Feeding: a habit

No screed of a post this time, just me emptying my head into the void.

MW and I would usually join our old branch of the MS Society for their Christmas dinner. Not this year. As MW now needs to be fed more often, we’ve decided not to go. We both know that there will be other MS sufferers there who have to be fed but we’ll still not go. It’s one thing to have to have to be spoon-fed at home, it’s another to do it in front of 100-120 other people. It’s about dignity, I guess.

MW also has another pressure sore. What you may not know is that not only is a pressure sore very difficult to heal (a previous one took 5-6 months to fully heal) but skin breaks exacerbate other MS symptoms. We suspect it came from a blister caused by the hoist sling.

It’s odd how such small, innocuous things cause major problems.

File under “Life’s a bitch”

I learned some news about a friend in Italy today. I’ve not heard from her for some time now and I now know why. She lost her husband a few months ago. He’d had progressive MS for some years and she’d cared for him throughout. Now, apparently there are concerns that her eldest son has the same disease.

I can’t begin to understand how she might feel.

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.

Life’s hard.

I’ve not blogged for a while as I’ve been moving house and crashing the car. In the same week. No injuries though and MW wasn’t in the car at the time. Maybe I’ll explain more in a future post – this post is really meant to keep the blog ticking over.

The new house is an adapted bungalow with the facilities MW needs to live day-to-day. It’s very good and we’re just getting to grips with everything it has to offer.

I now live in a community that has a few residents with disabilities. My immediate neighbour is a man who suffered a stroke and is now reliant on his wife to care for him. He uses an electric wheelchair to get about. He can’t be more than 5 years older than me.

Another neighbour, who’s lived here for 10 years or so, had an accident. I say accident, he was pushed off a bridge onto concrete. He broke just about everything and was in a coma for 9 months. He told me that he’s still determined to walk. He, too, uses an electric wheelchair to transport himself around and I’d say he’s younger than me.

There’s no inspirational motive for this post – no ‘moral to this story’. I merely observe that life’s bastard hard on some people.

This is the reality – a post written for Carer’s Week.

I was asked by the organisers of Carers Week 2013 to write a blog post for their site based on the subject of being “Prepared to Care”. I’ve reproduced it here (for no other reason than to keep the blog ticking over).

11 other carers wrote their stories about caring for the same site. Please take the time to go and have a read. Every carer’s experiences are different and it was educational for me to read their accounts of being a carer.

Meanwhile, here’s my post on the financial aspects of being a carer.

Over the 8 years I’ve been caring for my wife, I reckon I’ve lost over £175,000 in income (give or take a promotion or three) and as a couple, the figure reaches well over £250,000. When my wife was diagnosed with MS in 2005, there was no independent financial adviser tempting us with a glossy brochure illustrating the potential losses that disability and caring can bring. No presentation slides and projections for the following 5 to 10 years. In fact, we didn’t even think about finances that much other than ensuring we could scrape enough together to cover our monthly outgoings.

If you can sense a little sarcasm in the above paragraph, you’re right. However, there is a kernel of seriousness in there as well. While there are a number of organisations who will help you with filling in forms for various benefits, none of them can adequately prepare you for not having anything like as much coming in as you might have had prior to taking on the caring role. Will you, the carer, be the ‘breadwinner’ where you might not have had this role before? Can you still ‘work’ while being a carer? The person you care for may have such extensive needs that ‘working’ is no longer possible. To suddenly go from not having to worry about bills to wondering if you’ll be able to get the shopping you need is a hell of a shock.

Why have I put quotation marks around the word “working”? Because, despite many speeches to the contrary from politicians of all flavours, caring isn’t viewed as real work. It’s just something you do that prevents you from doing real “work”, right? I can tell you from my experience that it’s bloody hard graft. Hard graft for little recompense. Carers are a conservative’s dream workforce. And, perhaps controversially, I’m not referring to care-workers. They’re different. While they may not be adequately recompensed for what they do, they’re entitled to minimum wage and health & safety protection. Carers have no employee rights, no health and safety enforcement, and all for £59.75 a week. If you provide care for a bare minimum 37 hours a week, this is £1.61 an hour. Obviously, that hourly rate reduces the more hours you care. I certainly do way more than 37 hours – and way more than the 48 hours specified in the European Working Time Directive. There’s no choice. Caring has to be done because the person you care for needs the help.

