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  • Unusual Chronic Condition

    Reply

    SimonJacobs09

    4 replies

    Edited by SimonJacobs09 5 months ago

    Hello,

    Feeling shy as a new member here. I'm in S.W. England and I suffer from an as yet undiagnosed condition, which stemmed from receiving electroconvulsive therapy for depression in 1993.

    It grips a certain muscle group in my head and neck and jaw and has been very painful for over 2 decades. I've had a series of flare ups over the last 2 years and the most recent has impacted so much on my comfort that I can no longer spend time sitting up.

    I am laying down most of the time and my body is starting to get weaker. Sitting up normally, now, causes me to become feint/near to passing out after about 10 mins or so.

    I think my road will start to go towards terminal now. I am suffering terrible anxiety attacks about the road ahead, especially after trying to sit up normally this morning and nearly passing out with discomfort.

    I dont necessarily think anyone can relate exactly to this condition and I live aline; no family or close friends.

    A care team are attending me in the morning and evening.

    Thank you for this space

    Simon

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  • Clare

    Hello Simon,


    We appreciate that reaching out to others online can make people feel nervous. We’re sorry to hear about all that you are going through. It’s understandable that you are feeling so anxious about how these painful symptoms may develop and what the road ahead may be like for you. Have you been able to speak with your doctor regarding your worry that your condition may become terminal? If not, you may want to see if you can talk with them about this.


    Living alone can feel isolating at times and some charities offer befriending support or support groups, depending on what they offer these may be in person, over the phone or online. Due to the rareness of your illness, it might be more challenging finding something specifically for this type of illness but there may be options we could suggest based on your age or where you live?


    You mention that your condition is the result of the electroconvulsive therapy you had for depression, it may be worth contacting the mental health charity Mind to see if they have any information or support around this - www.mind.org.uk/information-support/helplines/


    It may also be helpful to share your concerns and enquire about befrienders with the team supporting you as they will hopefully be able to offer reassurance and indicate the kinds of practical help that might be available to you.


    We hope others here on the community may have suggestions for you.


    Take care,


    Clare – Support Line Officer

     


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  • SimonJacobs09

    Edited by SimonJacobs09 5 months ago

    Thank you very much Clare.. Im having too much pain today to reply in detail but that was very useful, thank you. I may try the Mind route. Youre right I am* struggling to get support generally because the condition is rare and hard to define.

    Best wishes Simon

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  • SimonJacobs09

    Edited by SimonJacobs09 5 months ago

    Hello Clare, regarding any possible help groups ...I'm in North Devon. Ilfracombe...

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  • Clare

    Hello Simon,


    Mind’s national Infoline is 0300 123 3393, they can also be contacted via email - www.mind.org.uk/information-support/helplines/ or you may want to speak with their local service in Devon - https://www.devonmind.com/contact


    Depending on your age you may want to contact Age Concern - https://ageconcernnorthdevon.org.uk/befriending-service/ and a charity called Silverline. Silverline is there for anyone aged 55 or over and their website says their ‘helpline gives anyone aged 55 or over the opportunity to exchange a friendly word, access support, or enjoy a long enriching conversation.’ -  www.thesilverline.org.uk/


    The Royal Voluntary Service may also be worth contracting to see if they offer any befriending support where you are https://www.royalvoluntaryservice.org.uk/our-services/supporting-people/


    Searching for Befriending options in the Devon area has brought this link - www.communitylinks-sw.co.uk/service/befriending/ . Their website says that they have befriending and social inclusion coordinator that can be contacted by phone and email.


    I hope that you will be able to find some support or suggestions of where to access this through them.


    Take care,


    Clare – Support Line Officer

     


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