Work

[msBrightside]

I think this describes all of us even minus an occupation! next time someone trys to lecture me about work this is getting shoved in their face!! With a big circle around exertion!

Every small thing involves huge physical and mental effort. Go us!

[budgiefriend]

"Every small thing involves huge physical and mental effort. Go us!"

Yes! and it is particularly upsetting to those of us who loved their jobs or careers and always worked many hours more than the prescribed 40 per week. Now it seems we spend a lot of time doing the doctors' job for them. We educate ourselves about our condition, attempt to stay up to the minute with any current research and political changes in the health system... we work hard on trying to pace ourselves or get the best diet we can even when we can't go to the grocery store or cook. We work at trying to deal with the abysmal benefits system, and we work at trying to keep ourselves sane and reasonably emotionally strong despite the stigma we encounter from every corner. Work doesn't half describe the effort we have to make to do all this when our bodies are, as I recently said to myself, "clapped out, broken down," just rolling from one wave of misery, pain, and nuisance to the next all day every day....and just about used up, and yet still trying to drag along behind my brain. My brain still tries to function like it did 20 years ago, but because some part of me doesn't accept that it can't it plays tricks on me at times. That is so maddening!

[msBrightside in reply to budgiefriend]

Couldn't have said it better myself ↑

[budgiefriend in reply to msBrightside]

smile! Sending you a gentle hug and hope you have as restful a night as possible

[msBrightside in reply to budgiefriend]

Hugs to you aswell. I miraculously got a sound sleep as well didn't think I would with all they aches and pains so thank you hope you slept well too

[budgiefriend in reply to msBrightside]

That's so great to hear! When it happens, isn't it just magnificent?

[Ian123]

Strange thing is still desperate for the working life that was part of who I was.

[msBrightside in reply to Ian123]

Yeah I long for my old job, everytime I've started a career my health has ended it abruptly. Hope and pray I can pass this year of college missed so much. It's hard

[budgiefriend in reply to Ian123]

I fully understand what you mean. We live in a world where people are defined and valued by their work and what they produce. What's inside a person is not so much paid attention to, unless they are bad and hateful. Many of us have so much to offer that is not 'work' per se, but we feel so guilty that we are 'taking' from others for our needs. I try to give as much as I can in ways that I can...I don't think I do too good a job of it, really. I often feel that I am a nuisance and a bore. Lucky thing that I don't have a lot of people who have to put up with me. My bird likes my talking no matter what I say. Do you have a pet who loves you and thinks you're special? Ian, I am sure that this phase of your life finds you contributing in other ways and having other opportunities for growth and challenge. Our illnesses take up so much time. It's a shame. But here we are and good to share.

[Ian123 in reply to budgiefriend]

Changing into a new normal has been a slow process, grieving for the former life as you leave it behind into an uncertain future. I focus my energy now in a way that was not previously necessary with a life in the fast lane that was always chasing more.

[budgiefriend in reply to Ian123]

It is such a healthy way to deal with this, Ian! You have found the right balance. Grieving is a MUST. As with any type of loss and grieving, it can take a lot of time and energy. It can make us confused and stuck for periods of time, and people don't seem to understand that it is necessary. To a greater or lesser degree, we have different aspects of grieving for our losses of health, based on things like family support or lack of it, of the abilities we still have to do what we love, and of our basic personality and temperament, which I think is largely genetic.

I hate the fact that people are rushed through grieving or made to feel that they are wallowing when they just need that time and understanding to get through it. There is a saying I read which I can't remember exactly the words nor the author... it was that grief cannot be bypassed; when we lose something precious me MUST only move forward by traveling through it. We have to honour and be gentle with ourselves during this process.

We are so lucky to have other people. I am sure that those who struggled with these things even 15 or 20 years ago felt more alone than we do because they did not know what was happening and did not have the online community. When your circle of family and friends (or lack of it) is unsupportive, you are so at risk to give up.

And we are also lucky, as you say, to have the time now (call it a trade-off of a minor sort, but of course we would not have chosen it) time to find deeper and richer things than we sought when we were busy doing and getting and all that we did before.

[budgiefriend in reply to Ian123]

I love your picture, Ian. A red squirrel is my favourite animal in the whole world!

[Ian123 in reply to budgiefriend]

Fortunate in getting a picture at Loch Garten when my father was photographing the nesting Ospreys, keeping quiet the squirrel was attracted with some nuts. A fond memory of a good time

[budgiefriend in reply to Ian123]

those ear tufts just do something to me. There's a great video on Youtube of a Scottish woman who was raising some squirrel babies. I am sure they have moved on to more natural lives now, but it's so cute. My friends know how I love them so they send me adorable pictures when they find online.

