Staying home, some tips

I have spent a lot of time unable to leave my house in the past, and none of those periods have had a known end date. This means dealing with isolation, cabin fever and no idea when it will end, something a lot of people are facing right now. So I wanted to share some of my learnings…

First, if you are used to working outside the home, think about what work does for you. Yes you get paid but you also get to interact with people, leave the house, use your brain, be creative, problem solve and work adds to your self esteem and sense of worth. For me, this has translated as five things I aim to do each week:

  • Something creative – art, craft, writing…
  • Something that uses my brain – a crossword, scrabble, reading, learning…
  • Talking to someone who is not a carer – ideally this would be in person but there are times when this might be a phone call, a skype call, an email or some other virtual way
  • Checking in with my emotions – maybe doing tarot, journaling or whatever works for you. Expect to have complicated feelings that don’t necessarily make sense. Make space for emotions.
  • Finally getting outside the house. This is clearly not an easy one to meet right now. However, you can go into your garden if you are lucky enough to have one. If you don’t, you can open your windows to let some air and bird song in. I’ve also written about ways of connecting with nature when you are stuck in the house.

A few other things that might be useful to note include:

  • Allow space and time for emotional exhaustion
  • Expect to spend more on utilities during this time. You won’t be using work gas, electric and water and that will add up.
  • Keep to at least a loose routine, especially during week days.
  • Get dressed. Yes you can have a few pj days, but make the effort most days. You will feel better for it.
  • It’s ok to laugh. Gallows humour is a way of coping with difficult circumstance.

Then comes the question of how you are going to pass the time…

  • Online contact
  • Online learning
  • Reading
    • Don’t set yourself up to read all of War and Peace. Be realistic about how your energy levels and concentration are being affected. All books are valuable and you can read children’s books and young adult fiction even if you are in your 90s.
  • TV
    • All of Criminal Minds is on Prime, that’s a lot of episodes!
    • Comedy series’ on Prime – Modern Family, Life in Pieces, The Middle
    • Documentaries on Netflix – The Pharmacist, The Trials of Gabriel Fernandez, explained, 60 days in,
    • Fun viewing on Netflix – You Me Her, Clueless, One day at a time, Grace and Frankie
    • Please share your own recommendations for films, tv and books below!
  • Think about all those hobbies you always say you’d like to try, now is the time. Take up knitting or paint by numbers or cooking. Whatever it is, you will find a tutorial out there.
  • Write yourself an isolation bucket list – film nights, skype coffee, cleaning out that cupboard you never get to…

BUT also prepare not to do all these things. All the news and uncertainty takes an emotional toll on people, and makes us feel tired even if we aren’t doing much. Think about small, bite sized activities and intersperse them with rewards such as lunch, a cup of tea or an episode of your current go to tv show.

These are strange times and if you aren’t used to being stuck at home, it’s likely to feel very constricting but I thank you so much for doing what you are doing. By staying home, you are helping to reduce the spread of coronavirus and keep those of us who are vulnerable safer.

Other related posts
FOMO and chronic illness
Goals, aims and ambitions when you’re retired/ill

Illness as an identity

First, I know this will be a controversial topic. I found a thread on Twitter with many chronically ill people ripping the idea to shreds. So I want to be clear, this will not apply to many people who are chronically ill. However, I’ve known people where this has been the case and who often don’t see for themselves that this has happened.

So, what kick started the twitter thread, and this post, was a psychologist (I think) saying that for some chronically ill patients, their illness has become their identity.  Not just something they identify with, but their entire identity.  The person was saying that for these patients, engaging with the healthcare system to the degree that they do is not always helpful and can actually be harmful, physically or psychologically.

She went on to talk about using the twelve step program traditionally used for addiction to help this subset of patients and I don’t want to talk about that.  I don’t know enough about the program and what I do know, doesn’t always sit well with me.  But the issue that many chronically ill people were having wasn’t with the 12 step program, it was with the idea that what she was saying was basically patient blaming.

