Fibro - life sentence

[Lou38]

Okay so today is not a good day as the title suggests :sad:

I’m feeling really down & a bit defeated. I was at a physio class yesterday to try & build up the muscles in my legs & help with the osteoarthritis, only thing is my fibro body is not really on board! I got a turbo trainer for my bike so that I can use it indoors to try & build up a wee bit of fitness before I venture back outside on it but I’m too sore to use it after physio. I only work part time but every day I’m dragging myself back home knackered & sore. My hours were recently cut at work & it’s having a huge impact financially. Really I need to work more hours not less just to get by but at the moment I feel like my working days are seriously numbered.

Fibro feels more like a life sentence just now and I’m struggling to stay positive like I normally do.

Apologies for the moan, I just needed to vent to hopefully make me feel a bit better.

 

[Kristi]

I'm so sorry u r feeling down, but I completely understand. I work fulltime and most mornings I wrestle with my fatigued and aching body just to try to get out of bed. Staying positive while battling these conditions (I also have osteoarthritis) is a constant struggle in and of itself, that is one of the reasons I joined this forum today.
I hope ur spirits r soon lifted. Know that u r not alone.

 

[diamond]

Hi Lou..sorry you are feeling defeated....i totally understand...as you know i have ended up house bound.

maybe do one or the other...so physio and focus on that way of rebuilding muscle and not push to cycle too.

Hopefully once the physio has done some good you may be able to get back to cycling. When i was more able i found walking was the best but most suitable way for my fibro body to stay fit.

Maybe try walking rather than cycling. I know its horrible not doing the things we love and so badly want to do....you will get there....just give yourself time.

I know you had that horrible experience at work last year....i hope you can keep going work wise ...be kind to yourself.

BIG gentle hugs xxx

 

[Lou38]

Thanks for your replies. Today I just feel a bit silly for being a drama queen & feeling sorry for myself! I know for my own health & emotional well-being I need to find another job anyway. That place has just ground me down to my lowest ever leaving me with no confidence even though deep down I know I’m more than capable & I’m too good for them. I owe it to myself to make some positive changes this year, especially as far as work is concerned. I just need to pluck up the courage to do it.

As far as physio goes, you’re right diamond, I need to concentrate on just one thing at a time. My physio classes only run for another 4 or 5 weeks & then I can concentrate on trying to get back on my bike. I go out walking 5 or 6 mornings a week just now. We got a dog a couple of months ago & he needs loads of exercise. It’s the best thing we ever did, I get so much pleasure from walking him & he always manages to lift my mood. I walk 30-60 minutes most days & it can be really tough but I’m grateful to still be able to do that. I know a lot of you on the forum would give everything to be able to do even half of that.

Thanks again, this forum has been a godsend some days & someone always manages to make me smile �� even on the worst days.

 

[vickythecat]

Today I just feel a bit silly for being a drama queen & feeling sorry for myself!

NEVER feel silly, guilty, weak, or like a drama queen for venting. Like you said, living with fibro is a life sentence. It is there all the time. Healthy people and doctors so often forget this fact. Even on a good day, when everything is working well, it can all turn around in 10 minutes and you are left in excruciating pain and fatigue. And waking up to that reality every day....

Lately I especially have trouble with the invisible side of fibro;

In my teens, pre-fibro days, I had a broken ankle, a finger and a blue eye (fell on my face doing sports) - people opened doors for me, they gave up their seat for me, they looked at me in sympathy, strangers asked how they could help me. And guess what? I was in no pain whatsoever. Not in any discomfort either. I was young, I walked, and did everything like nothing could stop me. Now I feel 1000 X more pain every day, 24/7, yet even doctors do not listen and refuse to understand or help....

 

[diamond]

Exactly the same for me vicky...i broke my foot twice in 18 months in the 2 years before fibro hit.....it barely hurt at all..obviously i was in plaster up to my knee and got around on crutches or even hopped around on one leg because yes it would have hurt a lot if id tried to stand or walk on it.

