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Very recently diagnosed and struggling to cope at work- any advice ?!

Posted , 9 users are following.

sarah-lou069xo
sarah-lou069xo

Hi all. I'm just coming up 25years old, work full time (40 plus hours a week) in an office as a receptionist and PA. I have just been diagnosed with CFS after about 6years of battling with different Dr's etc. I had thought i would be okay when i took this job as its in an office so in my mind i would have been sat down most of the time meaning i wouldnt be over doing it. However, the job role itself is very demanding. I work for a retail comapny that is rapidly expanding and gradually i am having to take on more and more responsibility. Now dont get me wrong- I love my job and they have been relatively understanding with regards to my health issues. The problem is i just cannot fight my fatigue at work anymore. I'm in pain everyday also, but i can struggle through a full working day using hot water bottles and pain killers. But the fatigue is killing me. As i type this i am currently sat at my desk desperately trying anything to keep my eyes from slamming shut. My head is heavy, my body feels lifeless and run down. And this is what it is like almost daily at the moment. Caffeine doesn't help. It makes no ounce of difference if i actually manage a decent, full nights sleep or if i have broken and bad sleep- I will be just as tired the next day. Has anyone struggled with this in the work place and still managed to keep hold of their job? I dont want to give up my position, i worked hard to get here. But i'm afraid as time goes on either my body will give up, or my employers will give up on me. Any advice would be amazing!!

0 likes, 9 replies

9 Replies

  • bchu85
    bchu85 sarah-lou069xo

    Posted

    Hi, Sarah. I dont have CFS, but I have general anxiety disorder, mild depression and autonomic instability/dysfunction. All these things include excessive fatigue which makes me FEEL like i have CFS, but maybe its all in my head. I'm going to be honest with you, find someone you can talk to, not a therapist, but someone who you trust and can talk to. I prefer talking to my family. Honestly, if work is hard for you, stop it, because pushing will most likely make it worse. Take time off, do not think about work at all. Also, remove any negative thoughts. This is a little bit cliche and common but, I know how hard it is for you to let go because it is... who would want to leave a job behind because of something called CFS that has no physical diagnosis present? Dont blame yourself, dont blame anyone for this so PLEASW TRY and remove ALL negative thoughts. After you've decided to take time off, exercise, take vitamines and SLEEP when you feel tired! Most likely you will have to learn to deal with this for years, and only with positive thoughts can you do that.
  • bchu85
    bchu85 sarah-lou069xo

    Posted

    Also, find therapy related to CFS around your area. I know most doctors simply do not beliee in CFS and generally connect to depression. Find someone who truly believes in CFS!
    • sarah-lou069xo
      sarah-lou069xo bchu85

      Posted

      Thank you! I have just started doing Cognitive Behavioural Therapy as advised by my GP. Very early stages but i have heard that it can be very useful so i will see how that goes. My worry is that although my employers are understanding of my condition, they don't particularly show support if and when i need to take days off here and there. I feel like i am unreliable for them and a bit of a let down. It also causes me huge financial problems as i don't get paid for days off i have. I often lose up to £200 a month in wages if my pains and fatigue are bad. It's much harder than i expected it to be trying to juggle everything and keep myself fit enough to face everyday.
    • lynne69494
      lynne69494 sarah-lou069xo

      Posted

      lve not been diagnosed with cfs but have had increasing tiredness fatigue, general aches and pains from waking till bedtime, but dont sleep well either, sore eyes, nails,  tinnitus, thirst, poor concentration and memory. l do have intersticial cystitus and that took many years to be diagnosed with, also prone to allergies, l know much is immune related, also wonder about myalgia sjorgens, but find the gp is hopeless, they really dont want to go to any  trouble to find diagnoses, l mentioned cfs and the response was `oh you cant get out of bed with that`, l know for some they have times they are in bed for days, but others can get up and function, with will power and difficulty, l struggle to get out of bed somedays, then its a battle to do any jobs, even more if going out to do anything, with any exertions making it worse the next day. l,m sure those with cfs me will come and advice you further, repeating much of what bc says about not pushing yourself too much or risk making it worse, along with advice on diet supplaments, therapy. l can relate to the unreliable thoughts you have about yourself, although l dont work, its the same with social events, friendships, with best of will its near impossible to be reliable and makes you feel bed letting people down, and not all uderstand even if told the problems, Could you talk to your boss and explain, take some holiday leave till youve a plan on what to do, or would part time be poss for your job. Ditto sat at keyboard with heavy eyes, and wanting to sleep.  l hope you find a solution to your job problem and cfs, some do, some dont, l guess theyll advice you in posts soon.  Take care
  • Sellins
    Sellins sarah-lou069xo

    Posted

    Hi Sarah,

    I have CFS and I always feel very frustrated when I hear about people struggling at work. I struggled at work, initially with Rheumatoid arthritis from the age of 24 until I went off sick a year ago with CFS. I work for a large employer and In many ways was treated quite well, but there is a tendancy for the things that they do to help you being seen as "perks" by other employees.

    I do have some advice for you, mainly learned through my own mistakes!

    The positivity you portray in your post is the most important thing to get across to your employer. How many "well" people do they employ who don't want to be there? You do, and that is very valuable to an expanding company.

    You are taking on more responsibility (so they trust you) can you work with them to allow you to create a role which will suit your needs as the company grows.

    If you are losing money through lost sick days, could you just go on reduced hours for a few months to allow yourself to recover. You should then increase your hours gradually. Your doctor can sign you onto reduced hours via a sick note.

    CFS is a disability so your employer has to consider reasonable adjustments for you and whilst they can refuse, they should have a good reason. There are people in you local employment service who can help you with approaching your employer about these adjustment.

