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The UKFibromyalgia Forums • View topic - Can I really keep up the 'normal' life?



Can I really keep up the 'normal' life?

Any tips on what helps you including alternative medicine.

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Can I really keep up the 'normal' life?

Postby Becky-Lou » Mon Jul 08, 2013 10:01 pm

Hello,

I don't come on here very often as I very rarely get the time, but was just curious about the other conditions people have/had and whether there is some kind of correlation, and what can be done work wise/leave wise?

I got officially diagnosed with FM in 2010 after many years of on-off pain, after 7 months barely able to sit myself up. Before this thought, I've had problems all my life. One of my legs never grew properly, resulting in lots of major surgery and treatment. I also have hyermobility syndrome, and recently got told that I have 'motor' problems with my legs (finally a diagnosis that supports and recognises how difficult walking is for me). I am also now trying to 'stretch' my calves muscles, which are too short and make walking very painful. I may als require hip replacements in the near future. My diagnosis of fibromyalgia was somewhat a relief. Someone finally believed I wasn't playing on my condition and overdoing it! Since them I've been told I have depression and anxiety.

With all this, and as time goes on, I'm finding work increasingly difficult to handle. Because a lot of my bits and bobs I've had to cope with growing up, just getting on with it, it's really hard to acknowledge the challenges I have, as well as have others understand of not just being lazy.

The problem is, I have to work or I don't pay rent and don't eat. Because I 'cope' I'm finding it hard to demonstrate that it may not be suitable doing the amount I do and the level I am doing it. And of courses it's really hard to tell this to the people I love - what if they think I'm lazy? Even I begin to doubt use of I've always had to 'get on with it'.

Has anyone got advice? I'm right at my 'prime' - childless, decent job, about to get married, trying to buy a house. It's tough to feel I might already be struggling and I've only just started. I'm scared ill lose everything I've bee working towards. I want to speak to my doctor but I'm worried he'll just blame it on my depression, or think I'm idle.....

Advice pls!!!

Thanks guys,

B
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Re: Can I really keep up the 'normal' life?

Postby Iceskatemum » Mon Jul 08, 2013 10:23 pm

I would hope that your GP would not fall into the catagory of people who would find you lazy or idle. After all he has your notes in front of you to support all your issues and problems. Talk to him or her, they may be able to offer some support or at least point you in the right direction.
From posting on various threads , I get the impression that many of us with FM are those in life who just get on with things cause what the point in complaining but one thing I have learnt over the last 15 months is you got to sing harder and louder than everyone else or you will get left behind in the system .

So please talk to the GP tell him how this and your other conditions are affecting your life, he may get you additional physio to help your muscles , he might arrange an OT appointment so that you can get help with things that might improve your walking or doing things at work or home.

Try and learn to pace your self , no crash or burn type activites everything planned so that you can ustilse your energy more effectivly.

Also talk to your work , they might be able to make reasonable adjustments to allow you to stay in your job longer than you might if you keep to your current ways.

I hope this all makes sense , good luck and hope things go well for you in you wedding.
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Re: Can I really keep up the 'normal' life?

Postby whoami » Tue Jul 09, 2013 12:03 am

Becky.....You are not lazy, don't let that thought even enter your mind. If you talk to your Dr maybe you could say you are not depressed but concerned about what to expect from fibro.

You certainly have had more than your share of issues and possibly more to come. Then you are hit with fibro. Getting that diagnosis is strangely pleasing. Finally you are being believed, we really don't care what it is called, just that someone verifies our symptoms.

Becky, learning to listen to your body. Knowing when to push it and when to slow down is one of the hardest things to deal with. You need to keep as active as you can but stop before pain etc. gets out of control. like ISM suggested, let your work know of your issues. Maybe there are adjustments they can make. Could you work from home.

Becky, you do not have to explain or justify yourself to people. If you want, explain what fibro is. What they do with this information is their issue. If they fail to understand or believe, that is their problem not yours.

Becky, people with fibro can lead very happy, productive lives. Some of us work, some don't. We learn to adjust, do things differently, slower. We don't have to stop participating in what we enjoy. We just enjoy the things in a different way. Although we maybe live a painfully long life, we live!

Becky, congrats on your upcoming marriage. You will get your home and all your work will not be for nothing. Try to relax...xx
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Re: Can I really keep up the 'normal' life?

Postby FluppyPuffy » Tue Jul 09, 2013 11:00 am

Congrats on your upcoming nuptials Becky :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: Hope your big day will be absolutely perfect for you :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:

I don't think there is much more I can add to the advice you've been given I'm afraid. It's a long time since I was in a work environment, so no current experiences that might be of help :( :( :( :( The one thing I will add is that once and employee advises their employer of an illness/condition/disability that they have been dx'd with, the employer is legally obliged under The Equalities Act 2010 to help make the job as suitable as possible for the employee to carry on doing, with all dx'd problems being taken into account. This is what is meant by "reasonable adjustments." So if there are some things that you feel might help make work more manageable, then talk to your employer about them. If you're unsure about what might make things a little more manageable, then talking to your Occy Health type people or an independent Disability Employment Adviser could help. They may even be able to work with you and your boss to get things in place for you.


