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Annie Storkey

Ups and downs

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:39

Well, I'm now 15 weeks post-covid and I still have the post-viral symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). But my pulse is noticably improving, I am regularly walking two miles in the morning with a normal walking pulse. A brisk walking pulse should be around 110 and I am generally below that; if it creeps higher I stand still and it immediately goes down again which seems to me a healthy response (POTS symptoms tend towards pulse rates being stubborn at returning to normal). My standing pulse is also much better and I can go whole days with a normal pulse.

Absurdly, as my pulse has got better the lightheadedness has got worse. I am no longer having to take gasps of breath when seated as I was a few weeks ago but I definitely lightheaded more often and have 'brain fog', and more prone to morning headaches than before. Ironically, lightheadedness in POTS occurs mainly in a seated position and it is presumed to be due to pooling of blood in the lower legs at rest. The solution is to get up regularly and keep the legs moving while sitting. Good job my standing pulse has improved! I actually find it helpful to work while feeling like this as it distracts me, even if I am not as productive as usual.

I'm hoping all this is just a lag in my system as it gets used to me no longer having as much tachycardia. I'm going to increase the cardio exercise to see if this will stimulate my venous return more. I've also started on low dose rehydration tablets. When I developed POTS I increased my fluids dramatically as per the recommended regime but did not increase my salt intake alongside this as I appear to have a slightly raised blood pressure (BP) post-covid. But my GP is unconcerned about my BP and I'm wondering if my electrolytes are now out of kilter and if I would feel better with extra salt and minerals, as well as retain fluids better.

Anyway, the improvement in pulse rate seems like a positive step forward in recovery.

Annie

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Annie Storkey

When postural tachycardia really is postural

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:38

It's been over 12 weeks now since I developed Covid-19 and although I recovered from the infection in just over 2 weeks I still have the post-viral complication of presumed postural orthostatic tachycardia syndrome (POTS). I've blogged already about some of my symptoms (as a lecturer in health I'm somewhat fascinated by how the body behaves!) but today I thought I'd focus on something I've only recently noticed - the affect of posture.

I noticed several weeks ago that I occasionally got mild air hunger (large intake of breath) when sitting at my computer, and that this apparently was common in POTS. It's a very odd symptom, given the condition, as the tachycardia occurs to improve oxygenation when standing. Clearly both responses are to improve oxygenation but they are very different.

But last week when I took a break from work/study, I found myself sitting at the kitchen table hunched over my iPad and getting increasingly lightheaded and gasping for breath. It was quite distressing as it felt like my breathing was deteriorating, when until then I had only noticed it getting better. I then realised that it improved with better posture, which would explain why I had it then but not sat on the sofa with the iPad in my hand. Interesting that it's positional, I thought, and carried on with life.

Then on Tuesday I did my yoga class. Until recently my post-covid fitness levels haven't allowed me to do a whole session without tachycardia but I'm now walking several miles a day and feel much fitter. I was pleased to do a whole class of mainly standing poses and have no tachycardia. But wait, I have postural tachycardia and can get a fast pulse just from lifting my arms up -why was it okay to do standing yoga? I suspected that the strict yoga posture was the answer and reflected on my walking tachycardia. I had noticed recently that my tachycardia when out for a walk is better when I'm thinking about it but my pulse starts galloping when my mind wanders, only that day it had suddenly leapt from 104 to 135 for no apparent reason. Was it because my posture dropped?

I tried it out today and worked really hard on my posture when walking; chest out, shoulders back and down. And my pulse stayed below 110 (normal walking pulse) throughout my 2 mile walk. Now, this might be because I walk slower when concentrating on posture but I've ordered a simple back brace and will explore this further. It might be a breakthrough at managing my pulse rate.

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Annie Storkey

Getting better

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:40

Today my postural tachycardia seems much improved. It is normal both standing and pottering around the house and when I went for a walk it was within the normal bounds of light exercise (some rise is expected). What was most significant is that it dropped down to normal immediately on rest, which would seem to me to indicate a normal response to exertion. It even has slightly improved when walking upstairs, though it still doesn't like me raising my arms (getting dressed always causes tachycardia). I've also been less fatigued the last few days, despite walking further, and I managed nearly 2 miles this morning.

