Still learning.......

All your fibromyalgia experiences, questions and answers.

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Still learning.......

Postby kazisedso » Sat Aug 09, 2014 8:18 pm

Hi all,
Hope everyone is as well as they can be.

Bit of a Moan alert!!!

Was invited to a wedding, from 3pm till 12.
The wedding was today and I rested as much as I could today so that I could stay as long as possible.

The bride is a dear friend of my daughters, and wanted me to be there, I did explain to her very early on that I would do my very best to be there and stay as long as I could, and she was lovely about it, very understanding.

I watched the ceremony and attended the first part of the reception, it has been a lovely, lovely day and I thoroughly enjoyed it.
But, by the time we had to leave the reception room so they could set up for the night time, I had, had enough. :(

I could not get comfy in the chairs, sitting and standing alternatively did nothing, I was soooo hot, and sweating like nobody's business. Just couldn't cool down & the aches and pains were taking over my thoughts.

So I slipped away quietly without making a fuss, and now I am at home, in agony but chuffed that at least I attended the ceremony.

My son who is 12 is going to play his guitar and sing a song to the bride and I shall miss that, but, iv asked my eldest daughter to record him for me.

Gone are the days when I would have stayed till the end and that does sadden me as I'm only 44 and should have a bit more stamina than I have.... But at the same time, I feel ok with it..... Does that mean I am finally accepting this illness? I would like to think so.

I don't know about anyone else, but, to be honest I think I would have gone into sensory overload later on in the night..... The loud music, the disco lights, the talking too loudly to be heard and the amount of people there too ( 100/200 guests)!!

I do sound like a Moaning old croanie!
But I did for-warn that I would have to go when I was ready and people have readily accepted that.

Has anyone else had problems with social events etc?
It is awful having to be a party pooper, but I think being upfront and explaining that you may have to leave does help.

Maybe I am starting to 'learn'to live with this condition? At one time I would have felt soooo guilty and I would have tried to stay and be in absolute agony for the rest of the week and tired and fatigue just wouldn't cover it!!

Now though, I don't want to be in agony and completely fatigued so I let folks know that I go when I feel I need to and you know what... They are fine with that.

Thanks everyone for letting me vent a wee bit.
Had a lovely day and I am now trying to relax with a cup of tea, some paracetamol and tramadol to ease up the pain.

Karen
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Re: Still learning.......

Postby rich44 » Sat Aug 09, 2014 8:21 pm

Yes I struggle terribly with loud noise and multiple voices, find it incredibly hard to filter the background noise out. I drove a few hundred miles to an old friends house and then to Greenwich to a school reunion from 27 years ago and I found it hard, really hard and it hurt on the way, whilst there and lots now but by God it was worth it, I haven't laughed like that in years.

I'm glad you got to enjoy the amount you did, well done

Oh I'm 38 going on 88 lol
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Re: Still learning.......

Postby Zia2014 » Sat Aug 09, 2014 8:35 pm

I think you do sound like you recognised what the issues might be, addressed them, and left before it wiped you out. I don't think I could cope with that amount of people even before my illness! I still push myself to do stuff and am learning how far I can go. I'm glad you had a good day :)
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Re: Still learning.......

Postby Paisleyjane » Sat Aug 09, 2014 8:58 pm

Hi, glad you had a lovely day. Worth it isn't it, I agree if you had overdone it may have spoilt it a bit. My niece married last year and I stayed in hotel, was lovely to join in, even when you need an early bed. The sitting around in uncomfortable chairs is dire though.Has taken me a couple years to learn how to pace myself, there comes a time when you finally recognise you are ill not schirking and do what suits you. If other people feel it's selfish they don't understand the level of incapacity fibro causes. Onward and upward, we may not get back to 100% but managing more and joining in with the rest of mankind is OK. :-)
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Re: Still learning.......

Postby Amybeth2 » Sat Aug 09, 2014 9:20 pm

Kazisedso....i am with you every step of the way...I can so relate to your post, right to the very last letter. It is so good to see that it is not just me!
I am still learning, but very frustrated as my G.P. (who is excellent) had a chat with me (after visiting him many times with different symptoms) about the possibility of having Fybro. I took the info he printed off for me home and I couldn't believe how it all fitted with me! He sent me to see a Physio who refused to touch me for fear of making things worse.
She referred me back to my G.P. with the suggestion that I receive hydrotherapy and to see a Rhematologist as they know how to treat people with Fybro. I waited months to see him- he said it was not Fybro, but the result of using my muscles wrong, since my body suffered trauma after a road traffic accident 20 years ago. He said it is reversible, I just have to work hard at exercises. He gave me two simple ones to do, but 5 days later I was back on the phone to my G.P. as I was in absolute agony. He said that hydrotherapy would not work for me as he sends people to 'walk in water' for the back and hip pain- but I have a prosthetic leg so that was not an option. To top it all, my G.P. then said on the telephone conversation that he agrees with the Rheumatologist! I don't know whether i'm coming or going!!
It is hard to accept and give in to it, but there simply is NO choice...I just wish everyone was understanding and would educate themselves about it. I too am only 44 and I feel like my life is over now :(
Look after yourself. x
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Re: Still learning.......

Postby Yands » Sat Aug 09, 2014 9:34 pm

As much as this is a frustrating way of life, it is wonderfully comforting to know I'm not alone in feeling like this. Thank you for sharing all of your experiences - I can relate!

