Mental health issues
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Agoraphobia and Hospital Appointments

MaxineAshleyMaxineAshley Member Posts: 38 Courageous
edited June 2019 in Mental health issues
Hi 

Recently my agoraphobia has made a massive impact on all my appointments as I can no longer leave my home. 

I have had to cancel my psychiatrist appointment twice, and not seen him since October last year.
I’ve also had to cancel my hospital appointments for all my osteoarthritis in most maybe all my spine, fractured shoulder (that was left unattended for 8 months), curvature in my spine, prolapsed discs, Cauda Equina Syndrome, nerve damage, urology (hypersensitive bladder) and pain managements, but when it is explained that my agoraphobia is preventing me from attending the appointments, I receive another appointment much later in the year, like 26th October for the pain clinic. 

Fortunately a District nurse came today to take my blood as I suffer with Vitamin D Deficiency at a severe low and dangerous level. 

I really need advice on getting the help I need without having to leave my home, as I’m terrified to go outside.

I feel stuck on a hamster wheel as I know I need the hospital appointments as I had about 10 episodes of falling down the stairs last summer and hitting my back and landing with a full impact on my lumber and coccyx, and feel I need a new MRI as they base my spine on a previous MRI from May 2017.  But now I can’t leave my home, how will I be seen by the correct health professionals?

Maxine 




Writing my first novel, excited to get it finished.

Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @MaxineAshley welcome to the community. How are you doing today? :)

    I am sorry to hear this, that's a lot to go through. Thank you for sharing this with us. Has your GP or Doctor made any suggestions as to how you can go about this? 

    Will having a friend or family member attend the appointments with you be helpful at all?

    I'll tag in @MickConnon our mental health advisor for his advice.
  • [Deleted User][Deleted User] Posts: 587 Listener
    Sorry to hear you are struggling a lot with getting help.

    Can you manage to leave your home with someone and would it help if you booked the appointments for a quiet time of day?

    I also have agoraphobia and I'm the same as you when it comes to appointments, my Son comes with me but even then I cancel appointments more often than not, I do manage to attend some with the help of my Son. 

    It's hard work isn't it. I'm trying to figure out how to get help with different things myself because I can't use the phone properly either.

    I'll keep my eye on this thread to see what others suggest.


  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    Thank you @Antonia_Scope and @WF2k for responding.

    I used to be able to go to the appointments with my mum, but now it’s even worse and I find that triggers my anxiety issues and extremely negative thoughts of suicide. 

    I’m hoping my psychiatrist will visit me at home, but not sure about the hospital and physio appointments? 

    And like @WF2k I truly struggle to make and answer phone calls. 

    I appreciate that I’m not the only one who suffers like this as it helps not to feel I’m the only one with these problems. 

    Maxine 
    Writing my first novel, excited to get it finished.
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @MaxineAshley thank you for your reply. I see, I am sorry to hear it can be a trigger for you.
    If it's possible could your mum or someone you trust, call, text or email Anxiety UK's Infoline for advice and to get in touch with a medical professional to see if any adjustments can be made? 

    MIND have some self care tips that can help with anxiety , tackling negative thoughts with distraction  and practical tips if you are having suicidal feelings

    You are not alone and we are all here to support you. Please feel free to talk to us, some of our members have mentioned agoraphobia too.

    Please keep us updated. :)
  • [Deleted User][Deleted User] Posts: 587 Listener
    I wonder if the GP can give you something to take the edge off your anxiety so you can actually attend even one appointment and get the help you really need. Can your Mum speak to the GP on your behalf? I've made my Son my appointee at the medical centre and the assistant practice manager is aware that I can't always go in and I explained via a letter to her about how my anxiety/depression and FM affect each other.

    I don't know what else to suggest with me struggling myself. All I can do is offer to be someone you can talk to and relate to if you need. Sending you lots of hugs.
  • Connie00Connie00 Member Posts: 255 Pioneering

    Hello

    My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    Welcome to the Community. its good that you have reached out to us.

    Have you asked your Doctor to do a home visit? Are you on anxiety Medication?

    You have so much going on with your body at the moment, if you are taking Medication

    For your other symptoms these could be reacting to make your Condition worse than you actually are.