[Shazzzy]

Hi ms Brightside, i have thought for quite a few years now that its hard work being ill !?! The effort and time it takes just to be ill leaves very little for anything else. Trying to keep up with appointments for gp, hydrotherapy, hospital, dentist and recently accupuncture is exhausting. "Activity involving mental or physical effort done in order acheive a result" is apt description of my life !!

[msBrightside in reply to Shazzzy]

It definitely is hard work wrapped in days of hospital appointments, trying to find days when u aren't resting I've been meaning to go to the dentist and opticians for ages.

It's hard when your days are filled with thinking about your illness and working around it too.

[bluejeans16]

Last week I had to see my advisor at the jobcentre and pretty much told her I had no symptoms at all just to get her off my back as she has said I am not interested in getting a job and put up every barrier I can to avoid working. I got so mad with her I left the job centre in tears. One of these days I am sure someone will punch her as I have been told she is the same with everyone and she is supposed to be the disability advisor. The sooner i find a job the better as she is trying to push me into jobs that I am not capable of doing. eg cleaning

[Hidden in reply to bluejeans16]

People like her need a week in our body then they would know what it's like to have fibro. I am one of the lucky ones, I was put in the support group after a long fight I don't have to go for interviews with my adviser now, I was finished from work due to my health 10yrs ago and I officially retire in November. Have you tried DLA what is now PIP. You have not said how bad Fibro affects you. I do hope you are not suffering to much.

Regards

Diane

[bluejeans16 in reply to Hidden]

Hi diane53. You are right if she was me for a week she may start being more understanding. I don't actually have fibro I have ME. As for dla or pip she told me when I first signed on in november I was perfeclty capable of working and that I had to go on jsa. I just hope I get job soon.

[Shazzzy in reply to bluejeans16]

Hi bluejeans, have you been to cirizens advice, they wouls have more idea about what you are eligible for, perhaps esa rather than jsa, i am so sorry you have todeal with such treatment each time you fo to jobcentre. It is shocking the way people are being treated. Good luck for the future,

[bluejeans16 in reply to Shazzzy]

Hi as that stupid woman has already told me I am not eligible for esa. I used to get it years ago anyway and i was only given £45 per week which is no good to anyone. Hopefully I will get the job I am going for tomorrow and then that will be the end of it.

[msBrightside in reply to bluejeans16]

She obviously doesn't have any understanding or empathy. People like that should not have that job! I've came across a few of them in the past.

[bluejeans16 in reply to msBrightside]

Hi msBrightside. I agree she has no empathy whatsoever.My dad says exactly the same.

[msBrightside in reply to bluejeans16]

I would go to the citizens advice and apply for PIP anyway. It's just one persons ignorant opinion she can't stop you applying.

[budgiefriend in reply to msBrightside]

yes, I have found the citizens advice so helpful in the past. Also, there are ME Association support groups in some areas and in my area they have a benefits advisor who came to my home and filled out the forms for me to reapply for DLA. This was extremely helpful as she knew exactly what I was talking about and then could put it in the format and words that would work for the form. She knew what they would be looking for, and how and what to say or not say. It took such a lot of stress off me.

[bluejeans16 in reply to msBrightside]

Hi msbrightside. Ken sent me a link to pip a while ago and as it doesn't impact on my everyday life I don't think I would get it!

[budgiefriend in reply to bluejeans16]

Hi, I'm so sorry that you have to put up with such insensitive and inappropriate treatment. When we are pushed to do things that aren't right for us, and have to keep pulling ourselves along instead of getting the rest we need, it really takes its toll. I hope that you can find a way around this soon.

[bluejeans16 in reply to budgiefriend]

Just heard I have got a job interview on Thursday and it is for only 20hrs a week so it is ideal. Fingers crossed I get it and don't have to see her face ever again! She did say one thing to me that amazed after telling me I was perfectly capabale of working she was on about sending me on a course to help disabled people find jobs.

[msBrightside in reply to bluejeans16]

Good luck hope you get it and don't have to deal with her again I would complain about her my mum did before and got someone else.

[bluejeans16 in reply to msBrightside]

Hi msBrightside. thanks. As for that woman I think I will ask to change advisor. I am hearing complaints about her daily.

[TheAuthor]

Very good! Thanks for sharing.

Take care

Ken

[msBrightside in reply to TheAuthor]

Thanks Ken

[Shazzzy]

Hi bluejeans, just want to wish you all the best for your interview on thursday.