Real friends

Bones, joints and muscles
1

Hello all. I'm Zoe. I'm 40 yrs old. Diagnosed at 27 yrs old.

I feel strong emotionally but something is really getting me down.

My 5 yr old daughter and I moved into a domestic violence refuge when she was just 2. So then we found a home. I was in refuge for 1 yr.

So moving on....I got 200 miles away so I don't know anyone. But my daughter started school and is in year 1 now.

So I got talking to mums at school as u do. But.......I am so fed up with some. I can't always answer my phone and I can't be there sometimes but that is a big problem for some people. So i I get made out to be a rubbish friend and sometimes get treated like one. I don't go around judging everyone but I feel judged by some. It's invisible at times...isn't it. FMS. I've heard comments like she's in bed again. And moody people when I can't pick up phone whenever. It's really getting me down.

I know I don't need friends like that. So I now have 2 mums at school now not talking to me.

I have 1 solid friend thats not like that in our new area.

My best friend is in the area I had to leave which was so hard. She has M.S so she gets it when I say I'm sorry I was to tired or unwell. She knows. They have their similarities those illnesses.

She is an amazing person. I miss her like mad.

I have made 1 very close friend where we live now. The rest get me down so much they just don't get it. I know it's an invisible illness but still it's rubbish being judged. I'm very unhappy and fed up. I end up feeling like a rubbish friend to people. Which I shouldn't let them get to me but it does hurt.

I know those people are not real friends but it does still hurt and get me down. How do u guys feel??

Thanks for listening.

Zoe.

2

Hi Zoe....

I understand and know how you feel..   I have to remind myself that not everyone 'gets it', nor do some 'want to understand/get it' and nor do some folk 'care to want to get it/understand', Fibro.  

It is hard for folk to get their heads into 'putting themselves into the shoes of others illness's.   Don't feel rotten, or guilty yourself for their failure to 'grasp what ever you have tried to explain to them'.   The error is theirs.  Lord forbid that they should ever be stricken with FMS themselves and find out the hard way, or MS, or ME...  All of those conditions of course causeing Chronic Fatigue/ME.

I left a 17yr situation that was hardwork and yes nasty..   Thankfully though my child was all grown up and left home before I was in this long term relationship, and I didn't have anymore children to my then partner.

When I was diagnosed finally, the Specialist told me 'NOT to ever feel quilty, ever!  And to never accept being told it's all in your head etc, push or work through blah blah.  And continued to also say you simply tell folk you have a health condition, 'Fibromyalgia' of which there is NO known cure to date, and sadly NO known Pain relief, etc.  

I do still have to prod myself and remember to not feel the guilt for not contributing to society as I normally once did.  I have to remind myself that the effort I do make with any voluntary work I maybe able to complete, is still contributing.  That the assisting of an older neighbour on their own now, once and awhile when I can, and keeping an eye on things and contacting the family whenever necessary, is also a way of 'giving back' to society.  I am also a friendly listening air to another older person who I also on the odd occasion visit and chat with over a cupper.  Both these folk are very lonely people, much older than myself.  I most certainly prefer to live quietly on my own for obvious reasons, FMS.  I don't feel lonely, what I do feel from time to time is the 'not participating in the working for salary/wages'.. That is what gets me HARDout!!!  

Hence I mentioned the having to 'prod myself' about doing voluntary odd little things in the community, if and when I can.

Honestly Zoe, don't fret over those that don't have the people skills to understand or those that have not sensibilities about others..  Some folk will never accept or take on board 'common sense', and will live in denial of others disabilities etc.  That's not yours, mine or anyone elses fault nor is it to be our problem.

May I ask what part of the world you live in Zoe?   I'm in NZ.

 

3

Hi Zoe, 

those people aren't true friends!!!!. 

To me people like them like standing in the playground and gossip or Bitch about other people.

your right if you carnt get to the phone.....you simply carnt answer it!!!!. 

I have 3 children....my youngest is at a primary school ( And Thankgod He's leaving July this year to start the middle school).

At his school they all have their little groups where they congrinate and gossip and bitch about other people......you are probably a lovely person and those sad few refuse to talk anymore to you because one of them said not to talk so they follow suit!! If u know what I mean abit like follow the leader!!.

dont take any notice of the ( I know you think that it's hard but it's not ) they simply aren't worth it. 1 good friend is so much better than 4 horrid gossipy nasty people?!!.

just be your self when you go for your little girl and don't be intimidated by those people Hold your head up high and give GIRL POWER!!! Lol

all the best Hun 

p.s let me know how you get on....

4

Spot on Shelly!

I actually prefer to reserve most of my energy 'for me'..  these days. I won't waste my time or energy on other folk who are obviously 'lacking that something' and feel the need to mix in groups and have nothing else better to do that group chastize one or more other folk.  

