2015 in blog posts

WordPress sent me an email with stats etc about how my blog has fared in 2015.  To be honest I wasn’t especially interested.  My hope is that by sharing my experiences and my words someone else will be helped.

This means that my top 5 blog posts of 2015 are somewhat different to WordPress’s.  Here are mine in no particular order:

  1. Travelling with EDS
  2. How to be a carer part 1 and part 2
  3. EDS Awareness month: An open letter
  4. Chronic Pain Cookbook (free to download)
  5. Do something small and do it most days

Bureaucracy is disabling me.

Ok, bear with me, this could be a bit whiny and it’s probably going to be longer than normal.

I take meds four times a day; morning, lunch, 4pm and 7pm including controlled drugs at morning and 7pm and liquid morphine as and when I need it.

About a month ago, my care agency told me they absolutely cannot keep doing my meds. By which I mean, transferring them from the weekly blister pack which I can’t get into to the little daily meds box which I can open. This also means I only have to carry one day at a time each time I leave the home. And we can also add in the controlled drugs which can’t go in the blister pack. All seems sensible to me. Except transferring meds, or leaving them for me to take later, is secondary dispensing and that’s not allowed.

So, being a problem solver, I started trying to figure out how we fix this. And I’ve thought and thought and there are no sensible options. I’ve been shown a telecare medication dispenser. Which to be fair, would give me (some of) the medication without carers having to get involved. It couldn’t dispense the controlled drugs or the as and when morphine.

It is also huge.

And I would have to take the whole thing with me if I wanted to leave the house over meds time (you know, to do something wild like go to work).

As I can’t get it out my bag I will still need help taking my meds.

When it’s time, it’ll beep away until I take the tablets. Which is great if I happen to be in a meeting – sorry, don’t mind the beeping, could someone grab the giant meds thing out my bag as I can’t do it myself – nothing like having a giant sign on your head saying disabled.

I’ll also have to carry about a week’s worth of meds if I go out which will be great for thieves – nice stash of tramadol there…

It will need filling weekly which means I need to be home at the same time each week so the pharmacy (there’s only one which will fill it) can drop a filled box off and take away the old box. But that’s ok because I’m probably going to be tied to my house by the meds box anyway…

Plus the controlled drugs can’t go in it.  That’s ok in the morning as my carers are with me but they aren’t currently at 7pm (they do 5.30-6.30 as that’s when I have my tea, any later and I’m too tired and can’t be bothered and anorexia says nah, not tonight).  And I’ve just heard from the social worker that they wouldn’t extend my evening call.  So I would have to have 6-7 instead meaning I will struggle with my tea and I’ll be going to bed straight after I’ve eaten (I’m in bed by 7.30 at the latest).

And there’s the as and when liquid…Even if we can replace it with a tablet, I still won’t be able to get it out of the packaging. And I take it any time of the day or night. 3am is not unheard of… In fact the middle of the night and when I’m at work are the most common times for me to take it…  One of the ‘solutions’ social services suggested was that I get my team to dispense my medication.  They do at the moment because we haven’t got a choice but it’s not appropriate and I can’t rely on them being there or me being with them at the right time (you know, meetings and such get in the way).

And social services keep saying it’s not their responsibility… it’s health’s…

I’m off to see my GP with my care manager on Tuesday… I have a sinking feeling they will tell me it’s not their responsibility, it’s health’s…

Wish me luck… the alternative is i have to be at home 8am,12pm,4pm and 7pm unfailingly and having my evening meal screwed up.

Being disabled is a full time job

So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic.  Let’s look at a week in my life balancing being disabled with working:

Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30.  Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment.  It wipes me out and we get home by 1.30.  I’m supposed to meet with CQC inspectors at some unknown time today about my care agency.  They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.

Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15.  Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30.  Bed by 7 on a work day.  Exhausted. In pain.  On work days I basically do nothing except attend work.  I have no energy or spoons or time for anything more.

Wednesday: day off. Carers 8.30-9.30.  11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring.  After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30.  Days i’m not in work I will try and get something creative done, depending on pain and energy levels.

Thursday: work. See above.

Friday: work. This is the hardest work day because I’m still exhausted from Thursday.  Before I start work I have to see my psychologist so i don’t get to work till 11am.  Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.

Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day.  Both are exhausting and painful and take a lot of time.  I can’t get into my bath/shower so we have to sponge wash me.  It’s cold and undignified.  If I want to go out, I have to do so when my carers are here because I struggle with my locks.  On a good day I can manage them once in the day so they either need to be there to lock up or unlock.  On a bad day I can’t manage the locks at all.  I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.

