when you are the trigger

[Nightingale]

Not much has changed so I dont come here often cause I feel like there isnt much can do! Im still very unwell with late stage lyme, I have been offered only 4hrs a week care support so still reliant on my BPDm for care. Went to hospital for a week and within 24hrs of me being discharged Im getting told that my disability is in my head and all support (outside the formal carer) is stopping. What can I do when the system is setup to force people into carer roles when they dont want to? After months of begging she finally loosened her boundaries and said I could have 2 meals a day, now I ensure the careworker makes enough meals so Im covered (Im on a really special diet so I cant order pre-cooked meals) but often the carer only has time to cook, change my bed and clean the mould from the ensuite - leaving everything else to my parents. Everything about me, about this situation is a trigger for her! I dont know a way out.

[Kwamina]

Hi Nightingale

Been a while since you last posted, sorry to hear you're still dealing with the effects of lyme disease. I know from your previous posts that this illness really affected you and your parents' behavior afterwards wasn't particularly helpful either.

It is an unfortunate situation that you now have to rely on your BPD mom for a lot of your care. The fact that she for months would not allow you to have 2 meals a day, really says a lot about her disordered mind and disturbing behavior. I am glad you now got the care worker to ensure you have enough meals.

Late stage Lyme disease is a difficult disorder. What is the prognosis for your illness and recovery?

I am glad you came back here for support and advice. Take care

The Board Parrot

[Learning2Thrive]

  Nightingale,

I’m so glad you’ve reached out to us again, but sorry for the circumstances that brought you back. 

Kwamina has asked some great questions.

I know everything is so overwhelming right now, but what is one thing you feel you might be abe to address or focus on improving right now?

  L2T

[zachira]

My heart goes out to you in ways you probably can not imagine, knowing that you are being cared for by your BPD mother and are suffering from lyme disease. I identify with your story because my brother who had cancer ended up spending his final months with my BPD mom who abused him terribly. What really helped was that the hospice nurse knew that mom was abusive and she got the hospice social worker to come to a family meeting with mom present to help my brother as best she could, and the meeting made a big difference. Do let those who are doing in-home care and your medical providers know what your situation is with your mom. They have seen everything and can help you in ways you never thought possible. Take care and keep us posted. We are here to listen and support you.

[Woolspinner2000]

Hi Nightingale,

I'm so glad that you reached out for support and validation from us. My D29 had lyme as well, so I understand how debilitating it can be for you. She needs help too, and so do many lyme patients. It is a debilitating disease. How is the treatment coming? Yes, you definitely need some special food so that you don't become more sick. I'm really glad that you have figured out what your dietary needs are.

I think with lyme disease in particular that most people don't understand what it is like, just like the parallel situation of having a BPD parent. Most people also do not understand that either. Many people refer to a lyme patient as having it all in their head, that they're looking for attention. So not true! Do you think your uBPDm is upset because you need attention and help? Have you ever been able to ask her if she would be able to understand what a debilitating illness is like?

I believe one of the absolute best things you can do is to have your caretakers advocate for you, and also your doctor. Have they confirmed by medical testing that you have lyme? I know that often a person with lyme doesn't test positive because their immune system is so worn down that it cannot register that there is an infection. Are there options for a second opinion so that your disability can continue?

Many hugs,   
Wools