It’s a 24 hour thing.

This caring malarkey is a 24 hour thing, and the last 24 hours have been…challenging.

19:15 – I notice MW’s catheter isn’t draining, which is not unusual but it’s happened three times this month, which *is* unusual – so, I start doing what I can to help. By this I mean I changed the bag to get rid of any blockages there, rolled MW a couple of times to see if a positional change would make a difference, and gave the tube a gentle wiggle at its entry point into her abdomen to see if that helped. No change.

20:00 – I ring district nurse (DN) overnight team. They arrive about 15 mins later and try (not that hard, it has to be said) to change the catheter. They can’t do it. MW must go to hospital. As she has this grade 4 pressure sore on her bum, she needs an ambulance to be able to transport her safely – besides, the DNs had left the catheter in but had left it unstable. Apparently, this meant that there could be an eruption at any point, given the right circumstances. Lovely. So, they call a non-emergency ambulance – it’ll be with us “within the hour”.

02:00 – Following three phone calls assuring us we’d not been forgotten, the ambulance arrives. I carry MW off the bed and place her onto the stretcher, and she is taken to hospital.

By 05:10, an on call urology Dr had changed catheter twice (!) and MW had had two bladder scans performed. The catheter had been changed but wasn’t draining. Actually, this isn’t so unusual directly after insertion. I especially didn’t think anything untoward had happened given the time of night and the fact that MW had only had a small amount of liquid to drink. Dr gave the choice of staying until drainage begins or go home and if regular DN notices anything odd, back to hospital. MW says she wants to go home and an ambulance is arranged to bring MW home.

My Mum (who insisted on coming with us to the hospital because she “wouldn’t be able to sleep anyway”) was shattered so I brought her back home then drove back to hospital, ready to wait with MW until the ambulance is ready. When I get back to the room in A&E, MW has changed her mind and just wants to get back home to sleep. I get a nurse to bring a wheelchair. I lift MW off the stretcher onto the chair. While MW’s in my arms, the nurse notices that MW has messed and cleans her up. I get MW into the chair and the nurse takes her to the front of A&E while I get the car. I lift MW off the chair and struggle like hell to get her into the car. Nurse accompanying us to the door asks me “Do you do that every day?” "Erm… yes.“ "Oh my God, I’m filling up here watching you”. I have no idea what else to say. So, I thank her and drive home, doing all the lifts in reverse on arriving home. By now, it’s 0630, and I’m exhausted.

So, we’re at home and, after about 90 mins sleep, the regular DN calls with specialist wound nurse (TVN) for a scheduled visit to look at the sore. There’s still no catheter drainage. I explain to the nurses what happened overnight. I roll MW onto her side so the TVN can inspect the pressure sore and change the dressing and…

WE CAN SEE THE BALLOON END OF THE CATHETER STICKING OUT BETWEEN MW’s LEGS!

(Image from: http//www.registerednursern.com/wp-content/uploads/2008/10/supra-pubic-catheter.jpg)

The hospital Dr has inserted the catheter into the hole in her abdomen, kept pushing until the balloon on the end has come out of MW’s body, between her legs. (I’m sure you don’t need me to be any more graphic than that). The nurses are aghast. One of them had heard of this happening but had never seen it. The other was appalled. Fortunately, they were able to change the catheter properly with minimum fuss, and were kind enough to help me clean MW and the bed after it drained about a litre of liquid straight away.

Each of our gasts are well and truly flabbered at what happened. I am more relieved than angry (and tired) about it all. As of right now (01:06, 29/08), everything is still working well, and we’re all trying to catch up on sleep. I’ve napped through the day and hope to get a good 7-8 hours now.

There’s no 9-5 with being a carer – it’s truly a 24 hours a day job.

The Loneliness of the Long Term Carer

I’ve been storing this subject for a while now. I’ve not written about it because, frankly, it’s embarrassing. And a bit self-absorbed and depressing. It’s strange how coincidences occur to jog you into doing what you’ve put off. So, fuck it, I’m going to write this. Today, I read this blog post on loneliness written by @flendog_ on Twitter. While our circumstances are different, I can definitely relate to her point of being incredibly lonely.

Those of you who follow me on Twitter might have seen this photo.