Obviously I know this might not last; I got covid nearly 10 weeks ago and know how symptoms vary from day to day. But these are all hopeful signs that my routine of increased fluids and increasing light exercise are helping.

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Annie Storkey

Postural Orthostatic Tachycardia Syndrome

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:40

My tachycardia is postural, my resting pulse is around 65 and it goes up to 90 when I stand up - when I first noticed it was up to 128 just walking around the house. It is exacerbated by exercise (walking upstairs can raise it to 110, going for a walk to 125, once 150), raising my arms (carrying laundry downstairs or sitting to chop vegetables raises it to 125, even brushing my teeth raises it), heat (gardening on a warm day made it 140), and eating (rise to 90 when seated). Alcohol sometimes exacerbates it, caffeine doesn’t and might well improve it.

The paramedic on my second trip to casualty did a seated and standing pulse and BP and suggested Postural Orthostatic Tachycardia Syndome. I have since researched this (I am an ex-nurse) and it fits my symptoms and circumstances, especially as a post-viral autonomic response. I have instigated suggested lifestyle changes including increased fluid intake, slow transition on rising, wearing light compression running leggings, gentle yoga and taking a daily morning walk with regular rests and water. 

I think water intake has had an enormous effect. Taking water 20 minutes before getting up in the morning has resulted in a normal pulse on rising. I can now, most days, walk around the house without tachycardia as long as I keep my fluid intake up. My morning walk pulse is gradually improving too. Arm raising is still an issue but I am aiming to increase my upper body strength with seated and supine yoga.

I have to avoid fatigue, though. If I push myself too far I can get fatigue for the next few hours or even the next day. The best solution for the tachycardia is to sit on the floor cross legged, that results in an immediate drop in pulse. If I am outside I stand with legs crossed.

Obviously I am in a better state than many people recovering from covid as I was not hospitalised and did not spend my symptomatic two weeks on bed rest so my body is not very deconditioned. I am well enough to do my usual online teaching job and carry out activities of daily living despite my tachycardia. But I thought I would share my experience of dealing with post-covid tachycardia in the hope that it might be useful for other people.

(Hopefully once I’ve beaten the tachycardia I can find a solution to my strange lung pressure issue! I can’t bear high air pressure and get air hunger, especially at rest. I’m hoping increased exercise will lead to greater lung expansion)


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Annie Storkey

Standing up

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Edited by Annie Storkey, Friday, 12 June 2020, 11:58

Today, for the second morning, I got up and did not have postural tachycardia. The key is to drink a glass of water 20 minutes before rising and to get up slowly, keeping the knees bent and slightly leaning forward.

I have also managed to walk around the house without getting tachycardia, there's a small rise in pulse going upstairs but within normal limits. As long as I keep my fluids up I feel I'm winning the battle. Going for walks is proving more of a challenge, I'm trying to keep the pulse below 110 (for a gentle amble) and this is fine for the first 5 minutes; I slow and drink water when it starts heading for 110. It can suddenly jump to 120 and I stop and cross my legs over, as I know if it sustains at 120 it will trigger fatigue. It is so unpredictable, it can be 120 and then drop to 85 on standing still and then stays at 95. There seems to be no rhyme or reason. I'm guessing variations of fluid levels alter it. Last night it suddenly shot to 150 while walking despite me not feeling any different. I'm hoping that, just like my standing pulse has improved, my walking pulse will also get better over time as my venous return improves.

Then it will be upper body I need to work on. I currently get a rise in pulse every time I raise my arms, even brushing my teeth gives a slight rise and getting dressed also triggers it, let alone doing the laundry or sitting to chop vegetables. But I figure upper body strength will be helped by Iyengar yoga and I need to practice getting back to standing poses to get the full benefit. At the moment at home when I get tachycardia I sit crossed legged on the floor and it returns to normal - I managed to play boules sitting down at the weekend smile

Annie

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Post-covid recovery

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:41

This morning I stood up and did not have tachycardia. I even managed to walk to the bathroom with a normal pulse. Admittedly it did increase when I brushed my teeth (and more so when I got dressed). But this is quite a development. Let me explain.

