Sunday update 23/09

It’s still Sunday so this is not late.

This week I have mainly been consuming media. Which makes it about the same as every other week, come to think of it. I finished listening to the audiobook of High Rise by JG Ballard which will definitely be getting a blog post. I finally got round to watching the first Kingsman movie, which might also be getting a blog post. I have been playing a lot of Destiny 2 which will, again, be getting its own blog post.

I also got out of the house. I went all the way to Edinburgh for a milkshake. Which might seem an odd choice given that I’m lactose intolerant but in my defense it had rum in it and I was consuming it in the presence of a friend. That friend gave me a birthday gift, a copy of Art Matters by Neil Gaiman, illustrated by Chris Riddell. And a reminder that at least three people care if I finish my current novel.

Yes it was my birthday this week. I am a year older and supposedly a year wiser. Not that I’ve ever claimed to be wise. I’d settle for being slightly less foolish but I am doubtful that it applies.

My mother continues to recover from her injuries. Regular readers will remember that my mother fell over her front steps and broke both arms. She broke her left forearm and wrist and her right shoulder. She already had an operation to pin her left arm back together. She’s recovering well from the first surgery.

The doctors took much longer to decide what to do about the other arm because she’d broken the top of the humerus bone, she has osteoporosis and they thought she might need a shoulder replacement. She had the shoulder replacement op this week and the break turned out to be worse than they thought. The top of the bone was shattered and she needed a different kind of replacement than they’d been expecting. She is recovering well from this new operation but it’s going to be a while before she’s back to full health and she’s going to need additional support.

It’s frustrating that there’s very little I can do to help. She can’t move back into her own home until her shoulder has healed. She can’t stay with me because my house is no more suitable than her own. It’s the same problem with the rest of the family but at least they can help to adapt her house or clear it for sale so she can move somewhere more suitable. I’m just stuck here too far away to help and too broke and disabled to travel there regularly. All I can do is maybe crochet her some ponchos and that doesn’t seem like enough.

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A delayed update

Two weeks I managed, two weeks before I missed one. Pathetic.

This update is late because my Mother fell down last week and broke both arms. We don’t do things by halves in my family. We either survive unscathed or we need to be literally pinned back together. She’s going to be fine but I’ve had to travel back up north to do my bit to help out. She’s doing remarkably well for a woman in her seventies with multiple breaks but it’s still going to be a long road to full recovery.

It’s funny. I’ve done loads of stuff in the last week but I really can’t bring any of it to mind. It’s hard to think about anything else. I keep coming back to the thought that she’s so lucky to live in the era of modern medicine and so am I. It’s possible that she will make a full recovery and go on for years as a cyborg grandmother. Just 20 years ago we wouldn’t have been contemplating a full recovery. 50 years ago she’d have been lucky to survive. 100 years ago she would have had no chance. And if she’d fallen just slightly differently my brothers and I would be arranging a funeral rather than researching shoulder replacement surgery and trying to sort out a handrail for her front steps.

We’re also lucky that we live in a country with socialised healthcare. My mother will not have to pay a penny for her hospital stay no matter how long it is. The aim of her care will be to get her back home in the best of health so she can get back to being a grandmother. No one in the hospital will be looking for excuses to charge for anything.

Stay safe and healthy out there/

The pain difference.

I’ve been thinking this week about pain. For most people pain is an alarm signal from their body. It exists to bring attention to something gone wrong or as a warning to not do that thing again.

For those of us with chronic pain conditions that signal can be a constant background noise. When an alarm sounds constantly it becomes stripped of its meaning. It doesn’t stop being irritating but it does get downgraded from a stab of panic, and the accompanying burst of adrenaline, to a dull, grating, near-constant anxiety.

For the most part it’s not pain that stops me from doing things. Almost everything I do is painful. Some days are more painful than others and some kinds of pain are more tiring or distressing than others but that’s not the problem. It’s the mental strain of dealing with the pain that holds me back.