When you’re used to an income somewhere around average salary, a drop to Carer’s Allowance is a big shock. I was a Civil Servant. And it wasn’t just a job, it was a career. I’d been promoted a couple of times and was on the list for another. My wife was also ready for promotion. Then MS appeared out of nowhere. We’d spent the three years up to and including 2004 dealing with divorce, court cases, and helping with my Dad who had terminal cancer. 2005 was supposed to be the first year of our future. It turned out to be the first year of MS in our lives. And a pretty vicious, progressive form it is too. We were married in the January and by March the symptoms were really kicking in. Diagnosis came in May. Right from the off, my wife needed help to look after herself. We lived nowhere near family and couldn’t ask friends to do it. It was just us two. So I became her carer. Not a post I’d applied for. Not one she’d advertised. But that was the reality.

I had to stop “working” because I had to provide so much care for her. (The photo attached to this post is from 2006 – her MS has progressed considerably over the last 7 years.) Needless to say, my wife had to give up too. Overnight, our “earning” capacity dropped by over half. You learn pretty quickly to do without your disposable income. You learn, or at least I had to learn very quickly, that every penny has to be accounted for every month. That there’s no “fat” available. Your lifestyle has to change but, with disability and caring, your lifestyle is changed for you. Things like going out become a thing of the past, so you’re saving money there, right? You concentrate on keeping a roof over your head, putting food on the plate, and the home heated and lit. That’s it. The other stuff doesn’t exist any more.

Nothing and no-one can really prepare you for losing so much if disability should enter your life. Caring is the same. Your sense of worth is conditioned by society to be bound up in what your income is. You’re judged on it by the outside world, even if they’ve not met you – a cursory glance at today’s media will tell you that. And you certainly spend many a waking hour judging yourself on it. “Is this all I’m worth now?" Despite the occasional political speech or media article eulogising the work of carers whenever there’s an event like Carer’s Week, you can’t help but measure yourself against the bulk of the stuff you see in the media. Who’s got what? Who’s doing this and that? Where to go on holiday this summer? Etc, etc, etc. The Joneses are now a long way out of sight.

Think about your income. Think about what you might be doing with it over a weekend, over the summer. Then imagine over half of it gone. What would you do? This is the reality for a lot of carers. Would you be prepared to care?

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.

Dogma breeds hate

dogma. noun. A principle or set of principles laid down by an authority as incontrovertibly true.

hate. noun. [as modifier] denoting hostile actions motivated by intense dislike or prejudice.

Given the lessons we have been taught by history, surely it’s unthinkable that any government would marginalise a section of people to such an extent that its citizens would openly attack that section of people in public?

Right? Wrong.

I didn’t know whether to blog this or not but there’s too much in my head for a series of tweets. I’d flood my timeline on just this one subject. This week, I’ve come across the tweets of Thomas Hemingford. Mr Hemingford is a man who cares for his disabled wife. I know nothing more about his personal circumstances than what’s written in his Twitter bio but I have read his tweets with a mixture of emotions and thoughts – incredulity, sadness, anger, empathy. Mr Hemingford was out for a meal with his wife and a friend when he and his wife were subjected to a diatribe from a man who Mr Hemingford describes as a “Tory”. He described this verbal attack on both him and his wife in great detail in his tweets which have since been collated via Storify. I urge you to go and read them. For one individual to behave in such a despicable manner doesn’t shock me as much as it should. I’m a realist and am resigned to admit that there will always be people who will attack disabled people – mostly through ignorance or a desire to disguise their own inadequacies as humans. What shocked me more while reading this is the attitudes of the other diners around them. I won’t relay the entire incident here – you can read that in the links above – but attitudes veered from open support to tacit approval signalled by doing nothing during this ‘15 minute’ attack on a disabled woman and her husband and friends.