On the 17th March 2020, a couple of days before lockdown, my 15 year old developed a cough. Just a mild occasional one, not a hacking cough, but the warning signs were there and we went into isolation. He never developed more than this mild cough, though it went on for at least 6 weeks. Several of his friends also had it and apparently a parent of a fellow pupil had a positive covid diagnosis.

The next day I had a cough and sore throat so called in sick. I had mild fatigue but never developed a fever. I felt better after a few days and told my manager I would be back after a week and I duly returned to work. Later that evening I developed shortness of breath and chest tightness. This later developed into a central chest pressure where it felt I might stop breathing, exacerbated by exercise. But on day 16 I felt better. On day 17 I even phoned a student and a work colleague, with just mild shortness of breath.

On day 18 it all changed. I was overcome with extreme fatigue and shortness of breath on exertion. Over the next few days I developed anxiety and panic attacks. Then the fog lifted and I realised that what I really had was tachycardia. I had tachycardia when standing up and moving around and it seemed to be getting worse. It appeared to be autonomic, as I also developed a severe aversion to food which was clearly not gastric; I had to do breathing exercises in order to eat. Eventually I could stand it no more and went to casualty.

After a thorough check up all they could find was sinus tachycardia with a mild rise in blood pressure. The doctor suggested maybe a mild myocarditis which would improve on bed rest. As one of my bloods was slightly raised I was started on anti-coagulants and would have a lung scan to check for a clot on Monday.

The next day I felt awful, presumable due to the anti-coagulants. I spent the day in bed (where, incidentally, my pulse stayed in the 60s) but got up in the evening. I had a massive surge in pulse with chest pain and resultant panic attack and ended up in casualty again. Here an x-ray was taken and the doctor reassured me that he did not think there was anything wrong with my heart or lungs (I think he thought I was just an anxious patient, a common problem for tachycardia patients but I am also bipolar which colours perceptions). 

The lung scan was normal and the doctor in the acute admissions clinic sympathetic and interested. I’m on a waiting list for a 24 hour ECG and echocardiogram.

The paramedic earlier had told me he thought I had Postural Orthostatic Tachycardia Syndrome (POTS) and I looked it up; it fitted everything I was experiencing. The tachycardia on standing and moving around, exacerbated by lifting my arms (chopping vegetables gives me a pulse of 125!), the shortness of breath and chest pain, even the panic attacks. Over the next few weeks I recognised other symptoms such as tachycardia after eating, heat intolerance (my record tachycardia was 140 on the VE bank holiday due to gardening in the sun) and air hunger when sitting and concentrating. It is now 8 1/2 weeks since I developed my assumed covid symptoms yet I’m still recovering from the experience. The prognosis for POTS due to a post-viral Dysautonomia is generally good and I instigated rehabilitative techniques early, an advantage of being an ex-nurse who uses cognitive behavioural therapy daily to manage mental health. But I’ll discuss that in another thread.

Annie


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Anxiety in context

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:43

I had a mammogram yesterday, just a routine call up because I am 50. The leaflet that arrived with my appointment was very detailed about the pros and cons of screening, as a part of the informed consent. I found it an interesting read as we explore the ethics of screening as part of K219 'Critical issues in health and wellbeing'. My husband was quick to ask how I felt about going for screening and whether I wanted to.

But I have no anxiety at all about health screening. My anxiety in my bipolar disorder is caused by unfamiliar environments and I've worked in health and social care, practice and teaching, for over 30 years. There is nothing unfamiliar about anything health related, I live and breathe it. I have no fear of dentists either, I see being jabbed with needles in the mouth as a parallel with me having spent years jabbing needles in people's eyes. 

But, obviously, many people with mental health challenges do find screening a cause for anxiety. This is because people's experiences of disability and mental illness are individual and contextual. This is one of the criticisms of the social model of disability, that it sees disability in the form of barriers that society creates but neglects the individual and how they see the world. And it's the reason why I'm a fan of a more emancipatory approach, which promotes voice and participation. The social model is very useful for breaking down barriers, especially physical ones, but its time to empower disabled people to take control and this can only be done by respecting their individual needs.

