Category Archives: spirit

You might be stressed if…

This is the second post in a series about stress. The first post can be found here. The other day I described some physical signs of stress, but sometimes stress manifests itself more noticeably in your behaviour.

The following list describes typical behaviours that are associated with stress. The impact of stress on chronic disease is varied but important to recognise as it can exacerbate your symptoms or lead to further health problems. If you find that you are exhibiting these behaviours you might want to find ways to destress and unwind or talk to your Doctor about other ways of managing your condition.

  1. You need nicotine, alcohol or drugs to unwind or feel relaxed
  2. Your sleep patterns change – you need more sleep, can’t get to sleep or wake up in the night
  3. You feel lethargic and disinclined to do anything
  4. You are short tempered for no particular obvious reason
  5. You tend to argue with people rather than discuss things with them
  6. You often feel angry with yourself, sometimes because of the other behaviours on this list
  7. You often feel angry with other people for no particular reason, or for insignificant reasons
  8. You stop doing things you enjoyed doing before
  9. You withdraw from society, for example staying at home all the time, declining invitations to go out with friends
  10. You become paranoid about the people aorund you
  11. You become weepy for no reason
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Am I stressed? Symptoms of stress

This is the first post in a series about stress. If you have chronic disease, it is important to understand stress because  it can make many chronic diseases worse, and can lead to other symptoms un-related to your original condition.

 

 

These symptoms can be confusing, can be confused with other ailments, and can increase / decrease depending on what is happening in your life.

You might not have the mental machinations of stress and anxiety such as thinking about a situation all the time or feeling stuck, but you might be experiencing it all the same.

The following list is a range of symptoms which might be related to stress and can be used as signs from your body that you need to make some changes to become less stressed.

If you experience any of the symptoms below you should get in touch with your Doctor to discuss them immediately, as they could be a major emergency:

If you experience any of the following for longer than a few days it is worth talking to your Doctor about management / treatment options:

The following are mental rather than physical symptoms:

What symptoms do you experience when you get stressed?

My chronic career – Sarcoidosis and fibromyalgia

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Morgan Bowers from Wolverhampton, West Midlands has kindly agreed to be interviewed. Thanks Morgan!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Medical history?

I have sarcoidosis of the eye & possibly nervous system, benign joint hypermobility syndrome and fibromyalgia.  Generally they are related conditions give me debilitating fatigue, aches and pains, as well as inflammation of joints (ligaments), shortness of breath and pain/inflammation of both eyes (iritis).  I have been ill for some years but only recently was diagnosed with sarcoid after yet ANOTHER trip to the eye infirmary.  Sarcoid is an auto immune disease which can affect any organ.  There is no cure, although steroids are often given as treatment for inflammation.

And how about your working life? What career path have you taken?

I’m trained as an ecologist, currently working as a Senior Countryside Ranger.  I have worked for the RSPB and Wildlife Trust, generally in conservation and ecology, and have also worked as a freelance bat ecologist, doing surveys.

Did you know about your condition before you were diagnosed?

I had never heard of sarcoid, but I knew about fibromyalgia and had suspected it due to its connection with Benign Joint Hypermobility Syndrome, which I was diagnosed with some years before during physiotherapy.

How did you find out further information about your condition when you were diagnosed?

The internet – the first I learned about it was being told that I had elevated levels of something called ACE, which I had to look up.  The truth is that GPs don’t actually know a lot about sarcoid or fibro, and many people are in the dark until they are diagnosed and sent to at least a rheumatologist.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

http://sarcoidosissupport.ning.com UK Sarcoidosis Information and Support Group

http://sarcoidosis.ning.com/ SILA – Sarcoidosis Support Charity

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

My job requires some unusual hours, lots of driving and often dealing with the public. The first two can exacerbate my condition, and dealing with the public means that you can’t show that you’re in pain, which you do get used to eventually.   I have to just take things one day (or even an hour) at a time and pace myself.

What is your top tip for employers – what could they do to support people with your condition?

Well I think understanding it is one of the best things they can do – and for example in my position (on a temporary contract which may lead to a permanent one) I worry that my condition may be a factor in the decision my employers make regarding extensions to my contract. I am worried that they will think that I can’t do my job, or I’m too much of a risk / unreliable attendance really. So I only take sick days if I’m literally unable to get up and go out of the house.

