Confession.

Forgive me, Tumblr, for I have sinned. It’s been two months since my last post session. And woe betide any Tumblr that isn’t updated regularly.

I’m not clearing the path for an announcement that I’ve suddenly had a conversion to faith. I haven’t. I’m a quiet atheist. Which is to say, if you have a faith, good for you. I don’t share it but I won’t have a dig at you about it. I don’t believe in spirits, ghosts, fairies, etc. either. Which is a good thing because MW has had more ‘sightings’ of things/beings that has unnerved me a bit. Not in the sense of “what might there be in the house?” but in the sense of “what effect is MS having on her?”. When you’re asked to “stop the dead people from moving me and picking at my sore”, it’s hard to know how to react. I don’t want to make her feel stupid or humiliate her – these things are evidently very real to her. But I can’t help her with what is plainly not there. All I can do is reassure her that she’s not being moved, there’s no-one picking at her sore, and there’s no-one/nothing in the house that has any intent to harm her. So far, she’s believed me. What’s caused her to see these things? I have no idea. She does have a susceptibility to urinary tract infections, and she had one earlier this year. But the frequency and repetitiveness of the sightings can’t be down to just that. My next guess is that they are either side effects of the interstellar array of pain medication she’s taking or there are MS lesions affecting some part of her brain that is responsible for governing her perception of reality. I had a chat with the MS nurse. She reckons that side effects would be a likely explanation. Right now, the benefits of the medication outweigh the risks of the side effects, so we carry on.

Other issues include: an overzealous care company employee who looked to impose a hospital bed on MW. Apparently, the bed’s too high and is causing problems for one of the carers. None of the carers had mentioned this to me, nor had they written about it in the daily log. My insistence that current sleeping arrangements are more than adequate was met with, “I’ll have to take this to social services as a ‘safeguard’ issue”. This sent me into a bit of a spin. The idea that, out of the blue, someone can, de facto, impose a change on your living arrangements with little or no regard for how it would affect you is pretty frustrating. I suggested a compromise but that was refused by said minion. A compromise that was accepted following lengthy consultation with social services and an occupational therapy visit. In future, I’ll be extra careful of the influence of care companies.

Right, I’m off to do my Tumblr penance. Go in peace.

Visions.

Well, the last half an hour has just freaked me the fuck out. MW is currently in bed. I went in to check that she was alright before making a night-time drink. She said, “Don’t think I’m stupid but what would you say if I said I told you I’d been talking to your Dad? And that he’s all around us?”. My Dad’s been dead for ten years now. She grabbed my hand and said that he would have to “show himself”. She continued to talk to thin air for a minute or two. I had no idea what to say or how to react.

MW has NEVER shown any interest in the occult or in mediums. The opposite is true, she was always very sceptical about it. I remember she once went to see a fortune teller as part of a group but her demeanour towards it was very sceptical. I know people change over time but this is the first time she’s behaved like this. It’s really scaring me. Not the subject matter, I don’t suddenly believe she’s developed a ‘gift’. I assume she’s either reacting to her medication, or her lesions are affecting whichever part of her brain is responsible for hallucinations and other related symptoms.

We celebrated our tenth wedding anniversary on Sunday. I look at how she was then, and compare that with how she is today. It’s frightening, and very upsetting. Tonight’s incident is another in a long list of examples of how MS has changed her. I’m scared. I’m scared of losing her completely. I’m scared of the future. And I’m tired of being scared.

Displacement

MW has taken to having a stuffed toy dog lying on the bed next to her. This is a substitute of sorts, for a real dog. She’s wanted a dog for a while but I’m uncertain. Not because I don’t like dogs or anything, quite the opposite. It’s just that I know I’ll be the one that would have to look after a dog. Do the walking, cleaning up, training, etc. I feel selfish writing that. I know that MW loves dogs and has had one before. But that was long before MS. She’s still confined to bed for long periods because of this bastard pressure sore, so everything is sort of on hold anyway until she’s able to be got up and seated in her chair for longer periods. I know I shouldn’t try and psychoanalyse her from a distance but when I see her with this toy dog, I can’t help myself. I’ve known MW for 14 years now and this is new to me. Does she see a dog as a surrogate child? We don’t have a family, and I’d understand how a pet would act as that surrogate, no matter how clichéd that seems. Or does she feel starved of affection? Is it something I’m doing wrong? I try to ensure that I do show her affection because, after all, she is still my wife. Her having MS is not her doing and I do love her, even if our relationship stretches the definition of a typical husband/wife marriage to its very limit.

There are things I don’t even put in the blog because they’re too personal but I will say that this disease has robbed us of almost every ingredient that you’d expect to find in a marriage. I’d expand on what’s been lost and how I feel about it but that’s not what this post is about. Maybe I’m not ready to write about some things just yet.