And for most people with a chronic pain condition there’s also the lying. Or perhaps I should call it acting or maybe pretending. There’s usually no point in telling people how much pain we’re in. They can’t do much to relive it and most of them don’t really care. It’s impossible to prove that we’re in that much pain so it’s easier for them to believe that we’re exaggerating.

There’s an underlying assumption that comes with civilisation that all problems are soluble. That’s why so many people want to believe that ‘Big Pharma’ is covering up a cure for cancer and that most unemployed people could find work if they just had the gumption. It’s so easy to fall into the trap of believing that we are the masters of our fate. People like me are proof that bad stuff can happen at any time and for no reason.

Most of us cover our pain up. We don’t talk about it. We minimise it, downplay it and lie about it if we have to. Sometimes we do that when people could help. Sometimes the pain is less painful than watching someone else feel bad about the pain. And there’s always the fear that if you’re honest about the pain that you’ll drive people away. Either because they don’t want you to be dependant on them or because they can’t bear to watch you suffer.

Well I think I’ve depressed everyone enough for one day. You may now go back to whatever you were doing before I distracted you. But if you feel like buying me a coffee to cheer me up you can visit the Ko-Fi website to do it.

Once again my body betrays me

Yes it’s a very dramatic title. Unfortunately it’s also true.

I am typing this very slowly because there is something horribly wrong with my right thumb. Yes I am right handed. How did you ever guess?

My thumb is swollen, itchy and sore. It won’t bend properly and it looks like the knuckle has somehow slipped round the side of it. It’s incredibly distracting and it means that I can’t do any of the things I normally do to fill the day. No computer games, no crochet, chores are even harder than usual and typing anything takes ages.

Yes I have sought medical attention. The current working hypothesis is that there’s an infection under the skin and pressing on the joint. I’m back on antibiotics. If they don’t work by Friday there will be blood tests. It might turn out to be gout. Because my body never met an embarrassing and poorly understood health problem that it didn’t want to try out.

Which is all very annoying because I should be working on the novel I want to pitch for Blood Scotland. Or the pitch. And I’m not. Because just typing this little bit has fucked my right hand up even more.

Writing Fat Women

Recently on Twitter much fun was had with the idea of women writing ourselves as a male author would. I couldn’t join in because I’m a disabled fat middle aged women and that means I’m invisible to most male authors. And actually a lot of female authors. And when they do write us it’s as comic relief.

I did get to join in with the “write yourself as you would write you” challenge but that left me wondering why I write so few fat characters. I think the truth is that I don’t trust myself to write fat characters. I’m worried that my own body image issues will creep through and I don’t want to put any more fatphobia in the world.

Perhaps I’m also subconsciously feeling like I’m the wrong person to write that kind of acceptance and diversity. I shouldn’t write positively about fat women because I’m a fat woman so it doesn’t count. But if I don’t do it then who will? There’s not a lot of skinny people queueing up to write warmly about fat people. Able bodied people tend not to write about the disabled, particularly not those with chronic pain. And neurotypical people are really bad at writing neurodiverse characters.

But then there’s a part of me that resists that. Don’t I get to write my fantasies of a life without pain, a life of full mobility, a life where I don’t have to spend every waking moment justifying the space I take up? I deal with that shit all day every day and now I have to write about it too? How is that fair?

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If you’re the kind of masochist that enjoyed reading this rant why not buy me a coffee.

Diet and spoons

This week I lost the same 200g that I gained last week and lost the week before. I’m not complaining because I’ve had to step back from the diet plan I was following due to the ‘Beast from the East’ disrupting food deliveries.*

That’s not what I’m going to focus on today. I’m feeling a lot more thoughtful about how being a Spoonie ( a person with a chronic health problem, see here for an explanation of Spoon Theory) affects attempts to eat healthily.

You’d think that having a chronic health problem would make it more important that I stick to some kind of healthy eating plan and you’d be right. But you’d also be wrong because for us Spoonies everything has to be balanced. Any spoons I spend on meal planning are spoons I won’t have later should I need to pay some bills. Any spoons I spend on preparing a nutritious meal are spoons I can’t spend on cleaning up afterwards.

