Meet me at the crossroads

Gougane Barra
I don’t have a photo of a crossroad…

So I’m at a crossroads in my life.  Or perhaps, more accurately, a dead end.  I’ve never had a great life plan or ambition or expectation but I think working full time was just always a given.

warning: this is unedited, apologies for errors

About a year ago it started to dawn on me that I wasn’t up to full time work.  By September-ish I had managed to externalise that, with lots of tears.  By March it was reality.  I had gone from 37 hours a week to 30.  Which might not seem a lot but dropping from five days a week to four days a week was terrifying, heartbreaking and agonising.  I’ve known for quite some time that my dregs of self-esteem are very much tied up with work and being productive.  And saying I can’t manage that stirred up some major issues for me.  I was essentially saying that I was worthless because I couldn’t work full time.  I was angry that my body had taken more things from me.  I was scared and it was a vulnerable place for me.  The way I saw it, I was having to put my hand up and say I can’t do this, I am failing at full time work.  What would people think of me?  More importantly, what did I think of me.  Hint: on the whole they were very different responses.

So it’s been almost a year since I told someone I needed to work less.  And a lot has happened in that time – I have started getting care, started using crutches, started using wheelchairs and my pain has increased considerably in the last year.

Which brings me to the present day.   I have taken more time off work because of pain in the last two months than all my sick leave from the rest of my career combined.  And the sinking realisation that I can’t work four days a week hit.  It hit with tears and frustration and anger and ranting texts sent to a very patient and supportive friend.  A week after I had this realisation, my manager asked how I was getting on with the reduced hours and were they helping enough?  No.  There’s no sugar coating it, the answer is no, I can’t work 30 hours a week.

And that’s why it’s less of a crossroads and more of a dead end – I can’t keep moving forward.  Something needs to change.  I don’t yet know what my hours will look like other than less.

And I haven’t yet figured out what those non work hours will look like.  When I first reduced my hours it was simple, I would work Monday and Tuesday, rest all day Wednesday, work Thursday and Friday and rest over the weekend.  That just about felt justifiable to me.  But I can’t comprehend the idea of taking more time off work and resting.  I think there is a need to do that to some extent because otherwise I still won’t be fit for work on the days I do go.  But, and this comes back to having self-worth tied up with productivity, I feel I need to be doing something.

And financially, I do.  Reducing my hours the first time was a huge hit to my bank account.  I’ve been supplementing earnings with savings and thankfully was approved for PIP just before my hours reduced so that has helped a bit.  But reducing my hours further will put me in a very vulnerable financial situation.  Yes there are other benefits which at some point I may be eligible for but (again, self-worth is raising its head) I don’t feel I deserve them (which is nonsense) and I find the idea of being reliant on the government quite scary and it feels like a vulnerable situation.  For so long, I’ve been financially independent and before that I was striving to be.

Anyway, to sum up the situation is more ‘free’ time and less money.  So surely I can find a way to make money which isn’t going to have a negative impact on my health?

So far all I’ve come up with is photography (with the help of a couple of friends).  But that is a scary huge thing to do.  So many what ifs and as far as I can see no certainties.  Or writing, which has the same risks.  The biggest fear is that I will be laughed at – people will look at my work and think why am I trying to sell it, it’s not up to standard, what right do I have to charge people for my work?

If it hadn’t been for my pain, I’d never be thinking about the possibility of taking a risk with the more creative side of me.  So maybe that’s the happy ending to this post.

Yes pain sucks, but maybe, just maybe, it means you do things you wouldn’t otherwise do.

Chronic pain cookbook

As you may already know, I have a chronic pain condition called Ehlers Danlos Syndrome.  My hands are the most affected part of my body and this makes everyday things like cooking very difficult.  As they were worsening, I found that there were fewer and fewer things I could manage to cook.  So I did what I always do, I looked online for advice.  But there didn’t seem to be much… there was a lot about using food to make yourself well again but not much on food that you can prepare when you have chronic pain.  So instead I put together my own advice and recipes.

It’s based entirely on me, my likes and dislikes, my pain and my situation so it won’t be entirely spot on for other people.

Unfortunately, since having the idea of the chronic pain cookbook, my pain has deteriorated too much and I now need carers to cook for me but I hope it is of help to someone.

I’d love to hear your thoughts, feedback and recipe suggestions.

Chronic Pain Cookbook

How to be a carer

If you follow me on twitter or know me in real life, you have probably heard me whine about my carers.  Don’t get me wrong, I have some great ones. But I also have some awful ones.  The following are from real life and unfortunately mostly one carer who, despite me repeatedly trying to get her removed, is still on my team.

How to be a carer

Golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

“Can I have some coffee in my flask?” Just add coffee powder and put the lid on the flask.  Job done. That’s all that was asked for.