Yes, it does remind one of school yard bullying, as you said, 'follow the leader'.   Nasty nasty nasty.... wouldn't even waste my most valuable energy worrying about folk like that.   Being involved with folk like that, brings you down eventually till such time as you get p*ssed off and annoyed at them anyhow ....  and want to part company.  So the warning bells are already ringing for Zoe..!!!   To keep a distance.  

Plenty of other folk in parts of the suburb, in clubs and other group interest activities...   that will share interests and possibly even KNOW of or have FMS or similar whom (Zoe) can relate to.   

Any we are also here!!!   aye Shelly....lots of us in this here Fine Forum....  :-)  

5

Big gentle hugs Zoe. 

I too don't have many friends near since moving over 100 miles with my job, and because of my illness (was originally dx as FMS but rheumy said it's Joint Hypermobility Syndrome - which is just as debilitating) have to refuse or cancel invites at the last minute.

Even work colleagues who were supportive have stopped calling/texting because sometimes I can't answer.

This forum is amazing for advice, chats, moans or anything else you want to get off your chest. I joined a local FMS support group who meet up twice a month and it's amazing being able to be yourself. They are all over the country so should be one near you.

You are defo not alone hun.

Take care, gentl hugs xx

6

Hi Zoe

You have come to the right place on this forum and the support you will get on here is amazing.  You are NOT alone.

Have you tried CBT (Cognitive Behaviour Therapy)? I found it ever so helpful to me, like yourself people around me just didn't understand, but by having 6 sessions on a one to one basis was a blessing in disguise.  It helped me to become more of  positive person and taught me to deal with one day and moment at a time and how to avoid negative people?

I am 45yrs of age and have been suffering for over 20yrs but only diagnosed with Fibro Aug 2014.  Since finally being diagnosed after all those years of not knowing it has helped my family to understand to.  The closest to me are more positive and those that are so negative I keep away and I can also say NO to things I am not happy with.

We are all here for you and listen we can do and hopefully offer further advice.

Sending you big gentle warm hugs from ME to YOU.... xx

7

Hi everyone. Thank you so much for ur responses. I really appreciate you guys taking the time out to get back to me. So ...........THANK YOU!!!

I had a bad day yesterday and do get them here and there as im sure many of u do too.

I am normally so positive. Im struggling a bit with an insomnia phase. You know, the ones where you cant sleep but in the early morning you feel you can but the alarms go off . So its making me much more sensitive.

I am quite intuative but not always right i know that.

Are you guys the same? It'd be interesting to find out.

One of the people that got back to me asked me where i am in the world........so im in Poole, Dorset. England.

I try to come on here once a day if possible. Im a good listener too so im here for others too.

Ive seen specialist's at the dedicated M.E hospital and what i was told was that i have FMS but also have extreme CFS too.

I have another condition called angio oedema which in basic terms is my face eyes fingers tongue etc. they swell up into an anaphylaxis shock. Seen so many specialists but they can not find what triggers my alergic reactions. It has at times swollen my airway to the point i was rushed to hospital. It also makes me very very sick and at times ive not been able to keep anything down not even water. At that time i went down to 6 something stones. Horrible.

Does anyone else get this because i wonder if its part of FMS?

I'm here for anyone else too ok.

Thanks all of u guys again.

Love to you all

Zoe x

8

Here, here deb,

(sorry for my lateness in replying back to you.......been extremly busy!!!!

 

9

MMM seems that my I-Pad froze on me.......

yes totally agree.....with you I wouldn't be intimidated by those so called people NO WAY.

ZOE how are you? Hope you are well......

we are here luv if you want another chat........

you can also private message me if you want I will always reply...

take care everyone.....

10

Hi Zoe....

Just wanted to pop in and say 'Hi'..  and how you doing?

AND...also 'wow, ain't you a box of mystery chocolates'...haha  I say that in the most warmest sense...  We ALL are our own box of mystery chocolates or boiled candies'...   Meaning whilst we all have this Fibro thang,   we also have our unique Fibro markers, and additional health issues.   

I to along with the Fibro, have chronic Fatigue....yyyawwwwn!.. hummph....  it's 2.35..AM.. presently.   Yup, insomia to....  I tend to bounce from chronic fatigue fazes into being an insomniac... grrrr

I have never had your 'angio oedema' that I'm aware of.  However I have had my fingers swell, the area's round my eyes swell for days, and I'm just getting over another one of these bouts.  My upper lip used to swell when i was younger,  it rarely happens now.  They wondered if it was Soya bean sauce but nothing was ever tested.  In more recent times my ankles and feet blew up like ballons, for just over two months. I was going through the usual stiffness, chronic pain and fatigue for the whole duration to... very frustrating.

