Fear and self-loathing in the North.

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

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

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

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

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

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

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

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

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

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

Still going. I don’t know about strong.

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

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

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

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

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

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

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

Caring – the never-ending shift.

I had a conversation with another carer recently. This conversation took place on a Friday night but it only really began after we’d wished each other a good weekend. And we both recognised the truth that, although the weekend was about to begin, there would be no distinction between a weekday and the forthcoming so-called days off.

This is something I’ve only acknowledged to myself over the past few weeks. When other people are looking forward to a couple of days relaxation away from work, I just feel flat. Simply because there is no line between Friday evening and Saturday. There is no end of shift or regular day off. I never really know what to say when people wish me a good weekend. I’ll reciprocate the sentiment, of course, because I know that weekends are important to people for all kinds of reasons – time off work, time to see family, and so on. But for me, and the other carer I was talking to, each weekend is very much like every other day – and that includes birthdays, Christmas, etc. That’s because the symptoms MW has are constant. She needs to be got out of bed, washed, dressed, have food made for her, have her catheter emptied, be taken to the toilet to defecate – the list goes on. MS doesn’t take a day off for her.

This realisation was reinforced today by news of a poll carried out by the Carers Trust which says that 60% of carers feel isolated, suffer from depression, are physically exhausted and have financial problems. The story’s case study featured Norman Phillips, a man who had to give up his career to care for his wife who suffers with MS. Norman said that he’d pushed himself to the point where he became depressed, injured his back through moving his wife, and ended up in a cardiac unit after collapsing. He was exhausted – his shift never ended.

The Carers Trust poll seeks to highlight to Government that the UK’s 6m unpaid carers are in need of more support in their never-ending shift. I wonder if they’ll listen?