    It might be wise to have a chat to your Doctor, give them a call.

     

    if we can be of any further help to you please let us know.

     

    Have a good day

     

    @connie00


  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thank you for sharing your experiences with us @WF2k
  • MickConnonMickConnon Member Posts: 56 Courageous
    Hi @MaxineAshley, @WF2k, @Connie00, @WF2k and @Antonia_Scope. Apologies I haven't been on this forum for a while but been very busy. Agoraphobia is a very debilitating problem and I can understand fully how this impacts on attending hospital appointments . Your psychiatrist should be able to visit you at home to review your medication so please insist on this and do not accept any explanation that they insist that you come in  to clinic. As for your GP, it might be a good idea involving those family members close to you (and more importantly trust) to help you gain access to the services you need. I know GPs do home visits too and this can be requested. As for the specialist hospital visits, this is a different matter and will definitely need support from family, local voluntary services who can also arrange transport but I do know that if it is a volunteer car service that you do need to pay mileage for this. 
    Am thinking about something that might assist you with the anxiety side of things and although there are medications out there to help, like Benzodiazepines like Diazepam and the like, GPs get a little twitchy when they are mentioned as they become addictive very quickly. There are alternatives to this that can help which do not have the same addictive side effects like Pregabalin. I am telling you this as it will be looked at better by GPs and are less addictive. However, the other medication you are currently taking will need to be looked at closely by the GP and Pharmacist. This is due to contra indications and I have found Pharmacists to be better at spotting side effects than GPs. 
    The thing I understand about Agoraphobia is that the longer it goes on, the more of a problem it becomes and it is about breaking that cycle. I totally 'get' you feeling safe at home and have been called in to help someone break the cycle. Even if its for a minute outside the house or even opening the door and standing close to it for a little while - gradual exposure. I help others use breathing techniques, distraction and have therapist friends who recommend this too. I have noticed that @Antonia_Scope mentioned Anxiety UK who might have some other techniques that might be useful. I realise that what I may suggest to you will be a tall order and understand that one fully, have been there! :-). Little steps at a time, don't try to push ahead as that is when problems start. 
    I'd start with the GP and get them onboard as its someone that can pull a lot more strings than a lot of us can. Anxiety UK might be able to recommend other things. Am here listening and am here if you need to vent. Sending you positive thoughts

  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    Thank you @Connie00, @WF2k, @Antonia_Scope, @MickConnon

    I appreciate all you kind and helpful comments. 

    I’ve been on Diazepam for over 3 years, and Amitriptline (for nerve damage from Cauda Equina Syndrome), unfortunately I can’t take Pregabalin as I had severe side effects from them, and many other types of medications, which maybe due to the cocktail of meds I’m already on? 

    My mum is always so busy that it’s hard to pin her down, I only get to see her when I used to have my appointments or when she would bring me my medications each week as I’m not allowed to hold on to them myself due to suicide attempts. 

    My husband works full time, so he isn’t able to help with phone calls. 

    It truly feels like a hamster wheel at the moment. 

    I’m hoping to be able to have a personal garden which won’t be overlooked by others if the go ahead is a yes, keeping my fingers crossed.

    I truly appreciate the support and guidance. 
    Writing my first novel, excited to get it finished.
  • Connie00Connie00 Member Posts: 255 Pioneering
    @MaxineAshley

    We are here any time you want to reach out

    @Connie00

  • April2018momApril2018mom Posts: 2,869 Member
    Hugs. I know this is not easy but hang in there. Take it slowly at first and then see what happens next without any problems. Definitely approach the GP to ask for help. What medication are you on? 
  • Connie00Connie00 Member Posts: 255 Pioneering
    Hi @MaxineAshley

    That is quiet a cocktail of medication you are on as you say you can’t take Pregabalin

    Due to side affects have you tried Gabapentin she is a sister to Pregabalin, I find that

    Better to take?

     

    I am sorry you don’t see your Mum as much as you want, do you have a good relationship

    With your mum perhaps you can reach out to her. Tell her how you are feeling

     



  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Welcome to the community @MaxineAshley. I hope you get the support you need but just know that the community is a lovely bunch and we’re all here when or if you should ever need us. 
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    edited June 2019
    @Connie00, I’ve tried Gabapentin and had full body muscles spasms which locked and felt like having severe cramps all over my body, so that meditation is a no no for me. 