    Reasonable adj to consider:

    -A parking space dedicated to you and near the entrance.

    -Working from home a couple of days a week or just for the first hour answering emails etc and then go in. I find that the fatigue is worse if I push myself before I am ready in the morning.

    - a quiet working environment

    -a proper ergonomic chair.

    -Regular changes in activity

    - Flexible hours, avoiding rush hours

    - Voice recognition software

    I would like to advise you to be formal & proffesional in your approach to your boss / employer. You are not a nuisance, you have a disability. You have a desire to better yourself and you can only really do that with their help (flatter them if you have to!). You have rights but employers have a way of overiding them. I recorded all of my later meetings with my manager, but it is the earlier conversations I wish I hade recorded! No need to tell them you are doing it, it will mean that you keep an exact record of what is said and agreed and you should write up a summary and email it to the relevant people.

    Go online and print off  advice to employers about understanding CFS and give them a copy. It's up to them to be proffessional enough to read it!

    I'm going on a bit, but I am passionate about people getting the chance to work if they want to instead of becoming an "malingerer" because employers would not help you.

    One final thing. There is almost certainly a CFS advice/support group in your area (check your local NHS website) You will get alot out of attending these groups.

    Well thats something for you to think about anyway. Good luck

  • wknight
    wknight sarah-lou069xo

    Posted

    I was diagnosed with CFS and held an extremly well paid job, but working in the private sector, I knew that if I didn't perform I would be out the door in the 6 monthly  staff cull. Oh yes I know we have wonderful laws to protect the employee but the harsh reality is that they make an excuse, give you some cash to buy you off and you are out the door. They also have very,very good lawyers.

    What I did was to get enough energy together to just work. Weekends were usually spent in bed and I learnt to come home and lay on the floor on my yoga mat and do NOTHING for 30 mins. Then do very little in the evening so I had energy to work the next day. I actually found that mental work far more draining than physical exercise.

    I am lucky that I have a very supportive GP and I tried some private CFS services but to be honest, none were telling me something that I didn't already know.

    I held down a job for many years, sitting on a knife edge of frequently busting because I did too much. Its hard for me as I live in my own so I have no one to help me.

    After many years I decided that this had to stop. Fortunately I had saved enough money to give up work. I then took control of my life and implemented serious pacing. It took about 18 months but I am begining to start to feel a bit like my old self. I don't think I would ever have been successful if I had remained in work.

    Wish you all the best.

  • jackie00198
    jackie00198 sarah-lou069xo

    Posted

    Sarah-Lou--I want to be honest with you. I struggled with fatigue at work before I was diagnosed. Then one day I became so ill that my supervisor sent me home and told me not to return until I was better. That was 15 years ago, and I was never able to return. So that's a cautionary tale. You are risking your long-term health if you are trying to push through your fatigue and pain. This can result in worsening symptoms and can take away any choice you may now have on whether or not to work. In other words, your body may end up making the choice for you. So my advice to you is to give your body a chance to heal. Cut back on your work and get the rest you need. Read your own post: "the fatigue is killing me." "My body feels lifeless and run down." These are the words of someone who is ill and needs to take care of herself. Get plenty of rest and pace yourself. That's the key to eventual recovery, which is possible.
  • Beverley_01
    Beverley_01 sarah-lou069xo

    Posted

    Hi Sarah-lou,

    I know its hard to feel unable to take proper sick leave but, this is something I think you need to seriously consider. Explain your exhaustion to your gp and ask for a week/2 weeks sick note. If you need more, ask for more. They cannot not pay you for being ill. Statutory sick pay. Then as sellins says, ask for reasonable adjustments to be made when you do return. It is a disability.

    Also, like Jackie says here- listen to yourself, your'e exhausted and need to rest. Believe me I loved my job. I also truly believed I'd return and still hope to one day. But, my health more important and yours Is too. Be kind to yourself and get some time to heal. Btw, if you have worked there under or over 2 yrs-its a factor in employment law. Contact local CAB to discuss with them about any financial help you may be entitled to whilst off work. Don't drive yourself into the ground-listen to your body.

    Hope this helps

    B

  • andrew_08416
    andrew_08416 sarah-lou069xo

    Posted

    Dear Sarah 

    I too work in an office all day, infact I've been doing so long before the issues started.  for me its slightly easier not having to worry about a boss as I run my own company but being the only employee I have to work or I dont get paid. 

    All I can manage is part time hours. but dont get me wrong before the recent flar up I was able to coupe with 37-40 hour weeks.  My issue started in May 2014 with CRF following treatment I was left with fatigue and brain fog which I was hoping would clear up in time.  I had taken things easy on the body and work load applying the reduced pass method.  so I was totally surprised when out of the blue the issues got worst.  Now I cannot work more then a few hours at my desk.

    I think anyone with a CFS condition or one similar will instantly agree with you that even sitting at a desk doing light work will be an extreme challange.  Often you feel both mentally tiered as well as physical just by the motion of sitting alone. 

    I discovered it has something to do with gravity and being in an up right position. It takes hours for my muscles to settle after sitting at the desk.

    On a slightly different flavour.  I am a cancer survivor, which is protected from The Equality Act and Disability Discrimination Act.  An employer cannot discriminate against me. However I dont have an employer :-( 

    I believe that CFS/ME is also covered under the same act. 

    You've given an indication that you were upfront and honest with your employer with regards to your condition. be it diagnosed or undiagnosed at the time, if so that would be documented.  if I am correct that CFS/ME is under the same legal act you should be fine. 

    hope things get better for you

    Andy

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