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How? Where to turn.....

PostPosted: Tue Jul 14, 2015 11:16 am
by MissMouse
Hello everyone
Recently diagnosed after a fair few years of telling the doc something wasn't right. It felt like a weight gas been lifted in one way as now I know why I feel so rubbish all the time. At least mow I can try get to grips with the fybro monster that lurks within!!!

I am at the moment on sick leave. Life is far from fun. I get up, take my pills, feel rubbish and end up back in bed and sleep.....and sleep. I can probably sleep for about 12 - 14 hours a day and still feel rubbish. I have just been given a written warning due to my sickness from work. Ok i do understand they have a business to run but some days i just can't get out of bed let alone go to work. So now a back to work plan us being drawn up with a phased back plan. Hope it works and my body allows me to do it.

So now what I keep asking myself. What do I do and where do I go from here?

I seem to have an endless list of hospital visits lined up: rheumatologist, endocrinologist, etc. my blood has decided to have far too much calcium in and no where near enough vitamin D. My parathyroid gland has gone wrong too! I do already have arthritis in knees but now with the fybro I need to see rheumatologist. I hate going to the hospital and just not being poorly. This is stressing me big time!!!

I don't get out really as I cant really drive due to pains. I have forgotten what the outside world looks like. I have a very supportive family and group of friends thankfully quality of life is total crap!

Just how do you all cope????

Thanks for listening to me! :-) I could go on with all my aches and pains, and trust me, there are plenty, but I think you all know where I'm coming from eh :-))

Re: How? Where to turn.....

PostPosted: Tue Jul 14, 2015 11:36 am
by jargirls
I can't really help. I'm recently diagnosed too. Ive just started a phased return 3 hours a day, its hell but I'm doing it. Going back to the go tomorrow for stronger pain relief. I work in a busy reception class with 31 children so not even a chance to sit down. I'm also a single mum to 3 children so no relief at home either.

I'm 38 and mine started with a heart attack in march, been in and out of hospital since and now left with this.
Hope someone can help soon

Re: How? Where to turn.....

PostPosted: Tue Jul 14, 2015 2:02 pm
by divingforPearls

sorry to hear about your diagnosis but it's good that you've found this site - just knowing there's other going through more or less similar stuff makes me feel less alone, it's not just me. I find it useful to read others' posts as it's a reminder that fibro is just so debilitating often, and we do well to just cope with the bloomin' fibro let alone anything else. Constant pain really takes it out of you, to cope with that, and the frustration, is doing incredibly well. I've had this for 17 years. I can't walk for more than 5 mins, can't stand still for more than a minute, can't drive for more than 20 min (on a 'good ' day!), hands in agony right now, I can only work very part time. What gets me through is knowing that there is a reason I've got this; trauma after trauma after bad decision after grief in my childhood and early 20's, and I see a therapist about once a month. I can 'vent' in her office. That helps. What also gets me through is knowing that it comes in flares and remissions, where the pain is not so all consuming; 'I've been here before and got through it'...I've had times where I can barely hold a fork, but then few weeks later I can play the piano again (don't overdo it though!!!!) I've had times where I've often had to bum shuffle to the toilet as I can't even stand up let alone walk, but then since then I have walked again without pain! I danced all night at my wedding 2 years ago, and didn't have pain the next day! - I remember that and know that it is possible. 'Honeymoon effect' is a thing...weird... Floradix iron supplement saves me from the worst of the fatigue. I think the other supplements help as well. I use homoeopathy and flower essences to cope with the emotional side of things especially despair. sometimes I just need to write off a day without feeling bad about it. I know I need more rest and sleep than others, so I do that if I can. I have to know my limits, I have to ask for help, I have to say what I need, I have to learn to NOT OVERDO THNGS! In the last few years, the understanding of fibro has developed; more is found out about it every year, I tell people what I have now, in the hope that they will then understand a bit more. It would seem that those of us with fibro have had a lot of stress / toxins / who knows what - to deal with, which has led to this point. I watch things like '24' and say "that much stress and she's gonna end up with fibromyalgia..."but of course it's only a TV programme so she's always fine in the end! Whatever led you to this point, take the time to process it. And on those dark days we need to remember - there will be good days again too! Patience is hard though I know! ( I hate it and this pain sucks, blessings on my husband.)

Re: How? Where to turn.....

PostPosted: Tue Jul 14, 2015 6:27 pm
by MissMouse
Jargirls, i teach so know where you are coming from! Working in a school us hard wirk without this too eh. I wish you well with your return to work.

Divingforpearls you have such a fab outlook on it all. I think you look at it so well that I must try to adopt that attitude too. I will look down the alternative route too.

I've had a lifetime of stress and trauma. I can only imagine this is the outcome??? Who knows! All that matters is that I need to try to get on with my new way of life. Can't say I like it but hey ho!!!

Re: How? Where to turn.....

PostPosted: Tue Jul 14, 2015 8:03 pm
by UnderSiege

At the moment I don't cope.
My life has been a slow motion car crash for the last few months. I haven't even started to deal with one issue when another one or three show up... and I've been driven so far back against the wall that there's no room to roll with the blows anymore. I now grind my teeth all the time.
I hope things really change for the better soon.

Re: How? Where to turn.....

PostPosted: Wed Jul 15, 2015 12:31 pm
by MissMouse
Bless you, I can totally understand where you're coming from!

I hope things improve for you too :-)

Re: How? Where to turn.....

PostPosted: Wed Jul 15, 2015 3:16 pm
by GaryFx
It's hard but at least you have a diagnosis now and you don't feel like your going mad, and try and stay positive the diagnosis could have been something far worse, ok it is going to be tough but it's not going to kill you. I have suffered with Fibro and CFS for fifteen years now and yes it can get you very low and can be very tough but there are things you can do to help your self, have a honest look at your life style and see if you can make some alterations with in that, there may come a time when you really need to consider giving up work and it's a real scary thought, but I can talk from experience and that one thing has made the biggest difference. I really struggled at work for about ten years but eventually this year it got to much and I gave work up and it's made a huge difference in how I feel. What this allows you to do is to accept what you have and not always fight it, for instance if I'm really tied and exhausted then go to bed and rest , if you can't sleep then except it and get up and do something, I've been shopping at three in the morning but at least there are no cues. If you can adopt this attitude it makes things far more less stressful and stress is your worst enemy for making you feel like crap, I guess what I have done and am trying to say is learn to live with it and accept it and if you can do that it will really help.

Re: How? Where to turn.....

PostPosted: Wed Jul 15, 2015 5:05 pm
by MissMouse
Such a positive post Garyfx!!
You sound like you've really sorted it out in your mind and just kinda get on with it. That is just how i know I must be too. At the moment it's not so easy for me.....but, it will be!!

I feel pretty sure my working days are coming to an end but, I just have to keep on trying until I can try no more. I've been trying for the last how many years and I can't give in just yet.

Keep on "keeping on" and staying on top of it :-)