Do you work with APS, Can you work?

Hi all

I am currently attempting to be rehabilitated back into my job after 11 months off sick, after a PE and resulting lung problems. My specialist has said to me, it really depends on how I feel, if I go back at all or when. My company have had concerns about my going back to work and it has proven a little difficult finding a happy medium in finding the right rehabilitation back to work package. I should say my work involves visiting constructions sites, lots of driving, (anywhere up to 1000 miles weekly) walking and site visits.

I had one of those 3am thought moments last night, and wondered how your APS has affected your work?

Your comments would be appreciated.

Many thanks



34 Replies

  • G'day Lesley,

    I am back at work and have been for 11 years following a stroke 12 years ago. Still doing the technical job I was doing pre stroke. The sort of stroke I had was one in which 60% of people do not survive it. I not only survived but got back to work.

    So my introduction to APS was an arterial clot & bleed causing a massive stroke. Whilst in intensive care I added a large DVT (ankle to knee) and a PE

    My story can be found at


  • Thanks Lucky!

    seems you truly were the lucky one..... or maybe your determination and inner strength and maybe family support too that did it!

    Keep well



  • Hi Lesely_D,

    I was off work for almost a year when I was initially unwell, I was lucky to have a very supportive Occupational Health Doctor who advised my managers on the fluctuating nature of the condition. He also made clear to them that Hughes Syndrome comes under the Disability Discrimination Act, so they may be required to make reasonable adjustments to my role, if need be.

    I returned to work last year (having for some time doubted if i'd be able to at all) on a part time rehabilitation base. I went on to manage about 6 months full time before the fatigue began to be an issue again, and that's when I decided to drop a day so I can have a rest day mid-week.

    My manager's response when I initially approached then about dropping a day was that they were amazed that i'd lasted full time for as long as I did! They were very supportive (thus far), the reduction in hours is for a temporary period of six months and will be reviewed in the summer.

    I hope this helps!

  • I think the success or not of what happens when you return will lie in the attitude of your company. Whilst some make the reasonable adjustments willingly and help all they can, they soon lose understanding when the fatigue means you just can't get to those early morning meetings or in your case drive to the place you need to get to.

    My company was willing to tow the legal line but the bottom line was that my manager wanted an employee that pulled their weight 100% of the time and the other employees also got fed up with picking up my work load. They pushed HR to get me transferred and redeployed which caused acrimony and stress and in the end I was sacked for medical incapacity. I will add I was not dx at this point with APS and SS but I had other medical conditions which caused fatigue and chronic pain.

    Looking back I am glad I did not return because the pressure and stress of trying to keep going was never going to work, however I can quite see that a really understanding company with the right job and environment would have worked well.

    Its a tough decision but remember you spend more time at work than you do at home so you need to be happy in that environment. I hope it works out for you.

  • hi

    When i first became ill with APS and had multiple PEs i was off work for just under a year. The company i work for allowed me to go back to work gradually like you my doctors said it depended on how i felt.

    I still work for the same company a few years on i have been in and out of hospital during this time and off wrk for months at a time.

    Luckily each time i am ill my employer agrees to let me get back in to work gradually at the moment ive just gone back to wrk 1 day a week after being off for six weeks and am waiting for surgery so will have to be off again soon.

    I think it depends on your type of job and how flexible your employer is willing to be this illness is very unpredictable.

  • Thank you all for such helpful replies - I am a hahaha errrrmmm ok I will take the stick :) - I am a ........... Health & Safety Officer (yes I am honest) Yes I do take a bit of stick, but to be fair I am also making light of it in this message only.

    My firm, well they say they are being helpful, but, at the moment I am on forced sick leave as they cannot assist with my rehabilitated phased return of work as they don't have any admin work, which is what the occupational health doctor has suggested. With a 5 week return to my role starting at 20 hours increasing by 5 hours a week. I kind of get the feeling they won't/can't or are not prepared to adjust my job to suit my illness, and think they may terminate my contract based on the fact I am no longer able to fulfil my role. Also I found working 20 hours a week incredibly tirying and suspect I will struggle with full time ours plus 3+ hours driving each day. I am due to meet with my HR and line manager next week so I guess I will know more then.

