Never mind…the introspection

It’s been a while, hasn’t it?  Last episode’s cliffhanger saw me in the aftermath of panic attack number 691, dashing to the A&E department of a local hospital, and not dealing with the loneliness and emotions that Trisha’s death has left me with. What’s been going on in the two months since?  Well…

I’ve had a bit of a health scare.  I found a lump where a bloke isn’t supposed to find extra lumps, which didn’t do wonders for my stress and anxiety.  To tell you the truth, it sent me into orbit with worry.  I started thinking that stress had manifested itself into a physical symptom.  Just as I was beginning to think in terms of being able to start my life again, here was something serious that was going to curtail it all.  Fuck my luck.  Or some self-pitying shit like that.

I did the sensible thing and got it looked at.  Nothing sinister.  Or on the right.  So, I can stop that nihilistic train of thought.

In other news, I’ve also started bereavement counselling sessions offered by the hospice where Trisha spent her final days.  I’m half way through the sessions and I’m finding them to be a real help.  When I first spoke with the counsellor on a one-to-one basis, I admitted to still being in a state of hyper-vigilance.  I’m not overtly jumpy because I have a long-standing defence mechanism.

When people are confronted with someone who’s radiating anxiety, their initial reaction tends to be to withdraw from that person, so as not to be affected or have to deal with it.  I don’t want people to withdraw from me, so I’ve learnt to mask how I feel, mainly because I don’t want to be judged negatively by anyone (this has been a thing with me since childhood, but I’ll not go into that just now), but, apparently, what I was saying to the counsellor showed signs of a high level of anxiety.  Always on a hair trigger, waiting to react to some kind of threat.

However, over the past two or three weeks, I’ve noticed that I’ve changed a little.  I’m less inclined to race from zero to 100 in terms of anxiety.  I don’t know whether this is due to the sessions, the relief following my health scare or other parts of my life that are positive.  This isn’t to say that my antennae don’t go off every now and then, but I’m not jumping at the slightest noise.

When Trisha was still here, I would constantly monitor everything for the slightest change: Trisha’s bodily reactions, my body, external sounds, even smells.  The tiniest thing would trigger me.  This change can only be a good thing, but, since I can’t yet put a finger on the reason why, I don’t know if it’s temporary or permanent.

Something else that’s come to light is my tendency to see everything I do as either perfect or shit.  There’s no in between.  There’s no OK.  I constantly look for things within myself that I can improve to ensure that I appear ‘normal’ to the outside world (and make sure they don’t want to withdraw from me).  All things to all people.  Physically more attractive, more personable, better at this, able to do that.  All the while thinking that I wasn’t good enough.

It was the same with caring for Trisha.  Perfect or shit.  Perfect meant she was still alive and well; the opposite meant…well…the opposite.  I still struggle with this.  I always assumed – wrongly, I realise now – that if I did my bit, if I did my best to provide Trisha with the care she needed, she’d stay alive and well.  I saw it as being my job to keep her alive.  As she worsened, I’d try harder, try to eliminate all my defects, as I saw them.

See where this is going?  I tied myself in knots, emotionally, trying to achieve something that was impossible.  I couldn’t have made a difference, no matter how hard I tried or what ‘improvements’ I made to myself.  Even writing this last sentence doesn’t stop the little voice in me which tells me to look for the defect that led to Trisha dying, and improve it.  I am trying to be a little more self-accepting.

This outlook is affecting how I’m looking at the future.  For all intents and purposes, I have a blank canvas.  But, because of the perfect/shit self-judgement, I’m scared of making errors – what if I move to a house I don’t like?  Or an area I’m not happy living in.  Do I return to study?  What if I don’t like it?  What if I pick the wrong subject?  I know, I’m scared.  I’m scared of failing and making an error.  I’m working on it.  I knew I needed some help and the counselling sessions have confirmed that.  I still have three one-to-one sessions left and I can go to group sessions for the next year or so.

I’m also aware that the first anniversary of Trisha’s death is looming.  In a couple of weeks, it’ll be a year since Trisha was taken into hospital with swallowing difficulties.  I have no idea how this is going to go.  I may feel like writing a little more over the coming weeks, I might want to withdraw.  Either way, I will keep trying to better deal with things.

