A year’s grief: felt and observed

It’s coming up to a year since Trisha died. I still have problems saying those words. They still catch in the throat as they make their way out, and part of my brain wants to force my mouth to change the words to something less direct; to use one of the popular euphemisms we often use to describe someone’s death: ‘since Trisha passed away’ or ‘since I lost her’. Each of those is technically true, but they lack the force of what hit me on 30th October 2017.

To me, grief feels imposing and, at times, insurmountable. It feels like eternity since I was able to put my arms around Trisha and feel her, still alive; since she was able to stimulate my actual senses and not just my memory. Yet, simultaneously, it’s only five minutes since I was in her hospice room, sitting at her bedside and stroking her hair in fits of grieving tears. I have to admit that I’m struggling with it.

The intervening months have been, to employ an overused phrase, a rollercoaster of emotions. Only this rollercoaster constantly shifts its shape. It’s mostly flat – which is me trying to keep busy with day-to-day life and ignore my feelings – but there are undulations of varying height and gradient, and I never have any warning of when I’m going to meet one. The highs are rare, but so very welcome. The lows are more common than I’d like or care to admit and can be pretty deep.

I’ve watched films, in particular those with characters who are widowed, that portray bereavement as a series of heavy sighs and benign smiles at the thought of their loved one. That doesn’t seem to be where I am. I’ve also read a load of books on grief, loss and significant life change. I’m searching for clues in other people’s experiences, so I can find the answer to my own problem.

I’m looking for the ‘right way’ to cope and to find out where I am on the Gantt chart of grief. I haven’t found either. It’s taken me this long to figure out that there is no ‘right way to grieve’, there is no linear progression for grief. Grief is a scribble that has a definite beginning point but has no discernable end. The only variables are the thickness, depth and intensity of the line.

I’m surrounded by Trisha’s things or reminders of her: her pillow, untouched since it came back from the hospice; her bag containing her hair dryer, hairbrushes and other stuff; her ashes, in the front room, are still in the funeral director’s bag they came in, only now they have just-shy-of-12 months’ worth of dust on them. They’ve all assumed sacred relic status.

I’ve started painting again. The thing is that every canvas is inspired by Trisha or by loss. I have photos of her all over the front room, I have a study of her that I painted years ago, there’s another painting with her in it…I’m starting to worry that this isn’t healthy. I think I’ve figured out why: I’m scared that I’ll forget her, or that the good memories that we had together are irretrievably tainted by the later memories where things aren’t so enjoyable. I don’t trust myself not to forget, and I couldn’t forgive myself if I did.

If you’ve read this blog for any length of time, you’ll have seen the post, ‘D-Notice on the D-Word’, about a friend who passed away due to MS. I started thinking then that Trisha’s MS would ultimately be too much for her, but I never thought that I’d be right. Rather, I hoped I’d be wrong. When the MS nurse told me that nothing more could be done, I still wasn’t prepared for the prospect of her dying. No matter what anyone said or demonstrated, seeing Trisha lying lifeless in a hospice bed – albeit free from pain and having received the best care she could have been given – was horrifying.

Trisha’s death has left an enormous hole in my life. She was diagnosed with MS three months after we were married and suffered with it for twelve years until she died. I wasn’t just her husband. I was her carer for the whole time. A role I didn’t apply for; I became Trisha’s carer because she needed help right from the onset of her symptoms. For twelve years, we spent practically all day, every day together, with few breaks. It’s not surprising that I feel lost now she’s gone. As C. S. Lewis wrote of his wife, H., in his book ‘A Grief Observed’: “Her absence is like the sky, spread over everything”.

In short: I miss her. And I’m lonely. This shouldn’t come as a surprise, but I can only now say it out loud.

I’ve recently re-discovered Dire Straits’ ‘Alchemy’ album, a throwback to my teenage years in the 80s when I listened to it on tape. Despite not having listened to it for years, one track now makes me cry when I hear it: Tunnel of Love. Particularly, the lyrics, “…Girl, it looks so pretty to me, like it always did. Like the Spanish City to me, when we were kids…”. It makes me feel like the character singing the song is reminiscing about a time when he and a girlfriend were younger and had everything ahead of them. Thinking of a life that could have been, but never was.