When the client gives detailed instructions about how to heat up a wheat pack, follow them, but don’t remove from microwave, instructions didn’t include that.  When the client asks where the wheat pack is, act surprised, she didn’t ask for it to be removed and given to her.

Client: “Can you get me out a new toilet roll?”
Carer: “Yes, would you like it in the kitchen?”

Splash water on the client when supporting them to clean their teeth – they struggle to get washed so every little helps.

Mash oven chips – it makes them easier to eat.  So what if the client didn’t ask for it, you’re using your initiative.

Don’t follow instructions despite parroting them back to the client. Your way is the right way.

Let yourself in 45 mins early, wake up client, then fire questions at them and don’t give them chance to wake up.  With any luck they’ll be so disorientated that they’ll tell you to leave early.

Practically run out the door after the care call, even better, leave half way through.  Your time is precious after all.

Despite frequent requests, do not core apples and pears, the client will enjoy them regardless.

Include grapes covered in a white fluffy mould in their pack up, no point in wasting anything!

When you go shopping, leave the client in a corner in their wheelchair, run round the shop and then declare there is nothing in the shop for them. You know best.

Tell the client how grateful you are that you’re healthy. This will help them feel better about themselves, after all, they are making you feel grateful.

Talk about other clients, you’re just trying to make everyone feel connected and less isolated. Confidentiality is overrated.

Stay around after the client has said you can go, they are obviously lonely and need your company.

If you need to write down the client’s rota, just doing half of it is fine, they don’t need to know it all.

When it comes to meds – repeat back what the client says, then do something different. She’s taking so many that it doesn’t really matter.

Nb. This isn’t a comprehensive guide, you will need to use your intuition but never forget the golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

“Why don’t you apply for this care job…?”

Before me and my sister started having care, I didn’t really know how awful the care sector is.  Yes I’d heard some of the horror stories but I guess I’d always assumed that they were the exception.

(I’d like to add that from talking to other people, my care company, on the whole, seems generally to be one of the better ones…)

I think for me there are a few issues:

  •     quality of staff
  •     availability of staff
  •     quality of care companies
  •     late or missed care calls
  •     too many different carers going into people’s homes
  •     perception of the role

For now, to start with, I’ll be looking at the perception of the role of carers.

Caring (eg personal carers, childcare, medical care) is one of few jobs where not doing it well will have a massive impact on someone, quite possibly risking their health and wellbeing.  Few jobs have this level of responsibility.  And most jobs within a caring field are not well paid and that responsibility is not recognised.

Anyone who follows me on Twitter or has heard me talk about my carers will know CC – crap carer. I joke about her incompetencies (that’s a blog post all of its own – coming soon!) but the reality is that when she appears on my rota I am filled with dread. Half the time I am cancelling her because dealing with her is more damaging to my mental health than the benefit of her limited support.

This means that some evenings (I can’t cancel her in the morning because I can’t open my meds or get dressed), I am sleeping in my clothes and either getting friends to help with food and drink or struggling with them myself.

Given my health, I really struggle to get the lid on and off my drinks bottle so have had days where I’ve been eeking out my juice so i last until my next call.  Food wise, all I can manage on my own is finger food. Essentially I’m limited to sausage rolls or…no, I’ve been thinking, between being unable to open things or cut them up, I can’t think of much else I can manage.

That said, when she is with me, I don’t eat much better. She can’t cook, and she can’t follow instructions. She ruined oven chips for gods sake. So I have to prepare the call before so all she has to do is microwave leftovers. I can’t even do things like oven chips or veggie sausages, partly because she is that awful but even if she does manage to cook, she doesn’t understand that I need things cutting up small. Every time I have to remind her to cut up my food, which is a humiliating, and every time she makes a half arsed attempt and I have to get her to do it again because a sausage cut in half is no use to me – I can’t cut it and they don’t balance well on my spoon. I have carefully explained why we cut up my food but it doesn’t seem to help…

Oops, I said this wasn’t going to be about CCs incompetence…  My point is that there is a huge impact on me, my health and wellbeing and my friends if one of my carers can’t do their job.

In the current climate it feels like more and more people are being pushed into caring. Think ‘Wanted: a very personal assistant ‘ which was on BBC3 a few weeks ago. In summary, it took unemployed young people and, without them knowing what the role was, they were interviewed and offered jobs supporting a young person with care needs.  The idea seems to be that people don’t even need to be making an informed decision about becoming a carer.  I know, from talking to people who are job hunting, that there is a push from the job centre to work as a carer or PA. Because there are no qualifications required (generally), it’s got a reputation as a job that anyone can do. This is not true!

