Update

I’m Still Here

Hello!

Remember me?!

Sorry it’s been so long. Several reasons, but the main one is that I have been miserable. I tend to pull away from people when things are not going so well, so I’ve been ignoring phonecalls and text messages, email, and most other forms of communication. I currently have 15 voicemails, 4143 unread emails, and 12 other (Facebook/WhatsApp/Viber/text) messages.

I really hope that hasn’t caused any of you to feel as though I don’t care about you. I really do, but I am just finding it hard to make connections at the moment.

Part of the problem is that I am still processing some recent medical stuff. It’s hard to respond to the, “How are you?” questions (honestly) when I don’t know the answer. I also feel a certain amount of responsibility and guilt for sharing miserable and negative stuff with people, making them feel sad. I like to work out how to put a positive spin on things before I share them with others.

Another problem is that I haven’t been well. No one thing in particular, but lots of little things in combination have meant that I have been spending the majority of my time in bed. There have been some wonderful exceptions to that – film marathons with friends (this counts, even though I was technically still in bed – sofabed in the sitting room), a few trips to the park, to the local gelateria, and even a trip up north to see Husband’s family at Easter. These exceptions make me feel more human, and remind me of who I am, once the veneer of medical-badness is stripped away, and I cling to the memories of recent adventures and plans for future adventures; little lights in a tunnel that is sometimes very dark and very unpleasant.

I haven’t been able to bake or knit much recently (I haven’t even picked up knitting needles for almost 2 months), which hasn’t helped my mood. Those two things made me feel as though I could contribute something to the world – I love to give things to people, as well as enjoying the process of making them. It’s been hard not to feel like a waste of space, and a colossal drain on NHS resources, when I’m not able to make anything tangible. I get to the end of the day and feel as though I’ve accomplished nothing. Watching box sets and reading Dickens doesn’t really count as a worthwhile contribution to society, does it?

I’ve been trying to find other interests and other ways to feel productive within these new limitations. I have been drawing and painting a little bit, and trying out several other craft techniques. As part of my New Year’s resolution this year, I have been keeping a creative journal, in which I write, draw, design, plan, collage, doodle, etc. I suppose it’s a Smashbook of sorts.

One of my long-term goals, when I left hospital in November 2013 (after a 3-week inpatient rehabilitation programme), was to sign up for a course to learn new skills or improve old ones. That hasn’t been as easy as it sounds. Early mornings are out, for reasons that I explained in my previous post; evenings are difficult because I’ve usually run out of energy and run in to pain; at the best of times, I struggle to sit for more than a few hours, so each session/class would need to be relatively short and/or close to home. Mondays are generally a write-off after the weekend, when I use all my energy in order to spend quality time with Husband; likewise, I try to rest on Fridays, to conserve energy for the weekend. All these factors limit my choice of courses quite considerably, and that’s without even thinking about whether the course interests me, or if it would be physically possible. With all those limitations, it’s taken a while, but I’ve found a course that could have been made especially for me: Experimental Pattern Cutting and Design (intermediate) at our local adult education centre, which is a 15 minute ‘walk’ (in the electric wheelchair), or 5 minute drive, from home: 2 hours on a Tuesday afternoon, for 8 weeks.

Frustratingly, the course was cancelled at the last minute due to lack of interest, but I met with the tutor, who went through some of my sketches, photos of previous projects and patterns I’ve drafted, and gave me lots of helpful advice and criticism. One of her suggestions was to put together a more formal portfolio and apply for a course at the London College of Fashion, Camberwell College of Arts, or Central St Martin’s. It hadn’t even crossed my mind that I might be good enough for anything like that (I’ve spent my whole life being nudged towards the sciences, and firmly put in my place – Not an Artist – by art teachers), so I felt really encouraged, if somewhat shocked! In addition to giving so much of her time to meet with me, the tutor emailed me with lots more information and guides for further reading/projects to try, and offered to meet me again to talk about the projects, and any stumbling blocks I encountered.

I don’t think my body would handle the travel to and from any of the above colleges (except perhaps Camberwell, which is pretty close to home), let alone the physical demands of even short courses, but it has certainly given me food for thought. I’ve signed up for Craftsy courses (online video-based) on couture sewing techniques and drawing, and have been working my way through those, as well as a couple of books and lots of blogs.

This has all come at just the right time, and has given me such a boost. I have something exciting to occupy my mind, and so many hands-on projects for when my body is feeling cooperative. I’m currently sewing a dress and a jacket for myself, making adjustments to the patterns, and using the couture techniques I’ve been learning. If they go well, I’ll be looking for volunteers for my next project. I’d really like to sew/design things for other people, but I’m not terribly confident yet, and I’m quite slow – a combination of actually being slow (tactfully, I’m a meticulous detail person) and spending a lot of time in bed. I’m very happy, but am trying not to let myself get too excited about these fun projects – it seems as though the more emotionally invested I am in something, the more likely it is that my body will find some way of sabotaging it!

