Upcoming Medical Assessment.

Hi Lisa, I am so sorry to hear of your predicament. When i was diagnosed with M.E. in 2011, I was only working voluntarily as i couldn't get a permanent job for love nor money.  I had to take 3 days off sick, and was told to leave and get myself better.  I am single and don't have children, so I had more to lose than you do - especially when you have children to support.  If i was you, I'd see my GP and ask him or her what they think? My problem is that I spend more days a week in bed than out of bed, so it would be impossible for me to get any kind of work - no-one would employ me for sure. It would be a great shame to have to lose your job, especially if you enjoy working there - those jobs don't come around very often. How about you ask your GP if you should work part-time for a while and see how you get on? I think you'd be entitled to working tax credits, but am not sure?  You'd have to check that first of course. Talk to your employers and explain your predicament - if you are okay with talking to them about this? Some employers try to work something out with their employees (good ones that is)so that the employee doesn't lose their job but can perhaps work around their illness. You are to be commended with persevering at work, and you are obviously a dedicated worker. I worked for over 38 years before i became ill, and did shift work for years and held down 2 jobs throughout the 1990's, but I still feel bad about not working.  I am in a catch-22 situation as I obnviously can't work and like i said before, no employer would even give me a chance. But whilst you are actually in work, try to use it to your advantage if you can? Would you be able to do any of the work from home for instance? Maybe you could suggest that to your boss, and keep reminding them that you really don't want to lose your job nor inconvenience them in any way. If you have a PC and internet at home, maybe you could do bits at home if you can't make it in? I have been looking for work from home as I find it difficult getting to and from places, as i don't drive. But I just can't find anything at all. But when you are in work, the boss might be able to sort something out for you both?  These are just suggestions and I hope that they help you in some way? Also, I truly hope that you don't lose your job or become worse.  Keep optimistic if you can - that's what always gets me through. Easy to say though i know. I think that your first best bet would be to talk to your GP.  Ask maybe if they can send you to a local M.E./CFS Clinic/Support Group - when I joined one in 2012, some of the women there were working and their bosses let them have time off to attend the sessions each week - maybe that's something you can ask your GP and then your employer?

Take care, best of luck, and i hope and pray that all goes well for you, keep your head up, and persevere with your GP until you get proper help. Try to enjoy your weekend. xx

Hi again, I am so sorry I meant to say - You have more to lose than I do as you have children.  Sorry my brain is like mush today!!

Hi,that's OK I didn't notice the mistake lol thank you for your lovely reply.sad thing is I only work part time as to work around my girls,I'm a carers assistant so no work to do at home :-( my manager is understandind ATM but not sure for how long,I'm signed off work for another week and can go back for few hours a day but I'm honestly not well enough to even do that as I keep feeling lightheaded and severe dizzy spells where my eyes are affected and I'm tired all the time and sleep whenever I can, I'm only 32 so young but I'm just not well enough to work,I'm waiting for aa appointment for a MRI scan so hopefully it will come through soon xx

Hi Lisa, it is so difficult isn't it especially when you have your type of job. My GP won't send me for an MRI scan, and I am not sure if they actually show anything?  But best of luck with it, and I hope it comes out in your favour.  Your kind of work needs so much energy too doesn't it. I wish that the Government would take our illness seriously and recognise it as the debilitating illness that it is. I have been fighting for years to prove that mine could be an under-active thyrois instead of M.E. - which can be treated with Thyroxine, but continuous blood tests come back as a '9' and they say I am 'borderline'. If I could have an MRI to my brain, it could prove a damaged Pituitary gland - which would explain my M.E. type symptoms.  I am saving up to pay for a scan, but it'll take me ages as I am out of work. I would give anything to be well again and get back into work before I retire (I am almost 56), and especially to shed the 5 stone I've put on through having to lie down most of the time.

In the meantime, good luck to you, and all the best with the MRI. The dizzy spells are so horrible aren't they.  I get them now and again - and have the bruises to prove it!!!!! LOL!!

Take care Lisa, and I hope you have family and/or friends who can support you physically and mentally, my lot have gradually come around to understanding my illness, and are pretty good at bad times.

I wish you well. xx

 

''Brain Differences in people with ME/CFS''

The study behind this headline used a specialised type of MRI scan to examine whether there were any differences in the brain volume and structure of 15 people with CFS, compared with 14 people without.

The researchers found the volume of white matter (brain cell nerve fibres) was lower in the group with CFS. There were also some differences on the right side of the brain in the nerve fibres that connect the temporal to the frontal brain regions.

