Getting fed up.

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Getting fed up.

Postby hemarker » Sat Oct 25, 2014 11:43 pm

Hiya,

I apologise in advance if this turns into a rant but don't know what to do. I was diagnosed with fibro recently and been building up a few people that have it as a mini support group. I just want to be normal well to an extent, I have a subluxation of both shoulders and of my right hip and my hips just getting worse. Every time I go out I end up all wobbly and my knee just ends up giving up, I have thought about getting a walking stick so I don't have to hang on to my other half because that's just not fair. I just need some advice on whether to get one or not I'm only 20 and getting one would be admitting fully that I can't walk for long without help, well I know I can't but I don't want to admit it. Urghh I'm struggling with what to do with work as well, currently am employed as a waitress but I keep getting signed off and have no idea what to do with myself. I'm getting so fed up of not being able to do anything my dad even carried me the other day cos I was struggling to walk down the stairs. It's all getting to me and making me upset because I just don't know what to do. :(

If anyone has any advice on what to do then yeah would be grateful.

Thanks Hannah
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Re: Getting fed up.

Postby Queenie_70 » Sun Oct 26, 2014 8:56 am

Hi Sweetie,

Having a condition such as ours, we all go through periods of frustration, anger, hopelessness and eventually, resigned acceptance. It is the five stages of grief and we do have them as we realise our lives have changed in a way that we did not ever foresee. I am 44, I have had to use a cane since May, it was one of the hardest things to do. I had to accept that I was no longer the physical being I had been in my youth and early adulthood. I know that you are a young lady, and this can only be terrifying for you, but believe me, it is terrifying for us all. We are all here to support you, to guide you, to listen to you holler and scream if necessary....it is part and parcel of what we have to deal with.

Stairs, well I crawl up them, and I sit on my bottom to come down them so my legs don't give out which would cause a fall. I am constantly aware of how uncoordinated I am now, so bruising from walking into objects, door jams, etc have become common place. A cane is a cheap and effective way of assisting with your walking/balance, and it does give you the freedom of not waiting for someone to help you. Like you, my hips are my enemy. I was due for a replacement two years ago, but you know that never happened. I might push it again to see if getting it done helps. My knees and legs tremble so bad that at times they just give in and if it wasn't for the cane, and an eagle eyed partner, I would have lost most of my teeth by now.

I hope you don't see this as a negative post, it is a little dose of reality from someone who has been at the stage you are now, and has got out the other side. Fibromyalgia is a frustrating condition. No-one on this board will argue that fact. We have all gone through different stages of difficulty, whether it is with pain or walking or just trying to pour a cup of tea without trembling so bad it splashes back at us. Adjustment is key, and right now, you will have to take that plunge and adjust to your new body condition. A cane is annoying, but I always tease people and say, in the Christmas rush, or on a busy bus, I get preferential treatment because of it. Plus if I add a few spikes to the end I know a few people I would like to poke with it :)

Finding the funny, or positive side of each change your body goes through, is the only way that any of us have managed. I am deeply sorry that at your young age you are having to deal with this, but just know, we are ALL here for you.

Gentle hugs...and sorry I wrote so much...I just wanted you to see where I was coming from.

xx
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Re: Getting fed up.

Postby Garyl » Sun Oct 26, 2014 9:34 am

If a walking stick helps get one do not be proud because of your age, i had one then went to two am now on a walker withe 3 wheels. I feel safe when walking.

I just hate the pain we get from this dreadful illness was looking forward to the extra hour in bed sadly was a bad night hardly slept
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Re: Getting fed up.

Postby dazzleship » Sun Oct 26, 2014 9:39 am

hi Hannah

it's very difficult accepting this illness and what it can do to you. and also accepting that your life has to change at least a little bit. I think in your case some sort of mobility aid would help - you don't want to do yourself more injury by falling over.

I would say that elbow crutches (either one or two) might be good, I think crutches are more supportive than a walking stick in my opinion.

don't forget you can always buy sticks / crutches in nice colours and patterns so they don't look like boring normal ones :-D

the other thing is that if you get yourself a stick/crutch you may well find (as I did) that you are able to walk for longer and go more places than you would have without it, and therefore you actually get more out of life.


as for your job - I can't advise awfully much on that I'm afraid. I work full time but in an office so I'm not on my feet all day like you must be as a waitress, so that must be quite tough for you. I think you should tell your employer though so they can make 'reasonable adjustments' to help you.

all I can suggest is take the time to look at what you want to do with your life, and how best to achieve that - don't let your diagnosis of fibro make you feel that you can't aim for something you want to do.

good luck :hugs:
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Re: Getting fed up.

Postby Cjalex » Sun Oct 26, 2014 2:53 pm

Hello this is my first post on here I too have not been diagnosed long ago and am feel just as upset and frustrated as u I have 4 children 12,10,4,9m my husband don't work as he was a stay at home dad now we're both at home and I feel so guilty that we can't afford anything any more and blame myself constantly for the situation we are in I get esa but we have to pay £60 rent a week as well because I'm on work related esa I need to get a job as we are struggling but I know I will struggle to hold a job down and don't want to mess an employer about I considered a stick when my knees were really bad and I'm thinking I will get one next time they get bad xx our life's are in ruins and I'm at a loss of what to do :cry: looking forward to your replies hoping to get something out of them x ;-)
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Re: Getting fed up.

Postby FluppyPuffy » Sun Oct 26, 2014 4:13 pm

:welcome: to our little escape from it all Hannah :cow-wave: :cow-wave: :cow-wave: I've jiffled you over into here with this being your intro as it's a more suitable board.

