A few weeks ago, my brain decided that it wanted to remember my Dad’s voice.  I tried my absolute hardest to imagine him sitting in his chair in the living room and us having a conversation.  I couldn’t hear my Dad’s voice.  I have videos of us when we were on holiday in Florida that I’m sure will have his voice on it, but I am just not ready to watch those videos yet.  I’m not ready to look back at old photographs either. 

For about three days, my brain seemed obsessed with trying to hear my Dad’s voice.  I could imagine Dad sitting in the chair and rolling his eyes at a comment that one of us may have made and that was as clear as day.  I just couldn’t get a voice.  I tried everything I possibly could not to think about it but it just seemed that at every available moment my brain was telling me I had to remember Dad’s voice. 

I thought about asking my sister but virtually immediately dismissed that idea.  She was back at work after isolation and the kids were driving her up the wall before they finished for the holidays.  She had too much on her plate to ask her what I thought she might think, was a really stupid question. 

You have to remember that being BPD, if you get an idea in your head, it can become obsessive very quickly and I really didn’t know how much was grief and how much was BPD.  I certainly wasn’t going to tell Mum that I couldn’t remember his voice.  What if I was doing something wrong?  What if people can specifically remember their loved ones voices and actions and images?  What if the BPD itself was doing this to me?  No idea.  But, In the end, I just couldn’t take it anymore as the need/desire to hear Dad’s voice had literally taken over my life.  That may seem extreme to “norms” but that is genuinely how it feels when the BPD really kicks in.  Things become an obsession. 

So, I met up with Jill.  I can’t say that I was keen to ask Jill because I didn’t want to trigger her.  She seemed to be holding up reasonably okay for the previous few days and the last thing I wanted to do was upset her.  But, I just could not deal with my brain forcing me to try to remember Dad’s voice any longer.  And my brain figured that given we were dealing with a similar situation within a similar timescale, maybe, just maybe, Jill was experiencing similar thought processes.

Jill and I met, we talked and I was still incredibly nervous of asking her.  Eventually, I told her that I can’t hear Dad’s voice and I asked her if she was finding the same thing.  She said that she could hear them in certain situations, e.g. she could hear her Mum on the answer machine and her Dad saying something specific but it was not something that her brain had challenged her over or, indeed, she had thought about in any great detail.  This opened the floodgates for me.  I just cried.  Not a few tears.  But, I sobbed.  I couldn’t apologise to Jill enough for offloading onto her.  She cried too.  We do pretty much set each other off now, even if we have been doing okay for a few days. 

I can recognise that as my pattern though.  I thought I had been plodding along reasonably okay, just dealing with the BPD and Bipolar, not going outside the front door and trying to stay distracted during the day.  However, I think that maybe my brain was trying to tell me that I needed to vent for a bit and get out some tears and trying to get me to remember my Dad’s voice would, ultimately, lead to a bit of a meltdown.  Or, is that the BPD over analysing the situation?  Well, I’m going with the former on that one because after I had sobbed with Jill, although I was incredibly tired (and I slept for about 20 hours afterwards), I no longer had the nagging thought in my head trying to hear Dad’s voice. 

Anyway, last weekend, I had the most fantastic dream that had both Mum and Dad in it.  It was so vivid and clear.  When I told Mum about it, she told me that I had to write it down. 

In the dream, I had gone to visit Mum and Dad.  They were living somewhere not known to me.  I remember that Grimsby was mentioned in the dream.  We have no friends or relatives in Grimsby so I have no idea why this would be important.  Dad was test driving a car for the weekend.  Not your bog standard, new car.  Oh no, this was a classic car.  I would say around about the 1930’s.  I can’t be precise about the make or model but just imagine something in the style of a Morgan but with back seats, the roof down and the colour was grenadier red.  (Grenadier red was the colour of my Dad’s beloved Jaguar).  Dad was test driving this classic car for the weekend, but said that I could drive it.  Me and Dad in the front and Mum in the back, with the top down.  I reversed out of a gravel driveway (we had a gravel driveway at my childhood home) but the house we were leaving is one my parents lived in but I never did (188).  We were pulling out onto somewhere that resembled the top of Blackheath in South-East London.  My parents have never lived there, but I have lived near there.  Anybody that knows Blackheath village, knows that it is a one way system of narrow roads around the village that go up and down.  We were driving down to junction and I said to Dad that he had to hit the brakes too because I wouldn’t be able to stop the car on my own.  This car apparently had brakes on both sides at the front and it needed two of you to apply them. 

We continued our drive around and I was getting used to the double clutch gear change and we appeared to pull up in a park.  It wasn’t anywhere that I recognised.  People were coming up to us and asking about the car.  Mum and Dad were saying how lovely it was and I was telling people what a nightmare the brakes were!  Dad mentioned about my sister.  He said that he thought she was moving house.  I asked him why and he said that because they hadn’t heard from her for ages and she must up to something!

We carried on with the drive and Dad directed me back to the showroom to return the car after the test drive.  I successfully pulled into the showroom where other people were also returning their test driven cars.  All of the cars were of a similar style but different colours. 

The last thing I remember about the dream before waking up is Dad saying to Mum, “It’s still at a reasonable price Cheryl” and Mum just tilting her head and saying, “well, you’ve got the money if you want to get it”. I heard my Dad’s voice as clear as day in that dream.  It was genuinely as if he was back with us. It was that vivid. I’d spent days trying to get Dad’s voice into my head without success and then I heard it in a dream.  I didn’t wake up from the dream sad or crying.  It’s the first dream I can remember that I’ve had with Dad in it since he died.  I woke up just with a sense of, “well that was a batshit crazy dream” but I heard Dad and it left me with a smile.  Maybe that’s why my brain decided that I should remember it so clearly.  Maybe my brain realised that once I had offloaded, I needed a little “reward” and that reward was to hear Dad’s voice.

Everybody’s grieving process is different.  It’s a very solitary experience in itself because we are all different, but grieving during a pandemic, juggling restrictions and mental health issues brings on a whole set of new challenges and experiences.

I genuinely believe that I started grieving in a very small way for my Dad back at the end of last year, when we got the news that his cancer was terminal.  I had seen him in June of last year and then again in October, when we got the news, and the deterioration in him in those three months was quite drastic.  There was talk that he could last anything up to another two years but I think I knew that he wouldn’t make it that long.  My first focus was hoping he would get through to Christmas.  There was that little bit of light that the radiotherapy could shrink the tumours but we never found out if it worked or not. 

From the day Dad got home from the hospital (the week before Christmas) to the day he died, I suppose the grieving intensified.  Mum was trying to stay positive that Dad could carry on for quite some time yet.  I was already convinced that he wouldn’t make it to Easter.  He was certainly never going to see another one of my birthdays in July.  My sister was of a similar view.  She turned 50 during December 2020 and it was a tough day for her because Dad was still in hospital at the time and she couldn’t see Mum and Dad and she knew that Dad wouldn’t see another of her birthdays either.  But was it grieving, or was it just pure sadness at the situation?

After seeing Dad when he came out of hospital and over Christmas, I knew it wouldn’t be long.  We weren’t talking as we used to and I knew that I was losing my Dad, six weeks before he actually died.  Every drive back home after a visit was full of tears and on more than one occasion, I had to pull over at a service station to give myself a minute to regroup and get back on the road.  The man that I knew as my Dad was gone forever.  He was the most intelligent and sarcastic and funny man I have ever had the privilege to know and he just wasn’t there anymore.  There were flashes of his sense of humour – the odd roll of the eyes, the odd comment – but there was no consistency to it anymore.  It became increasingly difficult to make each visit full of happy memories and laughter.  I tried printing out super large photos of us lot and the grandchildren so that he could see them.  That didn’t seem to work.  I tried just talking to him about what the grandchildren were doing (after speaking to my sister) and whilst there were flashes of a smile, it still wasn’t enough. 

The deterioration in Dad was so rapid, my brain did struggle to keep up.  It was so noticeable between visits.  Even in only a few short days, Dad was deteriorating.  Mum was living it 24/7 and I don’t really know how noticeable she found it but given that I was not with them every day, it was so evident to me after each visit.  One of the last visits I had with Dad and one of the last times I spoke with him, was me shouting at him.  He didn’t know where he was, he was in great distress and he was calling Mum a liar.  I walked into his bedroom and just said “Dad, it’s Julie, Mum is not a liar, she is just trying to do her best”.  One of the last things I said to my Dad was out of anger and shouting.  Anger that we were losing him, anger that this wasn’t my Dad; this was some strange person in my Dad’s body who was treating my Mum in such an appalling fashion; anger that my sister wasn’t here to see it because of the COVID-19 restrictions; anger at the pandemic itself because this could have been caught earlier if Dad had been seen by medical professionals sooner.  I have never shouted at Dad in my life – even in those hormonal teenage years – and it was one of the last things I did to the man that I absolutely adored and cherished.  I now have to live with that. 