1. Firstly, it’s really obvious to the client if you don’t want to be in the job, aren’t enjoying the job or even if you’re a good carer having a bad day. It’s such a personal, intimate relationship that you can’t miss it. BTW, bad days are fine, we all have them. If you don’t want to be here, that makes me feel awful. I am also far less likely to ask you to do things for me. If you are making me feel like an inconvenience, I will want you out of my house ASAP.

2. Secondly, it’s a full on job. I couldn’t spend that much time with another person/people having to support them with so much. And the carer has to be professional. Yes my carers have a bit of a whinge and moan about things with me but they also have to come with a smile and degree of cheerfulness even after a long shift- at the very least, don’t skulk in, avoid eye contact and run out (yes, CC, I’m looking at you).

3. Thirdly, it is PERSONAL care. I need a carer to sponge wash me, all of me. I can’t wash myself so I can’t have a carer who is squeamish about cleaning intimate parts of me (I don’t like euphamisms but not sure wordpress or google will like more specifics). The fact of it is, that I, just like everyone else need to be clean. And I know that there are many many people out there with more care needs than me. You cannot come into this job thinking you’re going to have a lovely time and how great it is to be helping people. That will be part of it, but you can’t avoid the other part. And I’m not sure, based on my newest carer, how much people are informed or prepared for that.

The above are not the only issues but for me they are three key reasons why a job in care isn’t for everyone.  Other things include the physical nature of the role, variable and often antisocial hours etc.

In summary…

Not everyone can be a carer. There may not be qualifications but there’s definitely some people who can do it and some who can’t.  More recognition and value needs to be placed on the role so we move away from this perception.

“But I’m not creative…”

Firstly, if I can do it, so can you.

Secondly, art journaling is amazing!

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Look at all those intriguing pages!

Art journaling really helps my mental health but I’ve had to really adapt my art journaling techniques and expectations as my hands are in a lot of pain and i struggle with fine motor skills. It’s been, and continues to be, a journey of trial and error, discovery and adaptations. Because of those limitations, my journaling has become more precious, more thoughtful and a slower process (in a good way). I have ended up adding a lot of depth to my pages because I can only do a little bit of a page at a time and this also provides space for reflection between layers. I definitely feel that some of my better pages have arisen because of my limitations.  In fact my latest journal charts my journey from “argh I can’t hold a pen” to “oh wait, if I do this very slowly, with lots of breaks, using layers and the right techniques I can still do this”. It’s been, and continues to be, a lot of trial and error. What I can do one day is not the same as another day.

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Pre 2015

I think learning to work with my limitations, not against them, has made art journaling a worthwhile experience for me in itself although it is so much more than that. I do feel if I can do it then so can almost everyone, no excuses!

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2015

Technique wise, I do a bit of collaging, use photos I’ve taken, splash paint around, use found objects, stencils, inks etc. I can’t hold most pens anymore so words come from print outs, magazines, stickers etc. Again, working within that limitation makes it easier in some ways – having the world as your oyster, or the alphabet as your seahorse (or whatever is appropriate there) can be overwhelming to the point of freezing you. I try to journal something that comes out of the day which means I’m more tuned in to what’s going on round me. For example when I am out I might be looking for found objects such as feathers or if a particular quote resonates, I’ll pay more attention and make a note of it. It’s paying attention in a deeper way – if I wasn’t journaling, I’d miss the feather, I’d hear the quote and think yeah that sounds great but then it’d slip away from me.

What I can do varies from day to day.  Some days I just place cues; feathers, petals, a word ripped of a leaflet. These hold the place for me so i can return at another time when I am able to take the cue and roll with it. It might be a few days, it might be a few weeks but those cues fester in the back of my mind until I have time, have spoons or have a feeling about what the first or next step is.  I say feeling, I don’t generally have an image of what I’m wanting, it is much more something I feel my way through. I will look through my stash and see what speaks to me. I will move things around on the page. Or just get stuck in adding colour and seeing what happens.

Tools I have found I can use
  • Ink and ink pads (but not stamps, I can’t seem to use them without lots of pain so I use ink pads with stencils instead)
  • Stencils
  • Acrylics
  • Chalk or soft pastels – these are so gentle and a great way of getting a bit of colour for not much effort
  • Chunky handled brushes
  • Glue tape – I find this easier than a glue stick because it requires less pressure and it sticks much better. I find it better than pva because that involves holding a paint brush.
  • Paper – a variety of colours, craft paper, wall paper, wrapping paper, junk mail, any kind of paper will do! If you like paper, check out flow magazine
  • Photos
  • Other bits and pieces – tiny bits of ribbon, buttons, fabric, words ripped out of things…

Anyway, I’ll stop there because I could talk, or write, for hours about it.  If anyone has any questions or comments, please add them.  I’d love to know what other people are up to, especially other people who have difficulties with their hands as well.