I carried on doing all my housework on one leg and used my bottom or on my knees to take laundry upstairs to hang up on the clothes airer... all standing on one leg and probably didn't rest up like i should i have but my whole body was healthy so it was just one isolated area that was injured for a limited time before recovering.

My foot was totally black and very very swollen all over but aside from 8 weeks of inconvenience it was really nothing...and like you vicky everyone was sympathetic because it was obvious....the second time i even had some one in a shop come up to me and ask how id hurt myself.

My fibro is 1000 times worse and its invisible,

Even now if my partner cant get me on the phone all day has resorted occasionally to saying he is worried maybe i have fallen over again and hurt my foot.

I know that sounds very sweet and it is....but we have had terrible relationship problems because of my fibro pain and limitations yet something tangible that makes sense to him causes him concern....when its my whole body hurts worse than my broken foot or as bad as if i stood on it by mistake every day for a decade.

So no Lou never feel weak or a drama queen ....this illness at whatever degree is such a challenge mentally and physically.

 

[Alex]

.

My fibro is 1000 times worse and its invisible,

Even now if my partner cant get me on the phone all day has resorted occasionally to saying he is worried maybe i have fallen over again and hurt my foot.

I know that sounds very sweet and it is....but we have had terrible relationship problems because of my fibro pain and limitations yet something tangible that makes sense to him causes him concern....when its my whole body hurts worse than my broken foot or as bad as if i stood on it by mistake every day for a decade.

So no Lou never feel weak or a drama queen ....this illness at whatever degree is such a challenge mentally and physically.

I do think it affects every aspect of our lives, up to and including relationships. And especially relationships with those who are closest to us! Ugh!

Siblings who ignore the fact that you have it, parents who don't understand. even significant others who are the very BEST are still not understanding or getting it. Mine has to be reminded, which I do by saying " I read thus-and-so on the fibro board." Haha.

Yes Lou you are tough or you couldn't face this beast. You are not weak. Fibro is not for the faint of heart!

 

[rhionna]

I just want to say -- You are NOT weak at all for struggling with pain! My goodness, you're so much stronger than you realize. Everything suffers when you suffer, I think we can all definitely relate to that. The housework doesn't get done, the cooking doesn't get done, we don't get to interact with our partners as much as we would like to. When someone has an outward illness or injury, and people can SEE how hard it is, there is a different mindset than those of us with chronic pain. You're not alone in this. We're all together and hopefully we can find true relief in the future. I think venting to others who understand your pain is one of the bravest things someone can do. x

 

[sunkacola]

Not only it is invisible much of the time but it doesn't make any sense, either.
Just for the heck of it, the other day I decided to write down in detail exactly what the various pains in my body felt like to me on the previous day when I had had a very bad flare-up day.

I realized while writing it that it didn't sound even remotely real. Definitely like something a person would make up. Especially since there is no obvious or even discernible physical cause for it.

I decided to keep writing the descriptions down though, anyway. Even though no one would believe it.
Heck, *I* wouldn't believe it if someone told me something like that, myself, unless I knew that person really well and knew that I could trust them not to be simply trying to be dramatic or get attention.

But also, it did make me think that perhaps the folks who say it is a neurological disorder are correct, because neurological disorders can do the most weird things of all.

 

[Lou38]

Thank you so much for all of your replies, I really appreciate it.

I’m only just getting round to replying as I was just discharged from hospital on a Thursday. As if fibro wasn’t enough to contend with, I was hospitalised with a bad case of flu which exacerbated my asthma and I spent almost a week in hospital. Just another kick in the teeth as I can’t mobilise very much due to my breathing. I’ve been signed off work until the end of next week and it’s given me the chance to catch up on the forum and other things that I never usually get time for. I lost 12lbs last week too so every cloud lol.

Hope everyone is well.

 

[diamond]

gosh Lou this flu is really bad this year...so sorry you had that on top....you rest up as much as possible...lots of fluids and good nutrition.

Not the best way to loose 12lbs but lol i can see the positives