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This morning I received a letter from someone I used to work with.  A lovely letter but it made me feel sad all the same.  It made me realise that I’m really not going back.

It feels strange even calling it my ‘work’ now, when I haven’t actually been there for almost two years.  We are stuck in a bit of a quandry where I can’t resign because I’d lose entitlement to a certain financial benefit; yet they can’t end my contract because Still’s Disease is covered by the Disability Act and if they did I could make an issue of it – not a good advertisement for a top Special Educational Needs school.

The decision we have made recently is to go for Ill Health Retirement, which means an independant doctor needs to agree that I will be unfit for work for the next X amount of years.  My employers think this should be straightforward, but we have played it quite positively up until now, hoping against hope that I would one day be well enough to return. That could go against me now, even though my Rheumatologist’s report will stress how dire my circumstances have become.  As sad as I am to see the job go, I just want it all tied up now. I’m tired of the ‘disciplinary’ meetings and reviews; the phonecalls and letters, of just having it lingering in the background all the time – guilt.

The letter was from one of the few people that I’ll miss and I’m glad that he wrote, because I made the mistake of isolating myself from them; hiding myself away, embarrassed by the difference my illness made to me from the person I was when ‘well’ and working. I kept telling myself I’d go and see them when I was feeling up to it, but up to it never happened and now I feel bad that two years has passed. This letter has spurred me on to write to the ones I will miss and hopefully we will be able to keep in touch away from work. Maybe one day I’ll even feel strong enough to go into the place that I used to love so much, a space that was once mine.

And hopefully I’ll find another job one day, one that I’ll enjoy just as much and be able to give my all to. Because, despite the retirement label, I can work again in the future if I’m declared fit and that is my goal.

L

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I wanted to get back to writing about some topics that are important to us all and work seemed a good place to start, since it is one of the major concerns to people when first diagnosed with Still’s Disease. It’s also something I’m having to seriously think about right now.

I want to start on a positive note by saying that it is definitely possible to work when you have Still’s Disease – a question I get asked a lot by the newly diagnosed. Of course, you first need to find the right treatment plan to control your Still’s and this can take longer for some than others. Every individual case of Still’s is different and people’s ideas of work are different too, so there are a lot of factors at play; but, generally speaking, it is possible. And not only is it possible, it is beneficial too.  Work can provide the Still’s patient with exercise, stimulation, friendship, confidence and a sense of achievement, all of which help to combat elements of depression that often accompany chronic disease.

But that’s not to say it is easy.

When I was younger and people asked me what I wanted to be when I grew up I would answer ‘a vet’ or ‘a doctor’ or ‘a journalist’… all very different but all careers. I was bright and had no doubts that I would one day have a good career, earning a decent wage. Half way through high school though, when I was struck again by illness after a long period of remission, this all changed. I stopped aiming for careers and simply aimed at being well enough to work a job, any job. I still went to university and even gained a first class degree, but I never felt that I would realistically be able to manage the pressures of a career.

I still don’t know whether I was right to give in to Still’s in this way and it’s not something I’m advising either. I know some people would argue that you can overcome disability and shouldn’t let it get in the way of your dreams. Usually I’m one of the first to claim as much, but a big part of me thinks I’m just being realistic in this and allowing myself to work around the Still’s rather than having it knock me back constantly. And here is why:

Studying was easy enough – I could pace myself and work around the bad days; rest when I needed to; struggle through an hour lecture, when feeling ill, knowing that I could catch up on my borrowed ‘spoons’ the next day… But even the most tedious working day is structured and (mostly) unbendable.  If you’re late to work because you really needed that extra half an hour to get on top of your pain, to shake off the stiffness in your joints or simply to catch up on sleep, is your boss really going to be amenable or could you find yourself facing disciplinary action? And when are you going to catch up on all those ‘spoons’ you lost ploughing through the bad days to reach targets and deadlines? There’s a good chance that all those borrowed ‘spoons’ are going to keep piling up until, one day, they come crashing down around you.

Which is exactly what happened to me at the start of this flare.

