Share on Facebook
Translate This Site

Enter Your Login and Password To See The Whole Website:

Create a login for $5/month. 100% of the funds go to making this community possible.

Click here if you forgot your login or password.

Good day!

Return To Topics List

4:45:55 AM

click to expand
Relationships begin here

Dear Jen ,

So sorry it has been a very tough few weeks for you. Multiple Sclerosis is a horrible illness. I remember when I was a carer for a lady with MS she was in a wheelchair, couldn't walk , couldn't wash, toilet or dress herself. And yet she had a strong spirit and she was a fighter. You are definitely a fighter too!! I remember then the medics saying they didn't know what caused it. Are they any further on in finding out what causes it? Also, what is a PT? I'm not sure what that guys job title is.

It seems horrendous that your medical practice would leave you alone at the mercy of the fire department helping you to get off the toliet!!! Have they put in a carer for you now? Do they not give you an allowance to get physical help? In this country the lady I helped got an allowance so that she could pay for help. I did nights with her so she never had to be left without that support and help. She had a hoist and it enabled me to lower her to the toilet and up again and take her safely back to her bed. Or to lower into the bath etc. I do feel for you, it's very tough indeed. The worst thing is having to depend on others for help with very personal things. We are all private in that regard and it's awful to lose that privacy:-(.

I also wanted to mention your MS, in case newbies got frightened and think you can't walk at the moment because of Morgellons. In the twelve years of me being sick with Morgellons I have never known anyone who was affected so badly they couldn't walk. Yes we get exhausted and seriously unwell, but not in this way. Though I have heard of some people with Lyme disease who were wheelchair bound when very sick.

hope you get the help and support you need. And I hope that somehow they are further forward to finding out what causes it. And also therefore that they can find a solution. Though just like Morgellons I think there is most likely not enough time, money and resources going into research and cure.

Take care ,

Jen D
4:45:55 AM

Hello everyone.

It’s been a long 3 weeks of not being able to stand or transfer easily. I stayed in apartment. Stayed in underwear and shirt because that’s all I could do.

Besides numerous calls to fire dept for lifts. Super helpful! I also asked for a home health aide. She visited yesterday and helped get me in shower. After 2 weeks of no shower it was amazing!

And transfers on/off toilet are easier. I was so nervous to go to bathroom that I didn’t drink.

I put pants on today! Went down to mail and see people. Called fire captain to say I’m beyond grateful for their help. Pray before every move. Do everything with God. Today is a good day!

Then a PT came by this morning. I made the mistake of mentioning a fall trying to get into bed. Legs are still tight. Exercises like let’s stand at sink were almost impossible. There was no warm up. Standard response of you will only get worse so preserving is the focus. That’s not my truth.

Another how about Botox? I was very direct with him I will recover. And I won’t do any drugs. His look was I don’t believe you. Energetically cancel him and that visit.

Of course no one in that system can imagine. I do with a strong belief in God. And asking for help from the right people.

Sending angels to anyone needing strength to ask for the right help. It’s amazing when it works. I always remember to fill heart with compassion for self and all parts. And breathe!

Hope you have a good day. Be curious and give yourself a hug!
God bless everyone.