What is your top tip for employees with your condition?

I’ll let you know when I figure that out! I don’t want my colleagues to think I’m whingeing about my health all the time, but I also need to let them know if I’m not capable of something, or need help. They are pretty wonderful actually, but I struggle finding a balance in how much and how often to communicate about what I’m going through. It can be pretty isolating, so its important to have a good support network OUTSIDE of work. My friends and my husband and brothers are, well, there aren’t words. I am very blessed.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I immediately cancel all activities outside of my minimum work hours, as I know that I will be wracked with fatigue and pain.  I deliberately expose myself to positive influences (funny movies & books that make me laugh) as it can be a battle to keep your spirits up.  I think my biggest coping mechanism is to modify my expectations of myself and what I can physically accomplish.  Its very easy to fall into feeling guilty, which exacerbates feelings of laziness and worthlessness and frustration.  Flare-ups can spontaneously go into remission, so I always have that carrot dangling.  It could be tomorrow and I’ll be myself again.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

My god I have learned to be patient!  And also to treasure my good days, which is something people take so for granted.  Actually feeling healthy and energised is a precious thing – I never take days like that for granted anymore.

What advice would you give people who have just been diagnosed with your condition?

Wow, well I think don’t panic.  But if they’re anything like me they will just be glad to finally have a diagnosis.  I have never been so happy to hear bad news!  My main advice is to SLOW DOWN, don’t expect too much of yourself, don’t expect miracles, and pace yourself – don’t go crazy if you have a good day, it will knock you back.  Get a good GP who is willing to discuss your condition – as many won’t/don’t , and rheumatologist appointments are a long wait.

So do less.  Expect less.  Give yourself time.  Improve the quality of your sleep.  Reduce your stress levels.  Eat right.  Exercise if you can (its so hard!).  Communicate.  Rely on your friends for support.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

They are going to feel a number of things, often in quick succession:  weak, angry, lazy, frustrated, alone, unsupported, misunderstood, tired, aching, exhausted, tearful, breathless, dizzy and even depressed.

My husband has been fantastic, calling my Sarcoidosis “the surfin’ sarcoids” – because they surf around my body.  If he sees I’m having a bad day, he asks if they’re surfing a lot today, and that’s a nice way for me to talk about feeling awful, but in a way that’s funny and I don’t feel guilty for talking about it that way.  Its easier to talk about the surfin’ sarcoids than to whinge about Sarcoidosis.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career – Crohn’s Disease

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Tim Albert from Milwaukee, WI has kindly agreed to be interviewed. Thanks Tim!

Tim is 23 years old from Wauwatosa, Wisconsin. He was diagnosed with crohn’s at the age of 14, but has been leading a relatively normal life. He is a recent college graduate and young professional working in the IT field. He is also an aspiring entrepreneur, and has recently created a blog (www.crohnsoncampus.com) to help empower college students suffering from crohn’s disease.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Crohn’s history?

I have a moderate case of Crohn’s. I was diagnosed when I was 14 years old while I was in the middle of my freshman year of high school. It started with diarrhoea and stomach pain, and after a series of horrendous tests and procedures I was diagnosed with Crohn’s.

I have had way too many hospitalizations and have been in and out of remission. However, today I am on a strict pill regiment and I receive Remicaide once a month. Most importantly I am living a relatively happy life.

And how about your working life? What career path have you taken?

In high school, I attended most of my classes (senior year I may have used the Crohn’s to get out of a few days of school, sorry mom). I attended all of my school dances and was on the track and swim teams.

I was accepted into Saint Louis University where I majored in business administration and was amazingly able to graduate in 4 years. While in college, I was elected the president of the national honor society. I rushed, pledged and was initiated into a social fraternity. In the frat I held leadership positions and did my fair share of partying. I also held down numerous campus jobs including help desk security worker, and IT help desk worker.

After school I moved to Wisconsin where I am currently employed as a Quality Assurance Engineer at a small software development firm.

Did you know about your condition before you were diagnosed?

No. I had no clue the Crohn’s Disease existed.

How did you find out further information about your condition when you were diagnosed?

