How do other APS sufferers hold down a job?

How do other APS sufferers hold down their job? I have recently changed my job which is now a lot more office based and involves a lot of decision making. Unfortunately it is highlighting the problems I have been hiding for years. The foggy head has been a big problem, saying the wrong words, inability to concentrate on a conversations, organisation, forgetting things(big time.) Somehow I am just about managing to hold the job down. But I am getting so depressed, I know I am getting worse and cannot seem to do anything about it. I used to be so confident, but over the years that has gone. All this coupled with joint pains and AF heart problems is really doing my head in the only saving grace is this forum.

20 Replies

  • I still work but with reduced hours. I work 4 days a week with wednesday's off.

  • I work from home. I could'nt hold down a job outside. I take ages just to get going in the morning and need to stop often. I am self employed and the brain fog days have me struggling even as my own boss.

    My son has APS too and he contrantly struggles with full time work and frequent migraines. He too plans to go self employed to enable him to rest more and pace himself.

  • My wife who has C.APS - for the last 3 years has not worked - is a grad of a B.SN (Bat. Science of Nursing). Has only worked one shift, other than the odd time she has taken care of friends and family's children... its been hard - I am sure rather be the Nurse than the Patient... the last two years she has been the patient, and not the Nurse.

  • You dont say if you are taking warfarin but from your profile I would assume that you are. What is your target INR and could this be raised slightly do you think? Are you on Plaquenil? This may also help with some of your symptoms. Not everyone wants to inject everyday but I found an immediate improvement in cognitive, memory and word finding abilities when switching from warfarin to Fragmin. Warfarin was not suiting me anyway but I had not bargained for those improvements which were very welcome.

    I dont know if you are happy with your APS specialist and if you could discuss some of these issues with them, if not have you thought about going to London Bridge for a private appointment to see what they say about these problems. As I see it you either have to find something to help you or you may have to consider asking for reasonable adjustments to manage your job. Worrying about it is only going to cause you stress which in turn will just make the symptoms worse. While you decide try and take each day as it comes and give yourself permission to just accept what the day brings rather than worrying about it.

    Please let us know how you are doing. x

  • Hi, thanks very much for your advice. Plaquenil sounds interesting, the idea of Fragmin could work. I am on warfarin 9mg and my INR is stable. I will talk to my consultant and keep you posted. Thanks once again.

  • I work 18 hours a week and have had to go sick this week and am probably going to get sacked because of it. I was taken into hospital on Sunday and spent 7 hours in there because the couldn't get blood they had to take it out my wrists eventually had to take day off work as am bruised and had about 2 hours sleep x

  • Your work cannot expect you to go in after 2 hours sleep and after being in Hospital all day. Perhaps the time has come to tell your company of your illness as it seems to me at this point you have nothing to lose. If they then sack you you could have a case against them.

    Tell them you have a chronic long term condition which should be managed under the Equality Act. Ask for reasonable adjustments - working from home, later starts earlier finish's, reduced hours on a permanent basis - whatever may suit. I suggest you get in first before they do as they have a duty of care once you tell them. You may be surprised with their reaction.

    Please let us know how things go.

  • Hi there, luckily if there were a silver lining, due to my five autoimmune conditions, this means I am on hand to be in the house, answer the phone and do research with regard to my partner's business, and both my children are very poorly, one has Systemic Lupus and suspected Hughes Syndrome and is often sent home from school due to her seizures and general unwell demeano, she is 15. My youngest son who is 14, hardly goes to school currently, he has suspected Hughes Syndrome and has a permanent migraine and dizziness, so I have to teach him full time, in conjunction with the help from the High School where he would rather be. So... there is no way with my chronic health or that of my family that I could leave the house currently. I dread to think how it would pan out if I was trying to actually go anywhere, we certainly could not afford any paid help. Mary F x

  • I worked 20 hours a week and like you started making big mistakes, If I had reduced my hours it may have helped but I tried to carry on and eventually lost my job. I didn't fight them because by that time I was too tired and confused to to do anything about it. Now I really wish I had as I have been out of work for four years with little prospect of finding work. Perhaps try to talk to your boss and come to some sort of arrangement where you can maybe work flexi time when you are feeling OK.