These are interesting developments in furthering our understanding of CFS. However, the study only involved a very small sample of 15 people, and we don't know how representative they are of all people with the condition.

The design of the study is able to demonstrate brain features that may be associated with the condition, but it cannot show cause and effect. We also don't know the order in which events happened.

It's not known whether these differences could have led to the development of CFS (and if so, whether they were always present, or whether some other unknown factors caused them to occur), or whether these are new changes that have occurred since the people developed CFS.

The next step would be to try to understand how these differences are associated with the condition's developmen

Hi Beverley, thank you SO much for your kind words and reassurance. I have been to the CAB but they won't come with me, nor find anyone who can come.  I set out this morning at 9:40am for an appointment at my surgery for a B12 jab and a flu jab.  Then I had an eye test just up the road at 11:35am.  Not long got home now and I am extremely exhausted to say the least - but still people tell me I look well!!!!!

I have had these DWP Medicals in the past and i know what to expect.  I have been having vomiting attacks since 2011 and lately I have one per week - I truly wish i could have one of these attacks at the Medical, but I can't just do it, if only I could.  I don't know how people with Bullimia can make themselves sick, I find it very distressing.

My appointment isn't until 2:35pm on the 16th, and like now, I am usually about to drop at that time.  At first i thought I should ask them to change it to a morning, but then I thought that i look my worst by noon, so I would prefer them to see me at my worst.  My mum is 81 and has terrible hip problems (she had a hip replacement about 5 years ago) and knee problems too, but because she looks a lot younger, no-one stands up for her if the bus is full etc, and my sister who is 5 years younger than me, went through breast cancer the last 3 years (chemo etc), yet everyone told her she looked really good and well!!!!  In the past, I was told at a Tribunal that  I looked presentable and well-kempt and that I wasn't shaking or rocking backwards and forwards - I told them that I have M.E., not a mental problem.

Isn't it awful that you have to lie and make yourself look as grim as possible to make them believe you. I really don't like lying.  

Back in 2006 I had to call my GP out to see me as i was in dreadful pain all night, and my temperature was very high.  He said he'd come to see me at noon.  I actually crawled to the bath and somehow managed to crawl in to it.  I was rushed to hospital in emergency as my Gall bladder and stones were gangrene and i almost died!!!

That is the way I am, vane I suppose, but I was brought up to make the best of everything, and it's just the way i am.

I told DWP that I don't have any mis-matched clothes. It is the DWP who need to see psychologists isn't it!!!

I have to get taxis to and from the medical next week.  I think my best bet is not to wear any make-up at all, and wear the tattiest clothes to make DWP feel better!!!

Thank you so much for your help.  I love this site as everyone is so supportive.

I have a feeling that I have a fight on my hands, which I don't think I can handle.  But hey-ho, I'll wait and see.

In the past, I used to vote Conservative, but I loathe David Cameron and his cronies, anfd their policies. Hasn't he got a cheek cutting Working tax credits for people and telling them they'll just have to work harder!!!  If only he would do the same thing. He certainly doesn't work hard enough for his wages.

I SO wish UKIP would get in to power.

Thank you again for your help and advice. xx

Hi again,

You seem to have had a busy day there! Sorry to hear that your mum and sister have had a tough time too of late. Also shame that the cab can't help with regard helping find someone to go with you.

The DWP don't make it easy at all! And maybe going without makeup etc is the way to go? I attended a work based meeting with a friend who also has c.f.s/me yesterday, I wasn't really up to it myself and didn't have time for me up, but my friend looked dreadful! She'd not slept and was pretty flat. I spoke for her at times. She's been off work nearly 2yrs. The company had to terminate her contract, which she was kind of expecting. They commented on how bad she seemed. At other meetings I've attended, we've both made the effort as this condition won't take away our pride in our appearance but sometimes, I really dont have the energy. At those times, I put on a hat and hope no-one notices me!

Its such a shame we have to prove ourselves with this condition. The looking ok bit is really difficult to handle when you feel awful inside. Sometimes, I slurr so badly and stumble but, I think people just presume I'm drunk not that its part of "this"because i look ok still. Your vomiting as part of this must be awful, is that due to acid reflux?

I agree that the extra stress these assessments cause doesn't help with payback symptoms at all.

Today I am in rest mode myself as its been a bad few days. I managed trip to post office and a phone call. I've contacted adult services today to talk with a support worker, am meeting them next week. Part of me feels a bit sad about doing that as its admitting I cant do things but, I can't do things! Will see how it goes.

I really hope you don't end up with a fight on your hands and that it goes well for you next friday.

B