Category Archives: life

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?

3 gentle moves to alleviate discomfort from being in bed – mobilising your shoulders

This series of movements focusses on the shoulders. These movements can be done lying in bed or sitting up. See which position your prefer by trying them both. If you decide to practice these lying down in bed, scoot down the bed a little and make sure you have plenty of space above your head – you’ll need to freely be able to move your arms above your head.

 

Make sure your read the guidelines first.

1. Shoulder mobilising A

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Slowly bring your right arm up over your head as you breathe in.

b) As you breathe out, return your arm back to the neutral position.

c) Slowly bring your left arm up over your head as you breathe in.

d) As you breathe out, return your arm back to the neutral position.

Recommendation – repeat five times, building up to ten times on each side.

2. Shoulder mobilising B

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Slowly bring your both arms up over your head as you breathe in.

b) As you breathe out, return both arms back to the neutral position.

Recommendation – repeat five times, building up to ten times on each side.

3. Shoulder mobilising C

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Bring your right hand across to your left shoulder and try to pull your arm across as far as you can, feeling a stretch at the upper back.

b) Release and return to neutral

c) Bring your left hand across to your right shoulder and try to pull your arm across as far as you can, feeling a stretch at the upper back.

b) Release and return to neutral

Recommendation – repeat five times, building up to ten times on each side.

Round off the routine by stretching both hands up over your head and having a good stretch.

3 gentle moves to alleviate discomfort from being in bed – mobilising your neck

This series of movements is all about mobilising your neck muscles. These movements can be done lying in bed or sitting up. See which position your prefer by trying them both.If you decide to practice these lying down in bed, scoot down the bed a little and make sure you have plenty of space above your head. Remember to read the guidelines first!

1. Mobilising your neck A

Start by tucking your chin into your neck and then:

a) Roll your head towards your right shoulder

b) Roll your head back to centre

c) Roll your head towards your left shoulder

d) Roll your head back to centre

Recommendation: Repeat between 5 and 10 times to each side.

2. Mobilising your neck B

Start in a neutral position and then:

a) Drop your head to your left, as if you are trying to bring your left ear towards your left shoulder

b) Keeping your chin tucked in, roll your head to centre and then towards the right, finishing with your right ear towards your right shoulder

c) Keeping your chin tucked in, roll your head to centre and then towards the left, finishing with your left ear towards your left shoulder.

Recommendation: Repeat between 5 and 10 times to each side.

3. Mobilising your neck C

Start in a neutral position and then:

a) Keeping your chin level, turn your head to the left

b) Return to neutral

c) Keeping your chin level, turn your head to the right

d) Return to neutral

Recommendation: Repeat between 5 and 10 times to each side.

3 gentle moves to alleviate discomfort from being in bed – lower body

Sooner or later after surgery, the novelty of a morphine pump will wear off, and horror (@.@) you realise that the nursing staff will actually take it away from you so you will have to retire from your career as an opium eater. You aren’t quite ready to get out of bed let alone go for a walk, but you are starting to want to move about a bit. As you are weaned off pain relief, aches and pains related to being immobile and in bed will present themselves to you.

This sequence of movements is aimed at mobilising the lower body and back, and you should be able to do them whilst in bed.

This series of movements is fantastic to do at any time, at any point. I use them all the time as warm up or cool down before my Yoga practice and also if I have back ache, it’s an excellent first aid treatment for getting rid of aches and pains.

Check out the guidelines first!

1. Pelvic tilt

In addition to helping you to engage with your abdominal muscles, this practice has the added benefit of stretching your lower back as well as activating your abdominal muscles.

a) Start by lying on your back and if possible come to a position where your knees are bent and your feet are on the floor or the bed. Put your hands on your hips and begin by pressing the back of your waist into the bed. When you first start doing this, this might be as much as you can do, and that is absolutely fine.

b) To move on, as you press the back of your waist into the bed, try to draw your navel in towards your spine.

c) For the third stage try to tilt your pelvis towards you as your press the back of your waist into the bed.

d) Finally you press down through your feet in order to lift your hips slightly off the bed.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

2. Hug knees to belly

This is a movement which complements the pelvic tilt very well. This stretches out the back of the body and can be very helpful in starting to restore your mobility. The action of bringing your knees up on to your belly helps you to get to know your insides again after your surgery.

