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Working with invisible/less severe disabilities - advice?

ResilientNeighbour7
ResilientNeighbour7 Member Posts: 10 Listener
Hello Scope community,
This is my second discussion thread on this empowering platform.
My brief question is that how do those of you with chronic skin and pain conditions manage in daily life and working life and do you get any support?
I am particularly interested to hear from those who live alone as I do because the dynamics are always different then.
I have many further questions but just thought I would keep it brief.
Thank you
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Comments

  • Alex_Scope
    Alex_Scope Posts: 796

    Scope community team

    Hi @ResilientNeighbour7 thanks for starting this thread, to help our members find it I'll mark it as unanswered.

    Hopefully someone with similar experiences to yourself will be able to join in the discussion :)
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  • Mrssherbott
    Mrssherbott Member Posts: 8 Listener
    ResilientNeighbour7

    I struggled for years with diarrhoea anemia and pain. I worked in the NHS. Despite working on the wards it was difficult- getting to work and needing to be near a toilet. Occupational health did what they could but it was impractical at best of times, due to the nature of my health. I changed my shifts to starting later but it just made me more tired.
    I worked block days, every other day, I did all sorts and my occupational health was helpful.

    I then thought community nursing would give me the flexibility of working from home and managing time better. This did work for a bit but my health needs became more chronic. I was unable to meet the service need.

    Before I gave up my nursing I tried to see whether and employer would allow me to work around my illness, so when I can’t sleep at 3 am or when I’ve no control over napping at 10am. 
    I also switch off or be safe in my understanding and decision making. I was also sick more times in the day than well. For me the desire to work was outweighed by my body’s fitness. I had to heed to the latter. 

    I’ve learnt that a work
    life balance is just that. If you can’t have a life when you work or work with no life then you are unbalanced and the affect can be lasting. For me it was burn out. I ignored my body’s warning signs for a long time. To use a car analogy, Its like driving when there were other issues going on and instead of addressing them I ran on “warning lights until I broke down” and some times the mechanic, can’t repair, replace or even diagnose all the damage. Sometimes, as soon as you left the mechanic the same or other lights come on. 

    It’s very much an individual situation that takes into consideration lots of factors. Are you fit, are you able to do what’s asked, will you meet the needs of the service with your condition and will you be able to look after yourself and have a life with the challenges you have. 
    I hope my experience helps. 

  • shell0208
    shell0208 Member Posts: 4 Listener
    Hi everyone, I’m new to this. I have had chronic back pain for the last 19 years, worked full time for 16 of those. I’m 33. I really struggle with full time and have recently reduced to 30 hours a week. If anyone has any help how I can get through the day, after 19 years I should be a pro but the pain is just getting worse and to the point where I don’t want to move because it hurts, I have been off work since august and start my new job in mid February and am terrified about being on my feet for so long. 😢
  • Mrssherbott
    Mrssherbott Member Posts: 8 Listener
    @shell0208 I know what it’s like in back pain for so long. For me it’s affected me so bad that I cannot work. 
    It helps to let your employer know what you can and can’t do. Make sure it’s right for you by getting an occupation health assessment. 
    The advantages to this is they may adapt the role to suit you depending on service needs. I’m not legally trained so I can’t tell you what would happen when you do. However, work places are duty bound to make reasonable adjustments for those living with a physical challenges that may affect them
    in work. 
    Always declare this on any application they’ll have occupational health contact you straight away if successful. I don’t know what happens if you are in the post. I’d assume you just ask for a OH assessment just the same. 

    If you can take regular breaks and sit down when you can. 
    My back is much worse if I try to push through the pain but staying in one position and the wrong position too long is also a contributing factor. So sitting standing  or lying in any kind of lengthy duration makes me hurt much more. I find a heat pad can help keep you a little looser. 
    Hope

  • shell0208
    shell0208 Member Posts: 4 Listener
    @Mrssherbott thank you for your reply, I think I am worried as I was employed by my last employer for over 10 years and they refused to have an OH come in for assessment. The new job does know that I have chronic pain and have been kind enough to reduce my hours, I’m just so scared that I still won’t be able to do it. I’m sorry I’m writing all doom and gloom I just have so much going through my head and I don’t want to worry my dad, I still live at home with him and he has just retired so money is a lot tighter than before. Yes I know what you mean by pushing through the pain and heat pads are like an extension of my body these days hehe. Thank you so much for your response 
  • Tori_Scope
    Tori_Scope Posts: 7,049

    Scope community team

    I hope that the above comments have made you feel a little less alone @ResilientNeighbour7? :) 

    Fingers crossed that working reduced hours will be more manageable for you @shell0208. Do you think you could benefit from any other reasonable adjustments (Scope) at work? I'm sorry that your previous employer wasn't supportive, but it sounds as though your current employer is a little more understanding. 

    I know it isn't easy to share your worries, and you don't want to be a burden to other people, but I'd encourage you to speak to your dad about your concerns if you feel able to. It's good to get things off of your chest, and it could help you to work the finances out together.
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  • shell0208
    shell0208 Member Posts: 4 Listener
    My job is tricky to make any more adjustments, my previous job was the same position but I was office based the majority of the time but with this job I will be within the main nursery setting so aside from me being able to sit down as needed, I’m not sure what else they can do. Yes thank you for your advice I will talk to my dad, he is very supportive I just feel like a let down as I’m still young and I have gone from doing all overtime possible to a huge pay cut because I just can’t do it. But I will talk to him. I have only met the new employer twice and I’m hoping on induction I will be able to go into a bit more detail.
  • Tori_Scope
    Tori_Scope Posts: 7,049

    Scope community team

    That's understandable @shell0208. Have you had an assessment from OH in your current role? Hopefully you'll be able to chat to your employer more during the induction as you say, and find a way to make it work for you.

    You're definitely not a let down :) Life happens and circumstances change. You can only do what you can do! Although it can be therapeutic to speak to family and friends about how you're feeling, some people also find it easier to speak to people they don't know about the challenges they're facing. I'd recommend you book an appointment with your GP if you'd like advice on dealing with difficult or racing thoughts.
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  • shell0208
    shell0208 Member Posts: 4 Listener
    Thank you @Tori_Scope. I will talk to them when I go in and try to explain without putting them off. 
    Your right circumstances do change and I have always done more than I should have with my pain but just always pushed myself, but I feel like now is the time I need to do what I can handle and hopefully it will ease in time so
    i can work back up hours. I will give the doctor a call!! Thank you so much. Hope your keeping well

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