Then, after Jill’s Dad died and her Mum so soon afterwards, I felt I couldn’t really reach out to Jill.  My Dad, after all, was still alive (albeit in a very fragile state).  Jill and I talked every day on the phone, we cried on the phone.  We couldn’t really work out what was worse – to have both parents die so suddenly or to have to watch your absolute hero deteriorate in front of your eyes and the man that you have loved your entire life, completely disappear.  He just turned into a shell.  At least Jill’s parents were still her parents in their spirit when they died.  This man that I was seeing on the weekends was most certainly not my Dad.  So, I went down the route of telling Jill that I was holding up okay and that I was more worried about her, which I genuinely was and I didn’t want to let on how desperately sad I was (and still am).  I wanted to be her support.  Even though she kept saying that we would support each other, I felt her pain was so much bigger than mine, I didn’t deserve to be supported when she was going through so much (and still do). 

I didn’t have anyone that could just give me a hug and let me cry into their shoulders or arms.  Not even someone just to make me a cup of coffee and try to tell me all of the normal platitudes of “he’s in a better place” or “he’s not in pain anymore”.  I cried into my pillow at night (and still do) and didn’t (and still don’t) want to burden Jill with how sad I am because she had lost both of her parents within a week and I had only lost my Dad.  Only!  What a word.  Nobody’s pain and grief is comparable but you do have to think that losing both beloved parents within a week has got to be worse than watching one parent deteriorate. 

Dad’s funeral was in the middle of March and everyone kept telling me that I would get some closure from the funeral; that I would feel different afterwards.  Bollocks.  There was no closure.  If anything, it started to bring it home to me that Dad was actually gone.  I shall explain…

Although we are a very tight knit little unit of Mum, Dad, Sis and I, we are spread out across England so we don’t get to physically see each other very often.  We do, however, keep in very regular contact and when anything happens (good or bad), we drop everything and run (well, drive actually).  I started to think quite early on after Dad died that it would actually get harder for me as more time passed after I had seen him last. 

Taking 2020 out of the equation and the COVID-19 lockdown and restrictions, there were times when, as a family, we could go anything up to three months without seeing each other.  So, when Dad first died, even though I knew he was gone, there was still a huge part of me that didn’t think it was real because it was just a few days since I’d seen him.  Even at the funeral, it had only been five/six weeks since I’d seen him and that was nothing out of the ordinary.  We are now in May, it has been exactly three months since Dad died and well over a month since the funeral and it’s starting to get harder. I have never gone so long without seeing or speaking to my Dad.

I popped home to see Mum on Good Friday and Easter Saturday and that was one of the toughest visits home since Dad died.  I was back there again before the end of April for what would have been their wedding anniversary because I didn’t want Mum to be on her own for that first anniversary.  The original plan was to take her out for some lunch and do some shopping (subject to the shops/outside seating still being open).  Knowing that Easter weekend was getting tougher, I knew that their wedding anniversary was going to be even harder.  Well, that didn’t go to plan either.  Mum and I actually spent the day collating all of the paperwork to send to the accountant for Dad’s final Tax Return!  Well, that was one hell of a distraction from the day, I must say.  Add into it the fact that with restrictions being eased, the roads were busier and it took me three hours of driving each way. 

In terms of my coping strategies, I’ve resorted to type I’m afraid.  I’ve eaten everything in sight and have put on over two stone in weight since Dad was diagnosed as terminal and I’ve been regularly self-harming again.  I phoned the crisis line about 10 days after he died.  I’m afraid they were nothing short of useless (yet again).  Nothing can be done about my medication without a psychiatrist being involved (because of the levels involved) and the chances of getting to see one of them right now are, quite frankly, non-existent. 

What is really hitting home is that I am trying to work my way through this initial stage of grief on my own.  I am genuinely alone and do feel incredibly lonely.  COVID-19 and the restrictions have fed into my love of isolation.  That in itself is going to be an issue.  As restrictions are starting to be lifted in the UK, I actually don’t want to go out.  As more people are venturing out, I can actually get an online supermarket delivery now so I just want to hide away at home.  I don’t want to see people.  I don’t want to have to try to explain to my closest friends what has been going on.  This love of isolation is something that I have had to battle against since I came out of Nutlins.  It is too easy for me to retreat back into my shell and not go out.  So much hard work has been done to try to force myself out of the house and now COVID-19 came along and told me, flat out, that I just couldn’t leave the house!  Result! I haven’t actually crossed over the threshold of my front door in two weeks.

The day after Dad died, there was a cricket Test Match – I can’t remember whether it was England v Sri Lanka or England v India.  I couldn’t watch it.  It wasn’t just about Dad; it was Grandma and Grandad as well.  That was our thing.  I’m the only one left of those four people.  I don’t have anyone to pass on my love of cricket to.  I could and can still watch the football and always check for Luton Town’s scores (our family’s team).  Watching the Six Nations rugby wasn’t a problem because having played rugby, that really is my thing.  The cricket has become a real problem.  I can watch some of the shorter format games – the TwentyTwenty games and the One Dayers but Dad was a traditionalist and loved Test Matches and I just can’t watch them.  Dad went into his funeral to the Test Match Special music! 

Talking of music, I can listen to The Shadows quite happily without getting upset.  We grew up listening to, firstly, eight track cartridges of them, then vinyl and CDs.  They were definitely Dad’s favourite.  Listening to them does actually make me feel warm.  I don’t go out of my way to play their music but when they come on when my iPod is on shuffle, there is always a slight grin.  I’ve really gone in for the hard rocking tracks to keep me going.  I’ve dug out some oldies from Thunder, Whitesnake and FM and have been very grateful for new albums for Thunder and FM to keep me going and keep me distracted. 

I feel a great sense of expectation that I should be “moving on” now that the funeral is done and it has been three months.  Bullshit.  I’m only just starting to really grieve now.  Jill is still up and down with days of holding her own and days of crying her eyes out, I’m crying more and Martha seems to be holding things together pretty well.  Martha has her kids to focus on, Jill has her family around her and I’m in my little house all on my own, just with the cat.  Martha has her husband to help her.  Jill has Jack.  As I’ve said before when I was in the first stages of recovering from my op, it’s the little things – I don’t have anyone to make me a cup of coffee, to make me a sandwich, to put the washing in the washing machine for me, even just to make the bed for me.  Nothing.  Stuff that seems so normal, so minimal has become such a challenge.  I don’t have anyone to tell that I tried to read Bumble’s book that I bought after my surgery, but couldn’t do it – it’s cricket. 

So, I’m doing what I do.  I’m forcing it down and out of the way to be dealt with another day as I try to help Mum and Sis through all of this.  I know it’s not healthy and I know it will come back and bite me on the backside later on but, right now, it’s all I can do. 

Are we too late in the year to still be saying Happy New Year?  I kind of think that still being held to ransom by a global pandemic, all bets are off at the moment so, sod it: Happy New Year to you all. 

It has been quite a while since my last post and quite a ride that I’ve been on for the last few months.  I am now in a position to tell you what has been happening and what the result has been.

During October 2020, we received the news that my Dad had Stage 4 terminal bowel cancer.  How do you deal with that when you’re living in a Tier 4 city during a global pandemic?  Well, I went into a “support bubble” with Mum and Dad which meant that I could travel to see them and support them.

Dad went through radiotherapy to try to shrink the tumours.  However, we never got to find out if it worked.  I went to visit him about a week after the radiotherapy had finished.  Although he was in some discomfort as the radiotherapy aggravates the tumours before it starts to take its wanted effect, he was still in quite good spirits.  We had a good conversation.  He was lucid, cognitive and I had a good visit. 

However, not 12 hours later, Dad was in hospital after having a fall and was in hospital for two weeks after that.  Mum obviously couldn’t even visit him and when she was able to speak to Dad, his calls were so distressing to Mum as he was confused as to where he was, he wanted to come home and no one could do anything about it.

Dad came home on 19 December 2020 and Mum was absolutely shocked to see the deterioration in her husband after just two weeks in hospital.  He didn’t want to go back to his chair in the sitting room.  He wanted to go straight to the hospital bed that had been set up for him in their spare room.  This was not a good sign.  This was not Dad.  Dad spent the following six weeks in that bed.