I’ll post photos of some of my recent creations soon. I know I still owe you posts about my bladder operation, a medical update (sigh) and photos of the garden (Husband has been doing wonderful things!) and the cat, who is ridiculous and hilarious, and is still a ray of (sharp and spiky) sunshine in my days, but those posts will have to wait for another day – my sewing machine is calling to me.

Until next time…

 

** Love life; Dream big; Be positive **
Rina Goldberg

 

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Medical Information, Recipes, Update

Quick November Update

Sorry it’s been so long. It’s not that I don’t want to write, but that there’s so much to tell you and I don’t like to share too much miserable medical stuff at once.

I’m going to tell you all the miserable stuff, but I’ll try to do it quickly, and then I’ll give you the recipe to the most wonderful baked (healthyish) doughnuts. Deal?

Deal.

As I think I’ve a already mentioned, I’ve had problems with my care package. Lots of reasons including a corporate merger/takeover. The upshot is that I’ve had 1.5 days of care since the end of August. It’s really catching up to me now. At first it was ok because Husband, the cleaner and I could pick up the slack between us. As time has passed, however, I’ve had to neglect more and more things. At first it was the laundry (too heavy), then it was washing and drying/styling my hair. My shoulders dislocate if I lift my arms above my shoulders; I can’t control my body temperature very well, so I get very hot and/or very cold in the shower; hot water makes my blood pressure drop enough that I don’t feel safe showering when I’m alone in the house. I haven’t managed to stay on top of grocery shopping (even online) or putting the shopping away, planning meals and cooking.

On the plus side, we bought a slow cooker, which has been amazing. Husband works long hours, and I hate that he doesn’t have food ready for him when he gets home so late. The slow cooker has really helped with that because I can set it off in the afternoon when I tend to feel least awful, and it just cooks away unsupervised (on a timer) until we’re ready for it. It switches to a warming setting once it’s completed the set cooking time. I have no idea how I managed without it!

Back to medical tedium.

The medical supplies (which I’ve shown to some of you) have been a problem. I have three separate home delivery companies that deliver certain items, most of my medication is ordered through my GP surgery (online) and collected from my local pharmacy a few days later, but there are still lots of supplies that I can only get through two local hospitals. One is very organised, and just sends me an email when the delivery arrives so I can pop in to collect it, but the other has struggled. Because I haven’t chased them enough, and because they don’t seem to be able to manage it themselves without chasing, I’ve only had 1.5 months’ supplies from them since May.

I’ve been functioning in a kind of ‘survival only’ mode for months now. I have so little energy that I can only manage the bare essentials. I’ve just about managed to stay on top of the medications that I need every day, which is a lot:

– 16 hours of IV fluids every day
– 20 hours of feeding through my j-tube (I’m failing miserably with this)
– 36 medications that I take regularly or as needed

I’ve had so many infections this year. Looking back at my diary it seems to have been every 4-6 weeks all year. Yep. Every 4-6 weeks I get a new infection and have to have 7-10 days of intravenous antibiotics. Mostly this has been manageable (apart from meaning that I feel awful from infection then awful from antibiotics). My routine meds are every eight hours. Most of the antibiotics I’ve had recently have fitted nicely into this schedule, but I’ve got a nasty abscess at the moment, which hasn’t responded to antibiotics yet. When the swab results came back from the lab, I was switched to my joint-most-hated antibiotic. It’s given intravenously every six hours. This does not fit nicely into my medication schedule.

I feel as though I’ve been teetering on the edge of a precipice, constantly fighting to keep my balance. Fighting infection after infection, spending more and more time in bed, my life revolves around my medication schedule.

The heavy-duty painkillers that I take are not doing their thing. I take them, which gives me a chance to actually do something, but I invariably overdo things, which causes more pain, which requires more medication. I reason with myself that it’s only worth taking all these medications to keep myself alive and medically stable if they give me the chance to be myself for a while. Logically I still think that makes sense, but practically it means that I take too many painkillers for a week or two so I can do some normal things, then run out of painkillers and spend 2-3 weeks in bed, crying and sometimes even screaming because of the pain. My medical team oscillates between telling me that I shouldn’t allow myself to run out of painkillers, that there’s no point in suffering, and that it’s akin to torture not to take painkillers when I dislocate something (true), and refusing to prescribe these controlled drugs if I request them more often than every 4 weeks. I’m sure I’ll find a balance, but it’s so hard to rest when I feel ok, and so hard to ‘save’ my painkillers for when I *really* need them if I’m already crying because of the pain.

I didn’t intend to write about painkillers (there’s enough for a full post on its own), but it gives you some flavour of my current quality of life, perhaps.

I’m not suicidal by any stretch of the imagination, but I constantly question whether it is worth the huge effort and huge expense to keep me alive so that I can spend my days alone, in bed, crying in pain. I recognise that sounds negative, but it’s true. I do manage to find happy moments, and still enjoy so many things, but I find myself less and less able to do the things that I enjoy most. I haven’t even managed to get to the hospice for weeks. Every time I find a new fun thing to do, my body seems to find a way to spoil it. It’s a very passive-aggressive body.