    However, it is good to hear your points of view on how you cope with working with APS. so again thank you.



  • Hi lesley,

    I was working full time when i had my second stroke in 2008, before this i was using my wheelchair (had first stroke in 97) and the |APS had gone into remission, so the adjustments the company made for me was things like wheelchair acces and lower higher desk etc, we also used things like Access to Work (if you want more info on this will either blog or email). After the second stroke my APS symptoms came back and the stroke paralyyzed me of the right side, the company still did not fire me but i was and even now after rehab etc my aps symptoms effect me to where i could sleep for england and my joints feel like broken glass.

    The company started me off as sick then the used there insurance and has now put me on long term medical sick and after 4 years nothing has changed so i think my story is it depends on how physically you are, how mentally you are and also how much the APS has flared up.. There is a number of benifits you can apply for depending on if you cannot work and how much you earn as a house hiold and also how disabled you are.

    The other thing i would say is since 2004 no employer can discriminate against a disabled person (which means Hughes is covered under this ) in the UK, they must show all reasonable steps have been taken in my case there was not reasonable alternative.

    If you want more help please email me we all have rights have the problem is we fighting this illness we do not nessaceraly have the time or inclination to fight employers as well.

    hope this helps


  • Hello Lesley

    I had a stoke during a business flight 5 years ago. I was also off work for 11 months (this seems a popular time period to be off with APS!)

    I was driving around 50-.000 miles a year, lots of nights away, flights, travel etc a responsible job and somewhat stressfull job.

    I returned on a phased return building up to a full week at the end of the month.

    I made the decision to leave my employment upon brokering a redundancy "deal" (Nothing fantastic but enough to get me away)

    I have to say my employers were fair to me, I was under written by a sickness health policy but they insurers failed to payout as they did not understand APS or my stroke! (Typical of insurance companies)

    I just knew that with all that driving to see all my customers and flying was going to possibly kill me....

    I had 11 months off sick to think about my future and during the end of this time I hade pretty much made up my mind to start my own business (selling my former employers products in an 1 1/2 hour radius of home)

    I work from home and last year drove 15,000 miles which I coped with, I am always back in my own bed each night and I work the hours I need to not have to!

    Its a giant step to make leaving a regular salary, holiday, pension etc but I looked on it as if I carried on doing my old job I would never cope with the driving, stress and fatigue plus I now hate flying.

    My employers could not really make any reasonable adjustments unless I had a driver! and that meant extra hotel costs, meals etc it would of been out of the question I guess.

    Good luck with what ever you decide to do but dont be forced into anything!



  • I work full time as a stroke thrombolysis nurse, due to heart and aps problems had 4 months off sick, returned as admin for 8 months then back to full duties with limitations in place, access to work followed my while on duty and suggested adaptations to my working life, i even have a segway on order as need to get from one side of hospital to the other which is about half a mile in 5 minutes several times a day. I had to fight for disability and every day remind people i may look ok but am not and need to take breaks frequently, put risk assessment up for all to read, plus tell them how i feel each day, some listen some don't. Good luck with your company, maybe access to work could help you.

  • I am a dialysis nurse and have very busy days with lots of stress. Am finding work increasingly difficult and not sure how much longer I can go on. NHS are not the most understanding of employers.

  • Hi there, my company doctors have just decided to put me for medical retirement as they don't feel that they can support me in work any longer. I have only been off work since October 2011, I have worked for the same company for 25 years so it's not my choice to stop but I accept that I will have a better quality of life not working away from home. Prior to this they were amazingly supportive and my direct manager did everything she could to help me stay in work as long as I could. I hope I will be able to work from home or work back in my little shop again when my condition stabilises but my Civil Servant days are over.

    Keep at it as long as you can and remember you have lots of rights regarding working practices and reasonable adjustments.

    love Sharon x

  • I had to leave my healthcare job as a respiratory therapist after several transverse myelitis attacks which have left me with nerve damage in my legs, feet and both arms. I took a 50% pay cut but am able to work full time in an office/customer service environment. I don't see my customer service position as much different from healthcare tbh. I also think my new employer is much more understanding of medical issues that the hospital I worked for (which was one of the top children's hospitals in the US). I haven't had an attack in over a year, but I feel more secure in my position now if I were to have issues again. And while I do make a lot less, I feel confident in my position now and the security of knowing I can do this job even with movement impairments reduces my stress greatly and gives me the sense of independence I need.