The initial tweet was followed by a number of versions of “I don’t want to be chronically ill, I don’t choose this” which I think is problematic in the context of addiction as addicts don’t chose addiction. But it’s also problematic because people are saying this doesn’t apply to me and therefore it must not be relevant to any chronically ill person.  An overlooking of the fact that the psychologist was talking about a small number of chronically ill people.  Chronic illness isn’t a unified group, for starters there are many different ways to be chronically ill and different people are at different stages of the psychological work that goes with being chronically ill.

After reading this twitter thread, I went on to do some research about the idea of illness as identity and much of it confirmed what I thought.

There are different ways people react to chronic illness and I’d like to point out that that doesn’t make for better or worse people. We all deal with things differently, based on our life experiences and personalities.

Visualization of the four illness identity constructs.
The dot represents the heart disease and the circle represents identity. Illness Identity

Whilst the above diagram is focused on heart disease, the model works for chronic illness more broadly.  There are four routes which patients tend to go down:

  • Engulfment
  • Rejection
  • Acceptance
  • Enrichment

And the patients that the psychologist was likely talking about were those who become engulfed by their illness.

Engulfment indicates the degree to which patients feel that their disease dominates their identity. These patients completely define themselves in terms of their disease.”
Illness Identity

This seems to me to be the group of people who spend vast amounts of time at the doctors or hospital when its not really necessary. Who call the doctors at the first sign of what is likely a “normal” issue- a sniffle, a cramp, extra fatigue- and who don’t consider that it could be a “normal ” issue or a response to something they’ve done. Or who only ever talk about their illness.

“When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His  or her self-identity will then be formed around being a patient as he or she identifies with the sick role.”
Chronic Illness and Self-Identity

I know people who in theory want to do x,y,z but who use their illness as a way to avoid even attempting it. I’m talking here about things which are achievable within that person’s limits but which never get attempted because of the way that illness is consuming them.

I’ve known people who’ve had surgery after surgery for an issue that surgery will not cure. I’m talking here about 20 surgeries on the same joint even though all the literature advises against any surgery. This life then becomes about surgery, being a patient, recovering and repeat. It seems to be reasonably clear that something else is going on here. That the person is using surgery to try and meet some need, whether that’s the hope of a miracle or the attention and care that comes with the cycle. These are valid needs but there are other ways of meeting them.

On the other hand, I know people who vehemently push against their illness, pretending it isn’t there and that has its own issues.

“Another construct pertaining to illness identity is rejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self.  Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.”
Illness Identity

I think most of us go through stages where we dip in and out of the different categories and that is ok, our health changes, our life changes.  And of course having a chronic illness is likely to affect how you think about yourself, how you see yourself and your identity but everyone is more than their illness.  An ideal end point, especially if there is no known cure for your chronic illness, is acceptance.  This is not about denying the illness but about trying to live your life with your illness.  Acceptance gives you resilience, adaptability and a better quality of life.

Although it is a constant process, one that is never completed,individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity… when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable.”
Chronic Illness and Self-Identity

And on a final note, I have ehlers danlos syndrome, I am not ehlers danlos syndrome. I am Helen. I am a writer.  I am an artist, a friend, a reader and so on.

Links

Do all disabled people think the same?

Clearly the answer is no.  But this is an interesting video which asks some interesting questions and I wanted to share my responses.  I realise this comes on the back of another blog post where I respond to questions but I’m not anticipating that this will become a trend.

Am I offended by the word disabled?

I know this is something that bothers some people, and different places have different preferred language.  For example in the UK, we tend to speak of disabled people whereas in the US, people with disabilities seems to be the preferred option.

Anyway, back to the question.  I have no issue with the word disabled.  It describes my situation and is vastly better than some of the alternatives such as differently abled or special.  I do think it’s important to remember that disability, or being disabled, is more than just wheelchairs though.  It covers physical, mental and learning disabilities and I do think that the symbol of a person in a wheelchair is too narrow.

Does this country provide enough resources for the disabled community?