I went straight up to see them on Monday 21 December.  Carers had been arranged to come in several times every day to clean Dad and to turn him and to address the bed sores that were inevitably to follow.  On that Monday, Dad was still lucid and cognitive and we had a good conversation.  What followed over the next few weeks was nothing short of the disappearance of my Dad completely.

I was back there for Christmas and Boxing Day.  Again, because of the Tier 4 COVID-19 restrictions, we couldn’t have our traditional family get together on Boxing Day, so we had to do a Zoom call with my sister and her family so that Dad could see the grandchildren at some point at Christmas.  Dad was already deteriorating.  The Zoom call was difficult.  He was in a lot of pain and it took us a couple of goes at it before Dad could see and talk to the little ones (albeit in already stunted sentences).  Boxing Day was maybe the last day that I had a reasonable day of coherent, lucid conversations with my Dad. 

I agreed a plan with Mum that I would visit at the weekends, not just to see Dad but to give her a break.  Dad was officially in palliative care at this point, preparations were already being made for end of life care and the paperwork for a “DNR” (Do Not Resuscitate Order) had been delivered to Mum on Christmas Eve (lovely). 

Each visit (after a COVID-19 lateral flow test to make sure I wasn’t taking that with me on top of everything else) was met with an even further deterioration in my Dad’s health.  I went from having a good chat with him about the football, the cricket and the grandchildren to him focusing on one topic and making sure that I carried out his instructions, to him not knowing who I was.  By the time the end of January rolled around, he knew that he had a daughter but he didn’t know how old I was or where I lived.  He didn’t even recognise me.  On Sunday 31 January, for the first time, I cried in front of Mum.  I didn’t think Dad could deteriorate any further until I saw him that weekend.  Mum popped out to the shops and I just sat with Dad, held his hand and told him it was okay if he wanted to go; that my sister and I would look after Mum.  He didn’t talk at that point.  There had been talk of vascular dementia, the cancer spreading to his brain because we already knew it was in his lymph nodes.  On Friday 29 January, an assessment had ben carried out to officially move him from palliative care to end of life care which would be formalised on Monday 1 February.  That was the last time I saw him. 

On Wednesday 3 February, Dad died.  I knew it was coming.  When I had returned home from that final visit, I had told my sister and Jill that there was nowhere else for Dad to go apart from to pass away.  When I saw Mum’s phone number come up on the house phone that morning, I just knew.  Mum didn’t want either my sister or I to drive to their house that day because she didn’t want us risking our lives to drive that distance in such an emotional state.  We said that we would go to see her the following day.  We were in full lockdown by this point, but this was our Dad and this was our Mum.  I spoke to Mum’s friend and asked her to be with Mum that day whilst everything was being done to sort Dad out and to take him away from the house.  I spent the day between outbursts of tears and trying to tell myself that Dad was in a better place, he was at peace and he wasn’t in pain anymore and that my Dad as I knew him had left a long time before he actually died.

How do you cope with such grief during a lockdown?  I wouldn’t wish it on anyone.  However, this was not the only tragedy suffered in my little corner of the universe during this time. 

A couple of days after Boxing Day, Jill’s Dad passed away from COVID-19.  Not one week later, her Mum passed away too, also from COVID-19.  Then, a dear chum of mine (I shall call her Martha) lost her Mum too.  Oh and that’s not all.  My fabulous Great Auntie Ethel fell asleep at the grand old age of 102 and just didn’t wake up.  So, in the space of 36 days (yes, just 36 short days from the day Jill’s Dad died to the day my Dad died), my little corner of the universe imploded.  Literally, imploded. 

Five people in 36 days.  People I loved, people I had been on holiday with, people I genuinely cared about and wanted in my life.  Now I know that there are people out there who have experienced dreadful loss because of COVID-19 and I do not diminish in any way what they have had to go through but, as much as you try to tell yourself that there are people in the world worse off than you, to try to deal with all of this on your own in lockdown is almost impossible.  Your sole concern is how you are going to get through the next minute, hour and each day.  I couldn’t be with Martha because of the distance.  I couldn’t be with Jill.  There was so much concern about if any other members of her family had COVID-19 (which they did), so I couldn’t risk seeing her, catching it and taking it to Mum and Dad’s.  I was having lateral flow tests before each visit home and was basically self-isolating between each visit to Mum and Dad’s.  Zoom and FaceTime became a life saver.  Virtual hugs were everywhere during this time.  We couldn’t touch and hug each other but we could all cry in front of each other, but I still felt (and feel) so dreadfully alone. 

In the space of a week in the middle of February (not even two weeks after Dad had passed), there were three funerals – Martha’s Mum, Jill’s parents and Auntie Ethel.  I gave a reading at Auntie Ethel’s funeral and then at Dad’s funeral, I delivered the Tribute from my sister and I.  That was a really tough day.  We still couldn’t hug.  I was still alone in my grief and I had to try to do Dad proud with the Tribute.  I think I did.  My sister and I adopted a lighter approach to preparing the Tribute.  The funny stories, the sarcasm, the mickey taking and some of the things that we had learned from Dad.  Jill and Jack watched the live stream of Dad’s funeral and said that both Mum and I did a really fantastic job and they didn’t know how we had managed to hold it together.  I did almost crack.  It was when I first mentioned my sister’s kids, I started to fill up but I took a deep breath and carried on. 

A week after Auntie Ethel’s funeral, I had my first COVID-19 vaccination.  But, I’m still having lateral flow tests before every trip to Mum’s and I’m still isolating in between visits.  Now that Dad’s funeral is done, it’s all about sorting out the paperwork.  Mum is the Executor of Auntie Ethel’s Estate and Dad’s so she has both to deal with!  The woman is an absolute legend.  I’m trying to take as much off her plate as I can – talking to various providers that Dad used such as Amazon, eBay, really the peripheral stuff so that Mum can concentrate on the banks.  We are slowly but surely, shutting Dad’s life down.  We still don’t know yet if a Grant of Probate is going to be needed for Dad’s Estate – it all depends on the response of a couple of the banks.  That could take months yet to get that finalised.  However, Mum has her “To-Do” lists of people she needs to contact every day and I am trying to help her with that as much as possible. 

I’m trying to be there for Jill as much as possible too and Martha.  Jill and her sisters have had to sort out their parents’ house all in one go and their Estate all in one go.  I so desperately want to hug both Jill and Martha, not just to let them know that I’m here for them but, quite frankly, I need a damn good hug too from someone who can genuinely say right now, “I know how you feel”.  Losing a parent is one thing, but trying to deal with it all during a global pandemic is something else.  So, how do you deal with the grief?  More on that in my next post.

I am three months post-op now and whilst there are still some issues including “significant internal bruising” (following a semi-urgent call to my GP due to the pain levels) and still trying to work out how my body is now processing food, I’m doing relatively okay on that front.

However, there is something going on at the moment.  I won’t go into detail at the moment out of respect for the people concerned.  All I will say is that it was grim and devastating news that confronted me four weeks ago.  My initial reaction was to break down in to floods of tears and I spent two days just randomly bursting into tears and flitting between sad and angry.  But, since then, I seem to be holding my own.  I tear up occasionally but there are no longer any floods of tears or wanting to smash the house up out of anger and frustration.  I appear to have adopted the British, stoic approach of “suck it up, buttercup” and just get on with it.

This has caused concern all around, particularly with Jill.  Jill is aware of the entire situation and we had a conversation on Sunday night where she very clearly and concisely expressed that she was worried because I appeared to be handling things too well.  I agreed.  I seem to be relatively emotionally upright at this precise moment and, quite frankly, I shouldn’t be.  I don’t understand why I am so upright.  Yes, I am taking my medication every day but that in itself wouldn’t do the job completely.  I am worried that I appear to be “doing so well” right now. 

So, am I really handling the situation?  I’ll be honest, I just don’t know.  Yes, I have lost any and all motivation.  Yes, I am flitting between not eating for two days and eating everything in sight.  These are all things that I am aware of and know why they are happening.  But, have I just accepted that this is how it is going to be for a while?  Has all the therapy that I’ve had and all of the mindfulness training I’ve been on actually having an effect now whilst this is all happening?  Again, I genuinely don’t know and don’t understand it.  I have tried to look deep into myself and really ask myself the tough question of “have I really accepted the situation”?  I can honestly say that I think that I have.  Yes, it sucks.  Yes, it is downright fucking horrible but there is absolutely nothing I can say or do that will change the situation or make it better.  It really is a case of “suck it up, buttercup”. 