In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.

Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days.  In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me.  Just getting to work in the morning can be a feat of its own.

EDS and twitter

“You’re on twitter all the time, you can’t really be sick”

Thankfully that attitude isn’t something I’ve experienced first hand but I know that it goes on and is a way that some people think.

But for me, twitter has been enormously helpful.

The people: There is a friendly, helpful community of people who have EDS meaning they understand what the condition is, what you’re experiencing and some of the hurdles that come with it.

The advice: On many an occasion I have needed to adapt things or find new ways of doing something and a quick tweet gets a number of replies.  Ranging from advice about which jar opener to go for to creative thinking about how to get around pulling tights/leggings/trousers down when you go to the loo (the answer btw, is sock dreams. or more specifically, super long socks combined with a short, flippy, lightweight skirt)

The company: There are days and days where I find myself unable to do anything or leave the house and twitter is a really good way for helping me feel less isolated.

The information: Information about EDS is patchy.  And repetitive.  And unreliable.  So following people like HMSA and EDSUK as well as other people with EDS means you get to find out things you wouldn’t otherwise.

The ranting: Living alone, having somewhere to rant is a good thing otherwise I think my carers would suffer.  Although actually, a fair amount of my ranting is about my carers… But it helps when other people know what it’s like or can suggest ways to make it better.

The friends: There are people I wouldn’t know without twitter, people I consider to be incredibly close friends.  And it’s a way to keep up to date with what friends you don’t get to see much of are up to.

Do you use social media? Has it been helpful to you?

I’m @theowlgirl on twitter, you’ll find I’m non public but I accept most follower requests. I just had a weird patch where people not on twitter were talking to me about stuff I had only put on twitter.. weird!

How To Be A Carer Part 2

Firstly, if you missed How To Be A Carer Part 1, or have forgotten the key teachings, you are advised to read that before proceeding.  Today’s lesson is focussing on communication; from the voice you use to the topics you talk about.

The voice you use

Baby talk to clients. No explanation needed here, it’s obvious right?!

Overshare

The client doesn’t really have much of a life so you need to share the intimate details of yours, for example if your cousin’s neighbour’s dog has eloped, that is prime material. Your client would never forgive you if you didn’t share the juicy details!

Note: oversharing can extend to financial matters including the details of various relatives bank accounts. It’s not showing off, just teaching the client about life.

Moan 

Moan all the time, particular loudly about the parts of the job you don’t like going for this client, they will stop asking you.  Even better, moan about another client asking you to do a particularly awful task and really emphasise how dreadful l it was and how awful it was that the client asked you to do it. You see, this way, the client will know never to consider asking you to do it for them.

When it comes to moaning, don’t feel you need to hold back there are no topics which are off limit. Managers pissing you off, rotas not going in your favour, other clients etc are all acceptable things to moan to this client about. After all, if they weren’t there you wouldn’t have to be either.  It’s really all their fault when it comes down to it.

How to avoid difficult or unpleasant tasks

In addition to moaning about tasks, for this client or any others, you’ve also got the ‘nervous breakdown’ and ‘I can’t do anything’ options to get you out of those tasks you just can’t be bothered with.

A couple of months in (not too early or it will be put down to nerves), in an outburst of emotion, declare to the client that they can’t understand what it’s like to be a carer, how scared you are of them and how hard it is for you. This display of unstable emotion will be enough to put them off any thoughts of criticising you and you can allude to it with a quavering lip or teary eye if they ask too much from you.  They won’t want to push you, they may even see you are suffering and get you to put your feet up with a cup of tea.

In the very early hours of your client carer relationship, tell them repeatedly that you’re really crap at cooking, washing hair, cleaning etc then they’ll be so concerned with crap results, they won’t ask you to do it.

Don’t forget about yourself

Make sure when it comes to conversation, it’s all about you – how hard this is on you, how wonderful your family are, doesn’t matter what the subject is, it’s your job to get it back to being about you.  It’s important to get things off your chest and let’s face it, it’s cheaper than counselling! It’s particularly pertinent that you do this with clients who have difficult lives.  All they have to think about is themselves until you provide some relief in the form of your own (so much better) life.

Finally..

It’s absolutely fine to pull faces behind the clients back, you’ve got to get the stress off your chest somehow!  Other non verbal communication such as arms crossed and scowling is also allowed.  After all, some of your clients might struggle with verbal communication – it’s all about equal opportunities.

Too ill to cook?