It makes me think of Trisha, every time. Back in the early days of our relationship, we’d look forward to a future together. One that included all the things that many families dream of: kids, own home, dog, stuff like that. All I can do now is think of the life that could have been for Trisha, for us as a couple, but never was. I still have the possibility of a future that Trisha can’t have. And that hurts, too. I feel guilty that I can do it and she can’t. I feel undeserving of the opportunity, and, connected to it, undeserving of help in coping (which, I’ve recently discovered, is why I don’t ask for help). Because I’m still here and she’s not.

Even though a year has gone by, I’m still in the early stages of grief. Maybe, when my most severe reaction is a heavy sigh and a benign smile when remembering good times with Trisha, it’ll feel like eternity since I was distraught at her bedside. And the sky that stretches over everything will be my future. Whilst everything still seems so unfair now, that’s a hope worth holding on to.

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.

The first rule.

The first rule of (Not Being A) Dad Club is that you never talk about (Not Being A) Dad Club.

Did you know it was Father’s Day this weekend? Every shop you see has some Father’s Day angle or other. It’s on TV – adverts and programme spots -, in magazines, newspaper sites, all over social media. It’s everywhere. Tonight, MW said, apropos of not very much, that she’d like a child “even at 50”. Yeah, I’d have liked a family, too. It can’t happen though. And that hurts.

Long time readers here will know that my Dad died before MW was diagnosed with MS (Father’s Day is the same week as his birthday). MW’s Dad died earlier this year and we don’t have children. So, Father’s Day no longer applies in this house. It’s a closed shop – a club that I’m not a member of anymore. And won’t be. I might have written about this before and I might write about it again. Because it crops up every year, and I don’t remember what I’ve written before. And I’m not about to go trawling through to check.

One of the things that parenthood inspires is the thought of the future; that a) your family is continued, and b) gives you reason to look forward, with the assumption that you’ll have your children around you as you get older. That you won’t be alone in your advancing years – not necessarily from a practical perspective but from an emotional one. I can’t lie, the idea of being alone as I get older isn’t one I relish.

By alone, I mean absolutely alone. My mother is nearly 80 (don’t tell her I told you! She doesn’t know this exists.) and, as active as she is, I can’t assume that her health won’t deteriorate. I assume, as nature generally goes, I’ll outlive her. And the odds that MW and I will, at some point, no longer live in the same house seem to be getting shorter and shorter. I don’t begrudge others their happiness with their family. That’s not fair. I just feel wistful. Sad. Scared. Uncertain. A mind full of what if’s. And jealous. A real envy that my life has taken this path and not the one I’d set out for myself in my formative years. When I was actually thinking about the future and not busy obsessing over records or furiously obsessing over photos of Beatrice Dalle and Michelle Pfeiffer.

Actually, this time of obsession was the closest I’ve come to being a Dad. My first girlfriend unexpectedly fell pregnant and decided to have a termination. In the aftermath, I assumed that I’d have a family of my own “at the right time”. Obviously, I had no idea how things would pan out. I lost contact with her years ago but I do know that she went on to have a family of her own. I didn’t know whether to include this piece of information but I’ve written about it before, so I suppose there’s no real reason to leave it out. As I look back, I don’t really know what I’m supposed to feel about this now – shame? bitterness? regret? I don’t know. But it does hurt.

I guess it’s the same jealousy and wistfulness that seems to hit MW when she has a more responsive moment and says that she laments not being a mother. I used to think that Father’s Day card and gift buying was a bit of a bind. Because it coincided with his birthday, I’d have to do twice the spending. Our relationship wasn’t great (to massively understate the case), so I thought the cash could be better used on more exciting – and obsessive – stuff.

I get it now. I get what it’s supposed to be. It’s supposed to be a celebration of being part of a family. And the cards in the shops are a reminder of a club that I’ve joined against my will. (Not Being A) Dad Club. A reminder of a past that’s gone and a future that never will be. But if I have to be a member of this club, I’m bloody well going to talk about it. A bit.

