Initially, you’d think that would be a doddle, just eating the low fibre for a week. Erm, that would be a no and certainly not at this time of the year. It coincided with a week where I was due to actually have to leave the house and have a Christmas lunch with two very good chums. Aside from the hospital appointments, I have barely left the house in weeks and this Christmas lunch had been arranged before the attempts at a colonoscopy began. I was adamant that I was going to make it out of the house for this lunch.

As the Christmas lunch was booked in for the Wednesday of the week in the run up to the colonoscopy, I decided that I would have the low fibre diet for the entirety of the week but, that particular day, I was having the Christmas lunch. I was going for the works and damned be to my stomach and bowel! It was the day before I started having to take the Senokot as the extended preparation and I figured that if my body couldn’t get a Christmas dinner out of my system in four days, then I was in far more trouble than I’d ever thought I was before! I think it’s safe to say that I made the most of that Christmas lunch and the time I spent with two very good chums.

I followed the low fibre diet and the extended preparation, taking the Senokot (without success) and it came to the day before the colonoscopy and I had to start on the MoviPrep again.

As I knew I was going to be fully sedated this time and that the appointment was at 8am on the Sunday morning, Mum came down to stay with me on the Saturday night and, potentially, the Sunday night as well as I had to have someone with me after the sedation. Mum travelled down late Saturday afternoon/Saturday evening after she had made sure that Dad was okay to be left.

According to the paperwork, I could eat a light lunch but I decided not to have anything after breakfast to give myself (and the MoviPrep) a real fighting chance of being fully prepared for this one. It just had to be third time lucky! So, after breakfast at about 9.15am, there was no more food and only clear drinks, which meant black coffee, water, orange juice (and don’t forget I couldn’t have bits) or clear soup. Now, those of you who know me well know that clear soup is just not an option in my house. Well, quite frankly, any soup is just not an option. I hate the smell of it, I hate the look of it, the texture. Just not happening. Therefore, that left me with plain fluids. Whilst I was still full from breakfast and not looking to snack, I made a casserole ready for Mum and I to have when we got back from the hospital on Sunday. It was still really hard not to pick at the carrots I was chopping or the mushrooms I was washing though. It was even harder when the absolutely delicious smell from the oven as the casserole was cooking emanated throughout the whole house! Maybe that wasn’t my smartest decision but at least it meant I didn’t have to prepare anything when we got back from the hospital as the paperwork had said I was under instructions not to do any driving, cooking, signing legal documents or looking after children after the sedation.

I spent the entire day clock watching to when I had to start the MoviPrep again. The paperwork this time said that I had to have a clear two hour break between the two preparations so I decided to start at 4.30pm.

I have to say that on each of the three occasions that I’ve had to take the MoviPrep, my experience with it (and with the subsequent colonoscopy) has been different. I got the first litre of MoviPrep down me with the assistance of two litres of orange juice in an hour. It was tough going but it was done. I knew then that I didn’t have to start the second litre until 7.30pm. I wasn’t expecting anything to happen but, just before I started making the second litre, my stomach started gurgling. This was new. This was different. Would I finally make some progress? I was making my way through the second litre when Mum arrived and I literally had time to give her a hug and make her a cup of tea before I decamped to the bathroom. I was genuinely quite excited! I finished the second litre of MoviPrep and in between trying to catch up with Mum and watch the final of Strictly Come Dancing, I was running to the bathroom. It wasn’t the “loads” that the paperwork had suggested but it was certainly considerably more than I had experienced before. This was certainly encouraging. I managed about 4 hours of sleep that night and was back on the toilet at 5am on the Sunday morning. This was even more encouraging.

Mum and I left for the hospital at 7.15am and we were second in the queue when we arrived at Reception for the Day Care Unit. I was the most hopeful that I had ever been about the success of the preparation but, given the two other failed attempts, I wasn’t exactly swinging of the chandeliers that this was going to be a roaring success!

I went for the pre-procedure preparation. Donning the still not very fetching hospital gown and dignity pants, I met with the chap who would be doing the procedure that morning. His name was Alec and he was quite a chatty and engaging chap. The canular was fitted so that I could have the sedation and after a bit of faffing with that trying to find a vein, I was walked into the procedure room and assumed the position!