That was the week that was

I hesitated before writing this.  Who wants to read that I’m struggling?  Who am I to think anyone would want to know?  People have got their own stuff going on and don’t need to hear mine.  Yet here I am, opening up a bit.  Because I must.  I’ll only get worse if I don’t.

Just over a week ago, I found myself crying tears of shame in A&E after a panic attack.  Relieved to discover it wasn’t the heart attack I’d self-diagnosed; ashamed that I couldn’t cope with life.  Yesterday, I was going to go out for a coffee, just to get out in the sunshine.  I got dressed and ready, then I hesitated.  I questioned myself.  Where am I going to go?  I won’t be meeting anyone.  I’ll be on my own again.  I can do that at home.  So, with my self-confidence beaten, I got changed again, into kit I wear around the house, and didn’t go out.

I’ve been here before.  For me, this leads to depression, even agoraphobia.  I don’t want to go back there again.  It’s a terrible place to be.

Long time readers will know that I’ve been fighting for years with anxiety and periods of depression.  Since Trisha died, I’ve been concentrating on practical things and not dealing with the loss.  I’m lucky that I can rationalise my way through daily life but that comes at a cost.  My body is showing symptoms and I need to let my emotions catch up.

If you’re expecting a coherent explanation of how I feel, I can’t give you one.  I don’t have one for myself.  My inner monologue describes snippets of feelings to me but that description has no real meaning, no flow to it.  If this is grief manifesting itself, then it’s true that it has no linear path; it’s more of a scribble that meanders its own way, in its own time.  I need to start making sense of what happened, not just when Trisha died but over the whole course of her illness.  That means talking to someone.  That means reaching out and admitting that I can’t deal with everything.  I don’t have unlimited reserves of strength.  I’m not superhuman.  I never was.

If I’ve learnt one thing dealing with this – and I’ve probably learnt only one thing – it’s that ignoring these feelings won’t make them go away.  Help is there.  If you’re struggling, please talk to someone – anyone.  Don’t hide away and think that you don’t deserve to be heard, to be helped.  You do deserve it.  You are worth someone’s time.  Please go and find the help you need.

Coping

For the first time, the thought “I can’t do this any more” fleetingly entered my head.

The “I can’t do this any more” thought came into my head last week.  MW had two choking fits in one day.  The latter of the two being more acute.  I’m holding her upright while she’s struggling to breathe, unable to move, and trying to cough up the foreign object – a stray bit of regurgitated food or drink.  I pressed the button to alert the carers and one of them came to help.  Neither of us could do anything practical.  We can’t go into MW’s airway/lungs and pull out whatever it is that’s caused it.  The warning sign is always a gurgling sound in her stomach followed by a quiet ‘burp’ sound and frantic coughing.  Sometimes it’s not very bad.  A few coughs and it’s out.  Other times, it’s more serious.  Breathing becomes a problem and I can do nothing to help.  On more than one occasion, I’ve had the phone in my hand, ready to call an ambulance.

I had another panic attack last night.  Not as bad as a couple of weeks ago.  Probably a build up of stress coming at me from all sides.  I suspect that this post will elicit some advice along the lines of “you need to reduce your stress”, “is there anything you can do?”.  I know I need to do something about my stress.  Or it really is going to have a lasting, drastic effect on my life.  After the choking incident, I had a quiet moment to try to forget the sound of MW gasping to catch her breath and the feeling of utter helplessness.  That’s when it popped into my head.  “I can’t do this anymore”  “My best isn’t good enough”

So, I’m coping.  At least, I think I’m coping because I’ve not dropped any of the plates I’ve got spinning, but maybe my body is trying to tell me otherwise.

Fuck Friday.

#FuckFriday

This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post).  It’s my description of today.  Because today can get fucked.  It’s been a giant, festering turd of a day.

It started at 0645 with MW wanting to go to the toilet.  So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet.  Cue alarm from the vac machine saying there’s a leak in the vacuum – meaning the dressing has lifted.  Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other.  The alarm eventually stopped.  I got her cleaned up, got *me* cleaned up, and took her back to bed.  I managed to get a bit more sleep till the carer arrived.