It doesn’t matter where in the world you are, the answer to this is no.  Of course some countries are doing a better job than others but disability is generally underfunded, under-acknowledged and misunderstood.  There are still so many taboos and stereotypes out there and these damage opportunities for disabled people.

Are most people ignorant about my disability?

For my particular disability, things are getting better.  There is more information about there about my condition.  In terms of using a wheelchair, there is a lot of ignorance.  People still think if you use a wheelchair, you can’t stand or walk at all.  This is the case for some people but many of us can get out of our chairs.  Related to that is the idea that disability looks a certain way and anyone who doesn’t fit that image must therefore be faking.

Do I appreciate it when people offer me help?

I was in town once, in my wheelchair outside a shop waiting for my friend.  I was trying to put my coat on.  Someone came up behind me, I hadn’t heard them, the first I knew was when they grabbed my coat and started trying to help me.  I do understand it was meant well, but it could easily have led to my shoulder dislocating.  Please, do ask if you think I need help, but don’t just thrust it upon me.

Also, if you do want to help and have asked, listen to me as I probably know how best you can help me.

Is dating difficult?

Yes.  Dating requires being vulnerable and that can involve another layer of vulnerability when you have a disability.  There are also all the should I shouldn’t I’s.  You want people to see past the disability but also, especially if you’re short on energy, you want to meet up with people who aren’t going to turn out to be prejudiced.  And there are a lot of people out there who don’t see disabled people as sexual beings, people who wouldn’t consider dating a disabled person and people who assume that dating a disabled person means you become their carer.

Have I felt like a burden?

Yes.  In general, my friends don’t make me feel like a burden but strangers do all the time.  Whether it’s when I’m asking to squeeze past in my wheelchair or need a hand moving chairs in a cafe, there does seem to be two reactions.  The people who think nothing of being helpful and those other people who really make you know that they have had to go out of their way for me.

Would I change my disability?

This is an impossible question.  I would love to not be in pain 24/7 but I also wouldn’t be me if I didn’t have my disability.  Without it, I have no idea what my life would look like.  I’d be on such a different track and whilst that’s intriguing, there are things in my life that I really value that wouldn’t be with me without my disability.  I wouldn’t have had as much time to write and do art and learn about tarot and astrology.  I certainly wouldn’t know as much as I do about nature.

Am I living a fulfilled life?

When read with the above question, I think the answer has to be yes.  It’s a different life but it’s one that I have put time and effort into creating.  And even without my physical disability, I’d still have had to overcome my mental health issues.  I know what I need to do in order to feel fulfilled.  I learn, I read, I think, I create, I go out and I chill out.  Retiring meant I had to figure this out, it was that or living in a groundhog day world where I did the same nothingness every day.

Guilty until proven disabled

Guilty until proven disabled

Perpetual fear

Neverending stress

Constant foreboding

And continual dread.

Fight and battle

Battle and fight

Repeat, repeat, repeat…

Misunderstanding.

Invalidating.

Minimising.

Erasing.

YOU. ARE. ABSOLUTELY. FINE.

Disrespected. Intimidated.

Manipulated. Humiliated.

Scrutinised. Patronised.

Head crashing

From the brick wall

You’re bashing against.

Prepare to feel guilty.

Prepare to feel paranoid.

Judged a fraud?

You’re a liar, undeserving.

Judged disabled?

You’re worthless, a burden.

And the trial doesn’t cease

If you pass the tests.

The walls have eyes

And the public are spies.

Perpetual fear

Never-ending stress.

Fight and battle.

Battle and fight.

Repeat

Repeat

Repeat…



Today I spoke at a seminar for International Day of Persons with a Disability.  The event was centred around the benefits system and the experiences of disabled people.  When I was asked to be involved, I started pulling together my thoughts about the benefits system and resulting blog post began to turn into the poem above.