  • I am still waiting for remission after 28 years I would have loved to work I am not allowed to drive can't walk very far due to Arthritis of the spine can't lift my arms can't see very good due to multiple tia's can't hear very well can't remember due to Mild Cognitive Impairment can't keep awake due to Post Viral Syndrome I could always work as a BED TESTER AND SLEEP ALL DAY I will even work nights LOL well done to all of you that can work x

  • Again wow, thank you all for your responses!

    To be honest I really don't know if I will cope going back full time, if I can I will, if not, they won't adapt my role of that I am sure, and yes we are covered under what was the DDA, owever, is our sickness policy it states anyone who becomes sick and is not capable of fulfilling their role may be dismissed from the company - so Watch this space, and I'll see what happens next Thursday when I meet HR and my line manager.

    Again thank you all :)


  • Hi Lesley

    Its not going to be easy to get rid of you as you have rights, Firing people is not easy to do and they will have to follow strict rules even if they can. They have to allow reasonable adjustments for you to do your job or find alternative duties for you. I would join a union quickly and or go to Citizens Advice or the Job Centre are also very good for employment advice and its free!

    Good luck

    Keep your chin up you have done nothing wrong!



  • Thanks Garry

    Your words and everyones else's are appreciated

    I am a great believer in fate - if they do get rid of me, maybe it is supposed to happen that way, and something better for me will come along, anyhow I will let you all know



  • Hi

    I work full time as teacher in the secondary system. I haven't really had alot of time off due to APS (just stroke recovery time), but i have to say the attitude of the employer has alot to do with how you feel and the pathway your work takes. I found it very hard to get my employer to understand that there is a life after a stroke. Having said that I love my job and would do anything to teach.

    Fitting medical appointments in however is nightmare.

  • This is what I am thinking, on the face of it, my employers say "see Lesley we car doing everything we can to help you" but it doesn't "feel" that way, it feels as though they are just waiting for it (my rehab back into the work place) to fail. Having said that, I have had 4 chest infections, in the last 6 weeks, and have a multitude of doctor appointments coming up, with haemotology, chest, cardiac and I now (thanks to this lovely group) intend to ask to see Prof H at St T too.

    I am qualified as a holistic therapist, and part qualified adult trainer/teacher and have found I can do most of the treatments, maybe I should see how work goes and if it does fail for whatever reason, follow my calling with therapies and healing... maybe I have answered my own question :)

    Thank you

  • Hi lesley,

    Yes there is just so much head banging one can do before calling it a day.

    Your holistic Therapy qualifications sound like a wonderful way forward, go for your calling .

    If you are meaning Prof Hughes, he works from the London Bridge hospital these days, he is wonderful, he saved my life, though today I saw a lovely Dr Sanna at St thomas's who prof Hughes referred me to.

    Good luck, kind regards

  • Hi Lesley,

    To see Prf Hughes you have to see him privately as he is no longer on the NHS but at London Bridge, Unless i am mistaken!! Happy to be proven wrong lol But get a referal to St Thomas's the team there are fantastic and key docs thereb know what they are talking about.

    About work do you have a union rep if so speak to them alternativly you may want to speak to a local disablty support org, the only reason if the company boot you you want to ensure its on your terms i.e refernces etc


  • Hi Paddy

    I saw a haemotologist yesterday, who was absolutely fantastic, she knows alot about APS and really explained about the disease, and why and how my lungs have been damaged, we went back 30 years, and it seems APS how like so many on this site has affected my life and health. She talked of lthe possibility of putting me on long term steroids or immuo suppressant drugs same as transplant patients, but thinks my APS may have quietened down at the moment so will see how we go. Anyhow she said she would refer me to Prof Hughes, so I don't know, but be sure I will let you know when I hear back :)

    No union I'm afraid, but met with them yesterday and it appears they don't have the occy health letter, so need to go back to them end of the month then back to work meeting mid Feb. They kept saying can you do this art of your job, how will you be in this situation, and all I could do was be honest, and say I really don't know til I try.