Flicking through twitter this week I found a link to Natasha Lipman’s blog post “Too ill to cook?” which resonated strongly with me and feels like it would be useful information for many others as well.

With her permission I have quoted some of her post but do go and read the article over on her site.  And don’t forget about the useful tips section in the chronic pain cookbook!

“…cooking, mannnnnn.  That involves getting out of bed and standing around and like, chopping and doing things. Exhausting! I’ve stopped being fancy in the kitchen and am getting on with more quick and easy simple things to make sure I feed myself well with the minimum amount of effort. And trust me, when you don’t/can’t just bung a ready meal in the oven it makes things a lot harder. Whether I want to or not, I don’t have a choice about spending my energy on this.”

I know many of us with chronic pain are also limited in terms of what we eat and on the whole home cooked meals are better for us nutritionally so I hope the top tips she shares can help keep you cooking.  Please share your own as well.

Job hunting with a disability

sorry, this has become a bit of a ramble…

I’m just seen a tweet from @iamkateevans which links to a blog post about someone with cerebral palsy and their job hunt.

This, and the restructure we’re undergoing at work, got me thinking about what I would do if I lost my job.  I would like to think that it would be accepted that I’m not really fit for work (I can barely do my job and I’ve got a million adaptations, exceptionally supportive colleagues, a lot of flexibility and I know what I’m doing in my sleep).

But I know that the benefits game isn’t embracing of common sense.  So there is a reasonable risk I will end up on JSA or the work related part of ESA which assumes you’ll be able to work again and means you have to show you’re moving towards that.

Up until now, I think I’d mostly been focused on the work part of finding a new job.  The adaptations etc which would be needed when I found a job.  I hadn’t really thought about the job hunt itself.

And it’s throwing up a lot of barriers:

  • typing is very painful, i can only do a little bit at a time and voice recognition software on my laptop is patchy at best.  Add in the time limited application forms and those which are badly formatted and filling out an application is going to be a nightmare.
  • there are more and more days where I can’t get onto my laptop and can only do limited things on my tablet so actually having to search websites for a job is going to be difficult.
  • getting to the job centre in the winter when leaves, ice and snow make pavements slippy is a risk.  and travelling over cobbles and crap pavements in a wheelchair exacerbates my pain.  As does the cold.  The alternative would be spending a fortune on taxis.  plus there are days when leaving the house isn’t an option.  depending on where i live in relation to the job centre, there may need to be suitable public transport to get there at the times required (and has space for a wheelchair, buses can get crammed with people going to work and have to leave you behind)
  • energy levels also restrict what i can do a day in terms of job hunting
  • brain fog meaning deadlines are missed or questions misunderstood or other silly errors
  • i am limited to a very small area as I can’t cope with much of a commute
  • I can’t sign my name. I can no longer hold a pen and this causes a surprising amount of difficulty for people who won’t accept my typed name instead…

And all of that is before you even get invited to interview (which would need to be in an accessible room, planned around medical appointments, other peoples attitudes etc etc) and then all the issues which come up in the work place… which is probably a story for another day…

EDS and drinking

A while back, the lovely Beth of Mermaid in Disguise wrote about Cute Cups for Crappy Hands. And crappy hands being a subject I know a lot about, I accidentally wrote an essay in the comments section…

So I thought it would be useful to share the information here as well.

Collection of drinking vessels

What are the issues with EDS and drinking…

  • you may not be able to swallow. thankfully i can but my sister can’t and I’m afraid I’m not best placed to advise on this one.
  • you may not be able to lift a drinking vessel
  • you may not be able to open a bottle with your hands or a sports cap with your teeth
  • you may have a tendency to spill or drop drinks

Hot drinks

Contigo Autoseal are my go to for hot drinks (the site is american but there are UK retailers, it’s just an easier way to see the whole range on their site).  I’ve never had a spill and the button to open the mouth bit is fairly easy to press but not so easy it will spill in your bag. They’ve got a few designs so you can think about what will work best for your hands.  And they come in a range of colours as well!

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Hot Straws are also ace for when you’re out and about.  They mean you can order a hot drink and not have to lift the cup, just pop in your straw and go.  The straws also fit into most takeaway cups (through the little mouth bit) which is extra helpful.

Second note of caution: Using a regular straw with a hot drink is not recommended. There are risks around the chemicals used to make them which are then released when they get warm.  Also increased risk of burning yourself.