I really just started searching on Google. However, when I was first diagnosed I was almost in denial that I had the disease, and most of the information I found scared me shitless, (sorry for the inappropriate pun) so I pretty much just avoided learning anything about the disease.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I would say CCFA.org is your best bet if you need some information about Crohn’s today. You can really get lost on that site; there are just so many links.

One site I would stay away from however is WebMD. No matter what, I always find myself freaked out that I have cancer after visiting that site.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

The thing that I have found to be the most difficult is dealing with missing work. Even though I have paid time off, I feel like I need to take off like once a week, which doesn’t allow for much PTO to use for pleasure. Your employer doesn’t want you to miss work and I am always worried that I am going to get fired for missing so much.

If you don’t have PTO this would be even worse because you will be losing money to deal with the Crohn’s.

What is your top tip for employers – what could they do to support people with your condition?

Allow for flexible scheduling. My employer allows me to work at home when I’m not feeling well. This is especially useful for people with Crohn’s because a lot of times you don’t need to be laying in bed sleeping, you just need to be close to a bathroom. As long as you are getting your job done, I see no reason an employer should say no to working at home.

What is your top tip for employees with your condition?

Be prepared. Pack all the things you think you might need on your worst day and leave that emergency kit at work or in your car. Scope out the bathroom situation ahead of time. It’s not worth being uncomfortable at work. If you have to go, go. Even if is going to be the loudest smelliest one you have ever let go. (Sorry that was 3)

When you have a flare up of symptoms – what is your ‘coping mechanism’?

Humour. The disease is like a prank from god, if you don’t laugh at it, it will get the best of you.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

Absolutely, I am always conscious of where bathrooms are. I have also developed a mentality that allows me to just not get embarrassed anymore when things happen that may traumatize the average person. A lot of times there isn’t anything you can do about it so there is no reason to sweat it.

What advice would you give people who have just been diagnosed with your condition?

It’s not the end of your life. Yes, things are going to change but you can change as well. The human body is truly amazing, and you can do anything, I repeat ANYTHING you want with Crohn’s. Do NOT let the Crohn’s imprison you.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Be supportive, but at the same time don’t treat them like they’re handicapped. The best friend of someone with Crohn’s is a friend that listens.

And if there is a question that I have not asked which you would like to answer please add the question and the answer below!

I have found that a lot of young professionals with and without Crohn’s have one burring question after they have been working in an office for a while. That question is: Is it all right to fart in your cubicle? I want to let everyone know that the answer is YES! That is your space, and everyone would rather you do a good job at work than sit there all backed up and uncomfortable.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career – Rachel’s story (ME)

‘My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Rachel Hawes from Cambridge UK and author of the Surburban Yogini blog has kindly agreed to be interviewed. Thanks Rachel! Rachel is a punk rock yogini, teacher, writer, massage therapist, sprinkler of fairy dust and lover of all things glitter, cake, kittehs, pugs and Dave Grohl and her story is below.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your ME history?

I was first diagnosed with ME when I was in sixth form college (17-18 yrs old).  I was studying for three A Levels as well as Dance Foundation and suddenly I just couldn’t do anything anymore.  I was exhausted all the time, my whole body ached and I just seemed to get infection after infection.  I was skinny anyway but couldn’t put on any weight, could hardly eat and on prescription painkillers to see me through.

I got through my A Levels but instead of going off to university I went to stay on my Aunt’s farm in Tasmania to recover.  A year later, I’d beaten it.  Or so I thought.

Throughout university my health went up and down in peaks and troughs with frequent bouts of tonsillitis, throat and chest infections.  Nobody really knew what was wrong with me and I never really pursued it, happy at the time to deal with the symptoms rather than the cause.

It wasn’t really until I was living and working in London after university that I started to look into this all more deeply.  I completely crashed and burned in about 1999/2000 – I had constant headaches, ached all over and could not get to work on time for the life of me.  When I passed out on the tube I realised that I had been living in denial and the ME hadn’t actually gone anywhere.

I had a really sympathetic dr (in fact I have to be honest that is the only sympathetic doctor I have ever had when it comes to ME) who did the whole myriad of tests I’d had back in 1991 and then some.  Everything came back negative.  Instead of just dismissing me as some doctors had before, she advised me to rethink my work, to consider the lifestyle changes that had made me feel better last time and she put me in touch with an acupuncturist.

