Hi 👋

Welcome and introductions
1

Hi. Am new​:wave::hugs:

Nice to meet you all.

I’ve been having symptoms for? 5years that were thought to be migranes/anxiety, but now developing a lot of quite advanced MS symptoms.

Worsening really for last 2 years when been fighting and screaming for a doctor to do something it feels like.

Rheumatology said definitely fibromyalgia, but probably something else autoimmune and neurological.

Finally seen a neurologist who did Mri which shows inflammation in brain. Having LP this week.

Is there any single parents of teenagers in the same boat? I’ve not explained to them yet as don’t know what type etc in order to give them info. But, have ordered a few leaflets from here, if they’ll read them.

I’m obviously very ill. But, they really don’t seem to care, and are making my life hell.

It’s incredibly lonely being so ill and being stuck with horrid teens, with an abusive ex ‘father’, who actually manage to make symptoms worse daily.

I was wondering if anybody knows of anything that was available for them, like councillors or a different forum? They don’t seem to want to care or listen to anything I say, but, if pushed in direction of something more for teenagers, might actually take notice and behave like decent mini humans.

There’s also the gut wrenching fact that I have to give up my job. Going through ill health retirement now. I love(d) my job. The way people are treating me is disgusting. Treated like a ‘dole bum’, which of course is worse as am also a single parent.

I’m sorry for ‘vomiting’ my feelings all over your lovely thread. I promise I can be happy and jolly sometimes

Sera

2

Hi Sera, oh shucks love! You’re in the middle of a horrid time, I can see.

Teens can be so wrapped up in their own issues, that they dont seem to care what their parents are going through. But they do really need you to be there for them. My kids are grown with kids of their own and I sometimes feel they are still not very interested in the difficult life me and their dad has. I’ve been very dependent on him and carers for over 20 years.

Dont apologise for off loading to us…that’s what this forum is for…we all know what it feels like to be told you have an incurable, chronic condition.

I used to get info leaflets from here and would like to think they have something to help you in explaining things to your family.

If anyone is treating you like a ‘dole bum’…then bully for them. They are not in your shoes and aren’t worth your precious energy just thinking about them. Give them a wide berth if you can.

You need an ally, a confidant. Have you got a big sis, or brother, or close friend you could off load to…someone who you can trust?

much love Boudsx

3

Thank you. It’s good to chat with people who actually understand.

I have done a spring clean of family to be honest, and the people who don’t make an effort, I don’t bother with anymore.

I have to think about bringing up the children the best I can with what I’ve been given, and having some kind of life while I’m able.

I’ve got a box full of leaflets ready for when they’re sat down for a talk. Hopefully, they will read them and take an interest.

I know, with the older ones, I have an older daughter too. Hardly answers her phone, but turns up every now and then, esp if needs something.

I have a few friends who are there, but one who is on the phone daily checking if ok. She’s brilliant and older, so wiser. The others will let me down when said will meet me without thinking twice.

Family, have an aunt and uncle who are v good, my aunt will come and go for a walk with me etc, not trusted on my own as legs give way. My parents haven’t asked how I am in about 3 months, so not going to even tell them, they can find out from the gossips.

I haven’t researched types of MS etc yet, but I don’t have much hope, I have been on a downward slope with symptoms now for 2 yrs, no good days/weeks.

I will have to think about getting help soon, maybe a cleaner, am waiting to see if can have sickess benefits. Which hopefully will help with paying. Work will pension me just after christmas, been told not to take it out as only 40.

When did you have to start having carers and stop working?

4

Vomit away Sera, sometimes just saying or writing stuff can be a bit therapeutic, especially if we have an understanding of how you might be feeling.
When I tried to explain to younger people I found the shift.ms website https://shift.ms/and some of it’s video content pretty useful.
Good luck
Mick

5

Thank you Mick…

I’ll have a look at that site

6

Hi again.
You sound to have already got a lot of stuff sorted in your head, which is good.

I had a job I loved…Senior Tourist Information Assistant…very interesting, meeting people from all over the world! I was only 47 when I retired…69 now!

Hubby did all my care for 11 years, then we got carers in…had many…PAs and agencies…wouldnt recommend agencies…had a lot of bother with 4! But sometimes, needs must! They cant all be bad…I hope!

I have 2 good PAs now, doing 30 hours, plus 2 waking nights. Hubby appreciates the rest.
If you want to ask anything else, that’s fine.

Boudsxx

7

Thank you. Gives me an idea of what’s to come.

Been at the neuro centre all day having several lumbar punctures. All failed so have to go back to have under xray. Will be very bruised tomorrow.

Was hoping would get today over with, then an idea of what type I have in a few weeks.

More waiting and worrying ahead.

While resting after procedure email comes from work wanting the big HR meeting. At least when done, will know what’s what (Pension at 40)