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



Update, As Promised

Hello, nice person.

Thank you for waiting so patiently for this latest update.

In the last update (here), Husband was in Mexico, and I was struggling without a carer, fighting with the complicated ordering systems for my medical supplies, and trying to fight off a persistent infection.

Things have changed a little, but not as much as I might have liked.

The good news is that I’ve managed to do lots of fun things – Thanksgiving was great fun (more on that another time), and I’m looking forward to Christmas. I’ve been out a couple of times, shopping in our local area, enjoying the festive sights, sounds and smells, and taking advantage of the dry weather by walking in our local park (really just an excuse to drink hot chocolate in the cafe), and have had a few visitors at home, as well as a few Skype ‘visitors’. There has been payback (there is ALWAYS payback), so I’ve spent the rest of my time lying down, reading, working on my crochet blankets, Christmas crafts, and snuggling with the adorable fluffball.

The infection around my jejunostomy tube (the feeding tube that goes straight into my small intestine) is still determinedly present, despite three courses of intravenous (IV) antibiotics. The most recent swab didn’t grow anything, possibly because the antibiotics reduced the number of bacteria enough that they couldn’t be measured in the lab. My GP considers this ‘case closed’ despite the fact that my tube site is still hot, red, swollen, painful and oozing large amounts of foul-smelling pus. The smell bothers me more than anything else. The pus is ruining my clothes, leaving them wet, stained and sticky; combined with the smell, this makes me feel extremely self conscious, and reluctant to be near other people, even my husband. Feeling so unattractive and dirty is making me even more isolated than usual. I have had contact with a few close friends over the last few weeks, but I can’t help worrying that they are repulsed by the smell. I certainly am!

I was scheduled to have bladder surgery next week, but have cancelled it for now. It’s not just that it’s too close to Christmas; rather, it’s too much medical stuff, regardless of the time of year.

There are times when this medical roller coaster ride feels too much; too fast; too painful; too difficult. I am overwhelmed by the desperate urge to get away from all of it.

“Let me off! I need to get off!”

I feel like ripping off all the patches, dressings, splints, tubes and monitors. I want to throw away all the medications and supplies and just forget about everything health-related. I’m so fed up of having to have all this stuff in my thoughts All The Time, and of the constant reminders that I’m not ‘normal’. The boxes and boxes of supplies and medications, the equipment that clogs up all my plug sockets, the tubes and lines and scars that mark my body might as well be neon signs, flashing negativity into my mind. I have to shut it out, and run and run and run, away from it all.

I know that all this medical gumph is what keeps me alive and medically stable (ish), and most of the time I’m extremely grateful for that, but the feeling of panic doesn’t come from a place of logic and reason, and the more I try to rationalise it, the louder the volume of the panic-beats. So I’ve cancelled the surgery. I’ve also stopped taking the least important of my medications and stopped answering the telephone. Silly, I know, but it’s the only way I feel able to reclaim some control. I’ve promised myself that I’ll get back on top of it all after the holidays, but for now I am being kind to myself, and not piling on the guilt about being a bad patient and not taking care of my body properly.

The problems with the carers (I’ll refer to them as PAs – personal assistants – from now on) are ongoing, and I’m sure that’s not helping with my feelings of being out of control.

Together with my care agency, I’ve been trying to recruit a couple of PAs to work 32 hours per week between them – during the day, Monday to Friday, with flexible hours. Perhaps naively, I thought that there would be lots of people keen to work for a few hours a week, within school hours, especially as there are so many young families in this area, but that certainly hasn’t been the case so far. We have been advertising for almost 18 months, and in that time, we have received almost 100 applications.

Of these initial applications, about half were rejected immediately – mainly because they gave the impression that they were applying for every job listed on the site, in every employment category. The remainder were contacted for interview, but we were only able to get hold of 14 of them, and four of those didn’t turn up for interview. Of those that did turn up, two were not suitable for the job.

And then there were eight.

The eight successful candidates were formally offered the job, and were booked onto the 5-day specialist training course.

One candidate accepted another job before starting her training, one went AWOL part way through the training (we later found out that she had returned to her home country), and two failed the training.

And then there were four.

One completed and passed the training, but then stated that she hadn’t realised what the job involved, despite having had two interviews, a meeting with me (during which she was shown around my home and given a detailed run-down of some of the regular tasks), and approximately 35 hours of training.

And then there were three.

One worked with me full-time for a week, and did a great job. I felt very positive about her work ethic, liked her personally, and felt that she was picking up the individual training from me very well. But she resigned without notice at the end of her first week, stating that the agency was too disorganised.

And then there were two.