Self esteem

Isn’t it great when your self esteem is so borked – I mean, truly fucked – that you spend your time secretly trying to alter yourself so that your attributes match that list of attributes that others seem to find attractive or likeable or popular? Better looking, more intelligent, more empathetic, better dressed, etc. Wondering why Person X is fawned over while, no matter what you do, you feel like…how is it described in the film ‘The Equalizer’? “When you look at me, what do you see? The answer’s nothing. …like a bottle cap or a piece of lint…just a thing to remove”

Where’s my self esteem? In the toilet, where it belongs.

Maybe that’s the missing attribute.

Where’s your head at?

I made tonight’s evening meal and brought it through to the bedroom, ready to feed MW (she spends 18+ hours a day in bed so, inevitably, some meals are taken in the bedroom). As I walked into the room, I called MW’s name and told that her meal was ready. No reply. I called again, louder. No reply. MW was lying there, eyes closed, unresponsive. No word of a lie, reader, I almost shit. I thought the worst.

MW has MS. A common symptom of MS is fatigue. MW was merely asleep.

But that’s where my head’s at. All the time.

What is a man?

What does it mean to be a man? A pointed question. One that’s likely provoked many an hour of chin-stroking in people far more learned than me. It feels pertinent to me as a carer. Whether other male carers feel the same, I can’t say. I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4. I’m not so narrow-minded as to assume “Ugh, women’s stuff – not for me.”, or that I couldn’t find it interesting, so I didn’t tune out. After a few segments, the programme featured an interview with Jody Day. Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children. I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers. She recalled feeling at odds with people around her, as though she was viewed with a little suspicion. Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”. This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves. 1. I am a carer. 2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have? What’s the male stereotype? Provider? Hunter/gatherer? And do I fulfil that role? While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world. A feeling similar to that described by Ms. Day. I sometimes wonder how people view me because of what I do for MW. I suppose it shouldn’t matter but it does. It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s. The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends. Add the same messages from the media and you have a powerful influence around you. When I was a kid, I assumed this was the stereotype to follow. When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ – especially when I thought about marriage and a family in my future (more on this later). I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer. None whatever. Of course, I do now. I’ve met quite a few, either in person or via Twitter. But prior to 2005, I had no concept of what it entailed to be a man who is a carer. It was a cultural role that never existed for me to learn about. It’s very rarely, if ever, covered in the media. I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained. It’s as though they’ve just beamed down and started caring. I didn’t get beamed down. I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman. I’m not the “provider” that I expected to be. I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine. I am a full-time carer. A role that doesn’t appear to be valued too highly, regardless of gender. I am a male, full-time carer. I have assumed the nurturer/carer role that society appears to deem only suitable to women. Even anthropologists are making inferences to the size of caring males’ testicles!! (Don’t believe everything you read!) When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause. They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might. It’s as though what I do – and by extension, who I am – isn’t “natural”. I might as well be an alien, or a talking animal. So, what does this make me in the eyes of other people?

The second raw nerve was about children. The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance. (That is, they’ve not actively chosen to be child-free.) This is a truth I’ve had to come to terms with myself. I don’t have any children, and I’m not going to have any. Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different. She’s right. But it’s no less hard to come to terms with. Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way. MW and I wanted to have a family. We tried for ages but it didn’t happen. Abortion has been part of both our lives so we assumed that there was no biological issue. We considered IVF. However, at that time, our energy was taken up coping with my Dad’s illness. MW’s symptoms began very soon after Dad died. The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest. Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out. But these conversations never last long. Rationally, I realise that caring for MW is too demanding to consider adoption or fostering. But I feel very much unfulfilled as a man – a propagator of my species. The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents. (MW’s friends have tended to be a bit older than her so the dynamic is a little different) Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction – i.e. having children. I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers. Becoming a carer is a great way to lose friends. Not becoming a parent is another. I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children. It’s as though their entire catalogue of conversation is geared towards their children – either as a conversation starter or as a specialist subject to the exclusion of everything else. Since I don’t have children, it’s assumed I won’t have anything in common with them – which I find strange – so conversation stops. Perhaps I should turn the tables and act awkwardly towards non-carers? No, maybe not.

