Hidden8 years ago

Good luck, these things can be trying hopefully you will get a sympathetic human instead of a cold robot.

RachelHNC in reply to Hidden8 years ago

Thank you!

They were running about 40 mins late and I nearly fell asleep in the waiting room! 😳 I suppose that illustrates the problem though! The assessment was only around 10 minutes at te most which surprised me. I was prepared for it to last a lot longer! (Up to 50mins, thee tree said)! I did find he put words in my mouth some of the time, which worried me a bit! Like, "You find it easy to talk to strangers", and "You can manage the stairs to your flat ok". He was typing as he was talking, so I presume he was typing his own answers to the questions! The first assumption was right but the 2nd varies drastically! So I had to correct him on that. He was quite dismissive though and said, "You can use the hand rail though, can't you?" Goodness knows how he knows I even have a hand rail! I do, but I may not have! Surely he can't make those kinds of assumptions? Overall he seemed pleasant enough, but the appointment I felt was very rushed and not thorough enough whatsoever. I do worry that this will lead to an innacurate report.

I can just see me having to go down the appeals procedure route 😒 I hope not though. Obviously I do want to be better and I strive every day to be a positive as I can be an make healthy life adjustments whether I can, but right now, my earth is far from fantastic and to be forced into work would be a nightmare for me.

How are things with you though? How long have you had ME?

Kindest regards, Rachel.

Reply (1)Report

Hidden in reply to RachelHNC8 years ago

I supposed I'm glad your ordeal didn't last long but how the hell are they going to assess a person in 10 mins?

I've been ill for almost two years and heading the same path you are on and it fills me with dread. I've been working all my life, and this is all new. To me it seems instead of them being there to help they seem to try and prevent the people getting the help!

We are seen as a job and as something to process through the filter that we are all mad keen to be on benefits instead of work!!

I would gladly live without a single penny in a box, (although would have to be warm I don't like the cold ), if it meant I wasn't ill.

I would wonder if these people had to spend a short time, (say a month) living in our shoes they would see the world a whole lot different!

Hope things go well for you, stay strong.

Reply (3)Report

ALKT8 years ago

first a proper interview by their own reckoning should take 45 minutes. second he should of asked the set questions on their standard form takes at least 30 minutes if your answers are short .and then there is their no frills laughable excuse of a physical test squeeze fingers lift legs . you should write in and complain immediately see citizens advice .because when they rush through like this they are not only harming their so called clients supposedly us but they are also defrauding the british taxpayer us again.how these companies keep getting contracts i do not know. been through this process 4 times now which of cause meant going through 4 appeals so far i have won iff you can really call the right to keep your benefits winning. best wishes.

Hidden in reply to ALKT8 years ago

As far as I can tell their remit is to keep as many people off benefits as possible, (save money and the Government can lie about figures - hence why these charlatans keep getting the contract). I have known terminally ill people who could barely walk to have been stripped of benefits only to have them reinstated after an appeal.

Personally I imagine the training to be something like:

"Right, you new to this so know all people you see are scammers and are robbing us the tax payer of money and it is up to you to make sure that does not happen, ask the questions and make it look less severe than it is - don't make it up but gently re-evaluate it, got it?"

"But what if they are really ill?"

"Well if they are really ill they will appeal it and we can give it to them then, hopefully they wont make a fuss and we'll do a good job"

"OK I'll make sure to stop them"

Now maybe I'm being very unforgiving but all info and experience points me this way.

Reply (2)Report

ukmsmi48 years ago

Hi Rachel.

From what you and everyone else here is saying, it just confirms what I have always thought. They just rush through the process and fill in what they want regardless of what you say. It's not a proper assessment at all, just going through the process so they can get their money from the government and then why should they care if their report is accurate.

