Everything sucks!

All your fibromyalgia experiences, questions and answers.

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Everything sucks!

Postby SusanS » Mon Apr 22, 2013 8:06 pm

Hi there

I need to apologise before ranting as really, we should be using this forum to build each other up, give support, soft hugs etc. However today, I just want to find a warm, dark place to fall asleep and stay there for a long time!

I try to be positive about things because:
- I have a child who I am responsible for; this isn't her fault afterall
- I have an elderly parent who I need to be there for; not as a carer in any way, but there
- I have a job which I need to maintain my & my daughters life / wellbeing
- I have friends who don't understand what I'm going through and therefore I try to shelter them from my 'drama'
- I have siblings who depend on me to be the strong one; the sensible one who can and does put their world to rights
- I have my pride - notice, this is the only selfish thing listed here

So, every time someone calls me a 'dufus' or 'thick' or 'retartd' or any other derogatory term, I laugh it off; laugh along with them, add to the banter, call myself names. Behind the laughter is pain, misery, tears. I hate it. I hate how I feel, all day every day. I hate it that no one understands, no matter how hard they try. I hate being unable to articulate how I'm feeling to anyone. I hate it that people get frustrated by me and my issues. I hate that I'm not me anymore.

But, the light at the end of the tunnel is that I'm still here. And so are each of you who are fighting the same fight, day in day out. It's a hard battle and one which we will never win outright but if we don't try, we will never know what amazing things we can achieve.

Keep on keeping on

Sooze xx
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Re: Everything sucks!

Postby lolo73 » Mon Apr 22, 2013 8:29 pm

Who on earth calls you thick or dumb? I am sorry but they are no friend of yours, that is so hurtful and derogatory I am pretty mad :evil: on your behalf. People who love you or care about you should be supporting you not calling you names, please put them right. I would say I am not "thick" I am an intelligent person who happens to have an illness that makes me a bit forgetful from time to time. I understand about always having to be the strong one and not wanting people to think any less of you but we are all human and we all need a bit of compassion and TLC at times, chin up (well if it doesn't hurt too much to do so!) xx
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Re: Everything sucks!

Postby sheila300 » Mon Apr 22, 2013 8:38 pm

I agree with lolo73. Don't let people put you down hun. I know exactly how you feel and sometimes I can cope with the pain, etc, but my depression is really bringing me down.

Sending hugs to all who use this forum :d
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Re: Everything sucks!

Postby cocobella » Tue Apr 23, 2013 10:08 am

Hi Susan,

First of all, (what lolo said) who on earth calls you thick/dumb?? If any of your 'friends' are calling you that then they are not friends!! I know exactly what you are going through and I know the pressure you are under to perform the way you used to. Unfortunately you have to accept that you have an illness that pretty much is incurable, however it can be managed (apparently lol).

I think you need to sit down and write all this out in a diary/mind map. The things that are important to you and the things that are less important to you i.e. friends who seem to not understand your illness. I feel as though I have lost a few friends since being diagnosed, usually due to their insensitive attitude - and yes maybe I should grow a thicker skin - but NO I am me and I shouldn't have to change for anyone. If I had cancer, diabetes, lupus - they would have to accept that just the same. I find that these so called 'friends' are insensitive and dmismissive because there is no evidence that fibromyalgia 'kills' you. However, it can mentally kill you and make you become a prisoner in your own body sometimes as you literally have no control over pain or energy and just have to let your body dictate to you.

One thing I will say and I know it is easier said than done is - try to stop worrying. Focus on the people who are important to you like your daughter, your parent, your siblings. The rest -- let them walk!!!! If they are true friends then they will be there for you at times in need. I think a lot of people don't understand fibromyalgia and because it takes so long for most of us to be diagnosed, we have ranted, complained and moaned for so long that when we get the diagnosis - for them it is just like 'oh right so you have fibromyalgia'. Whereas for us it is like 'FINALLY I have been diagnosed'. Sometimes actually confronting these people is a good idea - you could even write them an email to say 'I feel like you haven't been there when I have needed you, what is your reason for this'. I did this and my friend didn't realise how selfish/insensitive/narrowminded she was being and completely changed her attitude towards me and became supportive. Some people just don't get it!!!! lol.

I also get what you mean about how you feel you are not 'you' anymore. I literally cry when I think back to when I was 21 - 23 I was so happy and never had any illness. I am now 26!! and feel my life has just spiralled out of control thanks to this illness. However I am slowly starting to regain my life back and getting it on track again. It can be really difficult though. So I know exactly what you are going through.

Anyway hopefully everything I have said makes sense. It is early morning for me 10am lol so I am still a bit fuzzy xx

-Coco
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Re: Everything sucks!

Postby LouLou » Tue Apr 23, 2013 10:31 am

Hi Susan

No need to apologise, we all need to get things out there sometimes. I too agree with the others, no real friend of yours should be calling you names like that, it's unfair and plain nasty. You are none of those things Susan, infact even though I don't know you, but from what you posted it sounds like you have a lot going on and are doing a great job of holding things together.

cocobella wrote:One thing I will say and I know it is easier said than done is - try to stop worrying. Focus on the people who are important to you like your daughter, your parent, your siblings. The rest -- let them walk!!!! If they are true friends then they will be there for you at times in need.


I also second what cocobella put and I too know it's much easier said than done but from experience I know that those who do genuinely care for you will try to be there for you even in the smallest of ways, try to support you and not bring you down. FM kind of forces us to be abit more selfish in that we are always having to consider whether doing something/going somewhere will make our pain worse or not. It's a very hard lesson that I am still learning and I've had to say no to a number of things purely because it would have caused me more pain by going.

Sorry I can't be of more help on this one but I think the others have posted some good tips on here. We all have the same fight to fight with FM and just knowing there are others out there who know how you feel really does help.

Take Care Susan

xx
What doesn't kill you will only make you stronger ;-)
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Re: Everything sucks!

Postby SusanS » Tue Apr 23, 2013 3:06 pm

Hi there; thank you all for your feedback. I was just ranting yesterday because I felt particularly low but it is comforting to know that I have a platform to do that. I really appreciate your support.

I don't think that the name calling is said with any malice at all. Those who have known pre FM are aware of my jovial nature and probably think making a joke of things isn't a problem. I don't help matters by internalising how the jokes actually makes me feel, disguising it by laughing along with them. I've always struggled to be open and honest about how I really feel; physically and emotionally. It's weird how easy it is for me to do just that on this forum and how people who don't even know me can offer such great support. I really appreciate it.

Keeping a diary is a great idea and one I have invoked several times over the years but thanks to the fog, I sometimes forget to fill it in for days at a time. Or I'm too tired :sleep: I know that my mental state has deteriorated massively over the last 6 months or so and I can feel myself slipping into depression; I can see the signs and it's scary. So keeping a diary would help me to track my feelings and pinpoint any triggers so I can manage myself better.

Thank you all again; you're like family x
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Re: Everything sucks!

Postby sweetie pie » Tue Apr 23, 2013 6:33 pm

Its easy because we All suffer from fibro, so this is the Only place you can get total understanding, so thank goodness for this forum, I have only started going on the lap top about 2months ago, my daughter & son showed me what to do, so while I was on my daughters laptop I came across this forum, you just cant believe how I felt. But you can, as all the laddies have this feeling also, its the support feeling as we get & understanding here,& with that it helps us All so much, it did me, as I was in a bad place with it all, but being on this forum now has helped that go away, so now I have my own lap top which I got the other day as a gift,having this fibro is a total nightmare for us All, so we need support & understanding Big time, so we have that here on this Great forum, best wishes XX
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