Burbling blind

Friday night/Saturday morning – 00:35.

I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical – no, actually, I’m extremely self-critical – and this extends to writing posts. I try not to depress the shit out of you, gentle reader – or me, for that matter. I also try and make sure I’ve got something vaguely interesting to write about before putting finger to keyboard. I haven’t got that vaguely-interesting-something tonight, that “hook” to hang the rest of the post on.

It’s not for lack of anything in the news. Jack Osbourne has recently been diagnosed with MS, presumably Relapsing Remitting MS. I’ve got something swirling about in my head about this but I just can’t get it out. I wish him and his family well for the future. It’s also the end of Carers’ Week in the UK. I’ve not followed enough of the goings-on, even locally, to use it as a subject. I can’t even summon the vitriol to wade into Jimmy Carr, tax avoidance schemes and their knock on effect to welfare services. I’m too preoccupied with what’s going on here.

No, it’s just me burbling tonight. Frankly, I’m trying to find something that’ll make me smile. Because this week has been hard. After taking MW to the dentist, it’s come to light that she’s been struggling to clean her teeth for a while now. One of the first things you’re taught as a child is to clean yourself. Brushing your teeth is one of the basic planks of personal hygiene and now I’m going to start to do this for her. Since MW already has to be assisted to shower, this really shouldn’t come a shock. I mean, it’s a natural progression of the difficulties she has. But assisting is one thing, actually taking over doing a thing entirely is another. I’ve noticed a real difference in her upper body strength for some time now. It’s harder to get MW dressed because she can’t move her body as freely as she could even up to about 4/5 months ago. I know she can tell there’s been a change for the worse recently. I don’t know how she’s going to take to having this done for her. I don’t know how *I’M* going to take to doing it. There’s no manual to cleaning someone else’s teeth, is there? Fuck.

The week started pretty crappily too. Last week, MW had a routine eye-test. She’d realised that her eyesight was deteriorating and thought it was something that could be improved by stronger lenses in her glasses. So, off to the opticians. Half an hour later we’d been told that the optic nerve in her left eye is very, very pale. Her eyesight in that eye has deteriorated to 6/120 when aided with lenses. This scoring puts her at legally blind in that eye (at least, according to information I’ve looked at online). The sight in her right eye is compromised too but not to the same extent. The optician’s advice was to contact the specialist MS nurse with a view to being referred to an ophthalmologist for further tests and remedial action. I rang the MS nurse on Monday. Sadly, she told us that there’d be no referral. The optician’s default setting when they can’t remedy eyesight issues is to refer the client to their GP for further action. In MW’s case, the paleness of the optic nerve is due to nerve damage cause by MS. The damage is untreatable and irreparable. The only thing to do is note the optician’s findings. Double fuck.

So, after all this news, what do I do? Spend tonight looking at Richard Pryor documentaries on YouTube. Breaking my cardinal rule of not Googling this shit because it will fuck with your head. I’ve spent most of tonight crying. Probably because the crap news has kept coming this week and seeing Richard Pryor struggling at the end of his life in a wheelchair made me think of the future. And all I could see was bleak. Another cardinal rule broken. Double teary fuck with bells on.

Jack Osbourne tweeted to the news organisations which have started printing all kinds of horror stories in the wake of his diagnosis. His tweet reads, “Dear journalists…will you please stop sensationalizing my situation to sell ur poorly written magazines and papers. I AM NOT DYING!”. In his case, he’s right – even though worst-case scenarios make for much better stories and paper sales – Jack Osbourne is not dying with MS. But fuck me when MS is progressive, it’s hard to look at the disease and not see darkness.

Dear blog, Happy 1st Birthday!

I’ve just realised (at 21:09 BST) that this little window on my personal world is exactly a year old today. In that first year I’ve made some new friends, met some lovely people, and had some of the most kind messages of support and encouragement.

I’d do individual thanks but there are lots of people to mention and, a) I’d be frightened to leave anyone out and, b) this post would get all Gwyneth Paltrow and no-one wants that.

I will say thank you to anyone and everyone who’s taken the time to read anything on here. It does mean a lot.

I’m not done blogging yet though…..

End of an era…

Finding a carer that’s good to work with is difficult. Not that there aren’t good careworkers out there – there are loads of them. But it comes down to personality in the end. Sadly, Maureen, the carer that’s worked with MW and me has decided to move on to pastures new. I’m not going to say that it’s all been smiles and good times with Maureen. Like all relationships, both personal and professional, there have been some arguments and spats, but we’ve worked through them.

I’ve already written about Maureen and how she’s helped us every morning. She’ll probably not see this but I hope she’s happy in whatever she moves on to. We’ll still see her occasionally – we may have lost a good carer but we’ve gained a friend, which is far more important!!

On a similar subject, a friend of mine on Twitter is delivering a eulogy at the funeral of a woman she cared for until her recent passing. To have been given this honour speaks of the close relationship she had with the person she cared for. I suspect it will be difficult but I hope there are more smiles than tears.

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?

Sorry. And thank you.

Sorry for not writing anything recently. It’s not that nothing’s happened or that there’s been a miraculous upturn in fortune. I’ve just been busy doing the usual and trying to have some semblance of a social life via Twitter, so the blog’s been put on the back-burner.