My point is that seeing MW with this dog is a shock. She’s never been one for large amounts of cuddly toys. When we met, she even described herself as being a bit of a cold fish. This latest example of change in her is the complete antithesis of the woman I met and married. It feels like she’s undergoing (or undergone) an infantilisation of sorts. I feel more and more like a parent than I am a husband. Yet, my immediate response to seeing this change is guilt. Am I responsible for her behaviour through the way I’ve acted and reacted to all the challenges her MS has presented? Could I/should I have acted differently as a carer? Would this change have happened anyway as a result of the increased lesions on her brain? She already shows symptoms of altered cognitive and memory states, including hallucinations, so it wouldn’t be beyond the realms of possibility. I don’t treat her like a child. One or two of the carers do occasionally and it grates on me because the MW I know, the MW I married, would have *hated* that. However, she seems to tolerate it – no, more than tolerate, she seems to enjoy it. I don’t say anything because, if she does enjoy it, who am I to jump in and berate them for it? I keep expecting the old MW to pull them up on it. But she doesn’t.

I know I get wound up by the worry of all the things that have happened to her. I can’t help but show that by my reactions to things like her choking, or when she sleeps so heavily, it takes some effort to wake her up. I keep saying this but I am doing my best. I haven’t got a manual to follow or anything. I keep telling myself that the dog is a child surrogate. But only because that stops me from going into a spiral of self reprimand alternated with guilt. It’s a valid enough reason and I can buy it. Hell, I can even share the feeling.

None of this is made any easier by the news I received over the last week of two MS sufferers I knew – rather, one I spoke to on Twitter, the other I knew of through his wife and carer. Both of them passed away during the latter end of 2014, one on Christmas Eve – both of them shocks. I’ve not told MW about them because of her being around the same age as they were. She’s already concerned about her age and what MS has done to her by this age. I don’t want to add to that by giving her this news. Besides, she didn’t really know them, only through things I’d said. Meanwhile, I see any change in her as being something else to mourn. I try harder than anything to keep it hidden but I can’t help but be scared of what will happen next. Am I looking at a finite amount of time with her? Because I have no idea how to start to cope with it if it’s true. And I don’t think a dog would make it easier.

The blues.

I keep saying that this account is a means for me to occasionally rid my head of all the shite that infests it. But what if the shite in my head isn’t really coherent? Or just plain fucking miserable? Do I self censor? Keep quiet? Or just say ‘fuck it’ and let go, come what may?

I’ve spent most of this past weekend either in bits or moping. It’s hit me that MW is now fecally incontinent. In reality, I’ve known this for a few months but I figured that instances of it were just anomalies that could be explained and it would all right itself in time. No. They weren’t. It won’t. There have also been moments where MW has displayed symptoms that I imagine have parallels with Alzheimer’s disease. An insistence that something exists where it doesn’t. A memory that seems vivid but has no basis in reality. Disagreements follow. Tears. Reassurances. More tears.

Imagine a grieving process that is like death by a thousand cuts. This is how I feel. Like the life I once had, and the life I thought would be a given, is being taken away very slowly, one cut at a time. That MW is being taken away one piece at a time. And it hurts like fuck. There’s always something new/different to grieve and I don’t know how to deal with it. I wouldn’t know where to start, or if I have the right to ask anyone to listen to me try. Would I if my circumstances were reversed with someone else? I don’t know. I like to think so but we all would like to think so. The net result is isolation. Loneliness.

“Are you alright?”

“Well, it’s like this… [opens hitherto well-barriered floodgates of emotions and experiences. Watches enquirer’s expression alter irrevocably.] erm…so, anyway, how are you?”

It’s like a very long blues song. And that’s a lot to shove on to someone. I don’t know if I can, or should, do it.

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.

Fuck Friday.

#FuckFriday

This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post). It’s my description of today. Because today can get fucked. It’s been a giant, festering turd of a day.

It started at 0645 with MW wanting to go to the toilet. So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet. Cue alarm from the vac machine saying there’s a leak in the vacuum – meaning the dressing has lifted. Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other. The alarm eventually stopped. I got her cleaned up, got *me* cleaned up, and took her back to bed. I managed to get a bit more sleep till the carer arrived.

The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily. They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working. There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.

These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.

The day went sideways about 1230. The GP rang. MW had bloods taken yesterday and this was the follow-up call now the results are in. MW is anaemic. Seriously anaemic. Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets. He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back. It wasn’t a lot of information but enough to start alarm bells ringing. MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on. Surely lightning couldn’t strike twice, could it?

When the GP rang again, his first questions were about MW’s MS, How long had she had it? Is she wheelchair bound? Etc. He was particularly interested in her bowel movements. He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today. Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer. “Is there any blood in her stool? Are you happy for her to have the tests done?” I’m not kidding, I nearly shit myself. Although I deal with affairs on MW’s behalf, I don’t make decisions for her. Especially decisions pertaining to her medical care. I told the GP that MW can, should, and does make those decisions herself. The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests. He’d leave it with me and a nurse would call for the blood.

