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Working and chronic illness

For the past three years since I started on this whole surgery journey and things took such a toll, I have been self employed. I have been a freelance writer that’s funded the growth of this blog. I’ve also been extremely supported by my husband, both emotionally and financially. As a self employed person, when you don’t work, you don’t get paid, therefore for the 5 surgeries, subsequent recoveries and hospital stays, without the support of Timm, we couldn’t have afforded to live. 

I applied for PIP, asking for support and was flatly refused. The process was so stressful that I couldn’t even bring myself to appeal. It was really difficult, embarrassing and pretty humiliating, so to then get the response that I scored ZERO was heartbreaking.  That’s right, the PIP folk say I have no extra needs than anyone else. I felt like emptying my bag on their desk and asking them what needs they then had…

The fact I have a life long chronic illness meant nothing, the pain, joint problems, fatigue, anxiety, ostomy, dependency on my husband, the raw bleeding skin, ulcers, the leaks, the planning it takes to leave the house, the dietary issues, the exhaustion, the medication, all of it meant nothing and they said I wasn’t entitled to a thing.  This meant money has been tight and till very recently, I just didn’t feel capable of taking on any other work. 

But now I have a new job for Scope as the digital community officer and I LOVE IT! But the reality is that I can only do this job because they support me in working from home.  So how’s it going? Well, I love the job! Working full time is a huge shock to the system and it’s taking its toll on me. 

I finish work and I’m so thoroughly shattered that I’m in bed by 7pm!  On bad days (which has been every day this week) I have used my lunch hour to sleep.  I’m still figuring it all out but I’m sure I will get there. Timm has had to take up a much bigger role in childcare and running the house as I simply can’t do it all. 

It’s a lot to take on but I’m happy I have done it, I almost feel like this job is part of my recovery process. It is helping my self esteem and confidence massively and reducing my feelings of guilt that have plagued me for years of illness where I’ve felt I had to rely almost entirely on Timm. 

Working from home is ideal for me, I couldn’t cope with working in an office. I still have leaks and stoma issues and the privacy of working from home means the embarrassment factor is reduced hugely and the logistics of dealing my bag is so much easier here.  It also means that on a very bad day I don’t need to worry too much about my physical appearance. When I’m struggling, it’s hard enough just to get up in the morning let alone having to make myself presentable for others! 

Emotionally, it’s been a rollercoaster but I’m nearly  a month in and I’m feeling lots more confident.  My anxiety feels more under control and my self esteem is really boosted. After so long of needing my husband to provide for us all, it feels amazing to be a breadwinner! 

This is obviously only my experience, everyone is different and I don’t judge people who don’t or can’t work or work out of the home.  I feel really lucky in finding this opportunity that works for me but I know working from home just isn’t an option for some people. 

So my top tips for working with chronic illness? This is what has worked for me:

Seek out opportunities, they are out there even if they’re few and far between and it might be a struggle. 

Ask for support whilst looking for work. The government website is a good place to start. You could try talking to a Disability Employment Officer

Once you have a job, speak to your employer about your needs.  Whatever your physical or learning disability, you have a right to equality, fairness, respect and understanding at your workplace  under the Equality Act 2010. 

Listen to your body, what does it need? Right now I need rest and comfort and so I have a hot water bottle to hand, plenty of fluids and I do power nap at lunch which sets me up for a great afternoon working. Only you know what you need. 

You can’t do everything.  I did the lions share of housework, but now I work full time, I ask for help from my husband and kids and I got a cleaner. Yes, a cleaner is a luxury, but it is the best £20 a week I spend as it reduces my work load and stress levels. I know it’s not affordable for everyone but I would rather go without other luxuries and use that money for something that really helps me out. 

Prioritise your time. Adding work into your life means other things will fall by the wayside.  Prioritise the important stuff. 

Be open with your employer and let them know your limitations. Offer solutions to the issues you may face and ask for help. 

Rest when you need to. I have fatigue, so I know that when I’m not working, rest is a fuel for my health. 

If you don’t know it, search it. We all have access to all the information in the world! There’s a ton of info and support out there, if you have thought of the question, it’s likely that others have too. Use the internet for research and help. 