And how about your working life? What career path have you taken?

My main ambitions when I was at school were either to keep dancing or to study archaeology, but sadly my health problems put a stop to both of those.  After I came back from Australia I went to university and studied Ancient History – a nice desk based subject!

I waited tables for a couple of years after graduation which really didn’t do my health any good, before taking a secretarial course and starting a career as a legal PA.  I worked in various firms between 1998 and 2008 taking a career break in 2001 mainly due to health problems.  However I am a firm believer in never giving in to this illness and 2001 didn’t see me  feeling sorry for myself at home – I enrolled on a part time MA course.  By the time the course was over and I’d got my second degree my health had improved tenfold.

Sadly I still didn’t quite understand that what had made me better for the second time was changing my lifestyle.  In 2003 I went back to work for a big City Law firm in London.  It really shouldn’t have come as a surprise when my health suffered again!

Luckily this time I was in a really understanding firm.  I found myself being honest with them about my condition for the first time and they let me work shortened hours and occasionally from home.  Because of this I learned not only how lifestyle choices affect this condition of mine but also exactly the lifestyle I wanted to help me get out of working in offices altogether.

In 2005 I began my yoga teacher training part time whilst working.  In 2008 I rather tearfully left that great law firm who had been so supportive to go my own way.

These days I run my own business – I am a yoga teacher and massage therapist.  Most of my adult life I have found yoga and massage to be incredibly helpful to my condition and know others with other conditions have found the same. I want to be able to put back what I got out  and help people.

I have good days and bad days, hell I have bad weeks, but am able to work my hours around my condition – I work with my ME these days, not against it.  I see an osteopath regular, practice yoga and pilates, have regular massages and try my hardest to remember to put myself first.

Did you know about your condition before you were diagnosed?

Yuppie Flu, something that people who worked really hard in the City got.  Or worse, something that didn’t exist at all.  When I was first diagnosed it was 1991 and I was only 17.  There was no internet to research on, no blogs to read and most Dr’s didn’t really believe ME existed.

How did you find out further information about your condition when you were diagnosed?

I didn’t really.  I just blindly accepted what the Drs told me – at first at least.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I’ve never really used the internet as somewhere to research ME – by the time I started to use the internet I knew everything I wanted to know about the disease.  What I have found helpful is discovering through blogs and twitter the number of people out there with ME/CFS/FMS – being able to find out what works for other people, or just knowing you’re not the only one is incredibly helpful  and healing.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Working in a busy stressful office environment certainly. When I worked in law I was expected to work to a certain pace every day and for a  certain number of hours a week and I just couldn’t hack that regularity. As I mentioned my last firm before going self-employed was very understanding about this, but ultimately many employers don’t get that sometimes people with chronic conditions are well enough to work for a few hours productively and efficiently but not necessarily well enough to do a long commute into the office every day for example.

I have been made to feel tremendously guilty in office jobs for needing time off sick or shortened hours.  Guilty and resentful, which are not good feelings and only trigger more ME symptoms.

Working for myself I am able to dictate my own hours and as a last resort even cancel clients if my health tells me I have to.  I don’t have to answer to anyone else so I no longer have to feel guilty if I don’t live up to some precedent.  After all the only person who sets that precedent is me.

A lot of people with ME however aren’t lucky enough to be able to go self-employed and want to work, at least part time.  They shouldn’t be made to feel guilty about their condition.  If they are honest with their employers about what’s going on a good employer should help them out.  Sadly this isn’t always the case.

What is your top tip for employers – what could they do to support people with your condition?

Understand that your employee isn’t shirking off or skiving, they are genuinely unwell.  Perhaps make provision for them to go part-time or work one or two days from home (this is of course dependent on the job).  I know one person with ME who’s employers let him go for a nap in the sick bay if he needs to.

What is your top tip for employees with your condition?

Be honest.  The biggest mistake I made was trying to hide it.  Trying to cope on my own.   Also if your job makes you miserable, quit.  Or do what you can to make it better.  Being miserable in your work only exacerbates the feelings of despair that ME can bring.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

Sleep + belly laughs

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I’m brilliant at getting seats in crowded cafes – number 1 rule of having ME, always know you can find somewhere for a sit down and a cup of tea!

