Nothing New

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Nothing New

Postby migrembe » Sat Apr 12, 2014 2:12 pm

What if when your time is up, as mine will be shortly for reassessment of ESA (support group) and DLA/PIP you have nothing new to say, because there is nothing new to say...

Every pill the docs have given me leave me with bizarre side affects so i am on the minimum doses of the basics, which don't do much.

Physio was 3 years ago and they just shake their heads at me and said there wasn't much they could do but i could try hydrotheraphy, but when confronted with the question of 'who would help me get dressed and take me home' they didn't answer.

I was invited to a pain clinic in a group session, but was told as i was allergic or sensitive to most medication there wasn't much else they could offer - trying pacing yourself. Try doing half a task - yes but i can't half out of bed????

I had 12 weeks of counselling and that helped more than anything else for the depression and attend Mind on occasion if i can manage to get up, but i find that helpful.

I've never had a day since this all started that i was a fully functioning human in fact 2/3 of most days are spent in bed, the other 1/3 of the day is spent on the loo.

So what do you do about supporting evidence when you are just surviving and there is nothing new? :nono:
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Re: Nothing New

Postby Garyl » Sat Apr 12, 2014 2:31 pm

migrembe I know how you are feeling, i am about a year from reassessment stage, my health has not improved at all yet for once has not got worse, but i know soon as i get the dreaded brown envelope i will start gong down hill again rapidly.

The thing is this Government remember were not elected, a deal was done so they could do what they are, i know people worse then me and again nowhere near as bad as me who seem to get things on a plate. You just have to stay strong and fight your corner as best you can.

All you can do is get as much evidence to support you that you can, I am struggling daily to get up now i just want to turn over and stay in bed , which i know is not good for me. The thing with Fibro a lot of people do not understand it so we have to fight that as well.

When i was diagnosed the Rheumatologist was visibily upset when telling me there was no cure and not mush he could do for me.

Just collect as much evidence you can from your GP, practice nurse or specialist it all helps
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Re: Nothing New

Postby migrembe » Sat Apr 12, 2014 3:39 pm

I barely see anyone any more. The specialist diagnosed me and then sent me back to the GP's. My GP believes i have FMS but is unable to add anything that helps. He comes from a rheumy background and at first he seemed to think that route - meds, physio, sleep, etc would help but really it's not done much. In fact anything that has helped i have had to go do myself.

I had a lovely nurse do my ATOS for ESA medical last time and all she asked me to do was turn, which i can't do and then she said that was it. As far as she was concerned i wasn't fit for work.

As for DLA a lovely Dr came to my home after i stated i was too unwell and my disability too unreliable to turn up at any appointment.

I call myself a non-functioning adult - maybe i could write that?

Thanks for your support.
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Re: Nothing New

Postby denys » Sat Apr 12, 2014 5:49 pm

Did you keep copies of all the evidence you had when you last applied and the forms :?: :?: :?: :?: :?: if nothing has changed resubmit the evidence, talk to your GP and tell him you are coming up for renewal and nothing has changed so that he can record it in case they get asked. Ask for another home assessment if it is needed.

Its going to be the same for a lot of us as on the whole we either get a bit slower, develop pains in different areas or stay the same. So :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: you will get some common sense applied to your claim
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Re: Nothing New

Postby migrembe » Sat Apr 12, 2014 6:44 pm

Thank you. I have spent a week trying to get a GP appointment but i have time so shall keep at it.
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Re: Nothing New

Postby zappa20 » Sat Apr 12, 2014 8:44 pm

Have you received a new ESA form to fill in ? If not then you can relax for now as due to the backload of ESA claims and ATOS resigning from the contract , reassessments have been temporarily put on hold. Has been said it could be 2 years until they catch up and get a replacement contractor up and running but that is subject to change. And in 2 years who knows the process could be different.

So for the foreseeable future only new claims , those who've to be assessed for the first time and those who received forms to fill in prior to mid Jan this year for reassessment will be dealt with. Anyone else due to receive a form for reassessment is on hold for now.

I filled in my form for reassessment back in Oct last year and haven't heard a thing since. Imagine I'll hear eventually when it reaches the top of a huge pile on someone's desk

DLA renewals are being processed normally by all accounts but there's huge delays with PIP claims.

As an aside the hydrotherapy may have been a great therapy for you to try. Could someone not have taken you or gone with you to help you getting changed. I know depression is a very difficult thing but if we can't make an effort to help ourselves then we can't expect anyone else to be interested in helping us. Lying in bed all day for 2/3rd of your life will be causing you so much damage and pain. Sorry if this sounds harsh it's said with good intentions because in my lifetime I've seen so many people recovering from strokes and dreadful injuries suffer so much pain in the struggle to improve their mobility by the smallest amount.

It sounds like you've given up . Could you try a further CBT course if it helped and see if you could spend more time on regaining some of the muscle strength you've lost? It would make a huge difference to you quality of life and depression.
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Re: Nothing New

Postby migrembe » Sun Apr 13, 2014 7:11 pm

Dear Zappa,

I am writing to you seeing as you have written to me. Before my flying lesson down my house stairs i was a staff nurse working on a busy cardiac unit. Just days before my fall i had, with the help of a couple of work friends successfully resuscitated a man in a life. I know what can happen from staying in bed all day. I may need to rest in bed but it doesn't mean i am totally idle, i love family history and i am now a proud owner of a laptop and i read lots.

