Stuck with life (chronic fatigue, depression, poss IBD etc) — Scope | Disability forum
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Stuck with life (chronic fatigue, depression, poss IBD etc)

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aim_rp
aim_rp Community member Posts: 7 Connected
edited February 2020 in Disability rights and campaigning

Hi everyone, I don’t really know what I’m looking for but I feel really stuck with everything at the moment and I just don’t know where I’m going.

As mentioned in my intro post I have type 1 diabetes, chronic pain and fatigue, depression, anxiety disorder and hypertension. However two things have changed. In my intro post I mentioned that I had IBS. It turns out that this isn’t the case and after some recent flare-ups (and a calprotectin test at the doctor’s) it looks more like it is something like Crohn’s, which could explain the fibromyalgia symptoms (which is what my GP previously thought I had). I’m getting a colonoscopy in under a fortnight for this. Also, my psychiatrist thinks I am on the autistic spectrum, which would explain a lot of my “quirks” and social issues, but I’m awaiting a formal test.

The thing is, I keep really struggling with work. As you can imagine with my various conditions, I’m often off ill, and workplaces don’t like this. My chronic fatigue issues make it difficult to do more than 20 hours a week, and I find busy workplaces really stressful because of all the noise, happenings and social interactions. I’ve honestly kept trying my best over the past decade, and I’ve been in some sort of employment most of that time, although I’ve honestly just felt like I’m constantly on the edge of failing. I’m no longer in employment as of this month as I was struggling too much with the shifts and my health has been rubbish (gastrointestinal stuff has been really flaring up and making me sick and even more sore than usual). It sounds like whinging but I just feel like a big failure. I don’t want to just give up on everything, but I feel like I just keep screwing up. I don’t know what on earth I’m going to do about living expenses once my savings run out in a couple of months. I live with my ex-partner and we’re both named on the mortgage, so it’s not really rent I’m paying. (I had thought of having my name taken off it but don’t know how much hassle that would be). I feel like I should be looking for a job but I just feel like **** and I don’t think I can manage. I’m so sick of everything.

I’m on the list to see some advisors at a local charity about all the stuff that’s going on, but I don’t even know what I should be asking for or what I should be doing. Thanks for reading.


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  • Ails
    Ails Community member Posts: 2,256 Disability Gamechanger
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    Hi @aim_rp and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm really sorry to hear about everything you are going through at the moment and can appreciate how difficult and worrying things must be for you at the moment.  I hope you don't mind, but I have looked up the M.E. Association website which may be able to offer you some support and information https://www.meassociation.org.uk/me-association/ if you want to take a look.

    Anybody who has health problems such as yourself will not feel like applying for jobs at the moment so I can understand you feeling this way, but being worried about things too.  You should take your time with things as your health comes first.  With regards to your depression, I am going to tag in one of our Community Champions, @thespiceman, who is very experienced when it comes to mental health, and he should be able to advise you on this.  

    Please chat to us anytime on the Community as we are here to support you and there will always be someone on here to listen.  Please keep in touch and let us know how you are getting on and I hope things improve for you soon.  If there is anything at all we can help/support you with then please just ask.  All the best.  :smile:

    Hi @thespiceman, could you please offer some advice/info to @aim_rp?  Many thanks, @Ails.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi again @aim_rp - I'm sorry you've had to give up work due to your multiple health issues. I wonder if some of the information here on Scope about benefits you may be entitled too may be helpful. See: https://www.scope.org.uk/advice-and-support/benefits/types-of-benefit/   I thought these might be worth reading before you get to see your local advisors. If you have any questions about this, please say are there are people here, well one in particular, who may be able to help you further.