    So watch this space.

    Thanks again

    smiles all around it's Friday

    :) :) :)

  • I had to leave my job due to illness, however I am not sure how helpful it would be to go into details as the situation is completely different.

    if you want to continue then you should be able to. You might have to adapt your role, go part time and cut out some of the more stressful aspects of it. For example fly instead of drive? Site visits could involve you being supported by a personal assistant? If you really want to continue then these are the kind of things you can discuss with the rehabilitation officer.

  • Herb

    If only, they have already said, my hours cannot be reduced long term nor the role adjusted, it is what it is. The business cannot support me having a long term assistant either. I need to be able to fulfill my role in full or not at all it seems. So far the only adjustment tat has been made and this has been pushed purely by me, but supported by occy health, was for me not to have to work in confined spaces due to my lung condition. My employers weren't too happy about this, but I could support it in other ways. You would think being in Health & Safety - the employer would know and understand about the health in the job title - hey ho. All that is happening is all for a reason I guess,

  • I think if they are not working with byou lesley you may want to look at legale action.


  • It sounds like you are keen to continue work and that you are highly experienced. Paddy is right, the law is on your side, in particular the disability discrimination act.

    Your employer may need to get forced into helping you a bit more once they realise they could lose such a highly experienced worker, and it is always better to keep someone on who knows the job and the company that having to "train up" someone new.

  • The problem is - in our sickness policy, it states if an emplyee becomes too sick to do their job the company is within their rights to cease their employment, and unfortunately, for my job I do need to go on construction sites, and this cannot be done for me - so watch this space :)

  • Yeah but i would dipute this Lesley as that is dicriminatory in itself there are some disbility rights group you can get free advice if you want i can send them to you. just to ask the professionals because they need to make adjustments.


  • Thanks Paddy, if you wouldn't mind send me over the info my email?



  • Lesley

    Hi - I am a project manager in construction!! I am 31 and have been working for 8 years now following a renal transplant 8 1/2 years ago due to APS and Lupus. I have had to take toime off for some serious complications (including internal bleeds and viral meningitis and german measles at the same time!!) but I have always returned to work as soon as possible - mostly because I can't survive without the money!!!

    I also communte it's over 1hr30mins door-to-door so three hours of travelling a day so on some days work is a complete killer but i still get up and do it all again! Some times (like now-ish, I am not in a brilliant place at the moment) I wonder how/why i do it and fall asleep on the train and feel like I am doing a bad job but other times the acheivements spur me on to do better. I am just very very stubborn and will not let APs or Lupus or anyother illness stop me from keeping horses (which is essentially where the money goes!!)

    My company knew what they were getting when they took me on but they are supportive and i work with a good deal of flexibility and in return i work hard for them - it works pretty well most of the time.

    Hope that's semi-helpful maybe???

    Take care


  • Hi Tasch

    It sure is helpful. I met with my company last week, and the main thing they kept saying, is well how are you going to feel on a given day if your breathless, how are you going to cope with x if your breathless, what are you going to do with y when your breathless!! and so it went on. In truth my answer was, I don't know until I try!!! My commute like yours is 3 hours, but 3 hours driving, so I can't let the fatigue win and nap. I also am very stubborn, and won't let this deter me from living, when I was in the wheelchair and every doctor said you will never walk again, I just said "watch me" It has been my firm mainly that has kept me from working as they have not been able to or want to accomaodate my rehab phased return to work, saying that, I am at Occy health tomorrow, I am being very positive in my thoughts that he will say, yes back to work in role, on a phased return and suck it and see.

    So thank you for you insightful response :)

    Hope you get to a better place real soon

    smiles lesley

  • Well peoples, the update on my work - I have been back 3 weeks as part of a 6 week phased return, and to be told that my position is being made redundant, ...... Why doesn't that surprise me. I am taking advice though!!!!

    Just thought you would like to know the outcome


  • Hi

    I just though I would let you know the outcome everyone. I was officially made redundant last week, coincidence? I think so, I am going to see this as a positive though and use my time to begin doing my therapies and massages



  • Hi lesley,

    I am sorry to here that but i am glad to see you looking at the posatives as one door closes a window opens you know we here for you if you want any help


  • Thanks Paddy


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