One worked with me for nine months and then moved on to another client within the same agency.

And then there was one.

The last candidate worked for me for four months, but called in sick with less than an hour’s notice on 20% of the days that she was scheduled to work, and then went off-radar and no-one ever heard from her again.

And then there were none.

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)



I had an allergic reaction to something this afternoon.

My tongue and throat started to feel a bit scratchy, and then my eyes started to get red and itchy, and to swell up, with the muscles around my eyes spasming them closed.

I took some antihistamines.

The scratchy feeling in my throat became clusters of blisters over the roof of my mouth, over my tongue and down my throat.

I took a dose of another antihistamine that blocks a different type of histamine receptor.

I found my ‘allergy bag’ which has medications, including injectable adrenaline (everyone wanted to be my friend on sports day). I started to make my way downstairs, in case I had to do the dash to hospital in an ambulance, keeping a tight grip on the allergy bag, epi-pen and mobile phone.

My throat, mouth, tongue and lips continued to swell and my breathing started to feel more difficult. Inhalers and nebulisers, monitoring my heart rate and oxygen % saturations.

It’s been a long time since my asthma has been severe enough for a hospital admission. More than 2 1/2 years, in fact. Part of me started to panic at the memories of terrified clock-watching in the intensive care unit, dragging oxygen into my overfilled lungs; forcing the air out; muscles shaking and burning with the effort of every breath. Worse, the memories of being surrounded by doctors, nurses, anaesthetists. They gather round, bend over my bed, close in on me, then the medications, ventilator and blessed rest.


In 2011, I spent five months in hospital, in total. I got out of hospital almost exactly 48 hours before my wedding, and was back in hospital just a few days after the honeymoon.

I try not to think of the stable asthma that has taken so much careful monitoring and treatment. I try not to think of the events that I missed because of unstable life-threatening asthma; the plans that we didn’t/couldn’t make for the future; the 30th birthday ‘celebrations’ in intensive care; having to sign release forms to leave the hospital against medical advice for my dad’s funeral.

Today’s afternoon turned into evening, and things steadfastly refused to settle. I took the maximum ‘rescue’ dose of steroids, another dose of both types of antihistamine, plus a third antihistamine, plus inhalers. Inhalers and nebulisers again and again and again.

Have you been back to the beginning of this blog post to see if you missed a crucial bit of the story? Are you wondering why this story doesn’t feature an allergen?

Yes, that worried me too.

The only obviously new thing, on a day with low pollen and good air quality, is the laundry, hanging in the next room to dry. The smell of the new fabric softener immediately caught in my throat, but there’s a world of difference between an unpleasantly overpowering fragrance and something that causes my mouth, tongue, throat and lips to swell and close, and my airways to tighten, isn’t there?

I wrote about unstable mast cells recently, and I think they might be able to take credit for this seemingly-unprovoked reaction.

My husband moved the laundry downstairs when he got home, and things have been stable-ish since then. I’m no longer clutching my phone, 999 ready on the screen, epi-pen hovering.


Feeling a bit better now. My heart rate is the top number (normal = 60-100 beats per minute), oxygen % saturation is the lower number (normal > 94%). Not good numbers, but not getting worse. My throat and tongue are less swollen, and the crazy itching has subsided.

I’m still scared to close my eyes; to let sleep take me. I’ll have one last nebuliser treatment, and set the oxygen monitor to beep if my saturations (sats) drop below 88% and hope that things will be easier when I wake.

Deep breath…



I feel that I should start this post with an apology:

For longer than intended, I have been brushing the details of my medical conditions under the proverbial rug. I wanted to update each of you in person, to give you the chance to ask questions, and to be able to hug you afterwards. I’m so sorry that hasn’t happened.

It hasn’t happened because I haven’t been well enough to arrange dates with all of you, and the times when we have been together in the same room have been happy occasions – weddings, christenings, housewarming parties. There is so much good news being shared, and I hate to pour out the ice-cold rain of my own news over your wonderful, joyful parades.

Another reason that I haven’t updated you is that things keep changing. With almost every hospital appointment there are additional diagnoses, tests, and changes to my medication. Not so long ago I had seven appointments in one week. Too much information, not enough time to process internally, let alone to work out how to share it with my loved ones.

I’ve been trying to write this update for you since last week. I wanted to write about my medical condition in an accurate, but upbeat and accessible, way. However, I’ve been bedbound since last week, which is having an effect on my ability to feel positive about anything, let alone about the medical condition that is keeping me in this prison, comfortable though it is.