You might read this and say, “what does it matter what other people think?”. And you would probably make a very valid point. The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against. I also wonder how other people score me against that same ideal. Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man? Maybe it’s all just bollocks.

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.

Epiphanies

It’s been a time of epiphany. Certainly for MW. Progressive MS affects MW in a way whereby we know things are deteriorating, which is to say that we deal with the deteriorations on a day-to-day basis, but don’t really notice how things have worsened. The times we notice the deteriorations are:

when we see someone who we’ve not seen for a while (and is honest enough not to resort to the catch-all “ooh, you look well” in the absence of anything else to say), and

when MW can no longer do something that she could previously do.

Recently, there have been quite a few times like those at number two. I’ve written in previous posts that MW’s legs only move through spasm but I’ve not made a point of highlighting this to her. Due to the fact that I have a fair idea what reaction will follow. Besides, I’d feel a proper shit for ultimately saying, “hey, your legs don’t work now”. No matter how delicately you try to phrase it, you’re pointing out something very distressing.

There was no need for me, or anyone, to point this out to MW this month. She’s taken to trying to move her legs because she now realises that she can’t. And she gets upset and frustrated. Which makes her try harder, which makes her more upset and frustrated when she can’t, which makes her try harder….. And so on, and so on. As I wrote right at the beginning of this blog, I have no idea how it feels to have MS or any other disability. I don’t know how it feels to lose the ability to do those things that most take for granted – walking, eating, writing, etc. I’m not going to try to guess how it feels because I don’t feel it. I can tell you how I feel to witness someone going through it or how I feel dealing with things as a carer. And I can write about how MW reacts to the realisation that these things are taken from her. But I don’t know how MW feels.

When I say she gets “upset and frustrated”, I’m really skimming over a wide range of emotions. First, there was mild amusement. Like when you try any challenge for the first time. This quickly passed into more determination. I could see the effort and determination she was putting into trying to move her legs. I saw that any response on their behalf would have satisfied her – a challenge passed. But the more the cycle continued – re-doubled effort to no avail – the less animated the response was. The more resigned the tone of speech. The quieter the report of realisation.

It’s one thing to try and get a handle on your own feelings. It’s another to try to be a support to someone else when you know that, “it’ll be alright”, are pretty much the most hollow and useless words you’ve got, yet they’re the first that spring to mind. What the hell do I say? What do you want to hear when you’re in that situation? Each epiphany is like a bereavement insofar as they are realisations of something lost. MW deals with it in the best way she can. She’s remarkably stoic. I don’t know if I could deal with it all with the same spirit.

There have been other epiphanies this month. MW’s Dad is pretty ill. He has leukaemia and his blood count has dipped very low recently. He has also been diagnosed with shingles which may or may not have a basis on or connection to his leukaemia. MW hasn’t seen her Dad for two years and she’s getting more concerned that she won’t see him again. He’s in his 70s, which isn’t the oldest parent you’ve heard of, but combine his age with his condition and you can understand her fears. We’re trying to organise a trip to the other end of the country to visit her parents. This feels like positive action so isn’t quite so sombre.

It was my birthday this month and MW got me a card. But when it came to writing it, she couldn’t. Her arm strength and control have now deteriorated to the point where she can’t write legibly. I’d have thought that this would have upset her more than it did. She apologised for having to get help with her message in the card and for her inability to sign it legibly. It didn’t matter to me but she was still very apologetic. Despite her apology, she didn’t seem quite as upset as she does with her legs. I guess dealing with one epiphany at a time is enough to be going on with.

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.

Suffering in silence.

I’m sorry there’s been blog “radio-silence” recently. I’ve not really thought I’ve had anything worthwhile to say about the day-to-day things that are happening here. Not that nothing has happened, it’s just that I get tired of hearing my inner voice bang on about the same old things and I assume you get tired of reading it.