EDS awareness month: An open letter

Hi,

First let me start by saying I don’t normally do this kind of thing… But May is EDS awareness month and given that you are probably wondering what on earth EDS is, I am going to make an exception.

Secondly, at no point will you need to dig in your pockets or navigate sticky sweet wrappers in the bottom of your bag in a search for loose change. I am concerned with raising awareness not money.

You can ignore this, read it and/or ask me questions as you’d prefer.

What is EDS and why do I care?

Ehlers Danlos syndrome, or EDS, is a heredity condition affecting collagen.  It also goes by the name Hypermobility Syndrome and various  permutations of either of these. The fact that it’s name is complicated is fitting, the condition itself is also very complicated. Different people can be affected completely differently and there are different types of EDS.

Collagen is essentially the thing that holds you together. It acts as a “glue” in the body, adding strength and elasticity. The four most common types of EDS include:

  • hypermobile EDS
  • classical EDS
  • vascular EDS
  • kyphoscoliotic EDS

All share common features, such as loose and flexible (hypermobile) joints, abnormal skin, and other fragile body tissues e.g., weak abdominal wall leading to hernias, stretchy blood vessels and varicose veins, and thin heart valves. Most people with a type of EDS will also experience fatigue.

People with hypermobile EDS may have:

  • joint hypermobility – the joints have a wider range of movement than usual
  • loose, unstable joints that can lead to dislocations and subluxations (incomplete or partial dislocation of a joint)
  • joint pain and fatigue
  • joints that “click”
  • easily bruised
  • gastrointestinal complications
  • symptoms that affect the autonomic nervous system (the nervous system that controls your automatic functions, such as breathing and urination) – this includes postural tachycardia syndrome, which causes fast heart rate, dizziness and fainting
  • mitral valve prolapse – a heart valve abnormality
  • uterine, rectal or bladder prolapse
  • urinary dysfunction
  • dental problems
  • slow bone density (osteoporosis)

And the reason I care about EDS, in particular the hypermobility type, is because I have it. Both me and my sister have inherited the condition.

Without wanting to freak anyone out, my toes and fingers dislocate daily, my other joints such as shoulders, hips and rips, fully and partially dislocate less frequently but still fairly regularly. Yes, it turns out ribs can indeed dislocate, who knew?! There is also the constant pain and fatigue. Pain and weakness make my hands very difficult to use and I can’t walk very far or stand for very long.  I take high levels of painkillers on a daily basis. More recently I have had to reduce my hours because of it and I now have carers coming in twice a day, every day to support me with things I used to take for granted.

Why should you care?

I’m not telling you this because I want pity.  Whether you care or not about my particular circumstances is entirely optional, but I want to raise awareness of EDS for a couple of reasons. Firstly, it is a highly under diagnosed condition. To get to where I am I had to go through being dismissed as exaggerating, being a hypochondriac and being told the pain was just growing pains. Given that I’m only five foot, perhaps growing pains would have been helpful! Anyway, the more people are aware of it, the more people can get a correct diagnosis.

The second reason I want to raise awareness is to get more people talking about disability and hopefully increase confidence about what to say or do around someone with a disability. I think there is still a lot of confusion about what to say or do and fear about getting it wrong.  From my perspective the key is to treat people the same as you always would; hold the door open, talk to me and not the person pushing my wheelchair, if you don’t know me don’t open a conversation by asking about my health. You wouldn’t ask a stranger about their cancer, so don’t ask a stranger about their splints. It’s generally well meaning but it reduces someone to a disability. And if you don’t know me, definitely do not congratulate me on working. This did happen a few weeks ago. The woman was probably meaning well but I don’t need congratulations for working, if you want to congratulate me about something, go for making it to Cambodia and back on my own.

As I said, I don’t want pity. I want people to try and understand. And be thoughtful. And talk to me. Not sure if I can do something or if I need help? Ask me. I honestly don’t mind people asking provided it is done considerately and not out of nosiness.

As an aside, it can be hard to talk about your own disability. There can be a grieving process which comes from not being able to do things, live the life you expected and it can be a hugely emotional process.  If you’d tried asking me about my pain four years ago, I would have fallen to pieces and been trying to hold back tears. I wasn’t ready to talk about it.

A happy ending…

Despite all of this, i am lucky enough to be surrounded with some amazing people. A lot of whom are at work. It’s things like the endless cups of coffee when I can never offer one in return, checking a bar has a downstairs toilet before we go out, putting up with my frequent “can you just write…” requests, being flexible when my taxi doesn’t turn up in the morning…. which mean I can make it through the day.  All done without comment, questions or pity.  My friends are also endlessly supportive, making meals for my freezer, making my bed, listening to me and much more.