I can't remember what the actual figures are but the high number of cases that get overturned on appeal just proves that they don't do the job properly in the first place. Even though I was ill enough to get a home visit for my assessment, I got my ESA but got put into the WRAG group initially. I was a bit green about these things and didn't realise I could or should appeal and was so keen to be well again that I thought I would give it a go. Big mistake! I spent 18 painful months trying to attend interviews and going through pointless tasks etc that did nothing but sap what little strength I had. I ended up with two big ME crashes about 5 months apart and ended up on anti-depressants. It was only when my GP intervened in a strongly worded complaint that they finally put me in the support group.

Be strong and don't let them bully you into anything you know you won't be able to manage (like I did). You are no doubt as keen as the rest of us to be well and back at work but know what you are and aren't capable of at the minute. If you need to appeal their decision try not to take it personally or let it phase you. They seem to treat everyone like this.

Perhaps it might be worth doing a little bit of research just in case so you are prepared for the appeal that you may have to go through. I keep hearing that the ME Association website has some good information on it as does "M.E. & Chronic Illness Benefits Advice Group", but that is a closed FB group which you will have to join. Easy enough to do though.

Good luck, hope you get the support you deserve.

Margaret.

RachelHNC8 years ago

Thank you so much for all your advice and support. It means a lot.

I do believe the decision will come back that I am capable of work. It is exactly as ou suggest though. I WANT desperately to be well enough to work. I feel useless. I am also a single mum and feel like my little man is missing out on the benefit of having a strong and positive male role model. I want so much to be able to teach him to swim, to teach him to ride his bike etc...I just can't manage it at the moment. I feel so terrible about it and so sorry for him. I do feel I am gradually getting better. The chest infection seems to e on the mend. I am far from 100% though. I know some of you reading this are in a far more severe state than I am. I am so sorry if I am coming across at all ungrateful or moany. I do recognise my situation could be a lot worse.

On a related but slightly different subject, I have an ex partner who I have been trying to reform a relationship with. He isn't sure he wants a long term partnership with someone who is ill. That makes me feel quite rejected and even more useless. He put a lot of pressure on me while we were together. I had 2 boughts of bad illness with a miscarriage and the death of my cat intertwined. Financially we were falling apart and I felt terrible. I seriously tried my best but it wasn't enough and eventually it broke down. The end of the relationship was awful. He was so resentful towards me and my son. I am now paying him back an amount every month. It's more than I can afford, but I just can't rest until I know it is equal. The relationship actually wore me down quite a bit. I am in 2 minds even now as to what I ought to do. I am not sure if he is actually contributing in some way to my illness. He is incredibly negative and cynical. It wears me down. He can also be incrediy loving and sweet. I have no idea what is right or wrong...

Sorry...slightly random waffle there. I do wonder if emotional stress is impacting in some way. Has anyone else had experience of this? Either emotional affecting physical or a relationship that ended because of the illness?

ALKT8 years ago

yes emotional stress has a severe impact on any chronic illness and your ex sounds like a typical person with an abusive personality turning everything around so you feel guilty.truly sounds like you would be better of without this person in your life.

ukmsmi48 years ago

Hi. Yes I definitely agree. Stress comes in all sorts of forms and always has much more of an impact on our minds and bodies than most of us realise. I have always believed that our bodies and minds are not two separate entities but two different parts of the same entity - us. It stands to reason that something that affects one will have a knock on affect on the other. And this is borne out if you look at most of the research that has been done on this condition so far, particularly the information that came out of the Abundant Energy Summit just over a month ago.

It seems there is no magic bullet (yet) for this frustrating condition but I am a firm believer that a lot of the trick to managing it is to get your mind in the right place, keep a positive attitude and eliminate as much of the stress as you possibly can. Easier said than done I know and we all achieve it in our own different ways, but it does help if you can do it.

I have to agree with ALKT your partner doesn't sound very supportive and that can be a big drain on this already debilitating condition that you just don't need. I know I myself am so lucky that my husband, despite or perhaps because of his own multitude of health problems, is very supportive of me. I know for a fact I would be in a much darker place if he wasn't and my health would be even worse than it is.

Please try and do everything you can to support yourself and if you don't get any help in that respect from a partner or family then there is always the support that your fellow sufferers can give.