Often the Spoonie life means half assing a bunch of things because if you spend the spoons to do any of them properly it’ll be the only thing you do that day. All those partially solved problems become a cascade of further problems. So instead of doing the laundry OR cleaning the kitchen OR working on my novel I end up putting some stuff in the tumble dryer, wiping down one kitchen surface and fixing exactly one scene. So the next day I have laundry that’s not put away, a hob and a sink that still need cleaned and one slightly less shitty scene that mainly succeeds in making the rest of the novel looking bad.

Not that any of this means I’m giving up on my diet. I’ve got a doctor to prove wrong.

 

*For people outside the UK the ‘Beast from the East’ was a polar vortex weather system that plunged the whole country into arctic temperatures for a week. It wasn’t just that the temperatures were very low it’s that the temperatures were that low pretty much everywhere so the road clearing services were stretched very thin. It also didn’t help that so much snow fell that our usual tactic of gritting the roads so that the snow melts faster and vehicles can maintain grip was rendered useless.

It’s not the pain that’s the worst it’s the rage

Every day the first thing that I do is to fight with my compression tights. And also my self image and my failing body. I say it’s the first thing but really the first thing I do is to wake up and curse the fact that I am awake and alive and that my life is still like this. Then I muster my limited mental resources for the act of will necessary to get out of bed. Then I fight.

It makes me so fucking angry. Getting up every day to fight a losing battle against the Lipoedema that will eventually turn me into a blob in a wheelchair. Being faced with the reality that I’m not strong enough to get my fucking tights on properly. Knowing that if I can’t master compression garments I won’t even get on the waiting list for the surgery that is the only lasting treatment.

Spending the next hour with weak arms and shaking hands because I’m not getting any better at this. Unable to go anywhere because I can’t get the tights to stay up while I’m walking. Fighting the urge to stab myself. To hack at the useless, lumpy flesh that’s destroying my joints.

And then I spend the rest of the day surrounded by the evidence of the chores that I can’t do because I’m too exhausted from my battle.

I’m trying to get better. I diet even though I hate it and I know it won’t fix the lipoedema. I try to exercise even though that hurts and so far actually seems to be making things worse. I’ve been trying the 100 squat challenge. It took me 3 days to get up to 100 squats but I haven’t managed it since because my right knee hurts too much. The knee pain woke me up this morning.

And the absolute worst is the feeling that it’s all worthless. What’s the point of all this fighting? All it does it makes me angry and tired. I’m giving up the ability to get stuff done now for the chance to be able to do more in the future. But that’s just not going to happen. I don’t get that lucky. This fight is doomed to failure and by fighting I’m making everything worse right now.

 

If you have enjoyed this post then why not buy me a coffee with Ko-Fi?

Adventures in medicinal hosiery

On Saturday my compression tights finally arrived so I can finally begin to manage my lipoedema. I read the instructions carefully but I didn’t put them on because I was already dressed and frankly, the instructions scared me.

On Sunday I tried them on. It was torture. The fabric is so rough and requires so much force to pull into position that I developed a blister on one knuckle and tore the skin red raw on all the others.

My arms were shaking. The tights weren’t pulled on properly. My legs were on fire and I was filled with an irrational rage caused by a combination of exertion and body dysmorphia. I felt useless and weak. I decided that maybe I was doing something wrong, even though I had read the instructions and done my best to follow them. I was only able to wear the tights for an hour and a half because I couldn’t get them back on after using the toilet.

I asked for advice in one of the Facebook support groups for lipoedema. It turns out you’re supposed to use gloves. There are even special donning gloves made for the job (though most of the members use either disposable latex gloves, rubber washing up gloves, or gardening gloves). How is it that I didn’t know that? If it’s well known that this kind of compression garment will tear your skin off and there are gloves made for the job why didn’t anyone tell me that?