  • Hi, thanks for your advice. I will try and talk to my boss. Sorry to hear about your situation, hope things turn out well in the end.

  • I have told my work about my condition all they think about is money and I don't even get sick pay anymore so will be short of money wen I get paid and probably won't have a job in a week

  • I had to leave my job and take early retirement, because I just couldn't do it, some said it was stress, menopause, getting older (53) I have taken ill health retirement, just couldn't carry on.

    I never thought about it but when we took out insurance we could have paid a bit extra for long term health problems ( wish we did)

    I have found that I seem a bit better now I don't have so much stress.

    Thank goodness I have an lovely husband, hate to think how it would be without him

  • For those who may have employers and work colleagues who don't understand Hughes, may I suggest you look at 'Spoon Theory' as a way of explaining how you feel, if it might be appropriate to do so . I think less sympathetic employers may now be more accountable, in the UK, because of the Equality Act because there is no doubt in my mind that many of us are disabled under the Act. See

    Personally I coped when much younger, primarily because of superb support from my then medics who could force my employer to provide some leeway for a while. I confess that I haven't been employable for decades though, certainly not for any job that involves anything but simpler decisions and needs my presence on a regular basis.

    I feel pretty desperate at times but then count myself very fortunate, to still be around, to have such fantastic granddaughters and other family, and to have a few interests that keep me busy at a rate which exceeds my spoons allowance.

  • Interesting, I have found a definite decline in my mental capabilities over the last ten years. You have obviously found the same thing. APS is a disability and should be recognised accordingly. Thanks for your response to my question, I have found it very useful.

  • Just read "the spoon theory" it says it all, brilliant.

  • Hi

    I am very happy that you have found it helpful, when your brain isn't working too well it helps get the point across to those who need to know.

    One thing I didn't mention about declining cognitive abilities was that you will often get told, well its down to you getting older, it happens to us all. Cop out!. Some of it maybe but ageing does not account for all of it. One thing I do know from my psychology degree is that I could never obtain it now, I just can't reason at the required level anymore.

  • Never mentioned my illness to boss..I.came to work(office job no customers-no rush) a little later in a.m. (about 1 hour) and stayed longer in evening.This occured before my APS was diagnosed..Finally when it was diagnosed, I tried to avoid thinking of it. This was before the multisystem aspects of the condition were known.. In the meantime a young lady with ?Fibromyalgia was not so reticent..she lobbied for flexible hours and got them..I did my work to high standards despite the fatigue and problems with concentration.Yet got canned just for being unable to work the specified time interval.

  • I'd worked very hard to stay in full-time work despite my debilitating APS with SLE like symptoms. An occupational health order ensured that I could start early at 7.30am in the morning and leave by 15.45pm everyday, Monday to Friday. Sadly, the recession finally bit, and I got laid off last week after almost 12 years of working in IT Support in Education. Getting another job at 52 years old and with my chronic health record will be all but impossible, methinks. My previous employers were thankfully tolerant of my numerous hospital appointments and occasional APS flares, for which I was grateful. I need to ponder seriously what I will be doing next. IT Support from home seems a good option. Perhaps my sci-fi novel might create a new career if it becomes a success after I publish it.

  • I'm so sorry to hear you have been laid off. Becoming self employed could be a good option for you and it gives you control over your life without the added stress of worrying about pleasing someone else.

    My advice would be to look up things like government run schemes for people starting their own business as you may be entitled to help and also when you are ready join a local breakfast club and mentoring scheme. They help to promote each others business's and give lots of moral support too.

    Good luck and remember that when one door closes another one opens. Let us know how things are going. X

  • I never really notice these issues until I started doing some data entry/admin work for my brother. After an hour, I would have to go have a sleep... can't think straight, forget things. Makes me wonder how I will go back to work too. At the moment I am a stay at home Mum of 2 toddlers. But one day, i will have to go back

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