Sorry to hear how things are for you at the moment :grouphug: :grouphug: It does take time to get used to living with FM, which is a process that it seems can't be rushed, nor will it let short cuts be taken. It's a case of taking thing day~by~day, even hour~by~hour at times, to find your way thru things and hopefully/ultimately, the best way for you to live with this condition in the mix. At times it is a very bumpy ride, at others it will seem that all that you knew is being overwhelmed by a swirling and choking blackness so thick it is blocking out all the lightness and brightness. There will be a way thru it for you, it's just finding those first few steps to set you going in the right direction seems pretty much impossible at the moment.

You'll find lots of info and advice on here, as well as support and understanding and whenever we can, we like to have a bit of :bear-dancing: :bear-dancing: :bear-dancing: too. Anything you're wondering about, either have a look to see if someone has asked about a similar matter, or ask about it yourself. It doesn't tend to take too long before someone :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: with a reply :cow-wave: :cow-wave: :cow-wave:
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Re: Getting fed up.

Postby Zia2014 » Sun Oct 26, 2014 4:27 pm

Hi Hannah,

I'm in a similar position to you, not diagnosed that long ago, but had symptoms since January. One thing I used to love was clothes shopping, it was a real habit even if I didn't used to spend very much. Since this all started I've only been into town twice, the first time I managed two hours (with a coffee break) and the second time this week I managed 3 hours with a break. Both times wiped me out and my walking became slower. I am now contemplating a stick or crutch because I am nervous that my legs will give way and no one will know I am actually ill without a stick. That may sound weird but people brush past me and I'm terrified I'll keel over just from that.

So I'm in the same head space as you on that one, I think I will have to suck it up and get one soon enough because at least it will enable to enjoy shopping again without worrying or aching all the time!

Regarding your job, is there anything else you would like to do as a career? Being on your feet is so demanding and tiring enough without feeling pressure to get through a shift.
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Re: Getting fed up.

Postby Sari mitchell » Sun Oct 26, 2014 6:07 pm

Hi everyone. I too, like most all of you, are FED UP WITH THIS ILLNESS. I can't even imagine going years and years more with it but then I look back and I have been suffering with this on a daily basis for 16 years now. I can't even remember a day that was without pain. Yes some days are worse then others but still I can't get a break.. I am grateful that I never reach the really had it point and consider doing something stupid but I do have my moments. If I didn't have this, I don't know if I would believe someone that says it is as bad as it is. I have done almost everything imaginable to help with the pain and Dr's just can't seem to get it under control. Yes, I have the best pain Dr In the world but their is only so much pain meds I can take before I am affected by it so much that I can't get out of bed or anything. I wish things were different. I had such a great career and it's gone. I have no family or friends that care except my mother and boy am I grateful every single day for her. She is the most beautiful woman in the world and if it wasn't for her I have no idea where I would be. I AM SO SICK AND TIRED OF BEING SICK AND TIRED. I can't imagine this going on for another 16 years or more. What do you do when you are so fed up with this? I am blessed though that G-D Is so good to me for every time I am down really low and things are going so bad for me, a light of something positive will hit me and I am good for another day. I hope I continue to be blessed in other ways. I am almost ready to give up and stop going to Dr's to help this for I really believe their is no way to help this other then a cure. Their are too many aspects of this illness to get control, at least for me. I CAN'T UNDERSTAND STILL HOW ONE DAY I CAN HAVE ABSOLUTELY NO PAIN IN MY HIPS. or feet, or back, and so on AND THEN THE NEXT I CAN'T EVEN MOVE. This is so mind boggling however, I have to have hope that their will be a cure someday. G-D Bless You all.
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Re: Getting fed up.

Postby splashy0910 » Sun Oct 26, 2014 9:20 pm

Hi, this is also my first post on here too!I am undiagnosed but I am seeing a second consultant on the 30th and will hopefully get the diagnosis of ME/CFS and Fibromyalgia. I too am getting FED UP!I am 17, studying childcare at college and have been signed off my placement till January. I have had the symptoms since March and have been so depressed since. Somehow I got through my GCSEs most were done right after a blood test and the tape was sticking too the page. My symptoms deteriorated in the first few months, I could walk well then I needed a walking stick yet I could walk the 20minute journey home. I then struggled walking from my bedroom to the kitchen (my room is straight above the kitchen and right next to the stairs. I then needed two walking sticks and couldn't walk home, whenever we went to the shops I needed a wheelchair. I now have a walker to walk around college with. I have been bullied so much that I now need counselling to be able to create relationships :crazy: its not nice suddenly your lifestyle but you really need to listen to your body, if you need it, you need it. Just remember everything happens for a reason.
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Re: Getting fed up.

Postby Helhit » Mon Oct 27, 2014 5:56 pm

Oh Splashy I'm so sorry to hear you've been bullied. There's some real horrible people out there. I always think at least I don't have to live with them :crazy:

Well done you for going to college and doing what you want to do.

I've gone from feeling fab to using a stick to needing a scooter in The space of 9 months and the progression is scary. Still I try to live in the present, pace myself and try to say look at what I have done today.

Look into CBT and pacing they help a lot.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: Getting fed up.

Postby splashy0910 » Mon Oct 27, 2014 8:44 pm

Hi Helhit, it was horrible, I was told I was faking it. Now at college some girls laugh at me while i'm struggling trying to open doors or make remarkes if I cannot do anything.
I done way too much this morning and have struggled through the rest of the day. I'll have to see what I'm like tomorrow :yikes:
Thank you I will mention it to the consultant on Thursday. I don't really know what CBT and pacing is.
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