A few snippets from the notes I made when listening to other people at the seminar:

The process and system exacerbates conditions.  It is ineffective.  Inappropriate.  And a waste of time and money.  It does not get disabled people into work and may even move them further away from the world of work.  It is unethical and inefficient.

Failures in the system are plunging people into debt, leaving them unable to buy food, making people reliant on friends and family and charities just so they can survive.

“It just smashes your self-worth.  You’ve got to lend money, you’ve got to beg to borrow… you don’t know when you’re going to get money to pay it back”
– Disabled woman, quoted in an ESRC report

Disabled people are under siege from the very system that should be supporting us.

The DWP are stealing dreams and hopes and futures.

FOMO and chronic illness

It’s not a phrase I use, so in case you’re not familar with it, FOMO is the fear of missing out.

Meg, from That Hummingbird Life, sent out an email recently about FOMO:

Whether it’s feeling like we should have done things in the past, getting caught up in thinking we need to do/buy something because we’ll regret it if we don’t, or feeling like the odd one out, it’s fair to say we’ve all experienced it.

It’s something I’ve had to deal with, although I’m not sure I’ve been especially conscious of the process, because of my pain. There are obviously many things I can’t do and I have to be more choosy about what I do do. Which almost makes it easier because there are physical consequences to trying to do everything and I know I physically can’t do everything I want to do. One, probably less helpful, way I have dealt with it is by mentally blocking out things which aren’t an option. Most of the time I don’t think about me going on holiday, even when talking about other people’s holidays, because it’s probably not going to happen.

More helpfully, I sort of approach FOMO in terms of compersion or shepping naches. The first is a term used mostly in terms of poly relationships and the second is a Yiddish phrase. Both essentially mean getting pleasure from seeing someone else get pleasure. For compersion, this might be feeling all full of love when you see your partner is in love with their other partner. For the Yiddish, it seems to be used mostly for the pride or gratification that a parent/teacher/grandparent gets when they see their child enjoying themselves or achieving something.

This can be tricky, but for me it basically means that I don’t get jealous when someone is doing something awesome (well, I do sometimes…). I see it as something that is making them really happy and I am happy when my loved ones are happy. We are a very individualistic society and are socialised to think “I want that” when we see someone with something, even if we don’t actually want it. I think part of FOMO is tied into that. When someone is telling you about something brilliant they’ve done or are doing, a part of us leaps to I want that or I should want that or I should do that. By doing this, we miss the awesomeness of just basking in the glow of someone who feels great.

Maybe my thought process might help explain..

Person A: I have just been on a great holiday…
Person B: Oh, I’m so jealous, I really want/need a holiday (this may be said, thought or internalised somehow)
Person C: Oh that’s great but shit, I should be going on holiday/wanting to go on holiday/all my friends love travelling what’s wrong with me…
Person D: Brilliant, tell me more about it, I’d love to hear the details and see some pics (might have a moment of longing or holiday lust but goes back to listening to person A and living the experience through them. I want to say living vicariously but that, to me, has negative connotations.)

Person B and C are probably going to experience a bit of FOMO and think they should be going on holiday and possibly to the same part of the world because A had a great time and they want to join in.

Person D is getting the magic of A retelling the adventure and seeing A smile and engaging with A. Person D is experiencing something different to the holiday itself but it’s still it’s own magic. Person D, for whatever reason, hasn’t got bogged down in what they don’t have or aren’t doing. They are focusing on what they do have which is a great friend who’s wanting to share, rather than what they don’t or can’t have, namely a holiday.

Person D is probably more like a parent filled with delight when their child comes home from school full of excitment about their spelling test going well and having a great time playing with their friends and having been invited to someone’s house for tea for the first time.

We are so socialised into needing everything for ourselves that when we hear about something we can’t be part of, we sulk and we kick off. Not because we want the thing, but because we are conditioned to want everything, especially if someone else has it and we don’t.