    I’m close to my mum, it’s just her lifestyle that keeps her busy all the time. 

    @April2018mom
    I take Tramadol, Paracetamol, Declofenac, Amitriptyline 10mg & 50mg, Omeprazole, Tolterodine, Diazepam and Symbocort for my asthma. All on the highest dosage which to be honest doesn’t help. 

    But i I know there are people in worst situations than me and are on stronger medications, but my pain clinic doctor doesn’t want me to take any tablets anymore, just to stop taking the ones I’m on. 
    Writing my first novel, excited to get it finished.
  • KorrinaNewtKorrinaNewt Member Posts: 3 Listener
    Hi hunny o suggest taling it a day at a time go a little further put your door
  • [Deleted User][Deleted User] Posts: 587 Listener
    @MaxineAshley I don't take meds for my MH problems, haven't since 2012, I'd tried many different types and sadly none of them helped, I was referred to a psychiatrist who advised me to stop taking them. I've also tried CBT, counselling etc. I can't take painkillers nowadays due to swallowing and stomach problems.

    What about some sort of support worker? Then again, if you are anything like me, you may not be comfortable with a stranger, but you really do need some help to try and get you the correct care. Are you able to email the medical centre you're with and explain that way? 
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    @WF2k

    Thank  you for messaging me again. 

    I was meant to have a social worker. 

    I saw her at the end of 2017, then in July 2018.  I don’t know why she never bothered with me after that as I was meant to have 6 appointments, over 12 weeks, to try and get me out which was the initial appointment back in 2017, when she came to me for the first time and assessed what help I needed. 
    Then I never heard back from her. So my psychiatrist arranged again for her to see me, that was in July, she left saying, she will wait for my anxiety to calm down before trying anything. 

    So I was to deal with it on my own.

    I know the system is under a lot of stress due to rising numbers of people suffering with health problems.
    So I’m extremely pleased to be part of this community as I feel supported and helped with suggestions with I truly appreciate, thank you for that. 
    Writing my first novel, excited to get it finished.
  • [Deleted User][Deleted User] Posts: 587 Listener
    @MaxineAshley Yeah it's a shame when that happens, I had a support worker but it was a charity run thing so they were limited as to how long they could help me, she helped me with what I needed then had to sign me off, I can't get another from the same place as they have new funding and their criteria has changed.

    It's a shame the social worker hasn't followed things up with you yet, does your psychiatrist have any suggestions?
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    @WF2k

    The last time I saw my psychiatrist was back in October.

    I’m hoping he will be able to see me at home now as my 2 previous appointments my husband had to call and cancel as I was having massive panic attacks and self harming.

    I then received a letter asking me to see him at his place of work on the 18th June, which I started to panic about, so I managed to get my husband to call again and ask him to visit me at home.
    At the moment I’m waiting to hear back regarding that. 

    In October he said he was going to contact social services to restart my sessions but as yet, nothing has happened. 

    I agree with you about the whole criteria changing and budgets too, having the knock on affects to help people out. 

    If I could afford to go private I would to help take the strain off the system plus get the help I need quicker, one day that might be possible as I’m writing a novel and hoping to get it published the beginning of next year.

    At lease suffering with all my problems I can still write, and make a career of being an author. With that I live in hope and have faith.
    Writing my first novel, excited to get it finished.
  • [Deleted User][Deleted User] Posts: 587 Listener
    Oh that's awesome that you're an author! 

    I really hope that the psychiatrist will agree to an home visit, please keep us updated and lets hope he can help with the social worker situation. 

    I feel the same way, I would also go private if I had the money. 

    I wish I could help you.
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    @WF2k

    I will keep everyone updated on here in regards to my appointments as it might help others to know how to have appointments at home too.

    That’s so kind that you would like to help me, as I would like to help you too. 

    Another reason for for becoming an author is to help others in two ways. 1: a world to escape into as they read and follow the journey of the story. 
    2: starting a charity and donating to other charities too.
    Writing my first novel, excited to get it finished.
  • [Deleted User][Deleted User] Posts: 587 Listener
    Aww you sound lovely :) I wish I could read books but my attention span and concentration are terrible.