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  • Bettahm
    Bettahm Community member Posts: 1,439 Disability Gamechanger
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    @aim_rp
    Dont know whether this helps, or you may already know this but there is a link between autism and bowel disorders, also some of your other conditions - depression, anxiety, fatigue. 
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  • Bettahm
    Bettahm Community member Posts: 1,439 Disability Gamechanger
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    @aim_rp
    Btw I'm autistic and I can only work alone, lifelong struggle trying to hold down a regular job. Your trying to may be adding to your health problems.
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  • Frankie91
    Frankie91 Community member Posts: 6 Connected
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    Hi @aim_rp ,
    Really sorry to hear that you're having such a hard time with your health and that this is impacting on work. Please know that not being able to work does not make you a failure and your worth is based on so much more than your ability to be productive in employment. It doesn't sound like you are whinging at all; you are dealing with a lot and it is a big step to start asking for help and support. I have just had to learn this myself after becoming unemployed through ill health and found CBT through steps 2 wellbeing really helped me come to terms with this. If you feel this may be helpful then you can self refer or speak to you GP about this? Services vary from area to area but there should be some form of talking therapy available through your GP. 
    You may also be entitled to benefits so it is worth reading up on ESA and Universal Credit on the government website before going to see the advisors or using the link provided in the response above.
    If you were a member of Unison whilst working then you may also be able to contact them in regards to some financial support via their wellbeing charity (there for you). 
    It may also be worth discussing with your GP or doing some research around if there are any vocational rehabilitation services in your area who will be able to offer more specialised support around working with disabilities than workplace occupational health services are able to. Having a look at Scope's employment services could also be a good start if you are thinking that you would like to go back to work in some capacity later down the line. https://www.scope.org.uk/employment-services/ Employers should also make reasonable adjustments where possible which vocational rehab services can help support you with. 
    You could also speak to your psychologist a little more about the potential autism spectrum disorder as you may be able to access specific help in regards to this e.g. referral to community adult aspergers team who may be able to support you with emotional support as well as practical solutions around managing those work place interactions and stressors. 
    Hoping things start to improve for you soon and this community is always here if you need us.

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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    Hello @aim_rp    Pleased to meet you.

    Thank you for joining and also sharing.  Sorry to hear this, you done the right thing contact our community.

    Thank my friend @Ails for mentioning me.

    I am one of the team of Community Champions.  

    I have a lot of wealth, knowledge, expertise on mental health and well being.

    Qualifications in diet and nutrition and use this to help members of our community.

    I have an addiction history and disability.

    Please if I can suggest mentioned advisors charity.

    You do not know what to do. An idea write down the problems the issues and then say need help with this.

    You could contact these mental health charities.

    All offer floating support, help with mental health, advice and well being and guidance on employment issues and other aspects of mental health.

    Sleep, nutrition, diet, meds any signposting to relevant organisations.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    Might not be in all areas. 

    I would also contact the Community Health Unit . Your local County Council has a well being service.

    Looking at your health and diet, nutrition one to one support.

    Advice and information.

    If it is Crohns do have the links here.  You could ask them any questions.

    https://www.crohnsandcolitis.org.uk.

    Helpline 0300 222 5700

    Please if you wish to ask me anything , offer support, compassion and empathy.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
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  • Bettahm
    Bettahm Community member Posts: 1,439 Disability Gamechanger
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    @aim_rp
    Try googling autistic burn out, and see if anything there fits the way you feel.
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  • aim_rp
    aim_rp Community member Posts: 7 Connected
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    Thanks everyone for your replies, I'll read them all properly in the morning and get back to you :)
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  • aim_rp
    aim_rp Community member Posts: 7 Connected
    edited February 2020
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    Firstly thanks everyone for your welcomes and concern. I do appreciate it.

    Ails, thanks, I've had a look at their site. I see they have a helpline that I might try phoning when I'm feeling more up to it. I'll try and take my time with stuff.

    thespiceman, thanks for those links and ideas. I'm not sure where our Community Health Unit would be but I'm seeing the psychiatrist this afternoon so I'll ask her.

    chiarieds and Frankie91 - thanks for the info, I think I will be entitled to benefits, I'll definitely look into that. I don't think I can use the Scope employment services as I live in Scotland but there is bound to be an equivalent here.

    Franstrahan, that's interesting about the link between those things. I had wondered about that because I know some other autistic people online and they seem to have bother with similar issues.

    Feel free to mark the topic as "solved" too :)
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Welcome to the community @aim_rp! I'm so glad other members have been able to support you here. Please do let us know how you get on and feel free to have a look around the community and get involved. :)
    Scope

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