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Managing lows

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Edited by Annie Storkey, Friday, 3 Dec 2021, 13:47

I openly discuss my bipolar disorder so it sometimes comes up in tutorials when we are discussing health theory or disability. Recently I was discussing the concept of 'curing' in a K219 tutorial and one of the examples being discussed was mental health so I gave my personal opinion. I enjoy the positive reactions I get from students when I discuss my mental health, students are very encouraging on the need to reduce stigma and often come out with their own experiences. Someone mentioned how mental illness can creep up on you and I acknowledged this, pointing out I often don't realise I'm manic until well into an episode, partly because it is enjoyable, and the need to have a confidant who is able to recognise and discuss it with you. A student then said 'What about the lows?' and I realised that I very seldom discuss the lows.

I don't have lows very often, my bipolar mainly features hypomania and I seldom have deep lows since the first ones I experienced when I was first diagnosed 20 years ago. Manic depressives are often diagnosed during a depressive episode, mania can be enjoyable but depression isn't. McKeon (1995) suggests that the first depressive episode is often triggered by emotional stress switching on a genetic mechanism. Mine was triggered by my father becoming seriously ill and almost dying. 

I discussed my mental illness at a church meeting this week and my husband said that he could detect my mood swings and we then worked together on strategies to manage them. Later I challenged him on this; he actually identifies my manic periods but not my depressive ones. Mania is a very public thing, it is outward in its appearance, but depression is quite private and inward. I can't always tell I'm depressed myself until well into a period, it creeps up on you as noted earlier but it is also difficult to tell what normal is if your moods are usually abnormal. 

I've had marking over the last few weeks and I've been prevaricating over it. Now, finding displacement activities to avoid marking is quite normal, I'm sure, for most ALs. But it was when I was crying at the thought of it that I realised that I was depressed not just avoiding work. Recognising it meant I could develop strategies to manage it. Firstly, giving myself very small goals, perhaps 2 papers to do,  to make it manageable. I often find if I set myself to mark 2 papers I actually mark 4 as starting is often the hardest thing and once I'm into an activity it provides a welcome distraction from my emotions. I also prepare myself mentally, physically and spiritually. I make sure I go for two walks a day and get some fresh air and exercise. I eat healthily and take vitamins. I meditate and say a prayer before working (non-religious people might consider an activity such as writing down some positive things to be thankful for and some short term, achievable goals). I take regular breaks and have a cup of tea.

So, why I am I writing this? Well, in my experience, students with mental health challenges often face similar struggles when writing an assignment; it becomes a big wall that seems impossible to get over. As ALs we need to recognise these hurdles are real issues and work with our students to overcome them. Acknowledgement and empathy is the first priority alongside open channels of communication so that students can voice their fears and anxieties; this does much to reduce the burden. Work with students to come up with achievable goals over a period of time, perhaps just listing key points at first, then developing a plan for an essay, then tackling a paragraph a day so it does not become overwhelming. Plan ahead to the next assignment so that they are prepared in advance. Encourage them to look after their physical health too, to take regular breaks and get some rest. Most of all, let them know that you value them and you are on their side, even if their decision is to take a break from their studies. 

Most importantly, listen to their voice so you can empower and support them to achieve their potential in whatever way they can.


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It's done!

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:46

I've finally submitted my application for doctoral research. And i don't even feel anxious about it (that may well change!), just an overwhelming feeling that this is the right time and what I need to do. It helps that it is a subject that I feel passionate about - students with mental health challenges. I feel very happy to take this next step on my journey.

And it's just occurred to me that I am sharing my 50th birthday with the OU this year. What a good year for both of us.

Annie

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Time out

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Edited by Annie Storkey, Friday, 12 June 2020, 12:08

Well, I've just finished the marking marathon of November so thought it might be a good time to reflect on how I am getting on with my increased workload.