I think, for me, the other important aspect of how I approach FOMO is prioritising! I have limited energy and know that if I do something on monday, I need to rest on Tuesday etc. I have no choice. If I ignore this and book something in monday and tuesday, tuesday’s thing will probably end up a write off. So I have to figure out what I want to do most, and this is helpful in living authentically anyway. So I’m faced with x and y, which initially I want to go to both of. But then I stop and think and maybe x is more interesting or y is similar to something I’ve done recently or actually, I didn’t want to do y but I felt I should. X is the winner! And I will enjoy x a lot more than if I tried to do x and y because I would break myself doing both and would spend all of x worrying about how I would get through y. Essentially, I do fewer things but with more heart. The same goes for friends, I go for quality over quanitity both in terms of the actual people and the way I spend time with them.

And if there’s something that you do really want to do, do it. Or find a way to bring it into your life. Or do bits of it. Like if we’re talking about a party, go for the first hour, really throw yourself into it and then head home. Basically, slow down and think about what you actually want. And be grateful for the things that you do experience. And change your viewpoint. Instead of thinking a half day trip is stupid and not anywhere near as good as a two week holiday, make it a big deal if it’s a big deal for you. Take photos, treat yourself to something as a reminder, make a collage afterwards etc. Treat it with the same respect as a holiday.

I used to spend entire days by the sea, long day trips that I loved. As my pain got worse, I couldn’t cope with it anymore and got grumpy with myself when I had to leave after a few hours. I ended up ruining half day trips with dreams and longings for full day trips. Over time I realised I was shooting myself in the foot and started to let go of what I used to be able to do and focus instead on making sure my shorter trips were great in themselves. I had to stop comparing them to my full days and instead begin treating them as something in their own right. I no longer try and do everything I want to but instead I focus on what I want to do most and enjoy it for itself.

There is no way round it, when you have a chronic illness, you are going to miss out on things. But by focusing on missing out, you miss out on what you can enjoy.

Goals, aims and ambitions when you’re retired/ill

This time of year there is a lot of talk about planning and setting goals and aims and thinking about what you want to do with your life.

But it’s not so straightforward when you’re ill and/or retired early or unable to work.  A lot of this talk is about career development or changes.  And if you aren’t working and know you will not work again this is irrelevant.

Some people may be able to manage a small online shop.  This was originally my plan; to sell cards, just to give me a bit of purpose and direction.  But that has been ruled out – any money I would make from that would go straight towards my care which I find very frustrating.  I am realistic enough to know that I’d not earn much from selling cards but the personal satisfaction of having someone like my work enough to pay for it would be helpful for my mental health.  And I know I wouldn’t be selling so many cards that it would affect my health.

Other life goals people have include buying a house – that’s out the question financially – or having children – out the question from a health point of view – or meeting their significant other – I have little enough energy for me let alone someone else.  Travelling the world would be a great dream to have but its completely unfeasible financially.

Realistically, there are days when getting out of bed is an achievement.  It can very hard to think even a few months ahead when you have chronic illness or mental health issues.  The future is so unknown and that makes it very difficult to think long term or in terms of ambitions and life goals.

Don’t get me wrong, there are things I enjoy doing on a day to day basis and I have a few longer term projects on the go.  But if someone asked my what I want to do with my life, or where I want to be in five years time, or what my life might look like in 2026, I have no idea.

I know it’s still early days with my retirement and that I am adjusting and getting used to it.  I hope that towards the end of 2017 I will have something helpful to say, but for now, if you’re feeling overwhelmed by the pressure of having life plans etc, know that you aren’t alone.

Retirement and me

I am a huge believer in sharing our stories and in doing so helping other people to see that they are not alone, that there are ways through difficult times…

So with that in mind, here is the story of me and my ill health retirement.  Or at least the story to this point in time.

I have a condition called Ehlers Danlos Syndrome.  In a nutshell, this means that I am hypermobile, which causes joint and muscle pain, full and partial dislocation of joints and exhaustion.  It’s a genetic condition so it’s been with me all my life but I was probably about 21 or 22 when it started to interfere with my life.