I have to think of the other people involved in the situation.  Whilst they may not be as emotionally upright as I am right now, I need to provide a level of support to them until they are more emotionally upright.  Maybe at that point, I will find myself on the rollercoaster dip that requires additional support.  Maybe my little brain is telling me that I need to get them “okay” before I can fall apart.  Maybe because there have been lengthy conversations with the key people involved, that has helped my little brain process things and reach a level of acceptance earlier than anyone expected/thought may happen.  Who knows?

My brain is operating a little differently at the moment in that there are some physical symptoms of depression and anxiety coming through which I haven’t previously suffered from as much.  I have a headache most days.  Every now and again, I get a bit dizzy.  I suffer from waves of nausea.  There are some serious joint aches and pains going on and whilst a lot of that I’ll chalk up to getting older and the arthritis in my back, neck and shoulder, the pain levels have racked up several notches.  So, maybe instead of my brain emotionally challenging me, it has decided to process my emotional pain through physical pain as that is much easier for me to contend with. 

That, to be honest, is the only plausible explanation that I can come up with.  Obviously during the second lockdown, the subsequent tier structures and with the current pressures on the NHS, I don’t want to contact my GP or any of the Mental Health Services because I just feel it’s going to be a waste of time.  I know what is happening, I know what symptoms I’m presenting with and I’ve got a pretty good handle on how the various symptoms are presenting.  What is a medical professional going to tell me?  Everybody processes emotions differently.  How you feel is totally “normal”.  That would be an appointment wasted when somebody not used to trying to understand mental health could be having a much needed conversation with a professional. 

All I really know is that is going to be one hell of a rollercoaster ride and I’ve just got to go with it right now, in whatever form the symptoms present themselves.  Don’t get me wrong, it’s a rollercoaster I don’t want to ride but, for the moment, I can’t get off. 

Well, I’m now just over a week post-op and it has been the most annoying, frustrating and wincingly painful week. 

The first day after surgery, I got up at 6am.  I immediately had a flashback to being four years old.  At four years old, I had an umbilical hernia operation and really struggled to stand upright again.  One of the sites that was used for this surgery was the pre-existing scar from that umbilical hernia surgery.  So when I gingerly started to stand up out of bed that first morning, I was immediately transported back to Victoria Ward at Bedford South Wing Hospital and nurses trying to get me to stand up straight.  I wasn’t expecting that at all.  It freaked me out a bit and then I just had to laugh about it (painfully) as I very carefully made my way down the stairs to put the kettle on. 

That first day was spent texting a lot with Mum to let her know that I was okay, replying to text messages from chums that had come in the night before and filling them in on what had happened the day before.  I was still under the influence of the general anaesthetic so really didn’t feel like eating anything but knew I had to eat a little something.  The level of pain meds that had been given to me upon discharge meant that they have to be taken with or after food.  I had absolutely no idea how much of an issue that was going to be this week.  I started off with some watermelon, mango and a yoghurt to take the tablets.  I have a history of really struggling to swallow tablets and have developed a real yoghurt habit since I’ve been on the Venlafaxine let me tell you! 

There didn’t seem to be any impact on my stomach from my light breakfast so, for lunch, I went one step further.  Well, half a step.  I made a sandwich for lunch but with sandwich thins and not normal sliced bread, so it was a very small sandwich so I could take the next round of painkillers.  I felt totally full for the rest of the day so I didn’t want to eat anything so I missed the next round of painkillers.  This has turned out to be the theme for my recovery so far. 

The hospital phoned in the afternoon to see how I was feeling and to confirm what the next stages would be in terms of contact with them post-op.  They also made the fatal mistake of making me laugh because that hurts like hell when I laugh and when I cough, which I was doing a lot of as a result of having the tubes down my throat.  The nurse who called me asked if I lived with anybody, to which I obviously replied no.  The reason she asked was that as so much air was pumped into my stomach to make room to fish my gallbladder out, there would subsequently be quite a lot of farting this week!!!  Apparently, some of the female patients can be a little “precious” shall we say about passing that amount of wind post-op.  However, I gleefully told her that my cat has no shame about farting right in my face so it would be nice to get some revenge for a few days!

I managed another yoghurt later in the evening to get another round of painkillers down me and the rest of my “normal” meds and I called it quits at that point in terms of trying to take more meds.  I called Mum to let her know that I was actually okay and we had a laugh about my flashbacks to being four years old and I dragged my sore tummy and sorry butt back to bed to try to get some sleep.

At this point, I must say how fabulous my cat has been post-op. Don’t get me wrong, she hasn’t made me a coffee, prepared an evening meal or offered to do the washing and ironing for me. But, it has been said that animals know when their humans are suffering and I think she has known. The first night home from the op and for the most part of the week, instead of jumping on my stomach for cuddles and fusses, she has stopped at the top of my legs (so I can still reach to fuss her of course) and at bed time or whenever I have gone back to bed for a nap, she has followed me and has been sleeping by my feet instead of on me.

Jill came round the next day to see how I was doing and to distract me from internet shopping which very nearly got way out of hand.  The day before surgery, I had stacked up the chair next to me in the living room with books, DVDs, my laptop, tapestry kits – all things that could and should keep me occupied during recovery.  All things that I needed to distract me from slipping in terms of my mental health and to stop me from internet shopping, which is a go-to activity when my mental health is suffering. I have barely touched any of them during my recovery so far. I also had my Sky Planner stacked up with various guilty pleasure TV shows and had stopped myself from watching the new season of Lucifer on Netflix so that I could watch it whilst recovering. To the day of publishing this post, I haven’t watched one episode of Lucifer yet!

Up to the point that Jill came to visit, I had managed to restrict my shopping to just one book.  As we all know, I’m a huge cricket fan and David “Bumble” Lloyd had been on TV in the morning advertising his new book.  Well, having Amazon Prime meant that was bought straight away and delivered the same day.  My theory was, I now had a new book as an added distraction.

That distraction lasted about 7 pages.  By the third day, my mental health took a massive dip.  I had a shower, washed my hair and changed the dressings on the four wound sites.  It wasn’t pretty but I did it.  I also felt incredibly sick all day and really didn’t want to eat anything so there were absolutely no meds taken at all that day, including my “normal” meds.  I really was feeling truly miserable. 

By the end of that day, I’d nearly sold my car, nearly bought a new car and there were so many things in various “baskets” on soooo many different websites.  I had nearly bought a yellow Mini Clubman – a 66 plate that was coming in at £12,000.  The reason I’d looked at it is I’d been thinking about a new car for a while, even though I can’t really afford one, and I’d started looking at the new shape Mini after having a classic Mini as my first car.  Also, Mum had this really cool Mini Clubman Estate when I was little and it was the first of the family’s cars that I really remember.  I even remember the number plate – WNK 21S.  Now, that is showing my age with the set up of that number plate.

However, by the end of the week, I managed to stop myself from buying the new car and had managed to restrict my shopping to the cricket book, a new iPod, 2 cardigans, a new pair of Timberland boots and a new pair of pyjamas.  In fairness, my iPod had been dying for a while and I’d been toying with that one for a bit and I do not own a nice cardigan.  I have fleeces coming out of my ears but a nice cardigan to take out with me (when I start forcing myself to go out into the world again) is something I don’t actually own.  The Timberland boots were on sale and they last years so they’re really more of an investment! I love their boots and they fit my feet really well as I have size 8 super wide feet and the boots are great with jeans. You can always never go wrong with a new pair of pyjamas.  So, in my defence and my ability to justify any internet shopping, the cricket book was the only thing that was technically an extravagance.  That’s my defence and I’m sticking to it!

Then, excitement hit my life.  I was getting a supermarket delivery which had cheese in it!  Yay!  Cheese.  For the first time in months.  What was I going to do with this little piece of heaven?  Sandwich?  Jacket potato?  Salad?  Or just slice it up and eat it as is?  I went for a toasted cheese sandwich with Red Leicester and Cheddar.  It was, quite frankly, the most delicious meal I had eaten in years.  After I had finished this plate of deliciousness, my heart was telling me to make another one but my head and my stomach were telling me not to push it and one was more than enough to re-introduce me to the delights of cheese.  I basked in the sheer joy-joy feelings that one little toastie had given me in terms of taste, normality and a sense of my life finally changing for the better. 

Now that might seem quite a lot of pressure on one simple toastie but trust me when I tell you that I genuinely don’t think I have the words to express how excited about the future that one simple toastie made me feel.