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Re: Can I really keep up the 'normal' life?

Postby denys » Tue Jul 09, 2013 7:24 pm

Becky I cant add much more to the advice you have been given by the others, talk to your doc if he isnt compassionate or understanding then think about changing him. with everything going on in your life at the moment you need reassurance and help we are all here sending you :grouphug: :grouphug: :grouphug: :grouphug: and :goodluck1: :goodluck1: :goodluck1: :goodluck1: :goodluck1: :goodluck1: with your wedding :-D :-D :-D :-D :-D :-D
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Can I really keep up the 'normal' life?

Postby Becky-Lou » Wed Jul 10, 2013 9:58 pm

Thank you all for your lovely comments. Had a rubbish day at work today (still in probation) and been told they may not have a contract for me so looks like I'm going to be out of work.

Fortunately, I also had an appointment with my GP today so he was able to see how much I'm struggling. However, although I wasn't expecting a miracle, I was hoping that the whole depression thing wasn't going to be blamed. I believe that, yes, I'm low, but its because everything else feels rubbish - pain, aching, brain fog etc. I've had fantastic experience and I've got the qualifications, and knowledge, yet I can't do it. I should be able to but it's like I get a mental block or hit an invisible ceiling.

Speaking to my other half, he has reassured me and understands, but I'm so scared no one else does. I'm really hoping I can turn this around but I believe my abilities are being overshadowed by my fibromyalgia and depression.

For those of you still working, since being diagnosed and/or getting your first symptoms, have you seen your abilities decrease? For those who perhaps dont, or work part time - did you find cutting back to fewer hors helpful? I feel I'm in a catch 22 - I work and make myself ill, I stop and I'm well!! I got diagnosed just a few months before I graduated - feels like Sod's law!!!

Thanks all!

B
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Re: Can I really keep up the 'normal' life?

Postby whoami » Wed Jul 10, 2013 10:24 pm

Becky....I can read that you really want to work. I also feel that you have great work ethics.

Seeing these things I can understand how you must feel. No wonder you are frustrated. I don't work, I haven't gone back since an accident at work. I wish I could but know that physically there is no way I could have gainful employment.

Becky...sorry to say but fibro is working exactly as it does, and it is with you. You work, you hurt. You don't work and take care of yourself you are fine. Becky, there may come a time when you feel you can't do it all, that is ok. When I had my accident they would not retrain me. They said I could not guarantee that I could sit in a class all day or even remember (brain fog) everything. I was devastated. I was only 30. I now realize how right they were.

Becky...you are not crazy, lazy. You are not depressed for no reason. Becky, you can't control the outcome of fibro. Just do what you can. Don't worry what others think, that is their issue.

Becky, you are a very smart woman, if you listen to your body you will know what you can and can't do. I wish I had the perfect answer for you to feel better.xx
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Re: Can I really keep up the 'normal' life?

Postby SchroedingersCat » Thu Jul 11, 2013 11:13 am

Becky, I was diagnosed with FM shortly after returning to work after 9 months off with stress, anxiety and depression. I left the job that was causing the problem, and that helped a lot. I've worked ever since and haven't had a day off sick because of the FM (did have a few days off with flu though) since I started the new job. I've actually found that my ability to remember, concentrate etc has improved since I went back to work, although the pain and tiredness have not really changed, and over the winter the pain was very bad. I don't suffer with any other conditions other than FM, and I'm not suffering with my mental health any more either, so I don't think I'm in any way representative of the usual FM sufferer.
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Re: Can I really keep up the 'normal' life?

Postby FluppyPuffy » Thu Jul 11, 2013 11:56 am

Sorry to hear things may be looking quite so good for you with work at the moment :grouphug: :grouphug: I have very hazy memories of being in the probation stage at work, esp the additional pressures it put on me with trying to achieve goals and targets whilst also creating the right impression :shock: :shock: :shock: :shock:

I know I briefly mentioned this in my previous post, but it may well be something to consider looking into, if not for this current position, but for your next/future jobs.

In JobCentrePlus's there is someone who deals specifically with people with illnesses/disabilities who are wanting to work, or are currently employed find ways to do all aspects of their role as effectively as possible without it having (hopefully) too much of a detrimental effect on their health. For some it could be additional/alternative equipment to make them more comfortable, for others, it could be a change in start and/or finishing times to make their journey/commute to and from work that bit more manageable, and just about anything else in between that can be described as "reasonable adjustments" under The Equalities Act 2010. It might be worth contacting your local one to see what they have to suggest. Alternatively, depending on the size of your employer, they may have their own Occy Health~type people who could help you with this.

Being worried and low in mood will have a knock~on effect on your abilities, both mental/cognitive and physical, to do your job to your maximum potential, so anything that can help ease things, even just a little, may also help with how you're finding things at the moment.

The phrase "reasonable adjustments" is used in The Equalities Act, and are what an employer is legally obliged to provide once an employee advises then of their problems in relation to their condition(s). They not special or favourable treatments, and should be available to anyone who has a problem recognised under the Act.


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