Rubbish day!

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Rubbish day!

Postby Fibro Fi » Fri May 03, 2013 7:53 pm

Hi All,
This is a whingey letter so be warned!

I woke up yesterday at 9 am totally exhausted. After walking the dog with my hubby I went back to sleep at 10.30 and woke up at 1pm. I then went back to sleep at 2.30pm until 6pm, and then to bed from 10.30 until 10am! This set back came totally out of the blue. No extra exercise was taken before and I have no idea why this 'flare up' happened. I thought I had been doing so well since my last Christmas flare up only to be reminded that I am ill and unlikely ever to return to normal existence! And here I thought I may return to nursing - ha!

Excuse my sarcasm, but I've just spent the last hour crying over a life I will never have again! It sucks, it really does! I know my husband loves me but he seems to find my limitations easier to bare that I! Apologies for my ramblings, but I would have made a very good nurse and now that dream is dead. Just as I had finally reached the maurity to cope with all the lack of staff etc., I now can't bloody physically do the job!

I've had nearly three years out of work as I'm living in a different country only to have a day like yesterday. I'm due to go back to the UK in 8 weeks and I'm terrified that I won't be able to cope with just ordinary home life let alone a job!
Well, that's my rant over!
Lots of love,
Fi.
Xxxx
Last edited by FluppyPuffy on Fri May 03, 2013 8:55 pm, edited 1 time in total.
Reason: Made paragraphs a bit clearer for easier reading.
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Re: Rubbish day!

Postby Sandii5 » Fri May 03, 2013 8:56 pm

Hi Fi,
I'm so sorry to hear you've had a bad day, I'm also a nurse and after starting with pains in my shoulder and hip and ongoing fatigue i've been off work since December now so for me its been a relatively new diagnosis and I don't think I would have been seen so quickly by Gps and Consultants if I hadn't been a nurse :-o . But like you I miss my job, i'm due to see occupational health and HR in 3 weeks but I have NO answers for them as every day the pain / tiredness is different from the next some goods days some bad, at my worst i've spent a week in my bedroom not talking to anyone and just crying. Coming to terms with a life that has been stolen from us it horrendous and most still don't know what is wrong with us so my family are constantly saying to go back to work when I get severe back ache just from picking up my little ones toys, god knows what i'd be like in moving patients :(
I hope you have a better day tomorrow and the move back to the UK goes well, thinking of you xx
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Re: Rubbish day!

Postby FluppyPuffy » Fri May 03, 2013 9:15 pm

Sorry you've had such a cruddy day Fi, sometimes these flares come from nowhere and floor us :( :( :( It's almost as if FM has to remind us occasionally that it is always there and lurking, even when it seems like things might be settling down a bit, or we think that we're finally getting to grips with living with this :swear1: :swear1: :swear1: :swear1: :swear1: condition :waiting: :waiting:

Most of us have spent time grieving for the life we have lost and the life that we might have had, so you're not alone :grouphug: :grouphug: :grouphug: Thankd to FM, I haven't been able to work since 2000, and was retired on medical grounds the year after, so all the plans I had hoped would come good were wiped out in one swift strike. We had hoped to have another child, I was looking into what I would need to do to formalise various skills that were either self taught or learnt thru in~work training, as well as starting to explore how I might be able to get into a career that had captivated me from being a child. But overnight, these things were ripped away from me, and as much as I do all I can to keep that little glimmer glowing that one day some of it might happen, in reality I know that it is highly unlikely to happen :cry: :cry: :cry: :cry: :cry: :cry: :cry:

Thinking and worrying about what things might be like when you return to the UK will probably be adding it's effects to things as well, so maybe focusing more on the now might be a more useful way to take things at the moment, altho I know you need to be mindful of the move as well, but keeping it towards the back of more immediate things might make things a little easier to manage for now.
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Re: Rubbish day!

Postby painprincess1 » Sat May 04, 2013 7:19 pm

awww hun dont be hard on yourself .we all here have them days where we morn the lose of the life we had or maybe could of had.u have to think a different way now darling. so u cant be a nurse but that dont mean u cant find something else to do,try to get throught the day your in my love and not worry about tomorrow , as they say tomorrow hasnt come yet get what u can from today even if its just a good old hug from hubbie xxxxx
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Re: Rubbish day!