Let me rewind a bit:

I have Ehlers-Danlos Syndrome (EDS), which is a genetic disorder. Collagen is a protein that is found in various connective tissues within the body, and is responsible for giving strength and rigidity to those tissues. EDS collagen is stretchy and weak (‘incompetent’ to quote one of my orthopaedic surgeons). Having stretchy collagen in my ligaments allows my joints to dislocate incredibly easily. My left elbow has dislocated eight times in the last month, six of those times while I’ve been asleep. Rather unfairly, sleep is when my joints are most vulnerable, as the muscles relax, leaving the ligaments to hold my joints safely in place. Which they often don’t (or can’t).

Having joints that dislocate all the time is painful. I take a LOT of medications to try to control the pain. Unfairly (again) the pain nerves are wrapped in collagen, which seems to result in inappropriately high pain signals and low response to painkillers, local anaesthetic and sedatives. Apart from the pain, having stretchy collagen and unstable joints leads to fatigue (from the extra work that my muscles have to do to compensate for incompetent ligaments, and from waking up due to dislocations/pain) and weakness.

I don’t intend to write in detail about all the effects that EDS has on my body. Not today, anyway. To be brief (a talent I share with my wonderful husband), connective tissue is found in just about every organ/system of the body, so EDS can cause all sorts of problems, ranging from easy bruising and abnormal scarring, to bladder failure and immune dysfunction.

So why have I been stuck in bed?

The full answer to that is complex, but basically my body struggles to maintain status quo. Heart rate, blood pressure, body temperature, etc. All those things that we take for granted. This heat wave has given me the opportunity to discover just how inept my body can be. Lying flat with the curtains drawn and IV fluids running though a drip, I’m absolutely fine. Within two minutes of standing or sitting upright, I’m bright red and dripping with sweat (just my head and face), I feel dizzy and as though my heart is racing. Lie down again, and everything is peachy. I very nearly fainted this afternoon because I wanted to spend 3 minutes picking blackberries from the end of the garden. By the time I got back to bed, my heart was hammering away at 150 bpm (normal: 60-100 bpm), my temperature was 38.4*C (normal: 36.5*C – 37.5*C), my speech was slurred, and my vision was starting to ‘grey out’ at the edges – usually the first stage of fainting for me. My carer helped me to bed, elevated my legs and restarted the IV drip, and within a few minutes I felt back to normal, though somewhat chastened for not knowing my limits.

You may notice that I said ‘carer’ – yes, I have two carers, who work 30 hours a week between them. They help me to prepare daily medications, IV fluid drip, and tube feed, and to organise medications and supplies. They do all the boring things around the house, which allows me to save my energy for fun things. They are pretty good at spotting when I’m not feeling well and know what to do about it.

Having daily care is one of the biggest recent changes. I can’t think how I managed without their help, and am so glad to have them around, especially when I’m stuck in bed, which seems to be happening far more frequently than I’d like.

There are two other big changes that I need to tell you about:

1. I’ve been given an NHS electric wheelchair to help me get around. I’ve been using it more and more, even inside the house. It saves my poor joints from injury, and allows me to adjust my position, with my legs up and the backrest reclined, so I can be almost horizontal in the chair. Not very practical for moving around, but very useful in hospital waiting rooms, which are often hot and crowded.

2. The focus of my care has shifted somewhat – there is no cure and very few treatment options for EDS and all its secondary conditions. My life is likely to be shortened by EDS (though no-one can say how much), so I want the main goal of my treatment to be better quality of life. I was referred to my local Palliative Care team about a month ago, as they specialise in complex symptom management, and offer the kind of holistic approach that has been lacking in my care. I have been going up to the outpatient centre of St Christopher’s Hospice every week. I’ve been having massages, participating in art and music therapy, talking to the family support therapist, and doing physiotherapy, and relaxation/meditation. The centre is beautiful – light and airy, and with beautiful gardens. Most beautiful, however, are the people in the centre: the patients, visitors, staff and volunteers. They really do light up the place, and fill it with the kind of vibrancy and life that wouldn’t normally be associated with a hospice.

This post is already too long, so I won’t write much more. There will be many more posts – about my health, my thoughts and feelings about my illness, life and death, and about my daily life. I’m sorry that this has been so long in coming, but hope that it explains why I’ve been absent from so many social events recently.

I hope to be able to see you or speak to you soon – I may need to adjust my expectations somewhat, but I’m often able to receive visitors (as long as you know that I might be lying down), and am a huge fan of Skype.

Thank you for reading this far, and for sticking with me through these rocky times. I’m determined not to cry (or sound as though I’ve just been awarded an Oscar), but thank you, thank you, thank you.


Until next time, Jo


*FINE = f-ck-d up, insecure, neurotic and emotional