My hands have always experienced the most amount of pain and this obviously isn’t very helpful if you have a desk job.  I had a fantastic manager who ensured I got the support I needed to continue with my job.  Initially, this was an access to work assessment which resulted in a number of recommendations for ergonomic equipment, a special chair and special pens.  This really reduced the amount of pain that I experienced at work.

As time went by, my pain increased and I think I had five different access to work assessments to ensure that I was getting all the support I could to stay in work.  It was a job and a team that I really loved and I didn’t want that taken from me.  Eventually, things got too much for me and through tears I had to tell my manager that I could no longer work full time.

I reduced my hours to four days a week which helped, initially.  Over time that too became exhausting and I reduced my hours again to three days a week.  The next step was working one of those three days at home.  And then that became too much.

It took a lot to admit to myself that I could no longer work.  I think it might have been one of the hardest things I’ve ever done.  The next thing I had to do was tell other people.  After much deliberation and procrastination, I emailed my manager.  It was too hard, at that stage, to tell him face to face.

I’ve always worked.  My dad is a farmer and I can’t remember how young I was when I started to help out.  I started work in a newsagent’s the weekend after my 16th birthday.  I worked full time the summer before and during my time at university.  After graduating, I had about a month of unemployment, followed by temping for seven months, covering sick leave for five months and then starting work for what would turn out to be my final employer.

I worked for my final employer to six years in numerous different jobs but with the same supportive manager.  By the time I retired I was managing the team.  I owe a lot to my team and my manager.  They all went well above and beyond to support me to continue to work.  Without them I would have had to have retired much earlier but because of them the decision to retire was so much harder.

Interestingly, whilst a google search for coping with ill health retirement provides limited information about the emotional side, a search for forced retirement is slightly more fruitful.  I was adamant that I would not be forced into retirement.  This was a decision that I wanted to make for myself rather than have somebody else thrust it upon me.

I imagine the emotional turmoil from a forced retirement would be very different to one you choose.  Although I say choose, it was a choice made with very tight constraints around it.  I am aware that if I hadn’t chosen retirement at some stage it would have been forced upon me.

Returning to my story, having told my manager, I then had to approach HR about my options and the process.  I had a lovely conversation with one of the advisers who set out the different ways this could go and answered the questions I had.  Luckily I was in the pension scheme which turns out to have been one of the best decisions in my life.  I was quite worried because I had only been in the scheme for two years, having had not been able to afford the loss of income previously.  She reassured me that this didn’t matter, we would apply for ill health retirement, I would be assessed and depending on my level of ill I would find myself in one of four scenarios:

  1. I would be assessed as fit to work
  2. I would be assessed as unfit to work but likely to return to work within three years
  3. I will be assessed as unfit to work, unlikely to return within three years but likely to return after that
  4. I would be assessed as unfit to work and unlikely to ever return

Depending on how I was assessed would obviously change the outcome financially.  If I was assessed as permanently unable to work, I would get a pension which will be worked out as if I had worked till retirement age.  Obviously this was the desirable, and as far as we were concerned the most appropriate, outcome.

Several months later and I had finally received the outcome.  In my case I had been assessed as unfit to work permanently and my pension was based on my full time earnings (because I had had to reduce my hours because of ill-health).

In so many ways I’m lucky – I’ve got financial security (although a lot of my pension now goes on care), I can choose what I do with my time, I don’t have to worry about restructures and I have lots of interests.  I knew I wouldn’t be short of things to do however, the reality is, when you have perhaps forty years ahead of you with nothing in them, you can get overwhelmed.

I officially retired at the end of May and at the same time, my door openers were finally fitted to my flat, meaning I could leave by myself!  Unfortunately, a lot of things were tying up for the summer at that point… Adult learning courses, groups etc were all taking a break…

So, now it’s September and things are starting up again and I am hopefully constructing myself a routine.  I have hydrotherapy starting, I have signed up for a weekly art course and am looking at other groups and courses.  I am hoping by the end of the year I’ll have a good idea about how much I can do in a week and have some kind of balance in my life.