If you’re interested in my new role, you can take a look at the Scope Community.  Register and join in on hundreds of posts, questions and comments and a community of disabled people and the families and carers of disabled people now! 
Sam x 

Distance

Apologies for not being about much over the past few weeks, as much as i adore blogging and writing for So Bad Ass, as a mum of three I have to ensure bills can get paid and and so I have been super busy with other work.  It has been pretty lovely work though I have to say! I have been working as an artist for arts group Responsible Fishing UK running their creative workshops at Haven sites all over the UK, the project is called Camp Cardboard and entails hundreds of cardboard boxes and working with kids to transform huge spaces into giant dens/castles/boats/zoos/FBI headquarters/shops/homes/prisons, basically anything the children can imagine!  It has been brilliant fun but has meant quite a bit of time away from home, Timm and the kids.

My husband Timm is a director for Sheffield music festival Tramlines, which means that his summer has been jam packed with preparation and running of the event.  These things mean that our kids have been super busy and passed between the two of us as we attempted to resolve all childcare over the summer holidays.  We are ever so lucky that all our jobs are freelance, versatile and child friendly and on most occasions they can come along with one of us.  I am ever grateful to my mum who picks up the slack when we can’t make it work.

sam cleasby mum parent blogger

And so I suppose today’s post is about distance, both a physical distance and an emotional one.  Timm and I both have what we laughingly call Portfolio Careers, this basically means we are both freelance and work our butts off at any job that comes in! Timm is a photographer, he runs Responsible Fishing arts group, he is both director and main stage organiser at Tramlines and he teaches at a university for their Music Industry course.  I write for publications and websites, work for RF, help run the photography business, do public speaking and I am writing a book!  This makes for crazy scheduling but it does mean that we both work from home and both have time with our children and eachother.  Honestly, we would both like it to calm down some, the manic diary planning and time away from each other is hard going and we would both like a little more time.

I am not complaining.  Two years ago when I had my first surgery I couldn’t imagine how life could be something good, I was so low, so physically and emotionally broken.  I felt like I was in a black hole.  And so for now to have the physical ability to be working and traveling and doing things that I love, it is a real blessing.

love letter to yourself ileostomy jpouch ibd self happiness

The events of my life have made me a pretty tough cookie, yet I realise that my emotional strength relies very much on a connection with my husband.  I can get through ANYTHING as long as I have him with me in my heart.  I know this sounds so corny and feel free to make vomiting noises whilst you read, but after everything we have been through, our relationship has just solidified, our bond is so firm now and the connection between us is better than ever before.

So when we have weeks on end where one of us is working away, when the free days are spent heaping time and love on the kids as we deal with the working parent guilt, when we both have so much on our plates, it is so easy to feel distant and alone.  We have had lots of day to day stresses of late, cars breaking down magnificently, bills to be paid, plans to be laid and so time has been spent on all those rubbish grown up things.  The physical distance is one thing, but we have both had an emotional distance too as we both just try and wade through all our work load.

Through writing my book, I am churning up lots of feelings and emotions about my past, I feel quite fragile right now as all these events from my past come floating up to the surface and I have to deal with them all over again and this is really adding to my anxiety levels.  I am so chuffed to be writing the book, but I had not planned at all for this tsunami of feelings that it would bring with it!

Last week we finally got time to sit down and have a proper chat, we both talked about how little we have seen one another and how we felt we hadn’t connected properly for weeks. (Not a euphemism!!) Isn’t it amazing how a good talk can make everything feel a million times better?  The darkness and anxiety I was going through lifted immediately when I was with my boy, my shoulders raised and my head cleared when we had the time to discuss all that was going on.  Life just feels better.

rock n roll wedding

It is so easy to get caught up in life.  In all that adult, grown up crap that none of us really want to be dealing with but we just have to.  It is so easy to get into a rut, to go day in, day out in a monotonous grey drabness.  It is so easy to get so deep into your work that you forget to look up and see the colours around you.  So this week, take a moment, look around you at the people who matter.  Go for a walk with your kids, have a nice meal with your partner, go out with your friends.  Do something to reconnect with the most important people in your life, do something to close the distance that the boring stuff causes.

This week, go do something beautiful with someone wonderful.

 

 

Sam xxx

 

 

8 ways to stop procrastinating and get s**t done

My name is Sam Cleasby and I am a procrastinator.  Don’t judge me, because I bet you do it to.

