Another New Normal

I spend most of my time these days lying flat. Usually in bed, but sometimes on the sofa. I’ve been trying to keep track over the last few months, so as not to sound melodramatic by underestimating the amount of time I am able to be vaguely ‘functional’ each day. On average, I spend just over 80% of my time in bed.

There are two main reasons for this:

  1. Pain
  2. Autonomic dysfunction

I’ve talked about autonomic dysfunction before, and the effects that it has on my body, so I won’t go into depth about the basic stuff. As a very quick reminder, the autonomic nervous system (ANS) has a role in regulating pretty much all the ‘unconscious’ bodily functions, from heart rate, blood glucose and blood pressure to sweating, and bladder, bowel and sexual functions. I was diagnosed with severe autonomic dysfunction about 4 years ago, though I’ve been symptomatic for decades. It’s very difficult to diagnose autonomic dysfunction, not only because it’s rare, but also because so many different body systems are involved. Going to the GP with symptoms of heart racing and dizziness as a young woman is likely to earn a diagnosis of anxiety and ‘reassurance’ as the ideal treatment. Even if the symptoms are taken as an indication of a physical, rather than psychological, disorder, it can be a struggle to believe that the cardiac symptoms are related to the bladder dysfunction, and that both of those things are related to the dermatology symptoms of abnormal sweating, gastroenterology symptoms of intestinal dysfunction, and so on.

Anyway, I am ‘lucky’ enough to have a firm diagnosis, with “severe autonomic dysfunction” in black and white, on paper, and signed by a consultant neurologist. I carry this around with me, as there are more than enough doctors in A&E departments who don’t believe in things they can’t see, without written ‘proof’ from a specialist!

The most difficult thing for me at the moment is that being upright, whether sitting or standing, requires a lot of work from the autonomic nervous system, in order to maintain blood pressure and heart rate, mostly. My heart rate tends to run at about 110 beats per minute when I’m lying down. When I sit up, this can jump to 150 bpm, and can be even higher if I try to stand. This is uncomfortable, because I can feel the ‘flutter’ of my heart when it races like that. I also get very dizzy, and often black out, or faint completely, as my heart can’t pump efficiently at these very high rates, so my blood pressure drops. Combined with stretchy blood vessels (thanks, Ehlers-Danlos Syndrome) which allow my blood to pool by gravity in whichever part of my body is lowest, it becomes almost impossible to maintain my blood pressure when I’m upright. Everything else (autonomic function-wise) seems to be more difficult when I’m upright, perhaps because my ANS is so busy trying to deal with my blood pressure/heart rate that it can’t cope with anything else. So I really struggle to control my body temperature, with extreme sweating above shoulder level, wild swings in blood sugar levels, nausea, dizziness, etc. The thing that I find most unpleasant (apart from the sweating, which I find intensely embarrassing) is what I can only describe as ‘autonomic storms’ – intense shivering, combined with waves of goosebumps, followed by hot flushes and sweating, and back to shivering.

The shivering has an additional effect, of stressing my already-weak muscles, and pulling my joints out of socket. Yes, my joints are unstable enough that shivering can cause dislocations. Multiple dislocations.

This leads us nicely on to talk about pain.

I don’t like to talk about pain. I don’t like experiencing it, of course, but there’s something almost worse about sharing it. People can understand pain. Almost everyone has experienced pain of some degree, so it’s easier to imagine the pain than some of my other, less common symptoms.

Pain has become a constant companion. It seems normal to shift position because my hip is dislocated, or to check for dislocations before trying to roll over in bed. There are times when my muscles are too weak to hold my joints in place, even just lying in bed. When that happens, I can feel my joints sliding out of place, and all the pain associated with it, but I don’t have the strength to stop the dislocations, or even to move to be able to get the joints back in socket. At times like that, it takes everything I have to be able to reach the pain medications that I need, and even then, I find myself crying out, or even screaming with the pain. I don’t scream easily. I have stitches without local anaesthetic. I have had surgeries without anaesthetic, or even sedation. I have had IV lines tunneled under my skin and cut out without flinching or crying out. The pain of all my joints dislocating is indescribable; trying to breathe shallowly so as not to irritate the dislocated ribs; wanting to change position to get my joints back in place, but not being able to do that because my muscles are too weak; when I do manage to change position, I dislocate a different joint, or joints. This happens not just once, but over and over and over, accompanied by all the autonomic symptoms, nausea, vomiting, dizziness, constant infections. It’s too much to bear.

My life pretty much revolves around medications in general, and pain medications in particular. I can cope without some of my other medications, but pain meds, not so much. It’s much easier to try to keep pain under control than it is to try to get it under control once things have gone haywire. Additionally, pain seems to ‘stress’ everything else, especially the autonomic stuff, so being late with pain meds can lead to autonomic storms, which leads to muscle contractions and joint dislocations and more pain. I try to plan all my activities around pain medications. I’m so grateful to have medications that allow me enough relief from pain to be able to have a conversation with a friend, hold a friend’s baby, play with the children, or just to be able to have a shower and wash my hair.