  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thanks for updating us @MaxineAshley how are you doing today?

    Fingers and toes crossed for you to get a personal garden :) 

    I am sorry to hear you had to deal with everything on your own and I hope you will get some support from your social worker, as soon as possible.

    Please free to chat us when you can, thank you so much for reaching out to us. I know it is not the easiest thing to do. 

    Best wishes :)
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @MaxineAshley great to talk to you. Thank you for sharing what you are going through. 

    I know every one has contributed hopefully given you a lot of positivity.

    I was reading your posts and do know there is a charity called RETHINK.

    They deal with members of the  community who having problems or issues accessing the right help and support.

    Who have mental health conditions or illness.  Often by being attending as an advocate.

    Representing you at meetings or consultations.  Speaking on your behalf.

    Explaining to medical professionals what you require and need.

    You could ask see what they can offer for you.   

    Might be useful to consider.  Have a look on their website.

    I know from reading you having a lot of difficulty but is some thing to look at.

    I used them myself after many issues and problems with medical professionals and often got walked over. Got no where.

    Have mental health issues my self and do know it finding the right support, guidance, advice for you.

    Always in prayers.

    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
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous
    @WF2k @Antonia_Scope @thespiceman

    Thank you all got your kind guidance and support as I don’t know too much about where to look for help.

    I truly appreciate everyone who have commented on this as I was so worried about future hospital, Drs and psychiatrist appointments. 

    With your guidance, you all have truly helped me and made me feel more positive about my future.

    I don’t mean any disrespect when I say, unless you suffer with mental or physical health issues you don’t know what we are going through, truly no disrespect to anyone. 

    It is so so nice to find a community that completely understand the difficulties of we all are struggling with but when others respond it feels safe and secure to talk about things that other (my family, sadly to say) who have no idea what it’s like to live with my brain and body.

    Thank you all from the bottom of my heart for your all help and support. 
    Writing my first novel, excited to get it finished.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @MaxineAshley Thanks very much for kind words. What is important we are here to help and support you  and offer friendship.

    I know always here.

    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
  • MaxineAshleyMaxineAshley Member Posts: 38 Courageous


    @thespiceman thank you for letting me know about this Charity.

    I will look into them a bit more tomorrow. 

    Thank you you for being so full of knowledge, helpful and friendly. 

    Kind Regards
    Maxine 
    Writing my first novel, excited to get it finished.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @MaxineAshley Thank you very much  As a  community member and a community champion is being that.

    Being useful.  Helpful. I am on here most days. I  will be only too happy to be supportive.

    I hope if you need or want to know anything please get in touch.  Please ask. 

    If I can help will do if not find the information for you.

    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
  • MickConnonMickConnon Member Posts: 56 Courageous
    Hi again @MaxineAshley. Just like @thespiceman said, we are here to help and although we’re not always here, especially me, someone else is. I can easily be poked if something needs my attention, which I do need from time to time. As the newbie advisor, the overall support on this site is phenomenal and I feel really privileged to be part of this. 
    i hope you do feel listened to, that’s only part of what we do. Welcome to the site, you’ve maybe found some positivity out of all of your worries. We all have them and “It’s OK” to hold your hands up and ask for help. My job would be a lot better if a lot more people did that. Am here as I choose to be and aim to help those I come into contact with. 😁 
  • craigella123craigella123 Member Posts: 6 Listener
    Was it really necessary to keep me on 4mg of Respiridone for Mental Illness for over 15 years? Was so drugged up just shut down completely. I feel angry that all those years were wasted.
  • MickConnonMickConnon Member Posts: 56 Courageous
    Hi @craigella123. Have just picked this post and am surprised you we’re on 4mg of Risperidone a day. Am not surprised you felt drugged and if it were me I’d want to know why and I’m sure the only people who can answer this would be your GP, or consultant psychiatrist (if you had one). The fact that you felt you have lost 15 years of your life is very sad. Someone made the decision for you and this should be documented somewhere. Are you still under MH services? That is do you see a CPN regularly?were you sectioned under the MH Act to admit you to Hospital?  Feel free to ask any further questions and I will do my best to support you 😁
Sign in or join us to comment.