Thank you for taking the time to read this.  If you have any questions, please do feel free to ask.  There is more information about EDS at http://www.ehlers-danlos.org/about-eds/

Helen

Travelling with Ehlers Danlos Syndrome

Ok, as promised, I have written some tips for anyone who wants to travel with EDS or a different kind of chronic pain.  This is obviously not an exhaustive list and some of may not be helpful to you, please feel free to share your own tips and tricks below.

When I told people I was going to Cambodia, I got a lot of quizzical looks and “how the hell are you going to cope?”s.  Some of it is bloody minded stubbornness but a lot of it is planning and preparing.  Also, I know that the heat and adrenaline of the holiday will  help a bit.

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Before

  • If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations.  They need to know so they can plan accordingly.  They may also require a health check from your GP
  • Get insurance.  Everyone should travel with health insurance but if you have a chronic pain condition it is essential.  I use a UK company called Fish who are expensive but they are OK with me being broken.  I can also declare all my conditions online without having to ring anyone.  I’ve also used Age UK who are very similar to Fish (you don’t need to be a certain age to use them).
  • Get a super lightweight bag which can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap which you can hack on if needs be using climbing clip things and straps from other bags.  My bag is an Osprey one which has wheels and a proper rucksack back complete with waist strap (this makes all the difference to me).  It also has a day pack which zips onto the main bag and is all incredibly light weight.  It also opens along the length unlike a rucksack where you open at the top so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear.  It was expensive but mine was half price in the sales and is well worth the investment.
  • Make sure you have enough of your medication and pack it in your hand luggage.  You might need a drs letter depending on where you’re going and what meds you’re on.  Don’t change meds last minute – I did and it added to the stress!  Again, depending on the country and your meds, you may need a license to enter.  For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine.  Allow plenty of time for sorting this out before you go.  The appropriate embassy is the best place to start for advice about this.
  • Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put yourself a list together and slowly tick things off as you add them.  No point in starting a flare up before you’ve left the house.
  • On a similar note, plan rest before your holiday.  When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.
  • Contact the airline to let them know about any food restrictions and ask for wheelchair support.  This is amazing; you will get pushed from check in to plane then onto your next plane or to the taxi rank.  It may feel embarrassing or you may be reluctant to ask for help but why waste your precious energy and walking ability to go round an airport, save it for going round the coliseum etc.  Also having wheelchair assistance means you don’t have to carry your bag.  My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.
  • Similarly you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well… This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.

During

  • Take a blanket and a pillow, it will vastly improve your flight.  Yes long haul flights provide blankets, but they aren’t warm and they won’t help in the airports.  A blanket can be used to make airport seats more comfy, less cold etc.. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow.  If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.
  • Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.
  • Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit, it all adds up. Safety pins are very useful – things happen unexpectedly, splints break, clothes break and safety pins fix.
  • Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.
  • My tablet was really helpful.  I loaded it up with tv programmes, audio books, kindle books (as well as taking my actual kindle), I wrote my holiday diary on, took the odd photo on it.  If you need emergency info about something most places have WiFi somewhere.
  • And on that note, take a kindle, do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.
  • Readjust your expectations, you will not be able to go everywhere and do everything in your destination.  Pick and choose carefully.  One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in, then coffee.  Followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch.  Then I headed back to the hotel via the market and had a nap whilst it rained outside.  It was a lovely relaxed day and I did what I wanted to do on my schedule and made use of the weather so I didn’t feel like I was missing out.  When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable so I definitely got the best out of the day!
  • You know your pace but I find it helps to go with realistic expectations.  I know I can’t join in evening activities and daytime things so I choose day time because that’s more important to me.  This does mean I had more room service food and less time with the rest of my tour group but at the end of the day, my limits are different to a lot of peoples and I can’t keep up.  I have to choose what’s important to me.
  • Don’t rush round doing everything as soon as you get there – you will crash.  Instead, head to your hotel and relax, sleep, whatever for a while.
  • The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a hole in the ground… Ah that was a challenge! Depending where you go toilets may include squatting toilets or literally a hole in the ground, think about how you can cope.
  • Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead.  Don’t feel obliged to ruin your holiday to keep friends and relatives happy.
  • I wore UV arm covers to put over my splints, bought from eBay.  When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.
  • If massages help. treat yourself, you’re on holiday after all!

After

  • Plan time to rest after your holiday.  If you work, book a few extra days off, you will benefit hugely from it.  Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.
  • If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down  you can look at them or frame a piece of art you picked up.  Make sure there are reminders of the trip.

Final words of advice… enjoy yourself!

A tale of loss (and boots)

There is an expectation when writing about pain you will weaving a silver lining a lesson you have learnt a new perspective on the world. And there is a time and a place for that but this is not it. This is a post about loss.

On the surface my condition may seem do have little to do with with loss.  but coming to terms with a chronic pain condition has a lot in common with losing a friend or relative close to you. There is a similar grieving process.  In this case, it’s yourself you have lost.