The final straw on this particular donkey is that Husband is away with work all week. I’m so scared to be alone for so long, but I don’t have the energy to pack up all the medical stuff I would need to relocate somewhere else. I’ve been pushing the thought of a hospital admission to the back of my mind, but the fact that it’s in my mind at all is a sign that things are hard.

Well done if you made it this far! I completely understand if you skipped ahead to here (you didn’t miss much – just a whole lot of complaints).

Here is your reward: the nicest doughnuts ever! They are really quick and easy to make, have pumpkin in them (and therefore less fat without being dry), are baked in the oven instead of being deep fried, and they keep well for a couple of days in an airtight container. If possible, they’re even better the next day.

Baked Pumpkin Spice Doughnuts

Ingredients:
1 3/4 cups plain flour
1 1/2 tsp baking powder
1/2 tsp salt
1 tsp ground cinnamon
1/2 tsp grated nutmeg
1/2 tsp allspice
1/4 tsp ground cloves
1/3 cup vegetable oil
1/2 cup soft light brown sugar
1 egg
1 1/2 tsp vanilla extract
3/4 cup tinned pumpkin (or homemade pumpkin purée)
1/2 cup milk

For the cinnamon sugar, mix together:
2/3 cup sugar
1 – 2 tbsp ground cinnamon

Method:
1. Preheat the oven to 180*C
2. Mix together the flour, baking powder, salt and dry spices
3. In another bowl, mix together all the other doughnut ingredients until just combined
4. Add the dry ingredients to the pumpkin mixture and stir until just combined (over mixing is the enemy of these babies)
5. Spoon or pipe the mixture into a doughnut tray (I use a silicone one) or into mini cupcake cases
6. Bake for 5-7 minutes (for the teeny ones) up to 10-15 minutes (for giant ones)
7. Turn out onto a cooling rack
8. Dip into cinnamon sugar before serving

(Makes 4 giant, 24 small or 72 really tiny doughnuts)

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Uncategorized

Energy budgeting and setting priorities

My condition, and the ways in which it affects me, can vary wildly from one day to the next. Sometimes I can predict the change; sometimes I can’t predict it, but can see the reasons with the benefit of hindsight; sometimes the difference seems entirely random.

As I’m sure you can imagine, this makes it difficult to make plans – not just for the big things, like looking for a job, going on holiday, or hosting parties, but for just about every decision of every day. It also makes it very difficult to explain to other people – it’s hard to understand why I can’t sit up today when you saw me sitting up just fine yesterday.

The Spoon Theory, by Christine Miserandino, explains the concept of ‘energy budgeting’ very well. Every activity has a price, such as how much energy it takes, or how much pain it might cause.

The amount of energy it takes to do any given task is not fixed. Making a cup of coffee becomes a more difficult/expensive task after a nasty shoulder dislocation; even more so after dislocating both shoulders. Making that cup of coffee is not so difficult if I’ve dislocated my knee and not my shoulders, but carrying it might then become an issue. If I’m having problems with blood pressure/heart rate, sitting upright to pour the coffee becomes downright dangerous, and that’s assuming I’ve even managed to get to the kitchen in the first place!

I often try to combine tasks – the ‘extra value meal deal’ technique. The cost of filling a hot water bottle at the same time as my coffee mug is not much more than filling the mug alone. This is generally good, but can sometimes backfire. While I’m waiting for the kettle to boil, I’ll do the washing up, empty the dishwasher and wipe the kitchen worktops. By the time I’ve made my coffee and got myself back to the sofa, or have to bed, I’m too exhausted, in too much pain and too nauseous to drink the blasted coffee, and fall asleep with my hot water bottle (good thing I filled it, huh?).

The risk of running out of steam during the day is pretty high, so I have to prioritise. My mind is always filled with ideas, projects, and Cunning Plans, but my body is not so willing. There are lots of medical tasks that force themselves to the top of my list of priorities; there are lots of ‘should’ tasks up there too.

The medical things have to be done, otherwise there is no chance I’ll be well enough to do anything else. The ‘shoulds’ don’t really have to be done, but they are the things that make me feel guilty if I don’t do them. I’m sure you’re familiar with these: most of them are household chores or admin tasks.

I’ve struggled a lot with the shoulds. Rationally, I know that I should spend my energy and time doing the things that I love; the things that benefit my relationships, and which make me feel like me, but I feel so guilty when I choose to go out with a friend or watch a film instead of doing the laundry. Having carers has helped a great deal with this. I delegate the household chores and medical admin tasks to them, and instead spend my precious energy on the things that I enjoy most.

I feel guilty about delegating the boring tasks, but I’d rather feel guilty than feel as though I’m just an empty shell of a person, with all the layers that make me who I am gradually stripped away by this illness. I had started to struggle to define myself, with nothing left except medical curiosities.

I hope you know that you haven’t fallen off my list of priorities, and that I haven’t forgotten you. My husband and I are trying to find more ways of including you, even when things aren’t going so well medically. Perhaps we need a regular ice cream tasting club, a Strictly Come Dancing appreciation (or just watching, without the appreciation) club, or a come and laugh at the cat group. I’m open to suggestions!

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