What advice would you give people who have just been diagnosed with your condition?

This is a really hard one to answer because it’s such a long time since I was diagnosed that I can’t remember my own reactions.  I will say this though – try to remember that it could have been so much worse.  When I was going through both my diagnoses  I had tests for some really scary things and I’m forever grateful they came back negative.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Be kind and don’t make a fuss.  Do some research of your own as if your family member is anything like me we really don’t like talking about it much!

And stick around.  I’m sorry to say I’ve lost a few friends over the years because of this illness, because they just don’t get that it’s not that I don’t want to go out all the time, but I have to prioritise things.  Find some lo-fi activities that your ME diagnosed friend can join in (popcorn and DVDs is always a winner here!)

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

Please help card in French for people with IBD

Travelling abroad with an IBD, indeed any health problem, has a few additional complications on top of the standard hassle of not forgetting anything important, leaving on time and not losing your bank cards.

To help ease some of the stress I’ve developed a variation of the NACC’s ‘Can’t wait card’ for you to use when travelling abroad.  This card will help you communicate when you need to use public toilet facilities but don’t know where they are. If there are no public facilities nearby then the card also asks if  you can use private / staff facilities. The second side of the card is for those occasions when there is a public toilet, but you need to pay to use it – and you don’t have the right change.

Although many people speak English across the world, and there are phrase books that help you, my experience is that rushing to try to find a toilet is stressful and difficult to communicate. You are often misunderstood. These useful phrases often don’t appear in phrase books. In some rural areas the majority of people don’t speak English.

Please help card in French

I have had the following text translated into French and put it into a Credit card sized pdf that you can print out and laminate. You can keep it in your wallet/pocket for emergencies.

This is free to download but if you can afford to it would be great if you could donate to a charity which supports Crohn’s and Colitis .e.g. through my Just giving page.  If you can’t print this out and laminate it yourself please contact me as I can do this for you. I will charge a fee for materials, postage and a donation.

What the card says

SIDE 1:

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or hazardous to other people.

Please can you show me where the nearest toilets are that I can use?

If there are no public toilets nearby, may I use your staff facilities?

Culturally appropriate way of expressing thanks

SIDE 2.

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or dangerous to other people.

I do not have the entrance fee required to use these toilets, and because of the pain I am in I do not have time to get the correct change.

Please will you let me use these toilets? I will come back and pay afterwards.

Culturally appropriate way of expressing thanks

Directions

  1. Please make a donation to Crohns and Colitis UK through my ‘Just Giving’ page
  2. Print out the Please help card in French
  3. Cut out the two card shapes below
  4. Glue them together, so the text is showing on the outside
  5. Place in a laminating sleeve
  6. Laminate!
  7. Alternatively you could make two cards by not gluing them together and laminating them separately.

Acknowledgements

Grateful thanks to Irma Elizabeth, languages teacher, for her translation of the text into French for this card.

An if you have missed the embedded links here they are:

Just giving donation page for Crohn’s and Colitis UK

Please help card in French

Over the next couple of days I will be uploading a Frenchnew language versions of the card. Do you speak another language? Can you help this project? Contact me if you can!

My chronic (allergies and hyperinsulinemia) career

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Anonymous,  from this Universe has kindly agreed to be interviewed. Thanks Anonymous!

Anonymous has her own business in the field of beauty therapy and works collectively with other people in the same field as her on various projects.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your health problems?

I was considered healthy and normal till the birth of my 3rd child. The trauma from that resulted in severe allergy to beef, dairy, and anything from a cow. She was born with the same cow/dairy allergy, had projectile vomiting, lost weight and had upper GI testing etc. I had to delete all dairy/cow from my diet so she could gain weight and be healthy. With continued time, the allergies have gotten more severe and diverse. At this time I have to wear orthotic footwear to keep my feet healthy,hyperinsulinemia is  controlled with diet and medication. I also fail to metabolize B-12 so must do injections 4 times a week. I also have thyroid issues, I take thyroid pills and have to do that daily . This all means that I have a limited diet either because of allergies, or to manage my hyperinsulinemia.

Did you know about your condition before you were diagnosed?