October is a month of welcoming and signposting, phoning students and getting to grips with module structures; a busy but enjoyable time as you meet new people and learn new things. November is a different beast - virtually every module has an assignment due in November which needs marking.  Marking is by far the most labour-intensive parts of an associate lecturer's role and also one of the most important. Not only is it part of a student's continuous assessment, it is also one of the main ways ALs use to communicate with students and advise them of their progress. So it is important to do it properly, hence the time consuming nature.  In my case I had 4 lots of assignments over a 3 week period from the end of October. I'm now on a week's break from marking before more 3 lots of assignments submitted over 2 weeks. It's a bit hectic!

Of course, by break I don't mean a rest; I have 3 tutorials to plan and deliver in the next 2 weeks as well as as the usual emails, forums, admin and telephone calls as well as staying up to date with the 3 new modules I'm teaching. But it does mean the pressure is off and I can relax and take stock. Being a great believer in the connection between physical and mental health I'm also using this week to detox and take some mental health walks.

So, on reflection, how has the last month gone? Well, I got all the assignments back on time. The first ones were returned very early due to my increased hours allowing for more efficient timetabling. My last lot only just got back in time but that's how they fitted in the bigger picture so that's okay. I paced myself well; I decided in the end not to fill whole days with marking but break my days up which will have implications how I manage this period next year when I hope to be studying a PhD alongside my teaching. 

Most importantly, my bipolar disorder seems to be under control with no adverse effects from the increased hours. I am neither more manic nor more depressed than usual, despite being tired by the end of the last marking period. The last lot of marking was a slog and I had to give myself several pep talks but it worked. I am approaching my work this week with a positive mental attitude and am also keen to get back to work on my research proposal tomorrow. So all in all a win.

Annie

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Happy mania

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:49

This afternoon, I went for a walk across a nature reserve in the blustery wind and it was wonderful, I felt so alive and part of the landscape. I could feel the wind around me and was filled with joy to experience the wonderful world we live in. I have 'happy mania'.

One of the main consequences of self-managing my bipolar disorder is that my normal mental state is one of mild hypomania. Whilst this has some drawbacks, including potential lack of concentration and slow processing of information, it is also a wonderfully creative place to be. A bipolar friend describes my normal state as 'happy mania' and professes her jealousy of it.

You see, whilst my 'happy mania' can hamper my ability to comprehend if it gets out of control, it expresses itself in an enormous capacity to feel. When I was a child my mother used to say I had second sight; that I could feel atmospheres and read situations. Later in life, when my father had respiratory failure and my mother had to make that difficult decision for the ambulance men not to resuscitate him, it was me she asked afterwards if it had been the right decision (it was). I can still read people like books and I genuinely like people and find them interesting, even those I vehemently disagree with. My empathy shows in quirky ways, like unconsciously changing my accent according to who I speak to. What my happy mania gives me is a heightened perception of what is around me and for that I am glad; it's a feature not a bug. 

Nature has a great capacity to bring healing to those with mental health challenges and I recommend daily walking as a means of escaping the stresses of everyday life. You might not come home as buzzing as me but the exercise will do you good and you might find some spiritual solace.

have a great weekend

Annie

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New blog post

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:49

I recently decided to increase my work hours. It was something I had wanted to do for a while and this year finally presented an opportunity for me to apply for several appropriate modules. I had a firm idea of the number of hours I wanted to do and was lucky enough to get offered modules that met this requirement; in fact, I had to turn two modules down.

So why did I want to increase my hours? Well, the most straightforward answer was that I had time on my hands. My children are now teenagers so I need to be around less for them and I wasn’t studying last year so I was bored. I needed something more challenging to do with my life, which brings me on to my main reason for taking on more work; I wanted a career again. I now had the time and opportunity to make a serious career in academia, I was applying for a Doctorate and the time was right to make a big step forward.

I also hoped that increasing my workload would provide more structure to my life. Only working a few hours a week can create a feeling of being disconnected but by increasing my hours I could formalise my days. This isn’t just important for getting my own work done and managing my own haphazard mental processes but also also ensures my new workload is recognised at home. Like many work-at-home parents, most of my work is hidden. My family need to know that I have work to do, that I can’t just drop everything to pop to the shops for them. So, by having firm perimeters my status at home changes. If I want to successfully build my career my work must be visible at home as well as among colleagues.