I have lost who i was. This is not due to carelessness or lack of adaptation.  This is not because i couldn’t mentally adjust my new situation. This is because where i am now many things that would have defined me are now impossible. So what have i lost? Other than myself of course.

I have lost my freedom, my independence, any spontaneity i may have had, i have lost control. My identity right down to the clothes and shoes i wear has been transformed. I no longer wear rings on every finger instead i wear splints. I look longingly at bracelets I own, my wrists now covered in the medical beige of supportive strapping. In the bottom of my wardrobe, still in the box they came in, lay my beautiful black boots, ankle high, lace up with ribbon, 4 inch heels – beautiful. They took all of my savings when i was 18 and i will never be able to wear them again. Yet despite having known this for many years i am unable to part with them. i cannot deal with this loss. There are too many losses, i cannot inflict another upon myself. Under a table in my living room lay a pair of gorgeous brown knee high DM’s, once again lace up with ribbons. Even these with a sensible heel and ankle supporting structure are beyond me now. They are replaced by a functional pair of boots – zip up because my fingers can’t cope with laces.

I have lost more than books.  I have lost plans, dreams, friends, skills, talents, dignity, interests, hobbies.  I have lost books.  I am surrounded by books I will never be able to read. The pages are agony to turn. The books inflict pain if i hold them.

This is not a happy ending story. I am not your inspiring motivation tale. I have lost so much more than I can bear to think about and this is hard.

A day in the life of me and EDS

So i did a day in the life of anorexia and thought a day in the life of EDS (Ehlers Danlos Syndrome) would help other people understand the impact that it has on my life.  This is an average day; it doesn’t take into account bathing, doing things I enjoy, going anywhere other than work etc.

* * *

Midnight till 6.30am I sleep, or attempt to.  Sleep is interrupted every couple of hours by the need to go to the toilet and get a drink (yes, I understand the vicious cycle there but I wake up both desperate for a wee and desperate for a drink).  I will toss and turn all night.  Waking up each time I do as joints scream or poke at me.  Lifting the sheets is torture on my fingers.  That’s if I’m lucky.  My meds lead to frequent insomnia and the worst thing is when I am in too much pain to read either because I can’t ‘turn’ the page on my kindle or the brain fog means the words don’t make sense.  If I can read, I can’t do so for more than half an hour before pain takes over (who knew clicking the page turn button on a kindle would be so interruptive).  If it’s a bad night, I may dose off about 4am.

6.30-7.30 I have four alarms and a sunrise lamp which sounds like overkill but even then, from time to time, I will sleep through the lot of them.

7.30-7.45 If I have woken up by 7.30, it takes a good 15 minutes to convince myself to get out of bed.  It’s a bit scary.  Getting out of bed means i find out what damage I’ve done to myself my sleeping.  Did I knock my knee slightly out, did my hip end up in the wrong place, did I bend my wrists back on themselves, did I fully dislocate my shoulders?  I don’t want to face those answers at 7.45 in the morning!  I stumble to the bathroom, go to the toilet and wash my face.

7.50 I get dressed sitting down, the priority is comfort not how clothes look, I avoid buttons and avoid zips.  Getting dressed, handling the clothes is agony. I brush my hair which is cut so it’s super easy to maintain. On a bad day I might not bother with a brush.  I run dry shampoo through my hair (I wash my hair at most once a week so dry shampoo is essential) and grab the deodorant (pain and exhaustion limits the amount of baths or showers).

8.00 I take the meds which keep me going.  At the moment this is a multivitamin, super strong antihistamines, antidepressents, morphine, tramadol and senna (morphine and tramadol = constipation)

8.02 I battle with the Velcro on my splints as I wrestle them on.  It hurts.  Velcro can defeat my feeble fingers.  Quickly put on my boots (DMs to hold my feet and I’ve had to replace my beautiful lace up pair with a pair with a zip because my fingers can’t manage tying them up).

8.05 If I have time, brush my teeth. If not, I’ll swirl mouthwash or skip completely.

8.07 Grab crutch (optional) and leave the flat.  Lock the door using a key turner because even stupid little things are no longer possible.

8.10 Meet taxi. Spend £5 getting to work…

8.20 Head towards staff entrance.  Hope the disabled door opener works (doors at work are stupidly heavy).  Get the lift and slowly make it to my desk.

8.30 There’s a whole story about my work day, we’ll save that for another time

17.00 Taxi home. Another £5 down the drain.

17.20 Battle with the locks to get into the flat and collapse on sofa.

17.30 Remove splits and boots (this hurts) and take more meds

17.35 ‘make’ tea – throw precooked food in the oven and then battle with cutting it up once it’s cooked. Good days see me in the kitchen swearing at my hands as I struggle to cut my food.  Bad days result in eating with my fingers.  Even worse days, I can no longer use a fork to get food from plate to mouth and I struggle to do it with my fingers.