I may have gotten a little carried away, riding the wave of the tremendous toastie.  I went for a walk around the block only 5 days post-op and that may have been a little too much, too soon.  It was super painful so I won’t be doing that again for a few days.  I also went one step further and got in the car.  I only drove literally 1.5 miles in total and as much as it wasn’t particularly painful, it scared the shit out of me.  Before I set off, I did check that I could slam my foot on the break and clutch in case I had to make an emergency stop and I did check that I could turn my body left and right before I even started the engine.  However, I probably should have re-read the discharge notes where it stated that I shouldn’t drive for 7 to 10 days after the op (oops).  I’ll stick to online grocery deliveries for the time being and I’ll get a cab if I want to get out and pop around to Jill’s for a coffee.

I did have this image in my head that this weekend, I would pop up to see the folks as it’s my Dad’s birthday. Nope, that is not happening. Mum was utterly furious with me that I’d tried the car and it did make me realise that I am so not ready. That hit my mental health and I felt incredibly deflated (even though my stomach still isn’t). However, this time, rather than more internet shopping, I did get through 10 levels of Candy Crush. Still no episodes of Lucifer though!

I have got to slow down.  My body will take whatever time it needs to recover.  But, I’ve never been in this situation before.  Every procedure I’ve had before, I’ve known what to expect.  I’ve always known that when I’ve had a procedure on my back, I need to get moving as soon as possible afterwards to aid recovery.  I’ve always had a set schedule for recovery on whatever I’ve had done to me.  This is a whole new experience; I’ve never had an organ removed before and just didn’t really appreciate what I was going to be up against, especially as they had to do some extra rooting around because of the inflammation. 

So, here I am today, just over a week post-op and I’m not doing bad but I’ve still got a way to go.  Now that I have accepted this, I now need to manage my mental health over the next few weeks as I continue to make slow and steady progress.  I have my distractions at the ready.  I have to sit with the emotions of frustration and anger at not being able to do things at the pace I want.  I have to accept the lack of control.  It’s going to be hard work. 

I’ll still be keeping my eye on that Mini Clubman though.

Finally, the morning of Monday 7 September arrived.  The cab was coming at 6:15am to get me to the hospital for 7am.  It said on the paperwork that I was not to take public transport and there was no way Jill would be up at that time of the morning to take me, so cab it was.

I couldn’t eat anything after midnight and I could only drink water between then and 6am and I was to be totally nil by mouth after 6am.  I even stopped smoking.  I was giving this the best chance possible as far as I was concerned.

I arrived at the designated ward and was told that I was second on the list so would be going down for surgery at about 11am.  There was a blood pressure check, more questions to answer and the obligatory blood tests and the cannula made ready.  The anaesthetist came in for a chat too, wearing what seemed like full HazMat kit and I was given the never fetching hospital gown and compression socks to get prepared.  Then, as is the norm with the NHS, it was a waiting game.  I had a doze and then all of a sudden, it was my time.  I went down to theatre and saw the anaesthetist again.  I got myself comfortable on the bed and was holding the oxygen mask over my face.  That was the last thing I remember until I was woken up in Recovery.

For the first time ever after a general anaesthetic when I was woken up, I didn’t throw up!!  I had warned the staff and the anaesthetist that this was normal procedure for me, so to not be sick was a great start.  It still took me about 30 minutes before I started to feel even remotely normal and that was when they hit me with the news that there had been “complications”.  Oh Lord.  What happened?  What’s the result?  Did you get the gallbladder out?  What time is it?  What day is it?

The surgery was successful and my gallbladder is no more.  However, it was very inflamed so it took more effort to get it out.  The plan was that the operation would take an hour but it turned out I was down for three hours.  They had to pump more air into my stomach to make room to really get in there and chip away at the gallbladder to get it out. Lovely. Not entirely sure I wanted a full description of the surgery to be honest. And it was already 3.30pm.  Somebody then said something about an injection of something and something about 4 hours before going home.  I didn’t register any of that because I was dozing back off again and my brain felt super fuzzy.  I dozed for a bit longer and then I had a cup of tea and some toast.  I was actually quite hungry.  It was then that I asked again about the injection and the four hours because the paperwork had said about going home 1-2 hours after the surgery, not four, so I was confused.  Because the surgery had taken longer than planned, I had to have an additional injection to help prevent the formation of blood clots and that had to be the four hours. 

Very quickly, I passed all the other pre-requisites for discharge in that I’d had something to eat, something to drink and I’d been to the toilet.  I was already dressed back into my own clothes, I’d text Mum and Jill and told Jill what time I’d be allowed out.  I had packed my little overnight bag back together, I’d put some cash in the side of my phone case for Jill and Jack for petrol and to get themselves a take away because the delay had properly cocked up their evening and I had my house keys at the ready. Yet again, it was a waiting game until 7pm and I wasn’t patient at all. I just wanted to get home. I was up and walking around – basically pacing the ward.

At pretty much 7pm on the dot, I had my anti-blood clot injection.  I had my discharge paperwork, my spare dressings and it was now time for me to make my break for freedom!  I was escorted off the premises by the ward sister who had just finished her shift and Jill and Jack were waiting for me outside.  It was so good to see them.  Although I had spoken to Jill during my pre-op isolation, it just felt so good to see her (and Jack to be fair), to see them in the flesh.  It felt “normal” again even though I had just had a fairly serious operation! 

We got back to my house and they came in for a cuppa just to make sure that I was okay.  I had been texting Mum regularly throughout the day (when I was conscious) so she knew I was alive and well and I phoned her after they left.  She was relieved that I was home and safe but had been worried throughout the day.  Mum couldn’t come down to stay though.  We’d had a very in-depth discussion about it and we decided that because of the amount of time I had spent in hospitals over the past month, we couldn’t run the risk of me inadvertently picking something up and passing it to Mum who could then pass it to Dad.  I wouldn’t know if my C-19 swab was clear or not until the day of surgery so we decided that it was best not to take the chance with Mum and Dad’s health.  Now, don’t tell my Mum this but after Jill and Jack had gone home and I’d finished speaking with Mum on the phone, I took myself off to bed and really just wanted a hug from my Mum! 

But, the worst was over.  The op was done and now it was time to rest and recover.  Yeah, I wasn’t ready for that either!

As you may or may not know, the idea of the Pre-Assessment appointment is to just check that you are physically fit enough to have a general anaesthetic basically and the surgery itself.  It’s a fairly straight forward appointment, even during COVID-19, of a questionnaire about your general health, weight, height, blood pressure and some blood tests.  Easy.  The appointment itself was very easy.  However, what happened next, not so much.

The Pre-Assessment took place on Wednesday 12 August as planned at Queen Mary Hospital in Sidcup.  I was in and out in about an hour so all good.  I was told that the Team would be in touch to arrange a date for the surgery.  I was pre-warned that I would have to isolate for two weeks prior to the surgery to minimise the chances of catching COVID-19 as much as possible and that 72 hours before the surgery, I would be allowed out to have a C-19 swab test to check that I hadn’t contracted the virus before surgery.  Okay, not a problem.  I can get Morrisons to deliver the shopping during those two weeks of isolation so I was good to go. 

The following morning, I got a phone call from the Team to tell me that I needed to go to A&E as soon as possible to have a blood transfusion.  Now, what say what now?  Blood transfusion?  What the bloody hell was going on here?  I got him to explain it all to me again because he had caught me right off guard with those words.  Apparently, the blood that they took from me the previous day showed that I basically had sod all red blood cells in my body and dangerously low iron levels.  Well, we’ve known for a while that I’m anaemic but nobody at my GP surgery has ever really followed up on it and, to be honest, given that my life for so long has been dominated by the gallstone episodes, I hadn’t bothered chasing it up either.  So, the upshot was, I had to get myself to A&E straight away, tell them what the situation was and get a blood transfusion.  Otherwise, I wouldn’t be able to have the surgery. 

I burst into tears on the phone to Mum and Jill.  Jill said she would come with me.  So, after getting myself together, I drove round to Jill’s to pick her up so that we could get off.  As I pulled up outside Jill’s, I got another phone call to arrange the actual date of the surgery.  Bloody hell, give me a break people.  So, surgery was set for Monday 7 September 2020 and, given that I had to isolate for two weeks beforehand, I had to sort this blood transfusion thing out by Monday 24 August so I had 10 days to get ready for the surgery to their satisfaction.  Great.  As much as I love a deadline, this was taking the piss. 

Jill and I got the hospital and Jill was unceremoniously told that she couldn’t come in with me, that it was patients only in A&E.  Pre-Assessment had told me to take someone with me given my mental health issues but the nurse on the front door of A&E was not having it at all.  So, I had to send Jill home in a cab after she had wasted most of her morning whilst I sat and waited…and waited. 