The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily.  They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working.  There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.

These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.

The day went sideways about 1230.  The GP rang.  MW had bloods taken yesterday and this was the follow-up call now the results are in.  MW is anaemic.  Seriously anaemic.  Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets.  He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back.  It wasn’t a lot of information but enough to start alarm bells ringing.  MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on.  Surely lightning couldn’t strike twice, could it?

When the GP rang again, his first questions were about MW’s MS, How long had she had it?  Is she wheelchair bound?  Etc.  He was particularly interested in her bowel movements.  He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today.  Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer.  “Is there any blood in her stool?  Are you happy for her to have the tests done?”  I’m not kidding, I nearly shit myself.  Although I deal with affairs on MW’s behalf, I don’t make decisions for her.  Especially decisions pertaining to her medical care.  I told the GP that MW can, should, and does make those decisions herself.  The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests.  He’d leave it with me and a nurse would call for the blood.

After the call, I was left not knowing what the hell was going on.  This GP had rung twice and left a couple of grenades behind.  I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done.  After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation.  As if we’d not had enough to deal with and overcome.  I was scared.  I won’t gloss over it.  I was very, very scared.  What would the spectre of cancer mean for MW?  How would she cope if it were confirmed?  It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there.  Joining all the other neon-lit elephants in the room.

I lost it.  I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach.  I didn’t know who to turn to for reassurance.  I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes.  I tried the MS specialist nurse – she’s on annual leave.  I rang the MS Society helpline.  A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today.  She advised me to get back in touch with the GP.  First, for reassurance.  Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack.  It was the final straw that broke my system.

The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea.  She could see I was struggling and stayed with MW to keep her occupied.  MW was relatively calm, although she’d later admit to being confused by the whole affair.  I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again.  He agreed to see me later in the afternoon.  In the meantime, I tried to calm down enough to help the carer to shower MW.  I spent over an hour shaking and crying.

The GP had more information at the appointment.  He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel.  This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently.  The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore.  They’ve agreed that MW will go into hospital and have a CT scan to start with.  They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests.  To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated.  GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.

So, the spectre of cancer looms a little less large now.  I understand that GPs are duty-bound to be honest in their dealings with patients.  I know that our GPs have a large workload and might handle things differently if their workload was less.  I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia.  The potential of cancer investigations in top of that was something I couldn’t deal with.  I’m loathe to criticise medical staff without good cause, just to take frustration out on them.  That’s not fair.  This blog post is too long now for me to go into specifics but I think this could’ve been handled better.  For MW.  For me.

I try, as far as I can, to hold it together for MW.  I not only have to deal with the logistics of medical service provision – sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time – but I also have to explain to MW what’s going on.  I need to comfort her too because she gets scared, gets confused.  I can’t do any of that if I’m in pieces.  I’m not in the same state as I was this afternoon, nor do I want to be.  Because today’s been bad enough.  Fuck it.

Fear and self-loathing in the North.

I don’t really know where to go with this.  But the last two weeks have been difficult to say the least.  As I type this post, I can feel the urge to shut the laptop down and not write it.  It’s embarrassing to write about.  So the question is, why do it?  Because I need to let it out.  Because I’m tired of bottling it up.

I moved house two weeks ago, which isn’t an easy task.  When you’re solely responsible for moving the lives of two people, it’s harder.  There’s no-one to share the load with.  I’ve organised everything: the new house itself, dealing with the housing association, removals, the packing, getting social services on-side, organising a new care team, new equipment, dealing with the old landlord (of which more, later), swap-over of domestic services, address changes….the list is a long one but it’s all been down to me.  That’s just the way of things – it couldn’t have been any other way.

I’ve felt my stress levels rising rapidly (I can’t even write those words without feeling sneers of disapproval – don’t ask why or from who/where – I just do).  I’ve been lucky insofar as I’ve had my Mum staying with us to help with the practical things.

