OS ways and Poor Health

Prinzessilein

Morning all!

The weather has taken a decided turn for the colder....was it only a few weeks ago that I was roasting overnight and looking at ways of building a burglar alarm in my bedroom??!!

I have had my flu jab...and reacted quite markedly...a couple of bouts of nausea and muscle weakness...still, it is better than actually getting the flu (and the non-responsive bronchitis that usually comes with it!)

I used my soup-maker to make a batch of curried sweet-potato soup...nothing is quite as comforting as a mug of home made soup!

Update on the ESA review...we got through to the DWP eventually....no F2F is needed...they asked my GP for a report and as a result the assessors have decided to send the whole thing straight to the decision maker...all I can do now is wait for the decision.

Wonky-Teacup...sorry to hear you don't feel up to a PiP tribunal...it really is a disgrace that the assessments are not made by people with an actual understanding of the medical conditions they are supposed to assess! (I know, the argument is that they are assessing the person - not the disability...they don't need to be specialists...but it sure would help them not to make so many mistakes!!!)...well done for trying to remain positive!

pollyanna_26

Hello dear friends . I've just searched for the thread and am putting it back on the front page . I've been ill and stuck in bed in the last few weeks . I'm going to read back to catch up and will post later . Hope you're all ok .
polly x

pollyanna_26

Prinzess I hope you've has a decision back now . I agree with your reply to WT . DLA worked using evidence from GPs , Consultants and other professionals involved in the patients care . My dd was assessed on paper from the age of 16 for DLA and the same years later for Incapacity . She did have her mobility raised to enhanced from low and her daily living which had always been high also enhanced but the whole process at the moment is too variable now depending on which person does the assessment . She was lucky to have an experienced nurse for PIP and a doctor for ESA but next time who knows .


I know good experienced former NHS Drs and Nurses who've left the assessors roles due to the pressures they were under . My daughter has a friend since school who has returned to nursing in the NHS after a stint as an assessor .


The positive thing is a lot of people are having their eyes opened now regarding what is happening in many ways to the safety net in whatever way it affects various people .


WT I'm sorry to read your news re the MR . You have to take care of yourself both mentally and physically so if you can cope for now without appealing you've made the wisest choice . Very soon there will be a challenge and investigation into what has and is happening so it's worth hanging on . Any news on a job yet ? Sending warm wishes to you and yours .
polly x

Onebrokelady

Wednesday2000 wrote: »

Some good news is that the rash I had on my legs is almost gone! I got a stronger steroid cream from the GP last time I saw him.:p

He also managed to p*ss me off about Fibro as he said that the best thing for me was to exercise.:mad: Doctors really don't seem to know what they are talking about with Fibro. The "advice" is completely unhelpful! Even when I exercise I don't feel any better as I feel okay one day and terrible the next.

Hi Wednesday,I've been using something called the Curable app,it a paid for subscription service but it works really well,I haven't bought a subscription yet becasue there is a free trial and so far just using that has helped with my Fibro

pollyanna_26

Onebrokelady wrote: »

Hi Wednesday,I've been using something called the Curable app,it a paid for subscription service but it works really well,I haven't bought a subscription yet becasue there is a free trial and so far just using that has helped with my Fibro

Hi OBL . That app sounds interesting .


Wednesday I think there's a problem when it comes to GPs and some illnesses . Ours has a very informed knowledge on hidden disabilities and is proactive . The holistic plan he put together for dd includes a physio who also knows exactly what is needed and it's proving helpful and never forced during a flare . How are the NHS MH sessions going ?


polly

Onebrokelady

pollyanna_26 wrote: »

Hi OBL . That app sounds interesting .


Wednesday I think there's a problem when it comes to GPs and some illnesses . Ours has a very informed knowledge on hidden disabilities and is proactive . The holistic plan he put together for dd includes a physio who also knows exactly what is needed and it's proving helpful and never forced during a flare . How are the NHS MH sessions going ?


polly

I've found it really useful in managing my symptoms,it hasn't cured me but it's made it more manageable,the ideas behind it are that the body feels pain in reaction to emotional trauma or repressed feelings,I've read up on a lot of the research and it all makes perfect sense,my symptoms started when my sister died and I've been I've been ill ever since,I know my Fibro symptoms are greatly aggravated by stress so I can see there is a strong link,it also suggests that people who strive to be perfectionists or people pleasers can also be affected by this problem,they think it can also stem from issues in childhood,such as having pushy parents or a family with issues such as domestic violence or other problems
My family dynamic is very mixed up and there are lots of problems,I was a disturbed and troubled teen who left home early to live with someone who really wasn't a very good person,I got pregnant at a young age but the baby was premature and I lost her at 7 weeks old......all these issues could have contributed to how I'm am now,it's very interesting when you start to look into it and see the links

pollyanna_26

OBL There are so many theories around Fibro it's really hard to pinpoint the reality . I had a good firm but fair 50s childhood my mum suffered from both Psoriasis and Fibrositis which forms have since been identified as Psoriatic Arthritis and Fibromyalgia . Looking back she probably had Osteo too . So my mum , myself and my youngest daughter which tends to point to genetics . Youngest signed up to genetic research and that has shown the markers .