However, I’m moved to write something about mental health. This has come to mind after a few people I speak to on Twitter have received a hard time from mindless bullies about their own mental health conditions. I can’t help but think that Twitter, and life in general, is full of people who would mock others’ difficulties without insight but don’t have the intellectual or emotional capacity to either try and imagine what other people are experiencing or justify their cruel jibes.

But the over-riding catalyst for this post is the tragic death of Gary Speed. Gary was a man who, on the surface, seemed to have had a generous helping of the good things in life. He was a successful professional footballer with a long and distinguished career. After his playing career, he moved into football management and was latterly the manager of the Welsh national side. He had looks that were made for television, he had a family which, by all accounts, loved him dearly, and his amiability and warmth made him a man to be admired by his contemporaries and those who looked up to him. Yet he was found on 27th November 2011, having taken his own life at the age of 42.

I felt his death very deeply despite having never met him. I can’t adequately explain why the death of a stranger has touched me in such a way. Perhaps it’s because he was a similar age to me. Perhaps because I’ve watched him throughout his professional career and, like people who appear on our home television screens, I felt as if I knew him or, at least, was acquainted with him. More likely it’s a combination of these two elements alongside a third. That being that he’s alleged to have suffered from depression.

Following Gary’s death, media speculators jumped to the conclusion that he was depressed. Not an unreasonable assumption given the circumstances surrounding his death. One of the questions asked most frequently in the media is how someone who only hours after appearing on live television seeming to be happy, can be driven to such a point as to not only consider ending his own life but acting on it? I suspect that even with all of the enquiries that will follow, no-one will get an adequate answer. The only person that could shed any light on that would be Gary himself.

I’ve written about the fact that I suffer from depression before. This may be the overwhelming reason why I feel such empathy with Gary Speed – the idea that despite the differences in our lives and lifestyles, he could be me and I could be him. I’m somewhat ashamed to say that I know how it feels for my mood to shift radically from relatively happy to extremely despondent in a short space of time. I’ve thrashed this post around in my head for a good couple of months now; as to whether I should tell you one of the darkest secrets I carry. Because, to me, it’s shameful. I don’t want to write it in a search for sympathy for myself but if I don’t include it here then I’d be doing myself a disservice, and, in a way, to Gary Speed as well. Here goes.

I have, in the past, felt so low as to actually consider that ending my life was the best way out of how I was feeling. I’d even planned a way of doing it that required no equipment. A river ran near my house and, since I couldn’t swim, I thought it would be easy to walk into the river, keep walking and that would be that. See? When you put it into a sentence, it doesn’t seem much, does it? 29 words and a life is gone. That thought bounced about in my head for months. It popped up at work, during the night, on the bus, everywhere. I cried more than I thought was possible when it appeared because I felt I’d not got the courage to go through with it, and not enough courage to carry on living the life I was in. I was a mess.

That was 10 years ago. What stopped me was meeting MW, and leaving a house and relationship which was abusive. Now, I find myself in dark places on a regular basis because of a different trigger. I’m sure I don’t need to spell out what the triggers are now. If you’ve read this blog, I hope you have the intellectual and emotional capacity to try to imagine what they are, and what the consequences might be of dwelling on those triggers for hours on end. The shifts in mood I experience now are still as strong and as sudden as 10 years ago. And it frightens me because, although I still have some scraps of courage to call upon to keep going, I know that there is a breaking point when a person might think that enough is enough.

Which brings me back to my Twitter friends and Gary Speed. Following Gary’s death, distasteful comments were rife on social media sites. My Twitter friends have received the most appalling comments ridiculing their publicly admitted mental health issues. It’s well documented that mental health issues are treated with scepticism or, worse, with disdain and ridicule. I could go on at length about the rights and wrongs of this attitude but that’s for another time. For now, it’s enough for me to say that each of us should think before we blithely make light of such a serious subject. It might save a life.

I’ll finish by paraphrasing a line from a BBC drama, Garrow’s Law, which seemed rather poignant as it was broadcast around the time of Gary Speed’s death. It seems rather appropriate.

Gary Speed has gone. When a good man dies, so much dies with him. Not the goodness, I hope – we have great need of that here. We, who have held him in such respect and regard, should demonstrate it now.