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We want to hear from you: please tell us about your experience of the online community.

Anyone with a similar disability? Arachnoiditis and Bronchiectasis

Krystal

Hi my name is Krystal, I have just signed up for scope reason being maybe their is someone on here that has same disability as myself. I was told in 2016 I have a spinal disease but their is not a thing that can be done due to the disease it is called Arachnoiditis,and a condition in my lungs called Bronchiectasis stage 3 and other bits but I do not want to put people of to talk to myself, really that is the outcome of my life.

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Comments

Ami2301

Hi @Krystal welcome to the community! I have not heard of them before, would you mind telling us a bit more about them?

Sam_Alumni

Hi @Krystal
Welcome to the community.

@nmcmurdo spoke about Arachnoiditis here, @jackierice mentioned it too, though this is an older post. @Cat2018 talked about Arachnoiditis and accommodation here.

@chele17 has bronchiectasis and mentioned it in their welcome post and @NikkyA spoke about bronchiectasis and ESA here.

The British Lung Foundation say:

Our friendly helpline team on 03000 030 555 are ready to answer your questions. If you live with bronchiectasis, or care for someone who does, you may be entitled to welfare benefits to help you live with a long-term condition. Our team can tell you more.

There’s more information about bronchiectasis including videos of people living with bronchiectasis at the Living your life with Bronchiectasis website.

You can find out more about breathing techniques from the Association of Chartered Physiotherapists in Respiratory Care.

I found this website with information and support about Arachnoiditis that might help too?

Krystal

Hi it’s Krystal not been on here for a very long time a lot has happened since 2019, I had covid in 2020 and life has been very low for myself. I had to have a emergency MRI last year due to becoming double Incontinent dry quickly. I have been quite lucky as I am waiting to see a spaniel specialist but got to wait until 2023 January time. My mental health has not been great at all my spaniel disease has moved to the centra of my back my doctor does not want to help with the pain control, I. Made a call to the doctors that I am with now and no body wants to up my pain relief I am on on 400 in morning and 400 in after and then 600 at bed time??? When I was in hospital in June I was put on lidocaine pain patches and they to off the edge of the never pain that I suffer 24 hours a day 7 days a week, the doctor I spoke to was so s rude she has never meet me at all I would rather day then be in the pain all the time. I am at the edge of taking a overdose to put me out of this pain I don’t see way any one she be in pain in this day and age, the doctor told me she would make a pain plan to help me until I see the spaniel specialist in January next year, I shall be up ready in the morning and I shall make my way to the doctors and I shall not be living until their is some sort of pain plan in place. I am really sorry after such along time to have to right this post and post it but I am my wits end and this is truly how I fill. You put in all your trest in your doctor and she could not even ring me back with a plain.I fill very let down especially buy somebody that should be looking after a disabled person, and due to safgaruding many thanks that those that read it I am greatful for any feed back please x Krystal was from Croydon now in Norfolk

Alex_Alumni

Hello there @Krystal and welcome back to the community. Things sound really tough at the moment, so thank you for reaching out. I'm so sorry to hear how let down you feel by your GP, and the impact your conditions are having on your mental health.

We'd like to support you with this as much as we can, so please keep an eye out for an email from community@scope.org.uk a little later today. There's absolutely no need to be sorry for how you're feeling, and I hope you know you're not alone here on the community.

When was the last time you were able to speak to your GP about a pain management plan? Have you spoken to more than one GP about things at your surgery?

You might want to visit our Chronic pain and pain management category if you'd like to connect with other members who also live with chronic pain every day. This is a very supportive and friendly place to share your thoughts if you need to, so please don't hesitate to ask if you need anything.

We're here to support you, so let us know if we can help further.

Alex