Life V existance

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Life V existance

Postby Kiara » Mon Mar 03, 2014 7:01 pm

I make no apologies for my moans, my life consists of exhaustion; severe pain; depression; and isolation
I wonder if ever my life will change and i will see the vibrant woman i used to be. I'm not brave even though i've been told that i am, i have no choice but to take what i get for i am disabled and a prisoner to myself. I am one of the many sufferers of cfs/me & Fibromyalgia . So please take a minute from your busy lifestyle and the materialistic choices you have in your day , to think about us . I miss my heels and i feel so sad today . Kiara x
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Re: Life V existance

Postby Jeany » Mon Mar 03, 2014 7:23 pm

God bless you Kiara. We all have these days my love its just part of these illnesses, but we cannot blame others who are fortunate enough to be well. I have had a rant myself today about my ailments and how it affects my life, but we must battle on. I am isolated also, and it does seem unfair, but I have just watched the news, and it made me think that no matter how hard I find life there are always people who are far far worse off than myself. Spare a thought for parents who's children are missing or have passed and it kinda puts things in a different light.

I hope you have people who love you in your life, and if you do cherish them, and also yourself. Be kind to yourself x x x
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Re: Life V existance

Postby pc1969 » Mon Mar 03, 2014 7:29 pm

Snap, I've been suffering for 20 years and u miss the old me :( but we have to make the best of a bad situation.

Take care
Kiara
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Re: Life V existance

Postby sharon louise » Mon Mar 03, 2014 7:58 pm

Know exactly what you mean silly as it may sound to some, I miss my heels too. Used to wear loads and loads of pretty shoes now I'm resigned to flat shoes forever more, and they're nothing like a pair of strappy pretty high heels :(
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Re: Life V existance

Postby scania614 » Mon Mar 03, 2014 8:12 pm

Kiara completely agree a prison my homes become and a prisoner to my thoughts rattling round my head cause thats the only thing that seems to work and runs always with its self,u made me chuckle with the heels i miss mine and nice clothes instead its crocs and dressed like im in the arctic to evade a single draft of cold hardly the sexiest of looks going,at 43 and just married i feel 90 and written of your not alone hun but don't it feel it most the time x
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Re: Life V existance

Postby Alikatty » Mon Mar 03, 2014 10:07 pm

Can empathise. I too was active before july 2012. No more heels for me. :( I was famous forithe heels I would always wear each and every day . My life has also ended up upside down. Sacked from a job I loved, due to the fact I had too much time off sick, whilst my Dr tried to eliminate other illnesses before sending me to a rheumatologist to confirm his diagnosis of fibromyalgia and cfs.
Losing my social life, my personality due to stress and depression and exhaustion. ..Piling on weight with lack of proper exercise as I just can not do it. Financially I went bankrupt last May and obviously now face the fear of losing benefits. I miss my old me. I'm 51 I was always young gor my age, but I have aged dramatically. I wobble with flat boots and walking stick. Friends disappeared. As everyone knows this stupid fibromyalgia alters everything and takes away all what we were. Oh to have it back .
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Re: Life V existance

Postby atko64 » Tue Mar 04, 2014 12:42 am

I to have cfs/me, fibro and anxiety/depression and sometimes look back when I was well. We must however look forward and take each day at a time. :-D I'm in wheelchair as the exhaustion and pain are just too much. I'm taking a bucket load of meds each day and I'm seeing a pain specialist in March so I'm looking forward to going in the hopes that they can help.
Has anyone else been to a pain clinic ?. I was wondering what to expect. Am I expecting too much ? :?:
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Re: Life V existance

Postby Jenkins12 » Tue Mar 04, 2014 8:47 am

I have six full on conditions inc fibro , I am wheelchair bound don't get out for days , but I have learnt not to let it be all consuming .....yes it hurts its a pain it stops your world ,but take control back.... Think ,ok I know fibro is there but what can I do for me today .. Just silly little things give you a control feeling ..
Take up a hobby , invite someone over , get then to make the tea, you can access local charities or churches the have people who will come and chat ...
Also ask about personal assistants like Carers they give personal care but on days you choose they are also there to do your housework or other jobs so you have extra energy to access the wider world . The pa can take you out to have coffee or out for a walk in chair whatever you like ..
Use all the systems out there to work for you!
My poor old me days are a lot less , the conditions are worse more than ever but at least I live not exist .... Please reach out for these people.
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Re: Life V existance

Postby Jeany » Tue Mar 04, 2014 11:36 am

I agree Jenkins. We can't just sit miserable all the time, and the best thing to do is like you say do something nice for yourself each and every day. Be kind to YOU.
My life has also change dramatically, and my thoughts and values too. I now appreciate the little things in life such as:-

Knowing my family are safe and well
A nice warm bubble bath
A lovely view
The warmth of the sun on my body
Good company
The friends that stay the course
Waking up every morning
Watch a dog frolicking & running around

We may not be able to wear 4" heels and strutt our stuff on the dance floor anymore, but we are still valuable human beings with a whole lot of knowledge and life experience, and we have survived so far, and we will survive this. It takes time to adjust, and to listen to your body's need and limitations.