Having so little ‘upright’ time (four hours a day, on a relatively good day) makes it really hard to socialise, so once again I’m finding myself incredibly isolated, lonely and frustrated. Those four hours are not just free for doing fun things. Having a shower takes about an hour, and requires at least an hour lying flat afterwards, leaving three ‘upright’ hours. Getting dressed and putting on make-up is another half hour, followed by more lying down, leaving two and a half ‘upright’ hours. Travelling requires extra pain and nausea medications, and reduces the time I can be upright – if it takes half an hour to get somewhere, and half an hour to get back, that’s another ‘upright’ hour gone, plus a reduction in ‘upright’ time of maybe another half an hour, or even an hour, leaving only half an hour of ‘upright’ time. All that effort, planning, getting up early so I have time to get ready and do lots of lying down, planning/preparing/administering extra medications to deal with the extra symptoms associated with being upright and getting ready to go out.

All that effort for half an hour with friends.

And then there’s the payback. Hours, or even days of having to lie flat in bed, needing extra medications, struggling with extra symptoms. Payback days mean that nothing gets done. All the chores get pushed back to another day, when I’m feeling well. For half an hour with friends, there’s all the preparation, there’s the payback, and then the days spent trying to catch up with all the chores that didn’t get done because I wasn’t well enough to do them.

At most, I am able to go out twice a week. That includes medical appointments.

There have been several times this week when I’ve wondered if anyone, other than my husband, would notice if I just disappeared. I feel as though my mark on this world is getting lighter and weaker, and my ability to leave any kind of legacy is getting less and less every day. I still have things that I want to give, things that I want to say, but I’m fighting against a body that just wants to stay still, and seems happy to fade into oblivion.

I’m not happy to fade into oblivion.

Not yet.

I’m trying to use my good hours/minutes to reach out to those that I love. Please understand that I want to be there for you, with you. I want to be involved in your life, to be supportive, to share the good times and the bad times with you. I long to break free of this body, but unfortunately, the only way to do that is to shuffle off this mortal coil, which doesn’t get the results I want. My mind is still active, and I think about all of you so much. I wish that I could show you how much I think about you, how much I care about you, and how much I wish I could be with you.

After months of hoping that this wouldn’t be my new normal, I’m now trying to come to terms with the fact that it is, and trying to find new ways to be in touch with you. I may need to start hosting pyjama parties!

Anyone keen?


I’m Still Here


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


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?


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

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

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)


Coping with pain

A number of years ago, a friend of mine in the US introduced me to the idea of guided imagery as a way of dealing with pain. Until that point, I’d used a rather unlikely mish-mash of guided imagery and progressive relaxation, along with memory exercises for distraction. I would, and still do, recite the states of the USA and counties of the UK in various permutations (alphabetical, geographical), and premiership football clubs, in league and reverse order and alphabetical/reverse alphabetical order (though my interest in football has seriously waned since my dad died and I no longer have to be prepared for frequent conversations about sport). The exercises are a combination of mental discipline and clutching at straws.

Guided imagery has the advantage of someone else’s voice cutting through the pain and all the associated thoughts; anchoring me and pulling me back from panic again and again. Of course, that is also its disadvantage. Listening to someone with a high pitched voice or strong regional accent stumbling over a script is not as painful as repeatedly dislocated joints, but it’s pretty unpleasant, nonetheless.

Nutmeg-the-first-cat made a very good alternative focus – she purred loudly (as only a really deaf and contented cat could) and was warm and constant in her presence on our bed at night. Cocoa-the-new-cat is inclined to bite, which is less helpful.

It’s always in the quietest and darkest hours of the night that the pain seems unbearable. It isn’t just the sensations of pain, but the thoughts and statements about the pain that one can slip into, almost unconsciously: I can’t take much more of this; the medication is never going to kick in; I’m not strong enough; it isn’t fair. Even the word *pain* is heavy with implication; barbed and loaded with judgements.

Doctors tend to prefer other words: discomfort, in particular. Never was a word so unfit for descriptive purpose. Discomfort is too much food at Christmas, tight shoes in warm weather, sand inside a swimming costume. The end of the world would not be heralded by a feeling of discomfort, however strong.

Discomfort aside, it can be helpful to analyse and relabel the sensation of pain. It isn’t easy – having the courage to focus on the pain, even for a short time, can feel like leaning over the edge towards a steep drop, but I tell myself that’s the sensation of winning. If I can squash the pain into a smaller word, like tightness or aching, it has less power for an instant. What sounds almost comical in the warm light of day can feel like the most desperate of battles towards the word with the least power (‘a bit sore’ is a current favourite).

Because of the syndrome that I have, local anaesthetics and sedatives have little to no effect on me, so the solitary practising in the middle of the night pays off when I can have a set of stitches done with no anaesthetic, or a joint ‘popped’ back into place. “Oops,” said the orthopaedic surgeon after one such occasion – half an hour of pulling my shoulder out of socket and back in every conceivable direction. “I thought you’d already been sedated.”

No, and it was a bit sore.

In a world in which understatement is right next to Fentanyl in my arsenal against pain, that made me a winner.