No, i don't have anyone who can go with me. I don't have a significant other, my children are grown some with families of their own so i don't see them very often and my friends have deserted me, because they only see the person i was and not the person i am. I do go to Mind once, sometimes twice a week, where i have new friends but there we are all sick.

As for the depression. No one knows someone else's depression! I had to go to private counselling through a charity as i wouldn't have been seen by a counsellor through the NHS even now, there is a 2+ year waiting list where i live. I was suicidal and no one believed me, not even my GP.

Most nights i have vivid dreams, often nightmares and sometimes night terrors too. It's very scary waking up in the night thinking there is someone in your house, your room or even your bed.

The Dr who diagnosed me said my mind and my body switched off and when it came back on again it was broken, she was very sorry but there wasn't much that could be done. My counsellor said my mind had broken.

After suffering a life of abuse and neglect from lots of corners not just one it is no wonder. Then in 2009 my niece died in a car accident, she was 21. Please forgive me if i have my own little pity party, i still believe in hope and it is amazing what you can do with 2 good hours in a day. ;-)
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Re: Nothing New

Postby dejay » Mon Apr 14, 2014 11:08 am

Please Migrembe do not give up, I was diognosed about 20 years ago, I can relate to a lot you say, as time goes by you learn your way of coping,I still become depressed but I have learned to cope with that,my every day pain I can manage but flare ups I have yet to master,I hope my note can be of some help to you. but do not give up I am sure you will find your way to do things, And theres always some one here to listen love to all
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Re: Nothing New

Postby zappa20 » Mon Apr 14, 2014 1:42 pm

migrembe wrote:Dear Zappa,

As for the depression. No one knows someone else's depression! I had to go to private counselling through a charity as i wouldn't have been seen by a counsellor through the NHS even now, there is a 2+ year waiting list where i live. I was suicidal and no one believed me, not even . ;-)


I'm sorry my post has caused you upset and to react defensively. There is absolutely no need for you to justify your position. I thought by informing you ESA reassessments were now on hold would help to reduce some of your concerns but you appear to have totally missed that part of my post.

With regard to depression I once helped my sister a previously very confidant competent professional like yourself through a total breakdown . She was suicidal and needed 24 supervision and I moved her into my house so I could look after her , as her OH worked away from home and her kids were at Uni.

Do you think your GP is understanding and helpful? If not could you consider changing GPs? The reason why I ask this is because when my sister had this severe episode my GP immediately got her help from the Community health team. She was assigned a mental health worker who visited every day and was available 24/7 to call out any time of the day or night. The MH worker also arranged an appointment with a Psychiatrist within 2 weeks of being involved with this service, when normally there is an 18 month wait.she also drove her to the appointment and back.


It seems wrong that you are having to fund private counselling yourself and that you've been let down by our NHS system.
My sister went on to make a full recovery although I'm not suggesting this is possible for you or any other individual. She did later tell me that while being understanding of her vulnerability that my persistence in treating her as a normal person and not always offering sympathy and tea helped her to regain a perspective on life and her outlook. We are very close and she knows I will be there for her again if it ever returns
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Re: Nothing New

Postby migrembe » Tue Apr 15, 2014 7:25 am

When i read back the things i write, it almost as if someone else has written it, it always seem so dark and that really isn't me or maybe it is but i don't see? I have lived with depression since my mid teens and had my first break down at 24, i think i was about 38 when i had my second one, and then i had one about 3 years ago just after i was diagnosed with Fibro. I also started with migraines in my teens and i still continue to have them. They went from having one every 6 months to having one a months and when i turned 40 they never seem to go away and now i tend to get pre-migraine symptoms, lose the left side of my body for several days sometimes but mild or no headache at all, at least once a month sometimes more. I have been known to say that my migraines turned into fibromyalgia. Or maybe i had fibro all along? I think it is probably likely. It's not a food allergy and i know that food allergies don't cause or control fibro either. Why? Because for 4 years before i was diagnosed i was eating mainly organic, vegetarian nearly vegan in the hope to stop the migraines but it did neither that no anything else. As for pain it never stops, i have had odd days when it has felt a little easier but no it's been one long flare. It appears i am allergic to most of the pills including stronger pain killers,which i am sure are not the answer anyway. I meditate before bed so i can sleep and i have a number of relaxation techniques that help momentarily. I don't believe you can control fibro but i think because i know people who live with it. How can you cure something that has no point of origin and does not damage the body in anyway? I believe it's a mind thing. How do you treat the mind? Well the docs are still working that one out. As my surgery contains a group of Dr's i don't always see the same one, although i can ask to see the same one i would probably have a longer wait for an appointment.

It's not anyone else's fault i feel this way, it just is.
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Re: Nothing New

Postby denys » Tue Apr 15, 2014 6:09 pm

Please please go and speak to someone, your last post seems to indicate depression really closing in on you. We can help with talking if thats what you wish but its just a virtual world here and it cant help physically.

The pain you are in is no doubt responsible for the way you are feeling as it sounds horrible, coupled with the allergies it must drag you down.

Sending some very gentle :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: I hope you feel a little lighter soon
Denys

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Re: Nothing New

Postby migrembe » Tue Apr 15, 2014 8:56 pm

I am so grateful for you all and all your support :grouphug: :flowers:

I am staying with my daughter and her little family for a few days, getting down doesn't mean we have to stay there.
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