Get some relaxation books Don't Scoff before you read on PLEASE as I used to( Mindfull Meditation for pain relief by Jon Kabat zin are supposed to be excellent, and he does CDs too, and the ME/CFS Special Team working with me follow his theory) I have tried some before, but I have been given some excellent ones to try and I will let you all know if they work.

Put bad thoughts out of your head, and do not worry about the future. Just concentrate on the moment and enjoy every little bit that you possible can. This is the way forward to help your body to heal and relax.

Take care and have an open mind everyone X X X
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Re: Life V existance

Postby Alikatty » Tue Mar 04, 2014 12:28 pm

It is lovely and uplifting to read positive experiences and information on what hrlps some of you. Ive been to a fibro workshop at my local hospital.the information helped loads initially. An understanding and more or less advice similar to here. Ie treat yourself look after you, relax dont give up socially. Accept change and appreciate whats important. I actually did feel positive for a while. However when alot of things occur out of your control and you stress trying to find out what you do next, all thoughts that are positive just go out of the window...
I am going to take on board ideas from this thread, and make a determind effort to make my life better. For me.
I think we all need this positive reinforcement.
Im thankfull to people who tske time to encourage others on here. :) xxx
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Re: Life V existance

Postby FluppyPuffy » Tue Mar 04, 2014 2:00 pm

I've been in a similarly dark and scary place, and have even been back for a few visits over the years, altho thankfully non have been as :yikes: :yikes: :yikes: as that first time was. It was the lowest and darkest things have ever been for me, and tbh, I didn't give a rat's :girl_moon: :girl_moon: what was going to happen as all I could see was the swirling, ever~present cloud engulfing everything around me.

It was at this point that I was referred for counselling, and then therapy, when OH took me and dumped me in front of my GP so they could see how I was. I didn't know about the appt, if I had then I would have been able to perfect my mask, as I did with all appts to make myself look as if I was managing with things much better than I was in reality.

That for me was the start of things starting to brighten up for me. It was very, very slow at first, but has increased to some degree, and it hasn't been the most perfect journey I've been on, some of the potholes sure do hurt when you bump down them, but there is always a little glimmer of brightness there, it just sometimes takes a bit more finding.

My journey on the purple brick FM road is still ongoing, I've found that no matter how much I feel I understand my conditions, there is always something else to learn, or be reminded of, as I found at the end of last year when I was on a Pain Management Program.

Like Jeany, I've grown to appreciate the smaller, special things that life can give us. It doesn't matter what it is, or if someone things I'm :crazy: :crazy: :crazy: for considering it, if it makes me :-D :-D :-D then it as close to being perfick as it can be. One lesson I have been taught is to live in the now rather than wonder and dwell on what might be in the future. In the now, I can do things and control them (to varying degrees) but in the future, whilst I may guess at what may possible happen, until it actually arrives and becomes the now, I won't know what it holds.

There are methods of help out there, as well as things you can try for yourself to see if you can improve how life is for you. The boards are full of various things members have tried. Have a bit of a looky, see what there is, you just never know what can make even a small difference to how you are.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Life V existance

Postby Kiara » Tue Mar 04, 2014 3:04 pm

Thank-you to everyone who have responded to my thread, sharing help us feel not so alone, and being positive also helps us see things from a different perspective. I try to be positive and i try to reply to as many threads that i can, i also have joined a cfs/me chat line . The company of these alone is wonderful but sometimes just too much to bear . But i miss my heels and for all the things i have lost , my heels and driving will forever remain my grieving point :( I guess i just miss being female and feeling feminine. I have a wonderful husband he is also my full-time carer, without him i just don't know where i would be. But there are times i can't help but feel sad. Thanks again for all your input. Hugs xx
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Re: Life V existance

Postby Jeany » Tue Mar 04, 2014 7:02 pm

Hugs to you too Kiara. We all miss thing it's only natural love. I am so pleased you have a loving husband.

You take care and let us know how you are getting on x x x
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