With the food issues it took me while to figure out what  items were causing intense pain, nausea, diarrhea, and vomiting. I knew something was wrong, just not sure about it all – the hyperinsulinemia was diagnosed by the Doctor.

How did you find out further information about your condition when you were diagnosed?

My metabolic nutritionist is also my Doctor and he diagnosed everything, and explained it all.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your conditions?

I do not use the internet to help me with my illness – I did use the internet to locate and  learn more about Nambudripad’s Allergy Elimination Technique (NAET) and acupuncture.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

I really have to watch what I eat so I don’t have the nausea and diarrhea, and I have to do my injections on time or I fall asleep at inappropriate times. I need to eat at regular times to keep my blood sugar stable.

 What is your top tip for employers – what could they do to support people with your conditions?

Understanding not everyone is the same, not all of us can survive on cheap pizza and bread – work schedule must allow for food and medications to be administered as required.

What is your top tip for employees with your condition?

Pace yourself, follow your diet, and take your medications

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I eat ice cream because it is allowed on my diet occasionally – even though it is dairy. I also try to rest well, carry my medications with me and try to get lots of sunshine and work to keep strong and healthy

Do you think you have developed any personal skills or qualities as a result of having your condition? (I for example have encyclopaedic knowledge of public toilet locations!)

I know the signs of impending diarrhea and keep my anti diarrhea pills stashed close to me at all times, I can stave off an attack if I get the pill right away. I know what I can eat where and how to order meals out to stay safe.

What advice would you give people who have just been diagnosed with your condition?

Be open to other ideas and opinions, and you can developed food allergies to something you have eaten and enjoyed for your entire life at any time 😦

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Please do not feed them something they have told you they are allergic to, it can be really unpleasant or even fatal in some cases. Please do not tempt them with foods that they shouldn’t eat, it is hard enough to cope without someone deliberately trying to sabotage you!  Do not tell people the person is just picky or doesn’t like something anymore – they probably would love to eat like they used to. I will not “just grow out of ” this. I can take care of my dietary needs, and do not want anyone to feel they have to bother with it. I do quite well if left to my own devices.

Have you used alternative methods of treatment?

I have used Acupuncture and NAET to diagnose and treat some issues .

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic (Coeliac) career

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Jenna Blair from Shrewsbury, Shropshire has kindly agreed to be interviewed. Thanks Jenna!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Coeliac history?

Coeliac history  – I was diagnosed aged seventeen after many inconclusive trips to various G.Ps and around eighteen months worth of steadily increasing symptoms. Explanations of my ill health, extreme exhaustion, loss of memory and fainting fits ranged from being told I was ‘doing to much’ to suggestions of leukaemia and ME. Severe anaemia led one G.P. (I will never forget her) to question whether Coeliac disease may be the cause of all my problems. A blood test hinted that this may be the case and an endoscopy proved her suspicions. Within a few weeks of adopting the gluten free diet (the only way to treat/manage Coeliac disease) I had what I can only describe as a new lease of life. Looking back, I had got so used to feeling so ill that it was only when I became well again that I realised how truly terrible I had felt for such a long time.

And how about your working life? What career path have you taken?

I studied English at degree level and then went on to complete a PGCE in primary education leading to a five year teaching career. I now work as an administrator for a dance company with a successful education vein and other arts based organisations. I am looking forward to building an arts based career with a focus on education.

Did you know about your condition before you were diagnosed?

I did not know about Coeliac before my diagnosis.

How did you find out further information about your condition when you were diagnosed?

The Coeliac Society (now Coeliac UK) was an essential source of information and guidance.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Coeliac UK and many gluten free food manufacturers (such as Juvela and Glutafin) have useful websites, many featuring excellent gluten free recipes.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Situations involving food – e.g. Professional development courses with lunch included – usually sandwich based which is not suitable for anyone following a gluten free diet. I always take my own lunch along to this type of event nowadays and do my best not to feel awkward about tucking into my own homemade snack while others linger around the buffet table!

What is your top tip for employers – what could they do to support people with your condition?

Provide/request gluten free options for Coeliac employees at professional development and similar events.

What is your top tip for employees with your condition?

Forward planning – think ahead in terms of food and always take your own along if you are unsure whether there will be gluten free options. It’s hard to concentrate if you’re hungry!