It’s me sitting at a table with a bottle of water. An innocuous and, let’s face it, dull photo. It was last Friday and I was in a cafe. I cherish those moments I get to do something vaguely ‘normal’. Something I see evidence of other people doing on a regular basis. Having fun. Or, at least, sharing their daily lives with others – be it with family, long-acquainted friends, or people they know only through social media. I see it a lot and I envy it greatly.

What I didn’t tell you was that, shortly after that photo was taken, I made my way home trying desperately to stop myself from crying like a baby. Some bloke walking through a shopping area in floods of tears would’ve been a rare old sight. Probably worthy of some ridicule on some social media. (I might have gone viral. Shit, missed an opportunity, there.) Thing is, that wasn’t the first time that’s happened. And the catalyst for this was an almighty wave of loneliness that hit me hard during the time I’m supposed to have for me. That wave has hit me quite a few times. And each time it leaves me feeling more stupid and hopeless than the last.

Here’s another self-absorbed bit – I don’t have much of a social circle to speak of. I talk to people on Twitter a lot of the time. I’ve said before that without them, I’d be in a bucket. I’ve had several offers of a listening ear from various people on Twitter, and I’m grateful for every single one of them. And your names are noted because I intend to take you up on that offer in the right circumstances. I just would like to actually see people. In the flesh – clothes optional. You know, like a lot of you out there do. I know my circumstances are very unusual and that when you ask me how things are, I feel obliged to be honest with you. And it’s dark. As of yesterday, I’m living with MW *and* my mother – and what 40-something doesn’t want that lifestyle? I’m providing round-the-clock care for MW and seeing my mother through 18 weeks of chemotherapy. These are not light subjects to touch upon. I don’t mind talking about them but this doesn’t mean that my entire oeuvre of conversation is geared around those subjects.

Where my feelings may differ from those of @flendog_’s is that I start to wonder whether people see me for what I do rather than who I am. Am I pigeonholed as just ‘that carer bloke’? Or am I such an arsehole that no-one really enjoys spending time with me? An irrational thought? Perhaps. A self-absorbed one? Most definitely. Right up my own arse. It’s an inescapable feeling, though. And not a pleasant one. It’d be nice to get a hug (or several, I’m not fussy) and be in the photos that people take of smiley people doing sociable stuff. Y’know, Instagrinning.

You might be reading this thinking “what about MW? Doesn’t *she* feel lonely too?”. Yes, she does. All she’s got is me faffing around her all the time, which is fine, to a degree. But we’re not supposed to spend 24 hours a day with each other. For 9 years and counting. The bright point is that she has carers coming in who she likes and enjoys spending time with. It’s not perfect but it’s the best we’ve got.

I haven’t got a clever ending for this post. No bringing it back to the beginning and tying it all off nicely with a quote or a line. Because I haven’t got an answer for it. So, if you see a bloke on his own nursing a coffee or a bottle of water, go and say hello. Maybe offer a hankie.

A fine romance.

Yesterday, Valentine’s Day, MW spent the entire day in bed. Alone. That’s because she’s under enforced bed rest. On orders of a Tissue Viability Nurse – a specialist in wound management – or TVN, for short.

MW’s pressure sore is getting on for three months old now and shows no sign of improving. In fact, it’s worsening. It’s being dressed daily by district nurses and has been assessed twice by the TVN. The next step is to have it vacuum-dressed. Which, I’m told, involves a suction machine taking out dead tissue. I know it’s to help but it’s a grisly thought at best

Up until about a month ago, I’ve been photographing the sore’s development since it began so that MW can see what’s happening. I mean, it is her body, after all. But it’s got to the point now where I can’t even bear to look when the nurses are dressing it. It’s about 50mm deep at its deepest part – or 2" for those of us brought up on a mixture of imperial and metric measurements. When a nurse says it’s nasty, that’s usually a fairly good sign that it’s not a pretty sight. There’s some infection in there too so MW’s taking her second course of antibiotics in a month. No more pictures. I – and we – will just have to take the nurses’ opinion for it.

The sore also affects MW’s MS symptoms. She gets even more tired than usual (if that were possible) and she feels the cold more keenly too. MW is supposed to spend no more than an hour in a chair at a time. Feeding MW her meals takes up pretty much all of that hour.

