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Author Topic: lonely, bored etc etc...  (Read 257 times)
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GreenJuice
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« on: June 10, 2018, 06:10:09 PM »

Hello,

I'm not sure if anyone is going to read this but i just wanted somewhere to vent my frustrations.

I have been living with ME for 14 months.  I thought I had accepted it but I know realise that I have really been in denial.  I was doing really well a few weeks ago & then had another crash a week ago & still not recovered to pre-crash level.

I don't have much energy to type everything that I want to, but I just want to say that I am so fed up and I am so lonely. I am 35 and have had to move home and live with my parents.  I know I'm lucky to have had this option but it has been a real life change for me as I haven't lived with them in 15 odd years. I also had to move back to my home country where I haven't lived in 15 years.  I come across a lot of people online who have ME but also who have partners & children who support them. I just feel I am watching all of my friends settling down with people and moving forward with their lives while I am still living with my parents.  I feel I have lost touch with a lot of my friends and I am so jealous of their lives & their health.
I haven't been able to work since I have become ill and I just feel I don't know who I even am anymore.
I find it hard speaking to people because, whilst most of my friends & family are compassionate, no-one truly gets it.  My parents expect me to put a good face on all the time, and sometimes I just cannot do this.  They say things to me like- 'surely being bored is a good sign', which makes me so angry because it just shows that they do not know what I am going through.  Like most people with ME I have had to give up everything that once gave me pleasure.
On the odd times when I am able to go out, because I have not lived in this city for a long time, I do not have people even to meet up with.
I realise that I am lucky to be able to go out & I realise there are a lot of people who cannot even do this, but my life is still severely restricted.  I have read so many books, watched all the TV I want (and am able to watch) I am really struggling to find something to keep me going. I am so lonely, bored & frustrated.

Thanks
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roger
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After 12 years of trying, I'm now A OK


« Reply #1 on: June 10, 2018, 06:44:19 PM »

Hi GreenJuice, and welcome to the forum.

It sucks, doesn't it. And its absolutely understandable that you're lonely, bored and frustrated. Pretty much everyone who joins or visits this forum will understand how you're feeling because they've been there.

I've been part of this forum for around ten years and I've seen many people who were where you are at the moment and have now got their lives back. I think that's what you'd benefit from dwelling on rather than how you're feeling now. To my mind, that's the first step to wellness - knowing that it doesn't have to be forever.

I got lumbered at around age 58 and all the doctor's, including the natural ones, said that 'at my age' I should think in terms of management rather than recovery. Well they were wrong. You're around twenty-three younger than I was at the start of 'my journey'. If I can do it, so can you. Please think about that. You CAN recover. You CAN get your life back.

Best wishes.

Roger.
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'Nothing is, but thinking makes it so'
GreenJuice
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« Reply #2 on: June 23, 2018, 07:48:21 PM »

Thanks so much for your message, it makes me so hopeful that you have recovered.  That's amazing that you are still involved in the community, good on you!

I know I'm getting better but the progress is so slow that it makes me doubt the progress.

Thanks again Smiley
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roger
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« Reply #3 on: June 24, 2018, 05:21:24 AM »

When we're recovering slowly we often don't notice the improvements because they can be quite subtle, so there's a tendency to think nothing's happening, and that can be disheartening. For that reason it's not a bad idea to keep a daily diary, each day noting any improvement. After a month or so, if you compare 'now' to when you started the diary, you might be pleasantly surprised by how far you've come without noticing.

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chill
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« Reply #4 on: June 24, 2018, 10:46:28 AM »

Hi Greenjuice

i am sorry you are having such a rouch time at the moment and i just wanted to let you know you are not alone.  I can certainly empathise with the no one "really getting it" thing.  My Husband does and is very understanding but the rest of my family really dont, they try to but just dont.  I think i have just come to accept that they dont and that is the way it is, its not out of lack of love or compassion, it is really a very hard thing to understand, all you can do is explain the best you can, show them literature and research on the topic and hope it helps.

It must me hard having to move back in with your parents, and just because you are lucky to have that option does not mean you are wrong to feel as you do, so be kind to yourself.

I hope you find some support here, i only joined recently and have been made very welcome.  I come on when i can, i sometimes dont have the energy to think or type let alone do both in unison!

Take care
chill
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GreenJuice
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« Reply #5 on: July 10, 2018, 07:11:03 PM »

Thanks for replying Chill.  It means a lot hearing from other sufferers, kind of makes it easier knowing that other people are also going through this, although at the same time I wouldn't wish this illness on anyone !   

All the best x
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chill
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« Reply #6 on: July 12, 2018, 07:15:33 AM »

You are welcome greenjuice, and thanks for replying to me!  It does help knowing there are people who understand.  I am really struggling atm but i come on here as often as i can x

chill
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TJ
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« Reply #7 on: July 12, 2018, 07:35:34 PM »

Hi GreenJuice,

Your story mirrors mine in so many ways.  I am 5 years in now and went through NHS treatment but it didn't help much.  Exercise wise, I struggle to find a baseline on which to build on and suffer with constant flare ups.  I am now a part-time wheelchair user.

One thing I did take from my therapist was to find something I enjoy that doesn't use up a lot of energy.  I was musically gifted as a child (clarinet) but gave it up in my teens.  I decided a few months ago to get a synthesiser and I am now learning to play the piano.  I can't manage more than 30 minutes and some days when I am unwell I can't use it.  It has taken the boredom away, lifted my spirits and I get to exercise my arms  as well.

Do you have any interests that don't use a lot of energy?

TJ


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