18.00 Eat in front of a dvd then lay on the sofa until I move to laying in my bed.

19.30 Final meds for the day.  Get undressed, more pain.  It’s very tempting to sleep in my clothes rather than go through the ordeal of getting undressed then dressed again in the morning… Get into bed, more pain.  I might be able to read for a few minutes.  By this point turning the page on my kindle is agony.

20.00 Most nights I’m asleep or heading to sleep by 8pm…

Ehlers Danlos: Stuff which makes my days a bit better

I haven’t talked much about my chronic pain on here, mostly because all the mental illness stuff was more pressing and distressing, but my pain has got worse as my anorexia has got better.  I have a condition which is known as Ehlers Danlos Syndrome or Hypermobility Syndrome (so professionals say they’re the same, some don’t…).  It affects my collagen which is all through your body and means I have joint pain, dislocations, subluxions, exhaustion and other stuff.
 
It’s very frustrating (and painful!) but I was thinking last night (as I couldn’t sleep) about all the things I use to make my days a bit easier.  I thought about how long it had taken me to come across things and how it might be helpful to someone else who is just starting their chronic pain journey to have a list.
So, here is my list of stuff which makes my days a bit better.  Take from it what you want and feel free to suggest your own.
 
  • Meds! Enough said really.  Talk to your GP, make sure you’re on the right ones.  Pain is not a good thing, you shouldn’t push through it regardless of what annoying people say.  Pain is shit and it needs to be managed.
  • Kindle – I can’t hold books but I love reading.  It took me a long time to get to the point of giving in and buying one.  I love paper books and it isn’t the same on a kindle.  But having a kindle is better than not reading.  Main tip would be to think about what you want to use the kindle for.  I choose the absolute lightest and bought it second hand.  You can get classics for free and amazon does daily deals for kindle so you can pick up some bargains.  Also keep an eye out for seasonal sales.  I believe you can also work around the amazon thing and buy books from other companies if you don’t want to be tied to amazon.  Also, excellent for holidays!
  • Tablet – some people will buy a tablet instead of a kindle but for me, having them separate is important.  I can’t read my tablet in bed.  Again, like with the kindle, I went for the lightest which gives most screen.  It’s a Sony Xperia.  Again, think about what you want it for.  I wanted mine to write notes on, watch Netflix etc.  I think it’s probably apps that will make a tablet successful.  I’ve got evernote for note taking and it also has a speech to text function (this isn’t great in terms of getting all the words right but I’m hoping it will learn and improve as new versions come out).  You can also access the notes from a computer which means the notes I take at work can be checked when I’m at my PC.  There are probably other apps, just have a play with them and see what works. A lot of people will suggest you buy a case (same for the kindle) but I haven’t.  This feels a little reckless but if I buy a case it will add to the weight and that will add to my pain and then I won’t use the tablet.  I do have a peel off screen protector though.
  • Tablet stand – because you’ll hurt your neck if you keep looking at it flat on the table.  Also excellent for propping the tablet up to watch Netflix in bed!
  • Bears – as in teddy bears, not grizzly bears.  Sometimes you just need a hug.  Also, bears are excellent for propping kindles against in bed and I use them to help position me when I sleep.  If I’m allowed to sleep as I want, I pull my shoulders out of place but having my arms around a bear means I don’t.  I also have a donkey pillow thingy which as the description suggests, doubles as a pillow.
  • Triangle pillows – possibly called maternity pillows or something else less descriptive.  Helpful in propping you up and sleeping with one means when I fling my arms over my head, there is something there to stop them going too far and dislocating.
  • Blackboard – I have a little owl shaped blackboard which I use to keep a list of things I need help with.  I suck at asking for help.  I don’t like doing it and I generally remember just after someone has left.  The blackboard means I don’t have to ask directly, I don’t forget and it lets people make a choice.  They can choose what they do to help, if they want to do anything at all.  If it says I need help changing the bed and my friend hates doing that, they don’t have to offer.  Or they could choose something else to help me with.
  • Pens – the thicker the better.  There are lots of different kinds and you’ll probably need to experiment with what works for you.  I found PenAgain worked for me.
  • Food processor – mine has lots of useful functions including a slicer, grater, whisker, dough hook and general mixer.  It’s also dishwasher proof so I use it a lot more since getting a dishwasher!
  • Splints – with medical advice, these can help.  Mine make a huge difference.  For my wrists, the difference is between constant tear inducing agony and grit your teeth and bear it pain.  Again, it’s finding what works for you.  Generally they are given to you by an OT but if, like me, you’re struggling with the medical system, you can get your own online.  Again, medical advice is good as sometimes they’re advised, sometimes they aren’t.  I always wear my wrist splints when I’m out the house and the Velcro sticks to things and gets irritating, as do the questions, so I wear thin cotton wrist warmers over them.