To do this I have given myself 3 full working days plus the necessary flexibility for the odd evening or weekend tutorial to make up my hours. I also have a day set aside for study; this year it is used for background reading and small projects, next year it will be part of my PhD timetable. I’m only 2 weeks into it but I can see how it will be effective in organising my time and I feel purposeful. What I hadn’t anticipated is the difficulty switching off in between work days, I have a constant urge to check my work email and forums. As someone prone to hypo-mania this probably isn’t surprising but I’m hoping this will settle down as I get used to the pattern and as my students settle into their modules – routine is the key. But yesterday (my day off, otherwise known as the day I do the housework) I managed to switch off completely. I will keep monitoring how I am keeping to my timetable as the academic year progresses and the workload varies from week to week.

Annie


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Don't shoot - I'm disabled

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Edited by Annie Storkey, Friday, 12 June 2020, 12:11
I had intended my first blog of the academic year to be about the trials and tribulations of being an AL, preparing for new modules and incoming students and then having your pc die a sudden death during an online meeting on the first day back (agonising enough for anyone but especially for a manic depressive who keeps her anxiety at bay by having an impeccably structured life unhindered by nasty surprises). But today I read an article on the BBC was website which moved me deeply and I felt I had to write on that instead.

https://www.bbc.co.uk/news/stories-45739335 This article is both shocking and very, very sad. These people who died were unarmed and not committing any crime; one was naked in his shower. What they all have in common is lack of communication, some of them had learning difficulties or mental health challenges which meant they did not understand the commands they were given, one of them was deaf. 

Hey, wait, let me back track a little. It wasn't these communication difficulties which caused their deaths but the poor communication skills of the police.

This is not a blog on guns or police policy in the US, I value my sanity far too much for those discussions. But these police officers seemed to go into situations using aggression from the outset, shouting at the person even in the situations when they knew the person was disabled. Were they not taught any communications skills during their training? Do they act like this in their everyday lives? Do they not know anyone disabled: do they fear them or think them sub-human?

I've had bipolar disorder for 20 years and know lots of other people with the same condition. If someone is in a manic state, aggression will just heighten it and stress can be a big trigger. Manic depressives can also have problems processing instruction so even if they are listening to you they still might not have the foggiest what you want them to do. Similar issues happen with other mental health issues. But this goes far beyond disability, it seems that some people in authority think aggression is an acceptable way to carry out their job and that challenges can be met with violence. There needs to be far greater education on understanding the needs and experiences of people with disabilities, especially mental health and learning disabilities, and the communication skills needed to communicate effectively with them. But these are skills which will benefit all people, they are basic rules for engaging others in all walks of life in a respectful way. We need to resist a culture which thinks 'shoot first, ask questions later'. A little empathy will go a long way

Annie

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Unsettled

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Edited by Annie Storkey, Friday, 29 Oct 2021, 16:50

Like many people with bipolar disorder, I have a problem with anxiety. Stress is a major trigger for bipolar disorder and my main method of controlling my stress, and consequent anxiety, is to meticulously plan my life. I don’t like surprises and I try to limit my exposure to them. Friends know not to turn up randomly on my doorstep and I plan my work diary efficiently with achievable goals. And this all has a positive effect on my working life as it means I am able to meet deadlines and have the time and space to manage any extra issues that crop up; phoning worried students, covering for colleagues, etc. I live a very organised life.

But it does mean sudden, unplanned changes to my routine make me anxious. Perhaps in some ways the method I use to combat anxiety can also cause it and today is a fine example.

We’ve been planning to get a new drive for several months but pinning builders down has been difficult. But suddenly we had an offer to do it today so we snapped it up.

Today I had planned to spend the whole day working (I work part time). I would spend the morning doing admin, sending weekly emails to my students, planning a tutorial, updating forums. This afternoon I would do marking. This was all in my diary. But my day has been unsettled and I cannot get my head around my work. The builders aren’t that noisy, I’ve heard far worse. But they seem to insist on the occasional social interaction which involves discussion which I don’t necessarily know the answers to (and numerous requests for tea). They also keep telling me things which they say my husband agreed but I am not so sure. To make matters worse, they cut through the internet cable first thing (I am currently borrowing the neighbour’s wifi, with their permission) so I have no landline and no way of phoning my husband, who has since reassured me via email that he will try to work from home this afternoon. But I need to feel settled to work properly and at present I am on edge. I know there’s no point in marking this afternoon.