I run a photography company The Picture Foundry with my husband, I work with arts group Responsible Fishing, run this blog and I’m in the process of setting up a new business (launching December 2014… EEEEEPPPPPPPPP).  Working a portfolio career means I need to be organised and motivated.  Now I am an organised person on the whole, I love a list, hate being late and generally keep on top of things.

But now and then the old procrastinating demon sits on my shoulder whispering “Google images of funny talking dogs, Sam”

I stand firm at first, “NO demon! I have deadlines!”

“Sam, Mishka loves you” (if you don’t get this reference, click here.  But be warned, you will lose the next hour of you life…

The next thing I know, I have spent two hours on youtube watching goats screaming like humans.

But I am learning to curb my procrastination habit and thought I would share my hard earned wisdom to improve productivity and teach you all how to get shit done.

 

1. TURN OFF THE SOCIAL MEDIA

This has to be number one.  Whether it is Facebook, twitter, vine or tumblr, social media is the nemesis of productivity.  It is great fun and all, but it sucks you in and stops you from doing what needs doing.  Don’t have the pages open in the background, because it Will ping and you WILL click and next thing you know you are watching a girl being woken up by a hoover attached to her face

Set times to check your social media and don’t fool yourself into thinking that if you have your work Facebook page open, it means you are working.

 

facebook dislike

 

 

2. MAKE A LIST

I LOVE lists, I get a massive sense of achievement in crossing things off lists.

The important thing is to not over face yourself, as a ten page list will be overwhelming, stressful and not helpful at all.  I have a weekly list of the things that need doing and then a day to day list.  It keeps me on track and I feel good when I know I have completed it.

lists of note johnny cash

 

3. REWARD YOURSELF

Make a decision that when you have completed X, you will treat yourself to Y.  Be that a cup of coffee or ten minutes on candy crush.  It doesn’t have to be anything major, but a small treat will be that dangling carrot that can get you to finish the job in hand.

sam cleasby so bad ass ulcerative colitis blog sheffield

 

4. GET ORGANISED

It is really difficult to be organised and productive if you are working in a total mess.  Sort out your desk and clear out the crap.  Give yourself 10 minutes at the start of every day to make sure your workspace is clear and easy to work at.

 

 

5. KNOW WHEN YOU WORK BEST

I am not a morning person, BUT I know I feel guilty working in the evenings when the children are about and so I start my day early, but leave creative tasks which require more effort to the afternoon.

Work out when you work the best.  I have a friend who wakes a couple of hours before his kids because he works best in the silence of the morning with a big coffee.  Other friends swear by not starting till midday.

 

 

6. TAKE A BREAK

Sometimes your brain just doesn’t want to get into gear.  If you are really struggling to concentrate, take a break.  Go walk around the block, get some fresh air or a drink.

There are times when there is no point in forcing it, you won’t be creating the best work and will probably need to re-do it.

kobo e reader

 

7. MAKE YOUR WORKSPACE SOMEWHERE YOU WANT TO HANG OUT

If you have to spend 8 hours a day somewhere, then make it look pretty/awesome/inspiring… You are never going to work your best if you are in a hovel.  Make it personal, make it creative, make it you.

I have images I love, photos of friends and family and things that make me smile around my desk.  It cheers me up to have those things in my eye line.

 

 

8.WORK WITH SOMEONE

If you are a homeworker, it is really easy to end up feeling isolated, bored and fed up.  Make a point of getting out and working in the same space as someone else.  Do you have any home working friends? Can you team up and work in the same office?  I am lucky that I work with my husband and so we share an office, but on the days he is out on assignment I HATE it and get so much less work done.

 work with chronic illness

Love Sam x

The office of an IBD blogger…

When you spend as much time on the loo as you have to with IBD and blog about it, the throne becomes a bit of an office…

Back to work!

At six weeks post surgery I made the decision that I wanted to start working again. Luckily I work from home, I run a photography company with my husband Timm called The Picture Foundry Timm has been carrying the weight of the business for the last couple of months and so I wanted to try to get back into the office.

It was great as there was no pressure from Timm, I knew I could do just as much as I felt comfortable with and could go back to bed whenever I needed to.