Cold drinks

I get through ridiculous amounts of squash in a day.  Maybe 2 litres whilst I’m at work and 2 litres when I get home. Way above the recommended 2 litres per day.  And I can’t make my own juice or fill up my own bottle.  So I need a big bottle to get me through the time when there is no one here, which I wouldn’t be able to lift.  My first thought was that I’d have to have millions of small drinks all lined up for me… But then, through the powers of the internet, I came across Hydrate for Health.  And without wanting to seem dramatic, it has changed my life!

I can drink laying down; I just hook it into the walker I have by my bed or chair, clip or drape the end over another part of the walker and I have a litre of juice in my reach. I also have one one my desk at work. People only need to fill up my juice twice a day at work say instead of every hour and no spills.  Pop it in your wheelchair bag and feed the tube round the side and you’ve got instant access to your drink whilst you’re in your chair!

As you can tell, I love it, and I think it’s probably a good moment to mention I am not on commission!  I don’t receive anything from the products I recommend here, I’m just a satisfied customer.

Also Contingo Autoseal do juice bottles in a range of sizes and are ace.  Mine is 400ml which makes it lighter than carrying a coke bottle etc and went all the way to Cambodia with me.  It meant that whenever I was offered a (non fizzy) drink, either in restaurants or on the plane, I could pass over my bottle and not have to worry about plastic cups etc.  They also come in a range of colours and if you venture into the children’s section there are also some cool patterns as well.

And not forgetting alcohol…

Safe Sip drink covers can be used on wine glasses and are easy to use and small enough to carry with you if you’re going out.  I struggle with drinking from wine glasses so I drink wine from plastic beakers with a safe sip cover.

So that, folks, is how I manage to stay hydrated with EDS.  Do you have any other tips or favourite products?

How Access to Work has helped me

Note: another post that’s not been properly proof read.  sorry, exhaustion and pain levels mean if I did have to carefully edit, the post would never see the light of the internet.

At the point of writing I have had three access to work assessments. All of which have resulted in me being able to stay in work.  There is talk about reducing the support available through Access to Work, which seems ridiculous alongside the focus that the government is placing on making everyone work.

I’ve written this post for two reasons really.  Firstly, if you have a disability and haven’t contacted Access to Work, I hope it encourages you to.  The amount that your employer pays towards equipment etc is dependent on the size of the business and it’s all things they would need to put in place under the Equality Act 2010.  Secondly, it’s to illustrate just how important Access to Work has been in my life.  I am not exaggerating when I say I’d have had to retire on ill health two or three years ago if it wasn’t for Access to Work.

In the UK, an Access to Work grant can pay for practical support if you have a disability, health or mental health condition to help you:

  • start working

  • stay in work

  • move into self-employment or start a business

Note, there is a different system in Northern Ireland.

At the point of assessment one, I was struggling with the basics of my job – writing, typing, holding the phone and I needed a more supportive chair. Without this, my condition would have got worse more quickly and I would have had to leave my job within a year. Possibly sooner.

Assessment one (2012ish) provided me with:

  • Ergonomic keyboard
  • Ergonomic mouse
  • Footrest
  • Ergonomic chair tailor built for me
  • Headset
  • Headset splitter
  • Dragon software
  • Pen again pens and refills
  • Dictaphone

At the time of assessment two, my condition had worsened significantly and my legs were much more affected by pain whereas previously my hands, wrists and shoulders were the focus. Without taxis to and from work, I couldn’t get there – getting public transport involves more walking than if I just walked to work, which is not an option. If it wasn’t for access to work, I would have to pay £10 a day on travel. And putting that in the context of a part time local authority job, it’s quite a significant amount. So again, if it wasn’t for access to work, I’d probably have had to leave my role in December 2014.

Assessment two:

  • Taxis to and from work
  • Taxis to meetings in work
  • Advised about free software
  • New headset (as my condition has worked)
  • New footrest (as we’ve moved office and the desk is higher)
  • New ergonomic keyboard
  • New ergonomic mouse

Assessment three is less dramatic in terms of keeping me in work. My new chair helps reduce pain in my entire body but as my pain has increased considerably at the same time it’s had less of an impact. But if I was still in my old chair, the pain I’m in when I’m at work would have been far too high for me to work.

Assessment three

  • A new chair (as a result of anorexia my chair from a the first assessment a few years ago was no longer appropriate)

And yes, despite all the access to work support i am still having to reduce my hours but without it, I would have lost my job years ago.

So I hope I’ve illustrated just how much of a difference access to work can have. But we do need to keep in mind that there won’t always be a suitable aid or adaption to help someone find or stay in a job. There are just some disabilities which are not compatible with employment. And in my experience, these are people, like myself, who would love to work or keep working but just can’t.

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.