I was given Fentanyl, which is stronger than morphine, and Midazolam as a relaxant and we began again. Another 30 minutes on the table. Two nurses pushing down on my stomach trying to open up the right side of the colon. Apparently, it loops around a bit like a roller coaster(!) and doesn’t like being opened up by blowing air into it. Well, after 30 minutes, we had achieved success and, guess what, there’s nothing sinister there at all. I’ll be honest there was some swearing throughout as, even though I’d had the sedative, it was bloody uncomfortable and I could feel it especially when you’ve got two people pushing down on your stomach.

I was wheeled back into recovery. I didn’t feel as if I’d had any sort of sedative at all. Other ladies around me in recovery were absolutely out for the count and I was sitting up, having a cup of coffee and a sandwich chatting with the nurses and chatting with the nurses who remembered me from the second attempt! I was only in recovery for about 30 minutes which was the time it took for the report to be typed up and for me to be given a copy and be escorted back to my Mum in the waiting area.

The good news is that I don’t have to have another attempt at this and if I don’t see another box of MoviPrep in my lifetime, it will be too soon!! Mum and I left the hospital and I drove home. I know I wasn’t supposed to but I did not feel that I had any sort of sedative at all. I just wanted to get home. Mum and I had lunch and then Mum went off home to check on Dad. I was pottering about in the afternoon and then at about 5pm on Sunday, it hit me like a tonne of lead. I was literally just sitting on the sofa watching the darts and the next thing I remember it was 3:30am Monday morning! The lights were still on, the heating was still on and the cat was just staring at me wondering if I would ever wake up to feed her!

From 3.30am on that Monday morning, everything was pretty much back to normal. My stomach still gurgled a bit throughout the day but life carried on. I don’t know what happens next. I don’t know if I will have to go back and see the consultant or if he will just arrange the next stage of testing on my liver and pancreas. All I do know is that, right now, there’s no point chasing anything this side of Christmas and I’ll start again in the New Year. It’s another organ ticked off the list and I have to keep telling myself that it’s one step closer to the solution! For now, at least I know I can eat chocolate over Christmas without fear of having to take that damned MoviPrep again.

So I did promise you an update on The Ugly and I think that it’s safe to say that over the past few weeks, it has dominated my life.

I received the dreaded letter telling me the date and time of the second attempt at the colonoscopy.  It was booked for Sunday 1 December and this time it was an afternoon appointment at my local hospital (the QE in Woolwich), rather than having to travel to Lewisham again.

I also received a copy of a letter that the consultant had sent to my GP. It confirmed that my endoscopy and my CT scan were all clear. This now rules out my gall bladder as the issue. It took a while to sink in but then I started to freak out a little bit. We had wanted a gall bladder issue because the alternatives were things I really didn’t want to even contemplate, let alone have to potentially confront.  I had to phone Mum and Jill. I’m scared. With my gall bladder ruled out, things are looking a bit more sinister. More than that, with a clear CT and endoscopy, the colonoscopy HAS to work. No questions, no faffing. It HAS to work to try to find out what’s going on with me.

The letter to my GP did say that if there was nothing as a result of the colonoscopy, then further investigations would be made of my liver. However, and here’s something really quite freaky, when I had blood tests done when I met with the consultant, my liver function test was normal! What the actual fuck? I have blood tests done after my trip to A&E and my liver levels are through the roof and yet, two weeks later, they’re normal. Which one is the anomaly? What the hell is my body playing at? Not only am I now scared, I’m frigging confused. I read the letter to Jill and, obviously, we analysed it to within an inch of its life. I’m still not googling and we are just speculating but, between my Mum and Jill, they talked me down from my freak out and normal service was resumed of just cracking on and getting it done. During my mini freak out, I do manage to eat four crumpets with butter on though! This was at 10.30am. Not a good start.