It got to the point that, on moving day, I was sick of hearing my name and having someone “need” to have my input or approval.  I was travelling between the new house and the old, overseeing everything the movers were doing, dealing with signing the agreements, everything.  And in the quiet minutes, being a carer.  And in the tiny cracks of time between that, being a husband – rather, trying to be.  The panic attack I had should have sounded a warning bell but I had to keep going.

We’d been in the house three days when I was involved in a car accident.  It’s in the hands of the insurers now which feels to me a little like it’s sub judice.  Everyone involved was OK and MW wasn’t in the car at the time.  It shook me like hell, and it’s been a grind dealing with insurers, garages, solicitors, the police.  It’s something I could have done without.  I could tell that I was in a bad way, mentally, but no-one can take over from me.

Another blow came the following day.  Our old landlord sent me an e-mail which put me into a spin.  He’s sought to keep the bond we left, giving the most flimsy reasons for keeping it and ensuring that we’d need to fight for it by legal means.  This, along with the fall-out after the car accident was all I could take.  At first, I was just numb.  Working on auto-pilot.  But, at the beginning of last week, I was in a bad way.  Crying all the time.  Worrying about everything.  Scared of everything.  Tired of all the responsibility.

I was thinking things that I’ve thought before and they scared me.  I just wanted to say “make sure that MW is looked after” and disappear.  I didn’t even know what I meant by that, only that I didn’t feel worthy of being around.  I don’t just mean unworthy of being in this place – the new house – at this time.  I mean unworthy of being anywhere.  That I’d made people worry, that I’d disappointed people.  That I’d let everyone down, especially MW.

My Mum was about to go home (to be fair, she’s been here for about two months now) but I had to ask her to stay a little longer.  I suspect she could tell by my behaviour that I was in a bad way.  Fortunately, she agreed.  She’s still here.  I don’t know where I’d be if she wasn’t.

I’m tired.  I’m not sleeping properly or feel like sleeping half way through the day.  I’m still crying but not as much.  And I’m still scared.  Still fearing the phone ringing, the post arriving, wondering where the next setback’s coming from.

Anyhow, this post’s rambling about with no real focus.  Which is pretty much where I’m at right now.  Rambling about trying to keep going as best as I can.  But it’s a struggle.

Still going. I don’t know about strong.

Before I carry on I want to clarify something about this blog.  Apropos of nothing at all other than something that came to mind which burrowed its way in and won’t go.  This is my space to vent – this is my outlet, if you will.  I don’t have a wide circle of people that I can talk to at the drop of a hat about what I’m thinking/feeling, etc., so this is my way of letting some of it out.  If you’re looking for witty, inspirational writing on how caring is a challenge to conquer, to face with a smile and overcome head-on, and how life is a big bag of love and roses then you’ve come to the wrong blog.  I try not to be overly pessimistic but I am realistic.  I’m aware that what appears in this blog is pretty dark, even miserable at times.  I’m not sorry for that.  What’s happening is a struggle and I will reflect that.

I’m feeling a bit stressed at the minute.  Which is to say more so than usual.  I had another panic attack the other week.  Cue thinking I’m having a heart attack; cue frantic call to paramedic then ECG and blood pressure tests; cue calling neighbour to come round to sit with MW if should need to go to hospital; cue feeling utterly ridiculous, hopeless and pathetic, especially when the physical diagnostic tests came back all clear.  I have high self standards.  Those standards tell me that I ought to be able to cope with everything thrown at both of us because, outwardly, I’m the healthier of the two of us.  Even using the word “stressed” makes me feel feeble.  My mind and body tells me that isn’t true.  When I say I’m a “bit stressed” I must admit that I’m more than a “bit” stressed.  I’m stressed to the point of my body giving me messages to rein it in a bit and calm the fuck down.  But it’s easier said (or thought) than done.  When I list it all, I guess I’ve got a fair bit to worry about.  