I wrote above that the attacker was described as a “Tory”. Mr Hemingford’s tweets go on to say that the attacker said he “supported Cameron” and that the onslaught was like listening to the Daily Mail. I talk to a few people who are affected by disability and there are two things that make them angry. One is the current government, and the other is the Daily Mail. The present UK government is bent on cutting huge swathes from the amount spent on public welfare. On the face of it, the thrust behind these welfare cuts is to weed out fraudulent claims but what’s happening is more of an ideologically driven push against the welfare state. To assist in this aim, the Govt. has sought to cast aspersions on the character of those who take money from the welfare state. One phrase from a ministerial speech reads, “where is the fairness…for the shift-worker, leaving home in the dark hours of the early morning, who looks up at the closed blinds of their next-door neighbour sleeping off a life on benefits?”, whilst the Prime Minister speaks of generations languishing “on the dole and dependency”. This is the official line from politicians. Their right-wing supporters in the press will go even further using words like “lazy” and “scrounger” as part of their anti-welfare rhetoric.

This harassment has been extended to disabled people. [quick aside, the phrase “disabled people” feels a bit awkward to me but I don’t have an alternative at present] Disabled people have been portrayed as being freeloaders off the state in the press, in getting “free” cars at taxpayers’ expense**, being more capable than they’d have you believe. The comments sections of any UK paper or periodical that writes about the economy will include responses on how the disabled are a burden to the taxpayer, regardless of the editorial line of the original article. The New Statesman recently published an article about how media coverage of disability and disabled people has become more negative over the last decade and more. It makes interesting but very frustrating reading. Particularly as the coverage seems to have made some people feel “empowered” to openly harangue the disabled, with the relentless stream of invective from parts of the media shaping their opinion. It’s in the papers so it must be true, right?

As MW’s carer, I’m fortunate in that I’ve never witnessed any attack on her. And she’s not reported anything happening whilst she’s been out with anyone else. That’s not to say I’m not paranoid about it. Whenever we’re out I’m always watching the reactions of others towards MW, and us both. On the whole, people are understanding and kind. I have seen some facial expressions which might have belied a less neighbourly attitude but nothing has been said. And certainly nothing on the scale of that suffered by Mr Hemingford and his wife. From his tweets, both he and the friend that accompanied them displayed enormous dignity during and after this attack. I cannot say that I would do the same. I’d rather not have to find out. I’m sure the Hemingfords would have wanted to avoid it too.

I call what happened to Mr & Mrs Hemingford “an attack” and the person who perpetrated it “an attacker” because that exactly what it and he were. They’re as offensive as any other assault on an individual of a discriminatory nature – just because there’s not yet a crime of disability hate doesn’t mean it’s any less of an injustice. If we were discussing a similar attack of a racist or homophobic nature, for example, the attacker would have been dealt with far more harshly by those around him. Since no-one else (bar their friend) made any attempt to defend the Hemingfords, I can only surmise that discrimination against disabled people is acceptable to a significant section of society. That this individual seemed to assume he had implicit support for his views, and his attack, from both the popular press and from the Government of the day makes it more revolting still.

History teaches us that economic difficulty has been a catalyst for authority to behave in an abhorrent manner towards minorities and weaker groups within society for its own end – with appalling results. George Santayana was right, “Those who cannot remember the past are condemned to repeat it”.

We have learned nothing.

** From the Daily Mail – http://www.dailymail.co.uk/news/article-2005576/BMWs-thousands-friends-relatives-disabled-use-luxury-Motability-cars.html – sorry, I won’t link directly to the Daily Mail.

mostly okay: Everyone’s problems are important to them

mostlyokay:

When I was first diagnosed with multiple sclerosis, I would get annoyed and bitter when people would talk about the things that bothered them. I would feel it was grossly unfair that I was worrying about being able to walk, or being able to taste food, or being able to function without puking or…

This rings very true…

mostly okay: Everyone’s problems are important to them

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.