Once normal service was resumed, I realised that I had the letter with the appointment time but I had no MoviPrep and no instructions for the dreaded extended preparation. Where do I get that from then?  I called the Endoscopy Unit to find out how I get the MoviPrep, with visions of having to get a prescription from my GP and all sorts of faffing. However, it turned out to be relatively simple. Just go up to the Day Care Unit at the hospital and pick a packet up so I did. Given that it was the extended preparation and from what I’d been told, I was expecting to be given two packets of the MoviPrep. Nope. The extended preparation consisted of taking two Senokot tablets three days and two days before the procedure. The MoviPrep system was actually the same as before with no additions. Two Senokot tablets. Seriously? What good was that going to do to my insides? I abused laxatives during my twenties so I didn’t hold out much hope that Senokot tablets were going to touch the sides. I was right by the way.

I had already made the decision that I was taking the MoviPrep this time with the assistance of a lot of pure orange juice. I already knew that I could have orange juice provided it didn’t have “bits” in. So, the day before, I popped to the shops for four litres of orange juice and got myself ready for another night of hell. It turns out that if you dilute the MoviPrep with enough orange juice, it’s just about bearable. However, you do still have to get the same amount of MoviPrep down you but I drank the whole lot with the assistance of just over three litres of orange juice. Now, quite frankly, that amount of orange juice, MoviPrep, black coffee and water should have had me living in the bathroom for a minimum of 24 hours. But, no.

So, as Jill and I made our way to the hospital on Sunday, I wasn’t holding out much hope of success at all.

Jill and I got to the hospital in plenty of time and I was first in the queue. I went through the pre-procedure stuff with the nurse. My blood pressure was super low but then I hadn’t eaten for 24 hours. I was asked again if I wanted a sedative. I declined given that I probably should have had it for the endoscopy last time and given that I didn’t hold out much hope for a successful procedure. I got changed into the oh so fetching hospital gowns and dignity pants and was made my way in to the procedure room. That camera was stuck where the sun doesn’t shine for 40 minutes! 40 uncomfortable minutes.

Now don’t think for one minute that just because that camera was roaming around my insides for 40 minutes the procedure was successful. It was only half successful. There was a very lovely team of ladies carrying out the procedure. However, when they had to start pushing down on my stomach between them to try to open up the right side of my bowel, they very quickly came off my Christmas card list. VERY quickly. They tried giving me gas and air. They had me lying on my right side, on my back, on my left side but when they asked me to try to lie on my stomach, that was it – game over. I can very rarely lie on my front because of the pain that it induces in my back. My normal back pain, not this new back pain that I’m still getting used to but getting a handle on it. They couldn’t get into the right side of the colon and there was still stuff stuck in there, even with the extended preparation.

After 40 minutes of living in that little corner of hell, we all gave up. I have to have it done again with the extended preparation but this time, I have to be fully sedated so that they can pull and push me around as much as they like to try to get in there properly. So, I was wheeled into recovery and, for want of a better phrase, I felt incredibly deflated. I was nearly in tears. I just want some answers. I want answers even more now that we know the CT scan was clear and my gall bladder is out of the equation. The recovery team at the QE were lovely. They gave me a sandwich and a cup of coffee. They came over to have a chat to check that I was okay because they saw that I was looking somewhat despondent to say the least. We went through the release paperwork, they gave me another pack of MoviPrep and I got dressed. I returned to Jill in the waiting room who, understandably, had genuinely thought we’d achieved because I had been in there so long. Her face visibly fell when I showed her the packet of MoviPrep. I explained to her what had happened, we grabbed a coffee and made our way back to the car to go home. I had no more words.

I phoned Mum. Mum sounded excited on the phone because it had taken so long for me to phone her but even she sounded somewhat pissed off by the time I’d finished explaining to her what had happened and what’s next.

Two days after the failed second attempt and I was still in some discomfort. The best way to describe it was it felt as if I hadn’t trained for months and suddenly I was told to do 1,000 sit ups for boot camp!  On the Tuesday night after this go around, I got very teary about the whole thing.  I’m so fed up with the pain, with the not knowing and with the colonoscopy process.  So, it was waiting time again for the next letter with the date and time.  I really wanted it done before Christmas, even if it just ticked another option off the list in regards to what was wrong, at least I’d be one step closer to the solution!  Updates will follow of course.