More blood was taken and a whole chunk of it was spilled all over the floor in A&E as someone couldn’t get in at the right angle into my vein and ended up nicking it instead of getting the needle in it!  Blood flowed all down my legs, all over the chair and all over the floor.  They eventually went for the other arm (that was used the day before to take the blood tests) and a cannula was put into my hand ready for the blood transfusion.  A blood transfusion takes up to four hours.  Oh great, can’t wait for that. 

I saw 12 different professionals during the course of my 7 hours at Darent Valley A&E.  Most were more interested in my extra kidney and, according to a few of them, I have become known as “The Kidney Girl”.  There was much debate about whether a blood transfusion was actually needed or whether iron infusions were the way forward.  Well, after 7 hours and umpteen conversations, it was decided that iron infusions were the way forward to start off with.  But, and it’s a big BUT, A&E don’t do iron infusions.  It’s done in a different clinic that I would have to be referred to.  Hopefully, they would be in touch with me in a couple of days to get the infusion done before I had to go into pre-op isolation. 

So, after all that time, being prodded and poked all over the place, losing a chunk of what little blood I had left, a C-19 swab test, way too many conversations about being “The Kidney Girl” that I considered to be practical in determining my treatment and actually not having a resolution, I was sent home.  The clinic that I was referred to was the AEC Clinic (Ambulatory Emergency Care).  They would be in touch in a couple of days.  I stopped off at Jill’s on the way home for a cuppa and a vent of what a waste of a day, looking like a pin cushion and my arms bruising nicely from the cocked up attempts at taking blood and the unused cannula in my hand.

Well, Friday morning first thing (the very next day), I got a phone call from AEC to get there as soon as possible that morning and I would be assessed for either an iron infusion or a blood transfusion.  The blood transfusion option was still on the table.  Oh for the love of God.  They gave me a password to get into the main hospital building and off I went.  I just text Jill and called Mum to let them know the latest and off I toddled to the hospital – again.  I got there at 10.30am and sat and waited…and waited again.  More blood tests, more discussions with various specialists and still no decision about whether it was going to be a blood transfusion or an iron infusion until 3.15pm when I was escorted to a bay by a nurse and hooked up for an iron infusion.  They were originally going to do both. It turns out that you can’t have both at the same time either. If you’re having a blood transfusion, that has to be done all on its own.  It was when I was being hooked up for the iron infusion that I actually asked if there was a blood transfusion coming afterwards and he said no, just the iron infusion.  Oh, okay, well depending on how long the iron infusion would take, I would be going home afterwards.  Cool.  Would be you believe that after all that, the iron infusion took 20 sodding minutes!  🙄Another day wasted in a hospital waiting and waiting and being prodded and poked and even more discussions about my extra sodding kidney, all resulted in 20 minutes.  And breathe….

However, I would have to have a second infusion the following Friday.  There would be more blood tests, another C-19 swab and the blood transfusion was still up for debate depending on the blood test results on that day.  Lord have mercy.  Can somebody please make a bloody decision about this transfusion?  The possible blood transfusion was the least of my problems after the infusion.  The list of side effects is, quite frankly, worse than those for a general anaesthetic.  Thankfully, I didn’t get the nausea and the headaches but the joint pain was absolutely out of this world, and it lasted pretty much the whole week until the next infusion!

The following Friday, I toddled off for my second iron infusion and still none the wise as to whether there would be a blood transfusion.  My arms were still bruised and sore from being prodded and poked the week before and I had literally just recovered from the joint pain side effect of the last infusion.  I arrived for yet more blood tests, yet another C-19 swab (let me tell you they are not fun so hats off to anybody who has to have them on a regular basis) and even more flaming discussions about my damned kidney and a blood transfusion.  It wasn’t until I was hooked up again for the iron infusion that they told me I wouldn’t be having a blood transfusion and that the latest working theory was just to have extra blood on hand when I actually had the surgery.  Really?  That didn’t really instil a huge amount of confidence I have to admit.  20 minutes later and the second infusion was done and I was on my way home again to get ready for not only the ensuing joint pain, but starting to organise myself for the pre-op isolation.

The pre-op isolation ran over Bank Holiday weekend.  Over that weekend, I was invited to more than five different social events with friends and I couldn’t go to one of them!  I hadn’t seen any chums properly all year and the one time that we could all meet up, I wasn’t allowed.  Proper grumpy.  There was a huge part of me that was thinking, well I’m not having my C-19 swab until the following Friday so that would be the deciding day of whether I was having the op and should I just risk it to have something resembling a social life?  I chose to be sensible and not go to anything.  I decided that I couldn’t run the risk of not being able to finally have the operation that should change my life for the better for the sake of catching up with chums.  As it turned out, I had a whole series of episodes over Bank Holiday weekend so even if I had gone out, I’d have been as sick as a dog and probably felt so humiliated that I’d been unwell whilst out with chums.

On Friday 4 September, I was back at the hospital yet again for my official pre-op C-19 swab.  I think it’s actually harder to have the swab knowing what’s coming.  I gagged a lot during the swab to the back of the throat and the swab up my nose really tickled and made my body shudder.  Thankfully, they managed to get a swab but proceeded to inform me that I needed to just “pop next door” for more blood tests to see how the infusions had gone.  Most thankfully, next door were expecting me and I didn’t even have time to send a text before I was in the little room with a nurse who was an expert in taking blood and I genuinely didn’t feel a thing.  Well, there was a first for the past month!

So, that was it.  I was done.  All I had to do know was read all the paperwork again as to when I had to stop eating/drinking before Monday, book the cab to pick me up at stupid o’clock in the morning as I had to be at the hospital for 7am and pack my little “just in case” overnight bag.  After a rough 4 weeks of blood tests, C-19 swabs, having to spend way too much time in hospitals and endless discussions with too many professionals to mention, the surgery was going to happen.  I was ready…or so I thought.

So, it’s been a while since my last post.  There has been a lot going on.  I had my telephone consultation with the surgeon in May who informed me that I would definitely be having my gallbladder removed.  There was absolutely no debate whatsoever about just taking the stones out.  After I had described all of my symptoms to him and given my most recent episodes and experiences with the NHS, he was absolutely adamant that the whole thing was coming out.  Yikes, okay.  Well that should stop the episodes completely so it’s definitely the best thing.  He said that the surgery would be in around three months’ time so that would take us up to September but obviously it would be COVID-19 permitting.  I’ll be honest, I figured September was supremely optimistic and if the surgery happened before Christmas, I would be extremely impressed.  At the end of the day, I knew at that point there was light at the end of the tunnel and it would be over soon so I could handle whatever episodes were to come.

Well, knock me down with a feather but at the beginning of July, I got a phone call from the Surgical Pre-Assessment Team to book me in for my pre-assessment on 12 August, with a view to having my surgery at the beginning of September.  Wowser.  I was not expecting that at all.  The surgeon was right with his estimate of three months and I seriously underestimated the NHS being able to meet that estimate.  Go, NHS.  This could all actually be over by Christmas.  As much as I was now getting nervous about having surgery during a global pandemic, I was actually getting excited too.  The possibilities after this was done.  Being able to live a “normal” physical life again without the great cloud hanging over my head of when is the next episode going to come.  The dream of being able to get in the car without having to take a whole “kit” of stuff with me just in case I had an episode whilst out driving was also disappearing and looking like a reality, given a bit more time. 

I’d had an episode on the M25 on the way to see my parents for the first time this year on Father’s Day in June, after lockdown restrictions had been lifted.  Throwing your guts up on the hard shoulder of the M25 isn’t the most pleasant of experiences I have to tell you, especially when a Police patrol car pops up and thinks you’re hungover and wants to give a breathalyser test!  Trying to explain to two very lovely Police officers that you haven’t been drinking but you have gallstones, in between throwing up, is quite tricky I can assure you but they were very lovely and once I had finished being sick, rinsed my mouth out, brushed my teeth (yes, I have a toothbrush and toothpaste in my “kit” in the car), I obviously passed the breathalyser. Even though I had very carefully explained to them that I’d had a gallstone “episode”, they were still insistent that I take the test. Wow. I wonder if they’ve had someone try to use a gallstone “episode” as an excuse before? Anyway, they went on their merry way and I continued on to see the folks.  Just as an aside, seeing my folks for the first time in six months was absolutely fabulous.  Mum said that it was the most animated Dad had been for months and it really boosted my mental health as well, just to see them.  There was no hugging, it was still socially distanced and there was a lot of hand washing going on but just to be in their company in person and not via Zoom was just fabulous. 

So, progress was being made and it would soon all be over.  However, there will still some bumps in the road ahead that would make me question whether I would even get to have surgery and if it was all going to be worth it.

In the past two weeks of lockdown, I have had two completely different experiences of dealing with the NHS, through the 111 Helpline and having to dial 999.