I recently got approval to have my wee penny stamp sized lawn mowed and spraying down by a property manager chap.  As it is all to much for me now.  I used to so enjoy doing my lawns, edges and keeping every trim and tidy..  hohummmm   

You have my sincere sympathy, and I hope you don't have to every have anymore of those terrible swelling bouts!!   You poor thing you.

Even medications can have that exact affect.  I just remembered a chap who has a hardening of the heart muscle, and of his meds that he'd been taking one was changed to a similar tablet from another manufacturer..   The same chemical in both tablets, but for some reason this branded tablet reacted badly.  He did also wind up in hospital with the exact swelling issues as you described! ...  It is a known side affect. Naturally he's not able to take it anymore now.

So that is smething else you could look at if your taking any med's of any description...

In your case it could be something that you are ingesting.  A build up in your system then it finally reacts out..   Which is what happened with my friends hubby.

Well I'm going to turn out the light now, fingers X'd to catch some zzzz's...  

Hope you have an improved week Zoe, and your days positive  

11

Good morning all.

Thank you for all your amazing messages and kindness.

I've not been on for a few days as my litlle girl Faith she is off school and not very well. Just a tummy bug. But still horrible to see little people ill.

Id like to explain and answer some of the lovely messages so if i just explain my journey in short.

Had this since as far back as i remember, like 4 or 5 yrs old.

As i said before diagnosed in 2003.One day i was coming home from work had the normal bath etc went to bed.

Next morning was shocking as i was in so much pain. I dreaded needing the toilet as it was incredibly hard moving. I was like an old woman, bent over with a curved back. I had never had pain that bad at all. Yes all the normal things, but not that. My whole life changed over night. Had to give up my job. Tried pain killers from Dr. It did nothing to help, nothing. After a few more attempts to deal with pain kilkers I decided i had to go deal with this naturally. Even though it was so incredibly painful. Whats the point in taking medicine that does nothing.

Went to chiropractor. After 2 sessions he had me up straight. Still painful but at least i could cross the road slowely and safely now. lol. Went for more sessions. Amazing results. I recommend.

There are 2 types of chiro. 1 is BCA and other is McTimoney chiro. I went to McT. Amazing. Increased my movement and reduced pain. And it came to me free. I know! No strings.

Anyway so at the start i dealt with fibro naturally.

With the swellings they began during my natural time.

It was the swellings that scared me enough to take a medicine. And so it was then that i began to try meds.

Quick question......how many of you guys were offered slow release medicine?

Hope that answers the questions.

Thank you everyone for your support. I will definately come on regularly. It is lovely to have people that get it.

My family have been useless. That might sound harsh but if i told you everything you would agree to get away from stress that comes along with abuse. Thats all im saying. So my whole journey has been without family. I have tried to get in contact but it always ends up with tge same crap......more abuse.

No wonder why i ended up with an abusive partner. Saying that it was a short relationship and as soon as i had my daughter i got the police involved. My child was not going to witness what i did from such a young age.

So hence, we now live miles away from ex and family.

So i am strong but i do have some down days here and there. To me thats normal.

There is a theory out there that there is alot of evidence that people with our type illnesses come from bad childhood experience.

I know its a horrible thing to talk about but it is worth looking into. So anyone else have bad childhoods???

My daughter is still absent from school so ill check back in 2 or 3 days.

Again......thanks everyone.

Love Zoe x

12

Hi Zoe...   I forgot to mention something in regards to your 'intuitiveness'...    'Yes' to that.  Since I can remember.  I could write a book on my various experiences.  I have even been asked to...hardcase aye!

Electrically charged so much so that the TV's or Radio's wouldn't work when I was within 3 metres or less. lol...  

I should have tried holding a light bulb!!  I daresay it would have lit up! hahaha..

Not quite as bad now.  I think age and fibro have taken it's toll.

After my MVA I wasn't able to intune with my 'normal self' for years.  However over the last 4- 5 years progress in leaps and bounds with my 'brain injury issues', and the 'intuitiveness' has re-emerged.  

I won't outline online what was involved in my experiences over previous years and now today, as it does get involved in detail in the  experiences.  Some folk do not accept that some folk live with this sort of thing, and that some folk also wish to develope it within themselves.  I tell folk not to get to involved with the 'seeking', if it's not evolved now, naturally, then it's not required to be.  Folk can fall into deep doo doo's trying to push themselves into 'intuitiveness' (a PC word for one aspect of what your politely referring to, I'm thinking)'

Feel free to personally message me...

The sun is shining here again today and its very very hot!!  Would like to share some of this wonderful day with everyone.  

(I'm inside in the shade, curtains half drawn as I cannot take the direct sunlight anymore on my skin or my eyes.  Thank goodness for wrap round sunglasses..!!!)