  • Jar and bottle opener – I use dysom ones.  I also keep a small one in my bag for opening bottles of drink when I’m out and about.  If you’re struggling, ask a stranger.  Yes it’s hard but it’s better than dehydration or enduring the pain of pushing too hard.
  • Key turner thingy – you attach your keys and it gives you a piece of plastic about 1 inch by 5 inches to hold onto instead of the key.  This is a terrible description but it’s a helpful piece of kit!
  • Keeping spare keys in my shed – brain fog is fun.  You put keys in your oven and food in the dishwasher.  But being locked out of your house is not fun.  I’m lucky, I have a shed and I’ve attached a combination lock to it and keep spare keys in there.  It also comes in handy if friends are popping by and you can’t get to the door.  Just try to remember the combination!
  • Bus pass – for ages and ages I thought I couldn’t get a bus pass because I’m not on any benefits.  I was wrong!  You can get one with a drs note saying that you can’t walk very far.  And it has been amazing.  The freedom is fantastic!  In York I can use it after 9 on a weekday or anytime on a weekend.  It allows me to just pop somewhere if I want.  I can get the bus home from the train station (which is about 600metres away from my home) without feeling awful about the wasted money.  I can get the bus to the coast for free!  Which means I don’t have to worry about getting there and not being able to do anything more than sit on a bench.  I don’t have to do loads to justify the expense.  All in all, I love my bus pass.  You can get one through your local council.
  • Travel mug – I’ve had many travel mugs over the years, all of which have leaked or not kept the drink warm.  Then I discovered contigo autoseal travel mugs.  They keep hot drinks hot for hours (I often add a bit of cold water so I stand a chance of being able to drink them at some point!) and they only open if you keep your finger on a button.  It’s not too hard to press and I’ve dropped my mug on numerous occasions and it’s not spilt and is still working fine.  Even better than a travel mug is a travel mug of hot chocolate.  Particularly good if you tend to forget about drinks or doze off.  Some are dishwasher safe and some aren’t.
  • DMs – as in Doc Martens.  I have found a brand of footwear which fits, supports my ankles and doesn’t cover me in blisters and I plan to stick with them forever.  DMs might not do it for you, but make sure to get supportive and comfortable shoes.  If you find a brand that’s good, stick with it.
  • Mattress topper – a cheap way to get the memory foam experience!  I had a horrible mattress in a rented property which I couldn’t change.  It was wrecking my body and destroying any chance of sleep.  Then I got a memory foam mattress topper and everything was better!  I’m not saying it will cure you, but it has made a significant difference to me.  The only thing to note is that it will add an inch or so to your mattress height so you might want to invest in some deeper bed sheets as well.
  • Electric blankets – I have two.  One for my bed which I am in love with and one that is more portable.  The bed one has nine settings, extra foot warmth, duel control (in case you share a bed with someone who doesn’t freeze) and can be left on overnight.  The last being the best thing about it.  I also have a small electric blanket, about two foot square, which i can have on my lap on the sofa or at work.  Just be careful not to get tangled in the cables!
  • Microwave heat pack – in case you don’t have a plug socket nearby or want something more discrete.  Great for specific joints.  You can get them with or without lavender.
  • Stick on heat packs – curaheat heat packs stick on your clothes and are good for shoulders etc where you’d struggle to keep a microwavable heat pack.  They last 12 hours and the pound shop often has branded ones.  Also very good for holidays etc as they are small and don’t require electricity.
  • Twitter – good for finding other people with the same condition, share tips and understanding.  Also good for asking for advice and I have to say, I use it to sound off…  It helps.  It’s also good for connecting to real life friends who you can’t see as much as you’d like.  It helps me feel more connected to the world as I’m laying on my sofa.
  • Friends – I hate to say this but chronic pain may mean you lose some friends.  It is hard to deal with but for me, it’s shown who my real friends are.  They are the people who don’t care about pushing you round a shopping centre, who cook meals for your freezer, who invite themselves round for coffee, who check in when you’ve been absent from twitter.  They are the people who buy you a second hand dishwasher and fit it for you.  They are the people you can go months without seeing and still fit comfortably together when you do catch up.  They are the people who take time to know what you can and can’t do and who offer to do things before you ask.  They are the people who will open a bottle of drink without needing an explanation or even a conversation.  So yes, I’ve lost friends, but I think chronic pain has made me appreciate my real friends so much more.  At the end of the day, I have limited energy and I want to spend that with people who I care about.
 
I am sure there are lots of other things which I will remember as soon as I press send but this is the key stuff I have around me.