Today I tried to put them on again with mixed success. I used some disposable vinyl gloves that we had in the house and I tried lying down to get them above the knees. As I result I’m typing this while wearing the tights (though they’re still not on properly) but I’m also wearing a lot of plasters because I tore the blister right off and added four new blisters and that was with the gloves on. I think I might have blisters coming up on two of my fingertips. I’ve ordered better gloves and finger tape.

You know how I often complain that my life is unreasonably difficult, that there are always more steps between me and where I want to be than there should be? This is that. This is just another example of the endless multiplication of obstacles between me and any goal.

New year, same old me

But improving every day in tiny increments.

I don’t believe in new year resolutions. Picking some arbitrary, external marker as the starting point for a new beginning is just setting yourself up to fail. But it does seem like a good time to take stock of my ongoing attempts to be less crappy and more not crappy.

In April of last year I decided to start blogging 3 times a week and for the most part I’ve succeeded. There seem to be more people reading the blog but I can’t tell if that’s down to the regular posts or to the content of the posts themselves.

Since September I’ve been trying to manage my lipoedema. I’ve been seeking treatment via compression but although I the nurse ordered compression garments they haven’t arrived. When this blog post goes live I shall be on my way to an appointment with the nurse to find out what’s up with that. I’ve been following a diet to reduce the amount of non lipoedema fat. I’ve been trying to exercise because exercise is, on the whole, a good thing. I’ve lost 12.8 kg so far (just over 28 pounds or 2 stone).

I decided to get back into weight training and to that end I’ve been assembling the right equipment. I got a squat rack for Christmas from my mother-in-law and used the money from my father-in-law’s gift to buy a bench, a 5 ft barbell and two dumbells. Putting the squat stand and the bench together took much longer than I had hoped. It was exhausting and that doesn’t bode well for my exercise plans. However it’s all sorted now and I have started training. So far I’m just using the empty bar and working on my form. Squatting with a heavy bar and poor form is a great way to injure yourself.

In early December I decided to try trimming my undercut at home. My other half very quickly decided that using his beard trimmer to do that was unacceptable and bought me a hair clipper for Christmas. That seems to be working. It means that I don’t have to phone the hairdresser unless I want the top trimmed so it’s easier to look neat. In the long run we might even save money.

I read somewhere, I don’t remember where, that some writers swear by a daily practice of handwriting three pages of whatever you feel like first thing in the morning. The morning bit is potentially a problem but I’ve started trying to keep to a better daily schedule. Since I started the daily journaling practice I’ve written 10 out of 11 days. It’s too early to tell if it’s doing any good. So far it has mainly resulted in me begin forced to confront how bad my handwriting and spelling have got over the last few years.

I am continuing to try to get better organised in every respect but it’s so very hard. My ADHD seems to make sticking to a schedule far more difficult than it should be but also really important. It’s very hard to pick a solid marker of success or track improvement. So it’s a constant fight that never brings any reward but the moment you give up everything will probably go to hell.

So that’s where things are at the moment. I’m trying to be better in a lot of ways. Some of them seem to be working. Some of them might work but I don’t know yet. Some of the things that I’m doing are just so that I can feel like I’m doing something. But hey, you’ve got to do something with your time.

Diet Update 12

This week I lost 2kg. Of course some of that was the half kilo I put on last week so it’s only a net loss of 1.5kg (about 3 pounds). This is for a total weight loss of 11.5kg (25 pounds).

Still not much of a visible change though. In fact there’s so little change in my forearms that I’m starting to worry that I might have lipoedema there as well. At least I now have an appointment for the next stage of assessment for the lipoedema and it’s less than a month away.

With the end of NaNoWriMo approaching I think it’s time to think about a proper exercise plan. Going to a gym just isn’t practical but I do have a rowing machine. Now I just have to work out how to use it. I’ve got a bunch of weights for weight training but no bars to put them on, no bench and no squat rack. I suppose it’s a start.

 

Diet posts.