I’m stressed about MW’s constant deterioration.  She can’t move her legs voluntarily at all now.  The only movement comes with spasm – so her legs have to be manipulated to ensure proper blood flow.  Her arms are losing strength but gaining ever more tremor – sorry, fasciculation (must be accurate).  Independent feeding and drinking are becoming more difficult.  She’s allergic to the morphine patches she’s just started – not to the morphine but to the adhesive patch.  They make her skin blister.  The MS nurse tells me that it’s important to maintain skin integrity because sores and patches of skin inflammation will make her MS symptoms worse.  And then there’s the blood clot.  The injections are nearly at an end but we’re in contact with so many medical people that I’ve asked if they do a health equivalent of frequent flyer miles.  Or at the very least Nectar points.

MW’s father is ill as well.  Her parents live at the other end of the country from us so we can’t see how he is at first hand.  MW hasn’t seen her Dad for almost two years.  Not that they don’t get on – they do.  It’s just that the distance between them and their respective health difficulties has made it pretty much impossible for them to see each other.  Her Dad has a form of leukaemia and he’s been suffering with some symptoms recently which has laid him pretty low.  These may or may not be connected to the leukaemia but her Mum is worried enough to not feel confident enough to come up and see us.  It’s been almost six months since she visited us.  MW’s parents are both in their 70s now so their good health can’t be taken for granted.  The thought is always in the back of her mind that her parents won’t be around forever.  It’s a struggle trying to keep MW from worrying because it will make her MS symptoms worse.  

I’m also worried whether the money we have coming in will stretch far enough.  I know I’m not alone in this.  But MW has developed a penchant for buying clothes that she doesn’t need just because they’re pretty.  Thing is, her memory and mental acuity are worsening and she forgets what she’s bought.  She goes out with a carer a couple of times a week and when she gets back she’s laden with little carrier bags.  None of the items are expensive individually but it all adds up.  It falls to me to ensure that what we have coming in will cover everything going out plus be able to eat.  We don’t have a hedonistic lifestyle, neither of us drink or smoke, but we want to be able to live rather than exist.  Frankly, it’s a struggle.  I’ve asked her repeatedly not to do it.  I’ve got angry.  I’ve pleaded.  I’ve spoken to her rationally because she’s not a child.  Yet she forgets.  I’m having to slowly realise that she’s losing these abilities, and that she is, in a way, becoming more child-like.  I don’t want to treat her like she’s six and give her “pocket money”.  Maybe I’m just waking up to the fact that this is another irreversible change in her personality caused by those damn sheep in her brain (on an MRI scan MS lesions are little white blobs which MW called “sheep”).  Whatever the “cause”, it’s another tiny chink in the relationship.

In short, I feel like I’m being closed in from all sides and struggling to keep my head above water.  I spend a lot of time inside my own head – if that makes any kind of sense – trying to make sense of everything and remain sane throughout.  I try to second guess MW’s MS so its effects are managed as best as possible.  I try to ensure that we both are as comfortable as we can be given the circumstances we’re in.  I feel myself getting angry and frustrated on a more frequent basis.  Somebody used the word “inspirational” to me the other day but I genuinely, genuinely cannot fathom why.  I know it was meant as a compliment, and I am flattered.  But when I look at what’s happening to me and how I’m dealing with everything, that is the last word I would use about me.  I’m just trying to do the best I can and it ain’t easy.

As I wrote in the first paragraph, I know this blog can be a bit grim.  I’m not going to apologise for that.  I don’t spill all this out on Twitter because people would soon get sick of it.  I’d rather get it all out on here – this is my blog, for my own benefit because, without it, I’d be in a much worse place.

Overcoming weakness

What was I saying about thresholds?  I’ve just spoon-fed MW her entire evening meal tonight.  For a 46 year-old adult who would ordinarily be in the prime of her life, that has got to be one of the most ignominious things to have to happen to you.  In addition to the tremor that already exists in MW’s arms, she is now losing strength and movement in them.  Tonight she couldn’t hold a teaspoon so she allowed me to feed her.  I’ve done this before but only for one or two forkfuls/spoonfuls where necessary.  This was the first time I’ve done it for the whole meal.  She’s being stoic about it but I can see in her eyes that it’s upsetting.

In addition, MW told her mother about the loss of function in her arms.  Cue tears and self-blame from her mother for not living nearer – her parents live some distance away.  Upset all round.

There have been better days.