I had a healthy social life until I was diagnosed with Fibromyalgia 6 years ago, aged 28. Very few of my twenty-something friends understood or believed me to be in so much pain that I couldn't socialise! So I can completely empathise with how you feel.

After much hard work (on myself), I'm finally letting the unhelpful comments/opinions of friends and family bounce off me where possible. Unfortunately, my family refuse me support because they a) don't believe Fibromyalgia exists (a common issue) and b) they are embarrassed of my situation and my worsening health. It helps keeps me strong when I count my blessings, one of those being a few incredible friends I'm fortunate to have in my life. They make me feel like the former 'fully-functioning me' and keep me focused on doing my best, despite how increasingly debilitating the condition has become. Unfortunately, people at large, still refuse to educate themselves on the reality of Fibromyalgia.

It's liberating to reach a stage where you can comfortably voice your limits rather than, like you in the past, saying yes to please others and pay enormously for social commitments for the rest of the week.

It's all part of coming to terms with and accepting it for it is and knowing you can still live your life, just a different one. :-)
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Re: Still learning.......

Postby carolad » Sat Aug 09, 2014 10:27 pm

Yep, can relate completely to this! It can be very hard when you miss out on things and it is easy to fall into the trap of feeling sorry for yourself and thinking back to how things used to be....that will only make you unhappy though :( If you can concentrate on what you can do, rather than what you can't, it makes it easier to deal with.

So I think you have a really good attitude and did exactly the right thing. You went to the wedding, so you got to take part in a joyous event...but you didn't stay on when you had had enough. And I think that's what we have to do...still take part in things, but in a modified way to make it easier to cope with :)

For years, I just stopped doing things altogether....now I'm trying to pick my life up again, while trying not to overdo things...it is a hard balance to strike sometimes!

One thing I really hate when I do go to an occasional social event, is that friends always try and make me stay longer...'you aren't leaving yet are you?' I hate that because when I have had enough, I just need to go...and I get quite stressed if I can't leave when I want to. To be honest, that sometimes puts me off going out in the first place - because I don't want to draw attention to myself by leaving after an hour. So I think your idea of forewarning people and saying you will be leaving early is a really good one :)

Hope you can rest and recover form your day....and you will have some lovely memories of the wedding :)
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Re: Still learning.......

Postby carolad » Sat Aug 09, 2014 10:38 pm

Amybeth2 wrote:Kazisedso....i am with you every step of the way...I can so relate to your post, right to the very last letter. It is so good to see that it is not just me!
I am still learning, but very frustrated as my G.P. (who is excellent) had a chat with me (after visiting him many times with different symptoms) about the possibility of having Fybro. I took the info he printed off for me home and I couldn't believe how it all fitted with me! He sent me to see a Physio who refused to touch me for fear of making things worse.
She referred me back to my G.P. with the suggestion that I receive hydrotherapy and to see a Rhematologist as they know how to treat people with Fybro. I waited months to see him- he said it was not Fybro, but the result of using my muscles wrong, since my body suffered trauma after a road traffic accident 20 years ago. He said it is reversible, I just have to work hard at exercises. He gave me two simple ones to do, but 5 days later I was back on the phone to my G.P. as I was in absolute agony. He said that hydrotherapy would not work for me as he sends people to 'walk in water' for the back and hip pain- but I have a prosthetic leg so that was not an option. To top it all, my G.P. then said on the telephone conversation that he agrees with the Rheumatologist! I don't know whether i'm coming or going!!
It is hard to accept and give in to it, but there simply is NO choice...I just wish everyone was understanding and would educate themselves about it. I too am only 44 and I feel like my life is over now :(
Look after yourself. x


You have really been given the runaround :( It is SO frustrating, getting different diagnoses and not really knowing what is the cause of your problems. I have been diagnosed with fibromyalgia but also have scoliosis so I don't know if my pain is caused by one of these conditions or both of them...or indeed if I really have fibro at all! It used to really frustrate me because I like to know what I'm dealing with. But more recently, I've accepted that I will never really know what is causing my pain and fatigue...but actually it doesn't matter. This is the way I am so what I have to do now is find ways to make life easier for myself eg improved diet, gentle exercise, more rest, physio, massage, heat pad etc etc...

So don't get too hung up on the diagnosis. Whatever the cause, the pain you are suffering is real. But if you can learn to live with it and make modifications, you will get a life back again. Please don't feel like your life is over (I do understand though, I've been there myself!). You will reach a level of acceptance in time and then you can get on with your life :) x
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Re: Still learning.......

Postby dotty lotty » Sun Aug 10, 2014 5:02 am

Well done Kazisedso. You took control of the situation. You attended the wedding, explained you might have to leave early and enjoyed the part you were there for. :welldone: :welldone: :clap: :clap:
Hope you had a good sleep and are not tooooo sore today. :teddy-bear:
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Re: Still learning.......

Postby MrsP77 » Sun Aug 10, 2014 11:28 am

Good on you for managing the situation. It is sooooo frustrating that you can't do everything that you used to, that's something I am still struggling with. I was interested in your part about sweating, as this happens to me so much, and I find it really embarasing. I literaly have sweat pouring down my face. I try and laugh it off, but the looks on some peoples faces! :oops: :yikes:
I can also - :evil: arrgh, brain fade :evil: - can't remember the word I want to use, another big annoyance. Got it - relate to the noise thing. You just feel as though you are going to burst with all the different sounds.
All in all this is one big - excuse language - pisser of an illness to have to deal with. Keep going the way you are and you will manage it well.
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