a) Begin with your knees bent and feet on the floor / your bed. If you can, use your hands to draw your right knee towards your belly and hold this position for a few breaths and then release.

b) Keeping your knees bent and feet on the floor / your bed. If you can, use your hands to draw your left knee towards your belly and hold this position for a few breaths and then release. notice if this side feels different to the first side.

c) If you want to you could repeat this movement on each side, but this time pull your knee in closer to your belly. You should feel a stretch in your lower back and the back of your hips along with gentle pressure on your abdomen.

d) Once you have become familiar with the movement on each side, try bringing both knees on to your belly, one at a time. Hold for a few breaths and then release.

e) If you want to you could repeat this movement with both knees on your belly, but this time pull your knees in closer to your belly. You should feel a stretch in your lower back and the back of your hips along with gentle pressure on your abdomen.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

3. Supine Twist

a) Come to knees bent and feet on the bed or the floor, if you are doing this on the floor. Have your knees and feet together. Use your folded towel and both hands to apply gently pressure on your abdomen. Very gently drop your left knee to the left until it is resting on the bed / floor. If your knee won’t go that far, then use a pillow to support the knee at whatever height is comfortable for you. Then drop your right knee to the left knee so that the right knee and ankle are resting on the left knee and ankle.

b) Rest here for a few breaths feeling the stretch along the right side of your body.

c) Come back to the starting position. Have your knees and feet together. Use your folded towel and both hands to apply gently pressure on your abdomen. Very gently drop your right knee to the right until it is resting on the bed / floor. If your knee won’t go that far, then use a pillow to support the knee at whatever height is comfortable for you. Then drop your left knee to the right knee so that the left knee and ankle are resting on the right knee and ankle.

d) Rest here for a few breaths feeling the stretch along the left side of your body.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

Finish the sequence with a couple of repetitions or the pelvic tilt or the knees to chest.

Draft medical history proforma – so you don’t have to repeat yourself endlessly

One of the most frustrating things about Crohn‘s (especially if you have blockages and adhesions) is that you can unexpectedly end up in hospital all over the place. I had a period of a few years where every holiday was doomed to end up with me in hospital somewhere – eventually the problem was found.  It turned out that there was a grapefruit sized abscess wrapped around my bowel which led to exciting impromptu re-enactments of ‘that scene’ from the exorcist.

I now have an outline of my medical history to give to medical staff on my ‘travels’. The aim of the outline is to help me remember key dates and events, which can be forgotten in the begging for morphine confusion of admission.

I have attached a draft version of the outline here to share with readers: Summary of medical history_Draft in order to get some comments from you about it.

  • Is there anything I have missed?
  • Is there about the right amount of space or do you want more?

Medical staff often ask you to repeat your medical history as a way of:

  • building rapport
  • checking you are compos mentis (composed mind)
  • checking that you are not suffering any ill effects of medication
  • checking for delirium that comes with fever

So having an outline to hand won’t necessarily reduce the number of times you are questioned but it will make a difference when it matters.

It is also useful to have to hand so that a carer, friend or relative can give all the important details to medical staff if you are not able to coherently communicate. This can happen if you have a fever or are in considerable pain.

So do let me know what you think about the draft version (here: Summary of medical history_Draft) and then I will upload a final version for you to write your own outline.

Making a Bucket List – AKA Exciting things I need to do…

The Bucket List (2007) is a film about two terminally ill men played by Jack Nicholson and Morgan Freeman. So after that cheery start I’ll explain….The title and the theme of the film refers to a list of things that the two characters would like to do before they “kick the bucket”. In the film, one of the characters has a lot of money and so is able to fund the bucket list of the other – adding several new experiences to the original list along the way.

With a chronic disease you can often impose limitations on what you can and can’t do – but how often do you actively pursue new experiences / things that you can do, or could do with a bit of help?

Making a bucket list can be done at any point in your life – you don’t need a bad diagnosis to spur you into action – though that will focus your mind somewhat.

Why not write down your dreams and desires and then start working towards them? Things that seem unattainable now can seem much more realistic if you know you have several years (or decades) to acheive them.

Do it!

Do it now!

Once you have written your list try to do something towards your dreams and desires as often as possible.

This blog is one of the items on my bucket list!

So what is top of your bucket list?

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!