After the call, I was left not knowing what the hell was going on. This GP had rung twice and left a couple of grenades behind. I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done. After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation. As if we’d not had enough to deal with and overcome. I was scared. I won’t gloss over it. I was very, very scared. What would the spectre of cancer mean for MW? How would she cope if it were confirmed? It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there. Joining all the other neon-lit elephants in the room.

I lost it. I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach. I didn’t know who to turn to for reassurance. I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes. I tried the MS specialist nurse – she’s on annual leave. I rang the MS Society helpline. A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today. She advised me to get back in touch with the GP. First, for reassurance. Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack. It was the final straw that broke my system.

The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea. She could see I was struggling and stayed with MW to keep her occupied. MW was relatively calm, although she’d later admit to being confused by the whole affair. I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again. He agreed to see me later in the afternoon. In the meantime, I tried to calm down enough to help the carer to shower MW. I spent over an hour shaking and crying.

The GP had more information at the appointment. He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel. This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently. The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore. They’ve agreed that MW will go into hospital and have a CT scan to start with. They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests. To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated. GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.

So, the spectre of cancer looms a little less large now. I understand that GPs are duty-bound to be honest in their dealings with patients. I know that our GPs have a large workload and might handle things differently if their workload was less. I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia. The potential of cancer investigations in top of that was something I couldn’t deal with. I’m loathe to criticise medical staff without good cause, just to take frustration out on them. That’s not fair. This blog post is too long now for me to go into specifics but I think this could’ve been handled better. For MW. For me.

I try, as far as I can, to hold it together for MW. I not only have to deal with the logistics of medical service provision – sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time – but I also have to explain to MW what’s going on. I need to comfort her too because she gets scared, gets confused. I can’t do any of that if I’m in pieces. I’m not in the same state as I was this afternoon, nor do I want to be. Because today’s been bad enough. Fuck it.

What’s happening. (Warning: might be a bit graphic)

Finally, the vac dressing has been applied, or Negative Pressure Wound Therapy, to give it its proper title. The picture above shows the pump which applies the vacuum via a tube attached to the wound. The idea is to draw out all of the dead tissue that’s been hanging around the sore for a long time. It’ll also draw the clean, healthy tissue to the surface, effectively closing the hole around the dressing over time. At least, that’s how I understand the information I’ve seen about it.

MW is still confined to bed rest. That’s six weeks so far and several weeks to go before she can start to put prolonged pressure on the area. The downside of all the bed rest is the increased risk of other pressure sores. You try and get rid of one problem and others creep up to test us. There are new sores/skin issues on the inside of both knees, her left foot (which occurred prior to bed rest), a blister on her upper buttock where the vac dressing tube has irritated the skin, and her right ear where she has to lie on that side to alleviate the pressure from the main sore. MW’s got that many dressings in various places she looks like a patchwork quilt.

This whole episode is taking its toll on MW. She’s considerably quieter recently. I don’t know if this is as a result of having to spend so long in bed on her own or not. I do my best to keep her spirits up. As do the carers who help us every day. (The carers who help us now….I can’t think of an adequate superlative to describe them. They’ve been exceptional.) MW’s also tired all of the time. I know fatigue is a well-known symptom of MS, and that MW has more than her fair share of it. But this seems to have increased even more recently. I don’t know if it’s a side effect of the new dressing, of the pressure sore (any skin issue can exacerbate MS symptoms. I know, it baffles me too), or if it’s a result of having to stay in bed for such a large part of each day. Maybe sleep begets sleep, if that makes any kind of sense. I’ve got to be honest and say that things make less and less sense to me.

I’m also beginning to realise that MW can’t look after herself in the same way as she was once able to do. She’s always been insistent on washing as much of herself as she could reach (which wasn’t much but independence is important). I was happy to trust that she’d say when even that independence was no longer possible. I guess she’s thought that she was still able to clean herself but I’ve discovered that’s not the case. From a practical point of view, it’s not much of an issue. It just means that I, and the carers, will have a little more to do on a morning. From an independence perspective, it’s a considerable loss.

MW can’t manage her bowel as she once could. She’s going and doesn’t know she’s going (without getting too graphic). It’s very solid so it’s easy to clean up but hard to keep away from the pressure sore dressing. I suspect a call to the MS specialist nurse is in order. It’s a balancing act between ensuring MW’s bowel empties and not having it go everywhere.

Me? I’m tired. Actually, that’s an understatement. I’m exhausted. I could do with about a week’s sleep but I’m not going to get it anytime soon. When this sore’s improved, I’ll have to have a break. Maybe then I can start to think of the long term effects of these latest deteriorations in MW’s condition and independence. Anyhow, that’s the situation here at the minute.

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.