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I stick to strict gluten free diet so luckily my symptoms don’t flare up very often.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

An understanding and tolerance of anyone having to follow a restricted diet … and an increased interest in and love of food and cooking.

What advice would you give people who have just been diagnosed with your condition?

Advice to newly diagnosed Celiac – contact Coeliac UK, ensure you stick to a strict gluten free diet and look forward to feeling well again.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Newly diagnosed Coeliacs need support to cope with following a restricted diet and also with coming to terms with having a chronic, life-long auto-immune deficiency.  Following a gluten free diet can make people feel awkward and embarrassed and family/friends can either add to or help with these feelings.  Jokes about being a ‘fussy eater’ are not funny … understanding, patience and an interest in the condition are much more helpful.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

Please help card in German for people with IBD

Travelling abroad with an IBD, indeed any health problem, has a few additional complications on top of the standard hassle of not forgetting anything important, leaving on time and not losing your bank cards.

To help ease some of the stress I’ve developed a variation of the NACC’s ‘Can’t wait card’ for you to use when travelling abroad.  This card will help you communicate when you need to use public toilet facilities but don’t know where they are. If there are no public facilities nearby then the card also asks if  you can use private / staff facilities. The second side of the card is for those occasions when there is a public toilet, but you need to pay to use it – and you don’t have the right change.

Although many people speak English across the world, and there are phrase books that help you, my experience is that rushing to try to find a toilet is stressful and difficult to communicate. You are often misunderstood. These useful phrases often don’t appear in phrase books. In some rural areas the majority of people don’t speak English.

Please help card in German

I have had the following text translated into German and put it into a Credit card sized pdf that you can print out and laminate. You can keep it in your wallet/pocket for emergencies.

This is free to download but if you can afford to it would be great if you could donate to a charity which supports Crohn’s and Colitis .e.g. through my Just giving page.  If you can’t print this out and laminate it yourself please contact me as I can do this for you. I will charge a fee for materials, postage and a donation.

What the card says

SIDE 1:

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or hazardous to other people.

Please can you show me where the nearest toilets are that I can use?

If there are no public toilets nearby, may I use your staff facilities?

Culturally appropriate way of expressing thanks

SIDE 2.

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or dangerous to other people.

I do not have the entrance fee required to use these toilets, and because of the pain I am in I do not have time to get the correct change.

Please will you let me use these toilets? I will come back and pay afterwards.

Culturally appropriate way of expressing thanks

Directions

  1. Please make a donation to Crohns and Colitis UK through my ‘Just Giving’ page
  2. Print out the Please help card in German
  3. Cut out the two card shapes below
  4. Glue them together, so the text is showing on the outside
  5. Place in a laminating sleeve
  6. Laminate!
  7. Alternatively you could make two cards by not gluing them together and laminating them separately.

Acknowledgements

Grateful thanks to Pauline Kussell, student from Germany currently residing with my friend Carla in Shrewsbury, for her translation of the text into German for this card.

An if you have missed the embedded links here they are:

Just giving donation page for Crohn’s and Colitis UK

Please help card in German

Over the next couple of days I will be uploading a French version of the card. Do you speak another language? Can you help this project? Contact me if you can!

My top five books for when I am ill #1

When having a flare up or a hospital stay, there comes a point when you are ill where you transition from complete incapacity to incapacity and boredom. Wooziness from painkillers and IV antibiotics makes concentration difficult, as does general life on the ward with it’s interruptions and strange sleep patterns.

Reading is a great way to pass this time, but anything too complicated makes my head spin.

Maybe you are looking for something to put in your hosital bag, or a gift for someone stuck on a ward somewhere. Here are my top 5 books for this period of time, and they work equally well for convalescing at home too:

1. Anything by James Herroit but I particularly like ‘all creatures great and small’ and ‘It shouldn’t happen to a vet’.

2. Anything by P G Wodehouse but in particular the ‘Carry on Jeeves’ from the Jeeves and Wooster series.

3. Anything by Agatha Christie but in particular The mirror crack’d from side to side and Murder on the Orient Express

4. Elizabeth David’s collection of articles ‘An Omlette and a glass of wine’

5. Driving over lemons

What are your top five books for the twilight zone between complete incapcity and incapacity and boredom?