In the early hours of the morning of Wednesday 29 April, I experienced a gallstone episode and, again, the symptoms were different. I wasn’t sick, it was just two hours of retching, the indigestion type pain, the sweating and the horrific back pain along with feeling light headed. During the course of Wednesday 29 April and Thursday 30 April, although the indigestion type pain had passed, the back pain became unbearable. I dialled the NHS helpline first who, after being on hold for approximately 30 minutes, cut me off. The pain worsened so I dialled 999. At this point, I had been in pain for over 24 hours (much longer than the 1 hour recommended to me by my GP before dialling 999). I went through my symptoms with the call handler and was told that, basically, no paramedic would come out to me for, and I quote “back ache”! Back ache? Back ache? This is not me having done too much gardening in one afternoon and pulled a muscle. This is not me having gone a bit overboard cleaning the kitchen floor and vacuuming the stairs. This is not back ache! I was told to phone the NHS 111 Helpline and when I advised the call handler that I had and had been cut off, she told me to call them again. I did. I eventually got through. After nearly three hours of going backwards and forwards, the advice from a GP was to use a hot water bottle! Really? I’d taken approximately in the region of 8-12 tramadol at that point and you want me to use a hot water bottle!

Anyway, at approximately 10:20pm that evening, I received a further call from the NHS Helpline advising me that they had arranged an appointment with a doctor at the Urgent Care Centre at my local hospital (not A&E) for 11pm that night and I just had to get there. Okay, so how was I going to get there? I can barely move so driving isn’t an option. Plus the fact that if I drove up there and was, for some reason, admitted, who is going to then drive my car home or keep pumping the ticket machine full of cash in the car park? Public transport is out of the window because, under normal circumstances, it takes 45 minutes on my local bus from my house to the hospital, let alone during lockdown on a reduced service and at 10.30pm! Okay, cab it is then. I phoned four different cab companies in my local area and none of them had anything available for at least an hour. Well, that’s just great. So, I had to phone 111 back and cancel the appointment. I asked if there was anything available for later that night, but there wasn’t anything. I can’t phone anybody at 10:20pm and ask them to drive me up there because, firstly, there are the social distancing rules and secondly, and most importantly, the ones I could have potentially asked would all have had a drink by 10:20pm during lockdown so they’re not touching their car keys!

So, I took yet more tramadol, curled up on the sofa to try to get comfortable, cried a lot and eventually fell asleep. Given the amount of tramadol that I’d taken, it was more likely that I passed out to be fair. I was still in pain on the Friday morning when I finally came to after the previous night’s tramadol. It wasn’t as bad as it had been and given my experience the previous night, I decided that I wasn’t even going to bother that day trying to either get hold of my GP or ring the 111 Helpline again. I just had to suck it up and get on with it. It took a total of four days for the pain to completely pass and I was pretty much immobile that entire time. It was awful. I felt so completely useless and there was a lot of crying but I just felt that because I couldn’t get hold of anybody medical that would give me some decent advice, what was the point of trying?

In the two weeks following that, I had a couple of “mini episodes”. 30-45 minutes of feeling like utter hell, lots of vomiting and then then pain passed. I can deal with them because, as soon as I start being sick, the pain starts to subside. No food ever comes up, it’s always bile. Theoretically, I should be stick thin given the amount I’ve thrown up over the past few weeks but, I swear to God, that if I put on any more weight during lockdown, Google Maps is going to be convinced I’m a roundabout.

Anyway, on Tuesday afternoon of last week, I had a further “mini episode”. 30 minutes start to finish. Hit by excruciating indigestion type pain straight away and back pain, I went straight to the bathroom. I was sweating and felt light headed but literally as soon as I got to the bathroom, I started being sick. I was sick continuously for about 20 minutes. Once that had stopped and I had rinsed my mouth out and brushed my teeth, the pain immediately started to subside. I got myself a glass of water, sat down for 10 minutes to recover and then was straight onto a Zoom call with the family for my youngest nephew’s birthday as if nothing had happened. I was tired but all good to speak with the family. No problem.

I wasn’t so lucky on Wednesday morning. This where my second experience of the NHS was completely different. At about 9am on Wednesday, I started getting the indigestion type pain and it was getting worse. The back pain started to come into play as well so I headed off to the bathroom to get as comfortable as possible and get ready to be sick. For the next hour, I was continuously sick. It was purely bile, I hadn’t eaten on Wednesday morning or, indeed, on Tuesday evening after the “mini episode” so where all this was coming from, your guess is as good as mine. By about 10.30am, I’d had enough. I was still in a ridiculous amount of pain and now I couldn’t catch my breath. I phoned Jill. I put her on speaker phone and tried to tell her what was going on. Immediately, Jill knew this was a bad one and said she would phone for an ambulance. I knew that I wouldn’t be able to answer all of the questions that they ask you if I phoned so I was very grateful that Jill could do it for me.

Jill phoned back to say she had called for an ambulance and the paramedics arrived incredibly swiftly. They were absolutely lovely. Jill showed up to the house just after they arrived also. I’m afraid to say that social distancing went right out the window that morning! It took quite a while to get my breathing under control, but eventually it settled. We went through the usual tests of my blood pressure, blood sugar, heart rate, ECG and oxygen levels. All was normal as I knew it would be because it always is, even during a major episode.

The paramedics stayed with me for over two hours. Obviously, we’re all trying to avoid me having to be admitted to the hospital because of COVID-19. We eventually got some paracetamol into me and the indigestion type pain started to subside but didn’t go completely and the back pain was still there. Basically, with all of the vomiting, it had induced a panic attack. The panic attacks that I have had before don’t show themselves with hyperventilating. Usually, I am just stuck in one spot, cannot move and feel as if I’m have an out of body experience so to have a panic attack with these symptoms was a whole new experience for me and a damned scary one it was too.

The paramedics reassured me that the residual pain that I was feeling once my breathing had returned to normal was because of all the straining as a result of the vomiting. They said that I would feel like this for a while and should aim to get more paracetamol down me in another 4 hours.

The paramedic crew themselves were funny, kind, reassuring and bloody good at their jobs. They had a wicked sense of humour and, clearly, this particular crew are very good chums, know each other incredibly well and get on like a house on fire. Definitely a “work husband and wife” team. The things that these crews must see and experience and they still had a most fabulous sense of humour – albeit quite a dark and sarcastic sense of humour, which mine definitely can be too!

They gave me my copies of the paperwork which is something else that I have now got for my discussion with the Surgical Team this week. They didn’t want to leave me and kept reiterating that if the pain didn’t go away, I was to call 999 again and they would come back. I told them about my previous experience and they were neither amused nor surprised! Their staff details were on the bottom of the paperwork and so, on Thursday morning, I sent an email to the London Ambulance Service telling them of my gratitude and commendation to the LAS about this particular crew because they were, quite frankly, amazing. I genuinely do not know how I would have coped on Wednesday without their support and most certainly without Jill’s support.

So, this Wednesday is my telephone consultation with the Surgical Team. Jill and I asked the paramedics questions about procedures and they said that things were starting to move again in terms of non-urgent operations/procedures so there is a little flicker of light right now that I may start to make some progress in terms of finding out when this will be dealt with. In the meantime, I carry on as “normal”. I hope that each episode will be a “mini episode” that I can deal with (although shouldn’t have to be dealing with) and if I do have another major episode, there is no doubt in my mind that this crew have restored my faith in 999 and the NHS in relation to non-COVID-19 matters.

We’re coming up to four weeks into our lockdown in London now and I’m seeing more and more in the press about how this lockdown can affect mental health and what we should be doing to assist in staying healthy.

As someone with pre-existing mental health conditions, this comes with a whole host of new challenges. As I have mentioned before, the self-isolation and social distancing wasn’t a huge change to my usual way of life. For many years, the bins have gone out more than I have. I’m sure many of you have seen the joke doing the rounds on Facebook at the moment about “the cat now asks me if I want the radio left on while it goes out”! That’s exactly how it is in my house. The cat, compared to me, is a social floosey and she sleeps for 17 hours per day!

We already know that I’ve actually had to go out of the house more than usual because I can’t get an online shopping delivery slot so I’ve actually had to venture to the shops. Now that has become a more civilized procedure, I feel better equipped to deal with that. It is still very much of a challenge though and “just popping to the shops for a few bits” is mentally exhausting and, at times, incredibly scary for me. I have a permanent shopping list on the go so that when I feel ready to tackle the outside world, I can just pick up that list and go. Unfortunately, I can’t pre-plan going at 11am next Tuesday because I don’t know what I’m going to feel like at 11am next Tuesday so I have to go when I feel good enough. Hence, the ongoing shopping list. When I tried to get an online booking slot with Morrisons at the end of last week, I was greeted with the usual message.  There were 5,647 people ahead of me in the queue and still nothing available. But, at least the queue has gone down. The last time I looked, there were 22,846 people ahead of me in the queue!!