My usual daily routine involves an afternoon walk and that would do my mind the world of good but I don’t want to go outside and speak to the builders. I suppose I could sneak out the back but what if they need me for something while I’m gone? More anxieties raise their ugly head.

The marking will get done this evening when the builders are gone, the world is quieter and all is well again. But I do know the next time we have builders that I’m going to plan to spend the day at a museum or gallery instead.

Annie


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Cloudy with sunny intervals

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Edited by Annie Storkey, Friday, 12 June 2020, 12:13

I’ve been thinking about writing a blog for some time now, partly prompted by the debates about equity and diversity in education studied in my recently completed Masters. It was always clear to me what my main focus would be as it is a subject close to my heart. But my personal knowledge of the field also meant that I needed time to think about my approach, as it is a subject that makes some people uncomfortable.

An example of this would be at a recent seminar when we were asked to find out more about our neighbour. I enthusiastically discussed my disability, my management of it and my passion to be an advocate for others like me who were less able to have a voice. By being open and frank about my experience I could empower others to speak out and remove the stigma associated with it. But when we fed back to the main group, my new friend did not name my disability, it was my ‘sensitive issue’. And this has been my experience on many occasions, no matter how frank and open I am and the permissions I give to discuss my disability, others are still reluctant to call it for what it is. It is a ‘personal difficulty’ or a ‘time of difficulty’. I’m sure you’ve guessed what I am referring to, it is my mental illness; I have bipolar disorder.

It is hard for someone who has never experienced mental illness to imagine what it is like and the unknown can create fear or misunderstandings or incomprehension. Likewise empathetic people don’t want to say the wrong thing, to offend or upset someone. Or fear they might breach a confidence (something perhaps we are even more sensitive to in my own field of health and social care). And these are all valid explanations. But they are also the reason that I want to be open about who I am, so that others can have an insight into what life is like with bipolar disorder and to encourage other manic depressives to speak out.

Culture and upbringing have a big influence here. I was brought up in a working class family where disability was visible and cared for within the family. My mother had poor mobility and my twin brother was born partially sighted and attended a school for the blind. My happy childhood memories are of visually impaired children charging around on horseback. I grew up with a very positive perspective on disability, and especially visual impairment, which eventually led me into specialising in ophthalmic nursing (where patients would comment on my very natural and relaxed approach to guiding). When I was diagnosed with bipolar disorder I was supporting newly registered blind and partially sighted people to come to terms with their blindness so had a practical knowledge of identity and disability.

But not everyone feels this way or has these experiences. In the summer I attended a Christian festival with a reputation for inclusivity. The Sunday morning communion was entirely presented by disabled people and was a joyful experience for me. But when I turned to a close friend and asked him what he thought about it, I was amazed to hear him say that he found it very negative. Momentarily shocked into silence (which doesn’t happen often) I asked why and found he was sad that so many people had to live with these problems. In K213 Health and illness we look at the research of Blaxter (2010) into lay people’s understandings of health and illness and his responses are similar to how she found other highly educated, well off young men view health, focussing on absence of disease and physical fitness.

Our culture and experiences construct our perspectives so divergence of opinion is to be expected. If attitudes towards mental illness are to change there needs to be a cultural shift away from stigma, shame and silence. I want to use my voice to embolden others to share their stories so that there is a wider understanding of the lives of those with mental illness. As an Associate Lecturer I particular want students’ voices to be heard so that we can have a greater understanding of their needs and facilitate them in a way which maximises their potential, and next year I hope to start doctorate study to research into the experience of distance education in those with mental illness. By looking at how it experienced now I hope to develop an understanding of how education should be delivered in the future.

Annie

(The discussions in this blog are my personal opinions and not necessarily the views of The Open University. I’m a reflective practitioner so they might not necessarily stay my opinions either smile )


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