I was fortunate enough to find a combination of medication that controlled my Still’s symptoms and I took the risk of accepting a fulltime job. It wasn’t a career exactly, but it was a job that I enjoyed and it felt fantastic just to be working. Things started off well and I managed fulltime hours for about two years, but slowly more and more symptoms began to come through and I was spending all my spare time trying to fight the fatigue or sleeping to catch up on all the borrowed energy I was surviving on at work. Soon, even that wasn’t enough, and I kept on deteriorating until I ended up in hospital.

I know that working fulltime wasn’t completely responsible for this two-year flare from hell, but it sure didn’t help and it has made me aware of how much harder it would be working in a high-pressure career. My job was relatively easy and stress-free, the type you could leave behind at the end of the day, unlike most careers. That makes me think I made the right decision to change priorities back then; that I wouldn’t be able to manage a career as such. But knowing something, doesn’t necessarily make it easy to accept and I’m often tempted to change my mind.

Anyway, I am now at the point in my rehabilitation where I can actually consider returning to work at some point in the near future; this time working part-time hours. I had hoped to return to my previous job; I still have a contract with them but, even so, it seems they are reluctant to take me back on, knowing my medical history and having experienced my ‘shortcomings’ first hand. It will go before a board of governors, who will make a final decision in the next couple of months, although I’m not expecting things to go in my favour.

Which got me thinking – would it be better to find some business venture that I can pursue on my own terms rather than searching for employment again? I have so many concerns about working for an employer when I have an ongoing medical condition, now that I have experienced ‘the system’. I’m sure these questions are the same for a lot of people so I’ll make a list (or two):

Returning to a Previous Workplace:

  • Will my employer and/or work colleagues treat me differently? Will they lose the respect they had for me before I was off sick? Will they hold back on giving me certain responsibilities because they worry I will have further prolonged absences in the future or that I cannot cope with them physically? Will I fit in with them on a social level or will I be treated as an outcast?
  • Will my job be at risk? Will there be more chance of me losing my job to funding cuts than others, because I am now seen as disposable or a liability? When it comes to such decisions, most employers would surely choose employees that are healthy and won’t require the additional costs of covering absences of ill health.
  • Will there be resentment towards me?  Will my employer feel trapped into employing me because of legal legislation in the disability act? Will colleagues feel I don’t pull my weight or that I receive special treatment? Will they begrudge me the time I need for hospital treatment and doctors’ appointments?
  • Will I be able to manage my previous working hours and workload and what happens if I can’t?  It is impossible to know what our bodies are capable of after such a prolonged period of illness, until we actually try. Therefore, it is impossible to make promises or commitments, even with a phased return. What happens if I realise something just isn’t going to be possible?
  • Will they provide adequate support? It can often look great on paper but I need to make sure it translates into reality too.
  • Will I still be considered for promotions?  Or again, will I now present too much of a risk to put further trust and responsibility in.

Finding New Employment:

  • Should I tell my new/potential employer about my disability / medical history? I have always been honest about my Still’s Disease in the past, but this is the first time it has gotten in the way of my employment significantly and seeing people’s reactions to it makes me wonder if it would only disadvantage me.
  • How do I explain my previous absences from work to potential employer? Knowing that there is every possibility it could happen again and require them to fund cover and/or sick pay? Surely this is going to put off every employer from employing me and yet it would be wrong to lie? Some people use this factor to whittle down the number of applications, without even looking at the rest of the qualifications, no matter how brilliant!
  • How do I know that I will be able to manage the duties and responsibilities? As above, it is difficult to know what our bodies are capable of and this is bound to be more difficult without a ‘gradual return’ to work, where there is awareness of my medical background (and hopefully some support).
  • How much do I disclose to colleagues about my limitations? On one hand I don’t want people expecting me to do things that I can’t manage, on the other I don’t want to seem incapable. Plus, again, I want to be able to fit in and hopefully make friends.
  • What happens if I do struggle or if I need to take time off work due to ill health?
  • How will I manage the pressure of potential absence that having an illness puts on me? It’s not just the physical side of the illness we have to do deal with, but often the psychological effects too. Knowing that I may struggle, need time off work, etc in the future can be quite stressful in itself.
These are just some of the questions I can think of right now, but I know there must be many more. I’m sure that anyone who has considered employment or has had to have time off work because of their Still’s Disease will recognise a lot of them. They may sound very negative, but in my experience they are realistic issues that we need to think about. Unfortunately, despite Disability and Equality Acts within the workplace, many employers do not want to employ people with complicated medical backgrounds and histories of prolonged absence – we are a financial burden.

