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People with chronic illness who manage to work, what do you do and how do you manage?

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pippy33
pippy33 Community member Posts: 4 Listener
edited May 2023 in Work and employment
I'm asking as someone with POTS who hopes to be able to work in the not too distant future. 

Also If you were out of work for a significant period of time , please feel free to share your experience of getting back to work after your break

I'd love to hear some encouraging experiences :) 


Comments

  • MW123
    MW123 Scope Member Posts: 560 Pioneering
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    Hi Pippy

    I am in full time work (not starting back) but I hope telling you how I cope with working with chronic illness might be of help to you. 

    Despite not having POTS, I am dealing with heart failure (with my heart pumping at 25%), chronic blood cancer, and spinal stenosis.  However, I find work to be a source of positivity and a way for me to cope with and accept my conditions.  Engaging in my job brings me a sense of fulfilment and contentment, making my life more meaningful despite the challenges I face. 

    Due to my cancer, my oxygen levels are often low, and sleep helps recharge my batteries. I experience significant fatigue and exhaustion, so I usually take a few hours of rest when I come home from work. Once I wake up, I take my time doing light activities.  As I can no longer perform the tasks I used to do around the house, I've learned to let go of being house- proud. Pacing myself and accepting my limitations have become crucial rules to follow. 

    On top of managing my health conditions, I also experienced the sudden loss of my spouse a few years ago.  Consequently, work provides me with an opportunity to interact with other people since I don’t have much of a social life as a result of living on my own.

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Hey @pippy33. Welcome to Scope’s forum. I have several chronic illnesses so I thought I would respond – namely, vestibular migraine, visual stress, IBS/functional GI disorder, fibromyalgia, anaemia and hypothyroidism.

    I currently work, hybrid, for a university’s finance services for students, administrating the hardship fund in particular. I manage through planning self-care each evening and weekend – what that looks like changes daily and weekly. It might be a longer sleep, a short walk in the sunshine, a TV programme or time with family, for example.

    I also do things to fuel me throughout the day – usually this is in the form of listening to some favourite music while I work. I also have reasonable adjustments at work (e.g., flexi hours). This is particularly useful for the days I work in the office where I finish earlier to help manage the fatigue.

    I also sometimes get taxis to and from work as it cuts out a lot of travel time, compared to the bus, which also helps to manage the fatigue. How long is a significant period of time out of work? I was out of work for about 5 months if that counts (it certainly felt like a significant period of time but I recognise some have even longer periods of time!).

    How are you feeling about the idea of starting work? Here for you if you would like to talk to us more about where you are at with things at the moment or if there is anything else we can do to support you with this  :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Thank you for sharing your experiences with us @MW123. You certainly deserve to feel proud! You have mentioned things which support you after work. I am just wondering, do you find anything useful within work or before work?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • pippy33
    pippy33 Community member Posts: 4 Listener
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    @L_Volunteer Hi. Thanks for your detailed response :) those sound like good ajustments and ways of managing fatigue. Do you mind me asking how you came across that job? 
    Unfortunutly I've been out of work for a few years. I'm feeling a mix of feelings at the idea of starting work,  excited but also nervous. I will be having a work capability assessment soon and I'm wondering how I put across how I struggle but also have it recognized I may be able to do a little of something. I know I couldn't manange working without support so I'm quite nervous about that. 
  • pippy33
    pippy33 Community member Posts: 4 Listener
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    @MW123 Hi MW123
    You're dealing with a lot , I'm very sorry to hear about your spouse. 
    Although we don't have the same conditions, sounds like we have some similar symptoms like the fatigue so the fact you manage to work gives me hope. Do you mind me asking what job you do? just to get an idea of the type of job that can possibly be managed with these symptoms. Thanks,
     Pippy 

  • MW123
    MW123 Scope Member Posts: 560 Pioneering
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    Hello Pippy,

    In your previous message, you mentioned that  you were going to have a work capability assessment,  I’m not entirely familiar with this process, so could you please clarify if it involves evaluating your medical condition and providing guidance to help you find suitable employment?  It’s completely understandable to feel excited and nervous about returning to work after being out of the workforce for a few years.  When exploring your options, its important to be realistic and consider something that you genuinely enjoy and can manage within the limitations of your health condition. 

    As for myself, I’ve been with my company for many years, specialising  in lease law and boundary disputes.  My work primarily involves office based tasks that require extensive reading, which doesn’t involve much physical activity.  However, I still experience significant fatigue and tiredness.  Nevertheless, work helps me stay focused and gives me a sense of purpose. 

    I believe there is a perfect and fulfilling job waiting for you.  Its simply a matter of connecting with the right individuals who will offer you guidance and support.

     

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Sure @pippy33. I recently graduated from a university. The university was recruiting for a graduate (from any university) for a post and I applied for it and was fortunate enough to be offered the job. I found out about the graduate scheme by talking to the university’s careers team. Very lucky to be in the position I am currently in – my last job with a different employer was not like this at all.

    It might be worth leaving this for occupational health once you receive a job. I know occupational health, with me, put the capability to work but with reasonable adjustments (rather than capability to work without reasonable adjustments or no capability to work). For that reason, the reasonable adjustments are legally binding (under the Equality Act 2010 but I am not seen as unfit to work).

    Happy to talk you through it if you have any further questions or anything else we can do to support you. I think it is largely through highlighting what you find difficult and the impact it has on you but the reasonable adjustments you know to make that impact more manageable for you  :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Kalps
    Kalps Community member Posts: 75 Pioneering
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    Hi, @L-Volunteer,
    I've just read about the various conditions you have and have to navigate life around these. I can certainly relate to the hypothyroidism. You maybe aware i have spinal injuries and for a long period of time ive developed a 'poor me/victim' mindset along with depression. can you give me some tips on how to stay positive as your drive & admiration is something i desire. Thanks, Kal


    Kind Regards,

    Kal
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Hey @Kalps. Thank you for your response. In all honesty, I think we all have times when we have a 'poor me/victim' mindset - especially when you also struggle with depression.

    There are days when I also have a 'poor me/victim' mindset - especially when bedbound from fatigue/pain. I just would not necessarily share that in all spaces or with all people.

    However, for me, I allow myself to feel those emotions but focus on what I can do to help others. I guess part of that is asking what is it teaching me to allow me to support others.

    I also focus on the things that mean the most to me - these things allow me to take care of myself and keep looking forwards, rather than focusing on the struggles.

    Sometimes, in order to stay positive, it is having the double 'poor me/victim' mindset(!) and asking myself what is this taking away from me and how can I get where I want to be.

    Please don't hesitate to ask any further questions or let us know if there is anything else we can do to support you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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