I’m aware that the dynamic of this blog has changed a little in the last few posts. This only reflects the reality of things over recent months. This is my only real place to moan. I don’t want to do it on Twitter as it gets boring to read. I know that – it gets boring to think without getting it out of me. And woe betide you if you “do Twitter wrong”.

Twitter was full of Valentine’s Day chatter yesterday – some bitter, some sweet. We don’t really go for Valentine’s Day anyway but yesterday really couldn’t have felt more like just a Friday.

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.

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.

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.

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.

Dodging bullets

I’ve got to tell you, last week was pretty scary. I’d noticed MW’s leg to be a little swollen for a couple of weeks – actually, it was much longer than that but they’ve swollen before and was told it was just benign swelling. I must admit to rarely thinking it’s *just* anything considering the severity of MW’s symptoms. So, when the District Nurse called to look at yet another pressure sore, I asked her to check the swelling. “Oooh, it is swollen, isn’t it? It’s about 2cms bigger than the other leg and it’s not hot or anything but when I go to the GP’s surgery later this morning, I’ll chat to her about it. It could be a DVT.”

Fucking hell! A DVT.

In a previous life, I worked in the Civil Service. An environment that loves to abbreviate words and phrases wherever possible – thus giving those phrases an implied importance way beyond their actual significance. I guess the health services do the same for speed in time-critical situations. But a DVT – or Deep Vein Thrombosis to give it its Sunday name – is a pretty frightening prospect and one that belies its otherwise harmless abbreviation. I felt a bit of a chill when she said it. Partly because I knew how serious it could be and partly out of guilt at letting this swelling go unchecked. Truth is, as a carer, I never know when to push the “panic button” or when to let something take its natural course and see what happens. I panic at the slightest change in MW’s symptoms but I can’t go shouting to the nurses or the GP for the smallest thing, can I? That’d be ridiculous. It’s tempting though. I’m no professional at dealing with this and there’s no training to help a carer cope with what gets chucked at them.

So, back to the swelling. The nurse rings from the GP’s surgery later that morning and said that the Dr wanted to see MW later that day. Appointment booked. We turn up and MW gets examined. The swelling is a cause for concern and the GP refers MW as an emergency admission to the DVT clinic at the hospital with a letter explaining her findings during the examination. Half an hour later (as it begins to snow like hell!) we’re at the DVT clinic waiting for a blood test. More examinations and bloods drawn, and an hour or so wait for the results. The possibility of a DVT is still there but they won’t know without a scan. MW is given a clot-busting injection and a scan is booked for the following morning.

Back at hospital for an ultrasound scan. Not easily accomplished given MW’s lack of mobility but we get there. They find a small clot in her calf but it’s not in a deep vein area, and there’s nothing above the knee – which would give greater cause for concern. Dodged a clot-sized bullet. A DVT can travel up the body and can be dangerous if it reaches the lungs. Fatally so. I’m no expert and I ain’t going to Google the damn thing but I’m content with what the Dr said. Actually, the Dr was very soothing when delivering the news to us.

I’d noticed that MW was very, very nervous about it all. I comforted her (well, I think I did) by saying that it’d been caught before anything dangerous occurred, she’d not displayed any of the symptoms that would tell us that the clot had moved, etc, etc. Although I don’t know who I was trying to convince. Her, looking pretty scared at the whole thing? And who could blame her? Or me, who was chewing himself up for not acting sooner. It’s hard work trying to give practical care and emotional support at the same time, while you’re shitting yourself at the responsibility of it all. Fuck knows how MW copes with it all in her head. She’s the one experiencing all these symptoms, and relying on me and others to make sure she’s not at risk. I know she relies on me and trusts me. I guess I’m scared of making a mistake and putting her in danger.

Anyhow, MW’s to have daily injections of a clot-busting drug for 6 weeks. She decided against taking Warfarin orally. That was a scary prospect too far, I guess. Plus she didn’t fancy having regular blood tests at hospital.

It’s made me think that I’m treading a fine line between being alert and being on-edge. There’s no way around it. I’ve just got to learn which to be and when.