Despite this, my gut feeling is that we should be honest with potential employers, at least in the later stages of the employment process (when they have already seen how brilliant we are!). This means that if you do struggle or need time off for appointments or due to a flare, then they can show some sort of willingness to support you. Otherwise, if it did come to a flare of your illness, there may be some resentment that it hadn’t been mentioned in the past, that they weren’t given the chance to support you or simply that they wouldn’t have made the same choices with that knowledge, as wrong as that may be. Plus, surely keeping something like this to yourself is going to fester inside you and just create additional stress that you don’t need? That’s my opinion anyway.

If returning to your previous job after a prolonged absence, it is important to get the right support in making that transition back into the work place – both physically and emotionally. Most employers in the UK are entitled to provide support to employees with a disability and Still’s Disease is covered by the Disability Act here. Help that has been suggested to me by Occupational Health so far has been: Transport to Work through Access to Work; Alterations to my workspace to ensure my desk, chair, computer etc are all positioned correctly and comfortably; Voice recognition software to limit typing time, hands-free phone headsets, relocation to a different role if necessary, workplace assessments to see if any other adaptations could be made to make my working life easier… and so on.

Even more important though, is finding work patterns that fit around your Still’s:

  • Suitable hour – Working part-time is an obvious option, but how are these hours broken down – across two days or in smaller chunks throughout the week; which suits you best?
  • Suitable times of day – Maybe afternoons are easier for you than mornings; this needs to be taken into consideration too.
  • Suitable days – you may not be up to much after taking medications such as Methotrexate early on in the week, but much better later on in the week.
  • Appropriate breaks – Both ‘tea breaks’ within your day at work and time off in between working days, to give your body chance to recover its energy resources.
  • Opportunities to alternate between sitting and standing throughout your working hours if possible, to make sure joints aren’t over-stressed but also that you don’t seize up either.
  • Some people may prefer to leave work behind at the end of the day; others may like the opportunity to be able to pace themselves by being able to take it home with them.
  • Think about traveling to work and distances / effort it takes getting there; are there any options to work from home if necessary?
  • Try and find a job that gives you plenty of chance to rest and pace yourself, with minimal stress; perhaps something you can even enjoy!

It may be that these terms & conditions rule out the high-flying, high-paying careers you dreamt of once, but surely your health is more important? If you think you will struggle financially, see what benefits you are entitled to supplement your wage with.

So, to round things up. You can have Still’s Disease and manage to work and it is beneficial to do so, but you may have to make some changes and sacrifices and it isn’t always going to be easy. You will always have an extra workload from the Still’s itself and that can be quite the pile!

Pace yourself,  keep stress to a minimum and get support from others and you should be okay.

Good luck
L
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Useful Links:
Working With Arthritis (Arthritis Care)

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Most people get ‘Monday Blues’ on a Monday morning because it is time to go back to work, after two days off doing whatever they please. The working week seems too long and the relaxing weekends too short; surely, a whole year of nothing but time to yourself, with no work to go to, must be heaven – right?

Wrong.

If anything, I’m getting the Monday morning blues waking up to an empty house, knowing everyone else is at work, doing something constructive, making a contribution, while I’m left for another day doing…

Well I’m not sure, what is it I do that makes time pass so quickly?

I’m increasingly stricken with panic as the weeks fly by and I appear to be doing nothing with my life.  One person reassured me that I am here and breathing and healing and will get to where I need to be eventually; that, relatively speaking, this is but a small fraction of time.  I can see the sense in that but I still find it hard to relax into the here and now.