However, what about being indoors? How is it really affecting me and what have been doing about it?

I can very easily and half-jokingly say that I already lived the life of a hermit, only occasionally leaving the house so this social distancing is not a problem for me. That is only true to a certain extent. The first week of the lockdown, I was absolutely fine because I wasn’t really adjusting to anything. It was just a “normal” week where I didn’t leave the house but was speaking to Mum and Jill every day. It has been the second week onwards where I have really started to notice an effect upon my mental health.

Something I worked out really quite early on in this crisis was to limit the amount of news I was watching and the amount of time reading anything on social media. At the beginning of the crisis, there was so much mis-information across all media platforms. I was guilty of falling for one of the mis-information posts. So, I decided that I should just refer to a couple of trusted websites for COVID-19 information. The NHS website obviously is my first port of call. The media outlets are just full of the same bad and sad news and now, instead of being just a health crisis, it’s becoming political. Just stop. There will be plenty of time for a post mortem of how the Government reacted to the crisis once we are out the other side. Let’s just deal with what is in front of us right now. I had to turn away from all of this because it was making me mad.

For those without pre-existing mental health conditions, the advice for coping with the self-isolation is to try to set and/or maintain a routine. For those who can and are working from home, they have been advised to set up a separate work area to differentiate between “home” and “work”. For those with children at home, it’s setting time aside for the home schooling and ensuring that the kids do the work that has been set aside for them. That’s great and really sound advice and is hopefully working for those who have been able to implement it. But, what about those who truly live on their own, aren’t working from home and are coping with a pre-existing mental health condition?

I have always tried to keep a routine. Tried being the operative word. Certainly, in terms of what time I go to bed and what time I try to get up in the morning, I have always tried to preserve that aspect of a routine. Obviously when the depression really kicks in, that doesn’t work. However, I have become very good at saying “well, it didn’t work today and that’s okay, I’ll try again tomorrow”. You have to be kind to yourself. Everybody does. Pre-existing conditions or not. We are in unchartered territory here and it is essential that, right now, we take everything day by day. It is absolutely okay if you don’t get out of your PJs today (whatever the status of your mental health). It’s absolutely okay if you didn’t brush your hair. It’s absolutely okay if the kids didn’t have a bath today. It’s absolutely okay if the kids spent more than their usual time on electronic devices. This is all okay. DO NOT beat yourself up about any of this. Just remember that you made it through the day, your kids are loved, you are loved and you are safe. Right now, take that and run with it (obviously keeping two metres apart and only for your daily exercise)!

Some people have seen this forced isolation as a chance to catch up on all those little jobs that they haven’t had time to do before. If DIY isn’t your forte, STOP RIGHT NOW. The chances are that you’ll have a DIY induced accident of some description and put even more pressure on our already overstretched NHS right now. Leave re-wiring your house alone. Don’t re-plumb your bathroom. Don’t put that set of shelves up if you’re not completely comfortable using your drill. Don’t get that step ladder out and clear the gutters if the ladder is a bit old and rickety. Leave it.

In terms of doing little jobs, for me as someone with mental health issues, I have found it useful to write lists. I don’t make the lists extensive because I could take one look at them and say to myself “well, that’s never going to happen” and give up straight away. I have a list of “little” jobs. This isn’t different to my usual way of life. They really do include the simple things, such as doing the washing up, washing my hair, putting clean clothes on. Really the day to day stuff that those without issues would think nothing of but, to me, can take an immense amount of effort.

I also have a list of “big” jobs. These are the ones that I can really only consider doing when I’m having a really good day or, quite frankly, when I’m in a peak or “manic” courtesy of the BPD and Bipolar. Those days when I can go through the house like a tornado. That’s when the “big” jobs get done. Vacuuming the stairs, cleaning the windows, ironing. Again, they may still seem like normal day to day jobs to everyone else, but these things are absolutely mammoth tasks for anyone with severe mental health issues. Over the years, I have (subconsciously to start with) come to utilise the manic days as constructively as possible. The reason that I make the list of the “big” jobs is to give it some structure. Even though I’m manic, my brain is still not really functioning truly coherently. It’s running around in circles at 100 miles per hour and I need to reign it in a little and give it some focus. That’s why the lists work for me.

I didn’t actually start making these lists properly until after taking some time to reflect upon my manic episodes. This was as a result of watching a dart player have a manic episode on stage back in 2018 (see my post on “Is a manic episode good?” for full details). During my manic episodes (and to a certain degree the depressive episodes), I keep a diary of what I get done during the day. This allowed me to go back and clearly see when I was in a manic episode and see what I was achieving during that time. I also looked at the depressive episodes and, even during my darkest times, if I could put one thing in that book that I had done that day, I would consider that a massive achievement. Quite a few times, the only thing that is written in that book during the darkest days is that I actually made it through the day. On those days, that has to be enough.  That also then puts me in the bracket of “functioning” with mental health issues. Thus, the “small jobs” list and the “big jobs” list were born!

Lockdown has really hammered home how much I rely upon Jill and Jack and their family. Even in previous times when I haven’t been able to get to see my parents and/or my sister and her family, I’ve always been able to pop around to Jill’s house if I needed a break. I can’t do that now and it’s starting to prove quite tough. I always knew that Jill and the London Family were a huge support for me but lockdown is really opening my eyes up to it. Jill and I still check in with each other every day or, worst case, every other day but the lockdown has made me realise how much I value her and the London Family and, quite frankly, that I do probably take them for granted. That is going to change once the lockdown is over. I am so going to take Jill out for the best slap up lunch and afternoon together that we can once we are through this, just to let her know how much she means to me and how thankful and grateful I am for her friendship and love.

Basically, my support network has disappeared into lockdown. I can’t see my parents either. I’m worried about them. They are squarely in the vulnerable bracket and I can’t just go and see them to check in on them. However, I did come up with sort of a solution for this during the crisis. I got my Mum, Dad and sister to all create Zoom accounts (other video conference platforms are available). I talked them all through setting it up and we now have a weekly family video conference call on a Sunday afternoon. That way, I get to see my family and my parents get to see their children and grandchildren, albeit remotely for now. It is helping me a bit and I think it’s helping my parents a bit too as I know how much they miss the grandchildren. It’s all we can do for now but something is better than nothing. The fact that I got my IT unfriendly family all on Zoom is quite an achievement in itself to be fair and that warranted a little tap on the back for me I have to admit.

How I can tell that I’m most definitely deteriorating in terms of my mental health is that I’m eating myself out of house and home right now. I know that I have put on at least half a stone (7lbs) in weight since lockdown. I spend my entire day eating. I know that many other people are doing the same. Again, there are so many joke posts doing the rounds on Facebook at the moment about how much weight people will have put on during lockdown and the fact that Christmas eating rules apply during this time, but for me it’s a vicious cycle. I’m eating everything in sight and then I have to go out again to the shops to re-stock. I hate going out to the shops so I’m on edge when I do get there. I’m emotional shopping as a result of being on edge and anxious so I come back with all sorts of crap food which I’m then shovelling down my throat. I am buying sensible food as well, there is lots of fresh fruit and salad in the trolley too but that is way offset by the amount of chocolate that’s accidentally finding its way into the trolley and the shopping bags.

I’ve never been a fan of phoning the Crisis Line in my borough for mental health or any of the other telephone support lines as I have never had good interactions with them. There’s no way I’m going to present at A&E right now and hope to see a psychiatrist.  The NHS is under way too much pressure right now without someone like me rocking up having a total meltdown.  So, I’m out in this lockdown on my own without my support network. I thought I was floundering before lockdown, but this is a whole new ball game. I’m desperately trying to implement the techniques that I learned during my Mindfulness training but nothing seems to be getting through right now. If this is a time where I just have to “Ride the Storm” (courtesy of Shotgun Messiah), it’s going to be the longest run I’ve been through for quite some time and I’m not seeing any light at the end of the tunnel just yet. My GP surgery is closed right now and I don’t even know yet how I’m going to get my repeat prescription for my medication sorted out. I’ve still got two weeks’ worth of medication but it’s something I need to start investigating now in case it’s going to be somewhat of a faff getting the repeat prescription.

Hang in there people. This will end at some point. Every day that we get through is one day closer to being out the other side. That’s what I’m holding on to along with a bar of Galaxy chocolate.