However, I’ve received a couple of messages recently from people who tell me that they’ve been moved to tears after reading my posts. This has made me feel a little guilty. I’ve never set out to upset anyone with this blog. But I’m not naïve. I realise that a lot of the information I’ve put on here is very sensitive to me and could possibly provoke strong feelings in others. I get the same strong feelings when I re-read the posts and they’re also partly the reason why there haven’t been any posts for a wee while. Writing about my experiences can be a little upsetting. I’m sorry if I’ve upset anyone else. Can we hug?

I’d also to say thank you to anyone and everyone who reads this. It’s very humbling to think that people take the time and trouble to read my posts. I can’t promise that I’ll blog frequently but I aim to continue the posts from time to time.

From zimmer, to glimmer, to…?

“Will I ever walk again?”

“I don’t know.”, I said, with an expression somewhere between pain and pity.

Now, we both know the answer to this question. No. MW won’t walk again.

Three things tell me that.

1. MW hasn’t been able to walk for the best part of two years.

2. MW cannot stand, cannot bear weight on her feet. One of the basic things we take for granted as people.

3. MW has had no feeling in her feet for months, and has trouble moving them independently.

And yet I was compelled to say “I don’t know”. To offer a tiny glimmer of hope despite the glaringly obvious staring at us both. I couldn’t say it. I couldn’t say, “no”, and take that tiny glimmer away for good.

What would you have said?

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.

Help? Who needs it? We do!!!

(Note: from here on in, I will refer to my wife as MW. Just because it’s easier for me to write here using this abbreviation. I’m not going to give you her name because she doesn’t write here and I feel it’s unfair. You’ll have to make do with MW. Remember this, I’ll be testing you in the future)

OK, I’ve sufficiently recovered my equilibrium to write about what’s angered me over the past few days. The care company that helps MW called to perform an assessment last week. I was honest with the assessor in MW’s needs and told her of the difficulties I face in getting her ready for the day, taking her to the toilet at least 10 times a day, and getting her into bed. The assessor made lots of sympathetic noises and said lots of supportive things while filling in what seemed to be a Domesday Book of a form.

Imagine my surprise when, on Saturday, the care-worker arrived with a fresh text message and a confused expression on her face. She’s been told that under no circumstances is she (or any other care-worker) to assist me in lifting MW at all. This is a bit of a blow. I’m pretty pissed off but a call to my social worker confirms that the care-workers aren’t supposed to help me lift MW. It’s for their health and safety…. mine is something else entirely.

The 45mins/hour in a morning when I get assistance with “lifts” and showering, etc is a boon. Now, most of this assistance is taken away. Now, the care-worker will only make breakfast, shower MW, and help put on continence pants and dressing-gown. I say “only” – this is, of course, some assistance – but the main help ( and therefore the main break ) I was getting was in lifting MW out of bed and around the house until she was in her electric reclining chair in the front room. The social worker asked if care was given to MW while she was in bed. So, in their estimation, it has come to this – being bed bound. Well, screw that. I may rail against Multiple Sclerosis, I may utterly loathe and despise the circumstances that life has provided to the point where I want to flee screaming; but I’ll bloody well get her out of bed. We feel – OK, I feel – very let down.

Further conversations with social worker brings much talk of hoping for movement on re-housing but nothing else in terms of actual practical help. The subject of a short break is again raised but that’s been covered elsewhere on this blog. Can anyone tell me the point of a social services that cares more for the welfare of those tasked to help us than the people they’re trying to help?

It’s NOT better to burn out…

It’s been a hell of a week. Some friends came to visit last weekend so I took them back to the airport on Monday. I was very sad to see them go – tears at departure and all that. Then straight home to get my wife dressed and ready for her recreation time. It’s becoming increasingly difficult to lift her as her weight is deadweight because she can’t feel her legs, let alone move or use them. Still no prospect of a hoist on the horizon.

Woke up on Tuesday with a pain in my chest. A visit to the doctor and I’m diagnosed as having a muscle strain. It makes my “lifts” painful to do. And I’m ITCHING to get back to my exercises.

Yesterday, I’d pretty much reached tether’s end. I was having another secret weep in the kitchen and I was all set for opening the door, running away and not looking back. I was tired, fed up, and in desperate need of a break. A proper break – proper respite. Not a couple of hours here and there. A rest.

I had an hour with a counsellor yesterday afternoon ( a coincidental appointment ) and felt a little more relaxed at the end of it. I’ve also been able to chat with friends on Twitter, whose help and support has been invaluable.

I am now talking to my wife about the prospect of her taking some time in residential respite. And it can’t come a moment too soon.

A small update.

It feels like ages since my last post. Sorry about the dust in the corners….

I’ve no long diatribe for you. I’ve just been busy. My wife is due to get a supra-pubic catheter. This is because her bladder is contracting when it shouldn’t, and not contracting when it should. The consultant has said that as this could lead to kidney problems, the best course of action is to address it with an “always-open” catheter. A permanent one. So, the wait begins for an operation date – probably sometime in the next two months. I accept that this will help alleviate a risk ( it won’t necessarily make things easier ) but I can’t help having the nagging feeling that it’s more evidence that this disease is having an increasingly dehumanising effect.

A couple of years ago, I’d have been angrier at this than I am. Now, whilst worried about the risks of the operation, I’m merely resigned to this latest development. Maybe it’s the medication that’s helping me keep my anger under wraps. Maybe, it’s a sign of how I now view things. Either way, my over-riding feeling is one of sadness.