Of course I know I’m not well enough at the moment to return to work and I’ve had plenty of people tell me that my priority should be to get myself fit and healthy once again; but it is hard sitting at home, feeling as though life is passing you by. Especially when I know that I’m capable of so much more.

There is nothing wrong with my brain, in fact it works quite well. Despite missing a whole year of school during my GCSEs, I managed to be a straight A student and teachers hoped I’d become a vet or a doctor; but, I spent so much time in hospital over the next few years that such careers soon became just a dream.

Instead, I turned to my passion for reading and studied English Literature.  Again, I was a first class student and quickly gained the attention of tutors, who hoped I’d carry on to become an academic and lecturer in the department.  I started the MA but suddenly had a change of heart when I realised I would be spending my life arguing about ‘possibilities’ – I mean who cared if Shakespeare’s Sonnets suggested he might have been a homosexual Catholic, there was no way of knowing for sure and who would benefit from knowing anyway?

So I got myself a job working in the library of a Special Educational Needs school, helping with literacy and providing out of school activities and support for parents. I enjoyed the work and this is the job that is still (so far) waiting for me, but again I’m feeling a restless need to do something more challenging and worthwhile with my life; yet, something I can manage with the Still’s. Once I’m over this flare of course.

I quite often feel like this during a major flare and, in the past, have always used them as a fresh start; only this time, I don’t know where to begin.

*sigh*

While we’re on the subject of work, after a tough few years, one fellow Still’s sufferer, Kate Dowding, has achieved her lifelong dream of working in law and was recently featured on the BBC programme, Saints and Scroungers, which addresses the problem of benefit fraud v benefit support. Obviously, Kate was the Saint and you can still catch her (and her assistance dog, Zara) on BBC iPlayer, using the following link:

Saints and Scroungers, featuring Still’s sufferer Kate.

or Saints and Scroungers

Inspiration for us all,

L

Edit: Just found this post, which I guess is related – Feeling Stuck in a Rut

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It’s the day after my first Tocilizumab infusion and I’m feeling a bit rotten but Im guessing that is more to do with the long day, sitting in uncomfortable chairs and so on, rather than the drug itself. Thankfully, there has been no further signs of reaction so I’m hoping that was just a one off.

I had an early wound care appointment at the clinic and then I planned to spend the rest of the day taking it easy, to save some energy for tomorrow.  The wound is starting to close up at the ends and turn a nice shade of purple there, but is still overgranulating along one edge, meaning it is not healing as it should. Today the nurse covered it with a double pressure pad to encourage the excess tissue back where it belongs. I don’t think it is a major problem and it isn’t bothering me in anyway, but the scarring will be much neater if it stops overgranulating and heals as planned.

By the time I got back home, the postman had been and I had a letter waiting for me. Inside where two things: Firstly, a copy of the Occupational Health report on my current condition and then an appointment date for my next hearing with the Head and Human Resources – a week today.

The doctor’s report was only a paragraph long but it was still hard to take in his view of me. I’m forever trying to look on the bright side and convince myself that things aren’t that bad, so when I see things in writing from someone else, it comes as a bit of a shock. Basically, he says I suffer from severe Still’s Disease and am failing to respond to potent medications, meaning it is difficult to predict if/when the condition will be stabilised enough for me to return to work. *sigh*

Don’t get me wrong, I’m still sure that we will find a medication that will stabilise things as we have done in the past; I had a good few years with only occassional flareups and minimal joint involvement so I know it is not impossible. But, I also know that it is becoming more difficult and taking longer, and I need to allow myself that time to stabilise without feeling guilty about work.

Which brings me on to my next point: The Stage 2 Capability Hearing. I don’t know what my management is thinking about the current situation, but I imagine that they want someone to be doing my job and would rather terminate my contract than leave the situation long and drawn out. However, I’d also guess that they don’t want to risk terminating my contract in case there was some comeback from the Equality Act, (especially since I work at a SENs School). Then I’m torn between fighting for my job and feeling that I could do without the niggling guilt and added stress (like capability hearings) that come with having it right now.