Take care.xx

RachelHNC8 years ago

Thanks guys. Really helpful feedback and advice as always. Those of you with supportive partners, that's wonderful and lovely to hear. Even though I get far from that from my partner. It gives me hope that there are still kind and empathetic people in the world! X x X

ME658 years ago

Hi Rachel,

I have been in your position with a negative partner who was constantly putting me down and making me feel useless. My advise is to get as far away from him as possible. Obviously your son needs to have some contact with his father and that will have to organised but don't let him have any impact on your life. You are not useless, you are as valid as any other person on this earth. You owe it to yourself and your children to only allow supportive people into your life. They are out there but it can be difficult to find them when illness makes it hard to have any kind of social life but going back to an abusive partner isn't the way forward. It is hard for you right now fighting all these battles with your partner and the ESA but do try to stay strong and find voluntary support groups to advise you.

My son has only ever known a mum who lies down all the time. We muddled along together and although his childhood was very different to his friends he has turned out to be a well balanced caring person (now age 33!) so don't worry about what you can't do with your son, it's the time you spend together enjoying what you can share together that matters.

All the best and lots of love

RachelHNC in reply to ME658 years ago

Thank you so much for these kind and more importantly empathetic words.

Fortunately this partner is not my son's father. (He is just as negative for me, but in a very different way and I have zero contact with him other than to arrange and facilitate contact for our son.

I am currently practicing mindfulness actually and have downloaded a lovely book called The Little Book Of Cintentment. Have you heard of this? It's quite mind opening actually (although I do try to live my life in this mindful way anyway. It's really good for me to have a reminder every now and then on how best to handle life and make it as positive as possible! So, hopefully that will help.

You say your son has only ever known a mum who lies down 😢 Bless your heart. Truly. When you mention the importance of the quality time you do spend together and the things that you CAN do together, this makes me smile actually and the pressure I feel releases a bit. Your son sounds lovely and I bet you are a very proud mum and so you should be considering the health difficulties you faced whilst raising him. Thank you so much for your inspiration. You have no idea what it means to me to receive all this love and aupport. The difference between spiralling into depression and survival basically. Thank you. X x X

Reply (4)Report

ME658 years ago

So pleased to hear that you are practising mindfulness. This has made a huge difference to how I cope with this illness and life in general. I haven't come across the book you mention but if it resonates with you then it's the right one!

Have you heard of Ekhart Tolle? His teachings are brilliant and basically so simple. You can dip into his work on Youtube as lots of snippets from his talks are there as well as longer interviews. I find just listening to his voice so soothing. He is known for two main books - The Power of Now and A New Earth. Both require some concentration to read but I can honestly say I found his approach life-changing.

Happy meditating xx

RachelHNC in reply to ME658 years ago

Ooh yes 😊 I have heard of him. In fact I think I may have watched a TED Life Hack talk from him. Ok...fabulous! I will take a look on YouTube later this evening when I've finished my homework. I am studying Level2 counselling skills at the moment. It's been hard the last couple of weeks because of my health decline, but I am gradually building the work back up again and this is giving me something positive to focus on! Thanks for the suggestion! Much appreciated. X x X

Reply (1)Report

joannie19648 years ago

RachelHNC and those who have responded to her post, thank you as I have taken a lot from these helpful comments too. If you don't mind me hijacking the post briefly is there a magic secret to mindfullness and meditation. I have tried it in the past but can't concentrate as stuff is constantly in my mind or I fall asleep lol?

Jo x

ME658 years ago

Hi Jo

Pleased to have you join in

I'm afraid there is no magic secret only dogged persistence required!! The busy mind that chatters away all the time is our constant companion but it is possible to learn to quieten the chatter and rest in the space. The longer you can practise the more you will be able to find that still point and rest in the moment - no past, no future. But it's the practising that matters because it calms the mind and soothes the nervous system. Do have a look at Ekhart Tolle, he explains it so much better!

Rachel - Studying counselling sounds really good. Hope you get your level2.

There is also a website eckharttolle.com. I am signed up to receive clips and little reminders on staying in the Now.

Love and hugs