Postby LouLou » Wed May 08, 2013 2:13 pm

Hi Fibro Fi

Whenever I have a flare or a day where all I do is sleep I always try to pinpoint what I did to cause it, so I can avoid it in the future. 80% of the time I can match it with something I did, the other 20% I refer to as my body playing silly :swear1: with me lol.

I too have had days where I've slept on and off just like you with no reason for it, so I just put it down to my body putting itself to rest because it needs it, and clearly you needed the sleep Fi.

FluppyPuffy wrote:Thinking and worrying about what things might be like when you return to the UK will probably be adding it's effects to things as well, so maybe focusing more on the now might be a more useful way to take things at the moment, altho I know you need to be mindful of the move as well, but keeping it towards the back of more immediate things might make things a little easier to manage for now.


I think Fluppy is spot on with that. Even though I am able to still work a few hours a week, I still take things day by day. I know it's hard as you had this dream job you wanted to do so I'm sending you some :hugs: I know how it feels to not be able to progress in your life the way that you want to. I had aspirations of developing myself, going on some courses etc but FM had other ideas. Now I just live for today and do what I can workwise without pushing my limits - hope that makes sense......afternoon fogginess lol.

painprincess1 wrote:u have to think a different way now darling. so u cant be a nurse but that dont mean u cant find something else to do,try to get throught the day your in my love and not worry about tomorrow , as they say tomorrow hasnt come yet get what u can from today even if its just a good old hug from hubbie xxxxx


Love what you said painprincess, sometimes only a hug from the other half can fix things lol.

Is there something else you could do part time Fi? Do you have any creative interests/hobbies that you can dedicate some more time to?

I have everything corssed that your move goes smoothly Fi. Take Care
xx
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Re: Rubbish day!

Postby Fibro Fi » Wed May 08, 2013 2:32 pm

Thank you everyone for your words of wisdom.
And Lou Lou, you almost made me cry. It felt like you were talking face to face with me.
I think once I am at home I will have more things to fill my time, even just the house chores! But that does mean less time on pondering on 'what might have been'. Only 8 weeks to go before I leave Saudi!
Went to see my rheumatologist today which went well. I am certainly sleeping a lot better with new medications. Usually I can pin point why I am zapped of energy, but last week it came out of the lie which I do find more depressing. But then, how much energy do we use just by thinking I wonder?
Again, thank you for all your kind words. It's nice to speak to people who understand.
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Re: Rubbish day!

Postby lolo73 » Wed May 08, 2013 8:38 pm

I too lost my career in nursing due to FMS. At the time I didn't know it was FMS, but I kept telling work I was really unwell, pain out of control, fatigue etc. I was fine about getting early retirement until the day I went for my last "hearing" and I was really upset then.
I don't dwell on it, I guess I had 20yrs in the NHS so more than a lot of people put in.

I miss the patient contact, but I fill my life with other things; I help at my children's school, listening to kids who are struggling to learn reading skills, helping them move forward. I also do fundraising and I support a friend who is in a bad place with family problems. I work at my own pace and try and allow my body time too. Of course none of this pays the bills, I am in somewhat a privileged position with a husband who is well paid, but we also have to cut our cloth better to allow for the big drop in income.

I am sure you will feel better once home in the UK and surrounded by family and friends x
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Re: Rubbish day!

Postby LouLou » Thu May 09, 2013 1:05 pm

Awww Fi, I'm glad I could help a bit. That's what I love about this forum as all the kind words and gentle hugs people send are so heartfelt it really does help when you feel you have no where else to turn.

I think you are right in that you will have more to do when you come back to the UK, just take your time and have a good think about all the things you wanted to do before but because of work you never had the time. You may just be suprised at what you come across lol.

Also, what Lolo does in regards to helping in a school sounds like a lovely way to help and spend some of your time.

I know that the down days appear every so often, I get them and I feel like I have hit rock bottom sometimes. I often have the "Why me" "What did I do to deserve this" moments and I think under the circumstances that's allowed. Just know we are all here (me too) to help pull you out of the black hole.

I'm glad you are sleeping better, I find the fatigue can be worse than the pain sometimes and it's so frustrating when all you want to do is sleep and can't, then when you want to stay awake and do things you can't stay awake lol. Flippin Fibro!

Take Care Fi
xx
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