There's a lot of science in it including Neurology and at present there isn't a validated cure . The consultant who diagnosed my fibro and some years later my daughter's is a world famous expert with decades od experience .


Re stress and other factors I know both myself and dd are worse under stress . My second husband was abusive and my health worsened back then . Dd had some bad involvement with abusers during her teens and twenties the damage from that has been slowly unpicked over the past year bit by bit .


All I can say is many fellow fibro people I've come across have hard and traumatic things in their past . Lesson Learned for example . Whether it being a carer or dealing with difficult or abusive situations it seems to worsen the health and lead to exhaustion .


I'm glad you're finding the app helpful and wish you well .


polly x

Wednesday2000

I think I said on here that I'm trying the Ashok Gupta programme at the moment. I'm starting the brain retraining programme tomorrow. I saw the testimonials and people said that it worked almost straight away for them. I'm kind of nervous that it won't work!

Onebrokelady wrote: »

Hi Wednesday,I've been using something called the Curable app,it a paid for subscription service but it works really well,I haven't bought a subscription yet becasue there is a free trial and so far just using that has helped with my Fibro

I haven't heard of that before, thanks, sounds interesting. I might try the free trial.

pollyanna_26 wrote: »

How are the NHS MH sessions going ?


polly

They are okay, nothing particularly helpful so far. It's just a group workshop before the individual therapy starts so probably just to make it seem like I am not waiting as long. There have only been three of us both times so it is a little strange to be in such a small group.:D

Onebrokelady wrote: »

I've found it really useful in managing my symptoms,it hasn't cured me but it's made it more manageable,the ideas behind it are that the body feels pain in reaction to emotional trauma or repressed feelings,I've read up on a lot of the research and it all makes perfect sense,my symptoms started when my sister died and I've been I've been ill ever since,I know my Fibro symptoms are greatly aggravated by stress so I can see there is a strong link,it also suggests that people who strive to be perfectionists or people pleasers can also be affected by this problem,they think it can also stem from issues in childhood,such as having pushy parents or a family with issues such as domestic violence or other problems
My family dynamic is very mixed up and there are lots of problems,I was a disturbed and troubled teen who left home early to live with someone who really wasn't a very good person,I got pregnant at a young age but the baby was premature and I lost her at 7 weeks old......all these issues could have contributed to how I'm am now,it's very interesting when you start to look into it and see the links

Yes, I think that is true. The programme I'm doing is the theory that your fight or flight response keeps going off inappropriately and you need to retrain your amygdala.

He said that many people get fibro/chronic fatigue after a long period of stress. I was stressed for a few years as my husband was ill and I was trying to do everything myself without any help. I don't have parents (well, I do have parents, I just don't see them) so I didn't have any support.

pollyanna_26

It's worth giving the nhs programme a fair trial Wednesday . I have read up on the Ashok Gupta programme . Something that concerns me is you try so many things one after the other or sometimes at the same time . That's your choice and if it helps fair enough but it does seem to involve a lot of effort and often cost . I wonder how you know just what is helping sometimes .


As I said in a previous post there is no validated cure for Fibro . There are ways to manage it although there will always be flares . Any treatment , meds or physio etc are available on the NHS in most areas . Both mine and dds are managed well but we are aware weather , sudden stress etc are triggers . The different areas of health and wellbeing here have worked wonders for dd this year with a plan which takes into account both the mental and physical aspects of pain and Ive benefited from that too .


Anyway I wish you luck and hope the course is of benefit to you . The pain physio , pain psych and mh counsellor have worked wonders here so that's the most important thing to us .
polly

Prinzessilein

Afternoon folks!

I am pretty much drained today...we had visitors, just family but it still saps what little strength I have!...and one particular family member has an irritating tendency to insist that I look and sound perfectly fit! (I know they mean well, but there is just a little undercurrent of 'so you can't be that bat really can you?!!...they get to see me maybe twice a year - and I am medicated to the eyeballs before the visit - they don't see the fall-out afterwards!)...don't get me wrong, I love my family to pieces, but just sometimes they can be SO annoying!

I managed to get one load of laundry done this morning...and that was about the limit of my energy for the day!...on a positive note, I can be happy that 'do laundry' can be ticked off the list!


As for the ESA assessment - the letter finally arrived last week...no F2F needed (as the phone call had suggested) and I remain in the Support Group. ...as it is ESA there is no duration of the award stated - unlike PiPs, they reassess ESA whenever they feel like it...I think it was 3 years since my last assessment, so hopefully I will have a similar respite from assessment this time (my PiP was a 10 year award)

Good luck to those trying that app...sounds interesting! I sometimes wonder if things like this couldn't be paid for by the NHS ...some authorities pay for Slimming World subscriptions! Why not a bit more help for those struggling to manage other conditions????

Bake Off is on tonight - so I hope I will stay awake long enough to enjoy that!...and dinner is in the fridge ready to be reheated (curry tonight...yum!)...I defrosted the freezer last week - so when my energy levels get up a bit, I will batch cook some soups and curries and restock it!