Even having to think about it all is more than I want to do right now; it is so hard to make decisions and handle situations like this when you feel so flat.

L

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Needless to say, after being off work ill since January, my employers are getting impatient and wanting an idea of when/if I’ll be able to return to work. I had my second appointment with their Occupational Health Department last week; once they write a report and my employers have seen it, it will be time for my Stage 2 Capability Hearing, which I’ve been told will be more formal than the previous ones.

The appointment itself went well, to the point that the doctor said that I seemed even worse than in February physically, with more obvious joint involvement at this time. But that is the pattern of Still’s Disease – the fevers, rash and systemic symptoms seem to hit hard initially before making way for the joint problems. He kept a copy of the notes I’d made, outlining what had happened since February and asked how I was ‘mentally’. Why is it that I get the feeling he didn’t believe me when I said ‘fine’? Perhaps it was the questionnaire that he gave me to fill out; the last question being ‘did I ever think I’d be better of dead?’.

Fortunately for me, the answer is no, because I can only imagine how much harder all this would be for someone suffering with depression too.

I do feel anxiety / guilt with regards to work though, because I’m not there and I can’t give them any answers. Most of the time I feel that it would be better if I just resigned so that anxiety wasn’t niggling away at me the whole time. I know jobs are hard to come by and I should be grateful that they have kept my position open for so long, but work just isn’t the most important thing to me – getting myself well and having a life is. There are plenty of options to start afresh, and I think that is ultimately what I need.

For now though, I just have to wait until I hear from work about that next meeting and think how I want to approach it.

L

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My line manager phoned me earlier. She said that it had been overlooked that the headteacher had requested an appointment with me for tomorrow – for my Stage 2 Capability hearing.  Since I hadn’t been informed, I wasn’t prepared; plus the HR representative said that I would need another assessment by occupational health beforehand, (just to make sure I’m not pulling a fast one).  The end result being that there is no meeting tomorrow but it is in the pipeline.

She also asked how I was doing and so I told her that things still aren’t great and that the new medication hasn’t been effective as yet.  I’ve no idea what she makes of it all, but I feel so frustrated to be saying the same things over and over to them, guilty almost, as if I should be giving them better news. It must be difficult for them to get their heads around an illness that the doctors can’t immediately treat successfully, to understand that it is a process of trial and error that can take a huge amount of time.

Sometimes, I wish I could tell them how frustrating it is for me to have to go through it, that I’m not just sat at home enjoying the break, but am in pain every day and so very limited in the things that I can do.  I know there will be people questioning it; in over six months, nobody other than my line manager and the headteacher has been in touch; my supposed work ‘mates’ have all but forgotten me, annoyed at the fact that I haven’t returned sooner.

At the last hearing, things had seemed promising and I was looking forward to starting the Orencia with the hope of returning to work in mid-September / October.  All those weeks have past and still no improvement; instead, it’s likely that I’m facing another wait to decide on a new approach, apply for treatment funding, and further uncertainty surrounding the effectiveness of whatever approach we choose.

I didn’t ask for any of this, nor can I change it. I approached Orencia with an open mind, feeling positive; I have followed every instruction from my consultant, even those that I wasn’t keen on. Yet I feel I am in the wrong, that I am being judged negatively – these are disciplinary hearings after all.

I’m almost hoping that they do give up on me and end my contract, just so that I don’t have this niggling guilt in the back of my mind.  I know that I’ll bounce back and find something else once we do get it right.

L

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As of Wednesday I will not be receiving a wage or Statutory Sick Pay because I have now been off work for six months.  You can’t imagine how guilty this makes me feel, but I have to remind myself that there is no way that I could get through even a day there. I’d end up right back in hospital like I did in December and January.

My next meeting with them is in September; I think that will be the decider.  I hate to admit it, but part of me feels like I need to put that period behind me and move on to something else, a fresh start. I quite often feel like that after a flare –  sudden motivation to do something bigger and better – and it’s usually worked out for me.

Anything could happen between now and September though; until then I’m waiting on them to fill in a form and forward it on to me so that I can apply for ESA.  Now that should be fun.

L

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