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It feels good to be back in the office, laying in bed all day may sound heavenly but when it is not through choice it isn’t much fun.  Its lonely and doesn’t help self esteem.  I needed these six weeks as before now I just haven’t been able to think about anything other than pain, tiredness and poo.  I have been on heavy painkillers that make my mind fuzzy and running to the toilet frequently.

But now things are starting to improve massively and so I want to be back in the chair. I want to be working and I want Timm to have a tiny bit of pressure taken off him.

It is so easy to get into a habit of not moving about and by the end of my first day in the office I was in quite a bit of pain just from being sat up rather than laid down.  The muscles in my stomach, back and legs have already forgotten how to just be upright for most of the day!! I am sat on my frankly hilarious donut cushion which really helps in the butt department.

I know I am so lucky, I have worked for other people before and it hasn’t worked out due to my illness and toilet issues, I honestly couldn’t imagine having to go back to a full time external job right now, but as a self employed person I have the benefits of being at home and having the full support of my husband in our day to day work.

I am taking it easy and Im not taking on too much, I will be sensible and Timm wouldn’t let me do anything he thought would hinder my recovery.  It feels good though.  I feel like I have a worth and Im not just a patient…

Love Sam xx

Update

Sorry I have been away from the blog for a week or so, the downside to feeling better and stronger is that you have to start doing all the things you were doing before illness!! I am back to work, which to be honest feels GREAT.  I run a photography company called The Picture Foundry with my husband and getting back on track feels really good.

sam cleasby

I am driving again (AT LAST!!!!) I felt really isolated and out of control not being able to drive for so long.  We live out in the sticks and have no buses, we don’t even have pavements – so being literally back in the driving seat is a big move forward to me feeling like myself again.  Im also back into the grind of housework and the like.  That bit I could do without!!

All this has meant that I haven’t had time to update the blog, so I am very sorry and I promise to try and be a better blog keeper!  You can always take a peek over at The Picture Foundry’s blog to see what we are up to.

Ive been getting some fab comments this week though about the blog – it still surprises me how many of you are reading.  Thank you!!

One comment that made me laugh…

‘I love reading your blog! Its just like that 50 shades of Grey!!’

‘Ermmmm are you sure you are reading the right one?!!’

‘Ohh I mean I just can’t put it down, I read it as soon as I get in from work!’

 

I have also had quite a few comments from people who want me to write more about life affirmation, positivity and how to improve your life.  That seems like a big thing to do, but Im willing to give it a shot, so look out for some new posts soon.

In other news, I have been asked to speak at an International Women’s Day event in Barnsley next year.  It’s such an honour to be asked and though I am nervous, Im definitely going to do it… Id better get planning!

I still feel a little in shock about the events of the last two months, sometimes I can’t quite believe that it all happened.  Physically I am healing really well, though I still feel tired easily and Im not back to 100% – I am feeling almost back to normal.  I have eventually found what seems like the right ostomy bag for me.  I was having a lot of issues with leaking and the flange not sticking properly (Its ok, you are allowed to laugh at the word ‘flange’) but after trying out a few different products I have found the DanSac diamond shaped one piece is working brilliantly for me!

I had a bit of a tummy bug last week and had diarrhoea (how can you tell? asked a lot of people – it was like water and there was a lot of it!) and so decided to try the marshmallow trick that was mentioned in hospital.  Apparently a few marshmallows really slow down the output and can stop you getting dehydrated.  I found these bad boys!! The BIGGEST marshmallows I have ever seen!!

mega marshmallows

I attended a Stoma Open day last week.  My friend said they should rebrand it as the Ideal Stoma Show – y’know sex it up a bit! Anyway, it was good to see the different companies and products but if Im honest I found the whole thing quite difficult.  Id say I was one of the youngest people there by a good few years.  Most were over 65 and so the event was aimed at that age range.  It made me feel a bit out of place.  Stall holders seemed to assume I was a carer and didn’t interact with me as they were the other folk visiting.  The thing is, I KNOW that there are a lot of people with stomas through IBD in the 20s to 40s, so it just made me wonder, where are they? Do they just not want to attend these events? Is it because they don’t need them or because they seem so keyed to older patients?

If you have a stoma I would love to know if you attend events like these and if not why not?  If you do, then let me know your experiences of them.

Love Sam xx

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